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Lizardacres
10-24-2014, 10:11 PM
Hi All,

I found this forum after my surgical consult this summer and I want to thank all of you for bravely sharing your stories, the good, bad and ugly. I initially thought I would just do the surgery and didn't want to know too much about it because I knew it would be hard and figured knowing all the gory details would only make me worry unnecessarily. But what the surgeon told me popped my happy bubble. He said I would need a fusion from T-1 to L-5, anterior and posterior and that it would take 6-8 hours and I would likely need at least 4 units of blood.

I was shell shocked after that, I really had no idea it would be that big of a surgery. So I turned to the internet and found you. And thought about it more. And did more internet searches with the names of local surgeons and the word 'BOMEX', which is our board of medical examiners and discovered that patients have died from this surgery here and one spine specialist even lost his license due to multiple bad outcomes.

So I realized that I needed to consider the surgeon very carefully, this is no gallbladder surgery that most surgeons do very well. I just saw a second spine surgeon, Bill Stevens and he told me yes, when I asked him if he thought surgery would be a good idea for me. I trust his ability, he does one and only one of these a week because he said it's long and exhausting. So I'm looking at probably being scheduled for January, but need a DEXA scan and another consult before I can get on the schedule.

I had a traction X-ray this week and it only improved my curve 10 degrees out of 70. So my curve is stiff and he says I have lumbar kyphosis which needs to be balanced. I'm so ready to do this, wish I could do this sooner but also secretly glad I get to have a nice Christmas with my family. Don't really want to scare my 31 yo daughter who also has scoli but lives far away now. Wishing I had done this 4 years ago when a different surgeon talked me out of it as I was premenopausal then which would have been in my favor.

Thanks for listening, I'm happy to have found you!
Liz

1687

green m&m
10-24-2014, 11:36 PM
Welcome to the forum Liz!

I think it's great you are doing the smart patient thing doing lots of research before you set the date. I ended up scrambling earlier this year seeking 2nd opinion when I should really have done that from the getgo.

You'll find incredible amount of help and information here, so much so that when you have your meeting with your surgeon for pre-op (when it happens) you may already know everything your surgeon tells you. At least, that was the case with me.

If you let us know where you live, folks will be able to chime in with names of surgeons close by you that are highly regarded in the community.

JenniferG
10-25-2014, 06:52 AM
Hi Liz, and welcome for the forum. This forum saved me from losing my mind when I was told I'd need T4 - Sacrum with pelvic fixation. I was the opposite of you, I needed to know every gory detail! I found the more I knew, the less I feared. I spent my waiting time getting fit and that helped with the nerves. I can tell you that I found the prospect of this surgery far worse than the actual surgery.

So ask as many questions as pop into your mind. Folks here are happy to help and at the same time, know what you're going through. Best of luck!

Lizardacres
10-25-2014, 09:09 AM
Thanks for your kind welcome, it means a lot. When I told my dad I was planning this surgery, he called his sister and told her about it and her response surprised him. She said that their dad and their dad's sister both had scoli (uneven shoulders), as well as herself. My dad had no idea! He knew that he also had the uneven shoulders and even told me that, unfortunately, he had given it to me but was shocked to learn that nobody had told him this family history. Family secrets can be pretty crazy!

Anyway, given that the female to male ratio is something like 8:1, and I have two direct male descendants in a row, it got me to wondering about the genetics. I wonder if certain genes are more likely to affect males and females equally. I'd be very interested in reading more about the genetics if anybody has any good references.

PeggyS
10-25-2014, 09:50 AM
Welcome, Liz!
I'm embarking on my journey right now! We left home (columbus, Oh) just 30 minutes ago to travel to St. Louis for my T3 - sacrum scoli surgery on Monday.
I'm SO thankful for this forum!
My new friends helped me:
1. find the 'right' dr & run from my local one. 2. learn from their detailed experiences. 3. ask questions 4.
figure out 'what the heck' to pack 5. there's more, but you get the idea!

I wish you the best for your journey & perhaps I can be of help ' from the other side'!

LindaRacine
10-25-2014, 01:03 PM
Hi Liz...

I'v been hearing for years that male scoliosis is more lethal than female scoliosis. I don't know if that's actually true, however, as I've never read any research on the topic.

I'm glad you found Dr. Stevens. When I read that the first surgeon was recommending T1-L5, I felt ill. Starting and ending at those levels is almost certainly a recipe for disaster.

Best of luck with your journey.

Regards,
Linda

titaniumed
10-25-2014, 02:39 PM
I'v been hearing for years that male scoliosis is more lethal than female scoliosis.

Iím still here and plugging along just fine.....(smiley face) This deserves its own thread as I think there are none on this topic. Do we have the advantage due to our bone integrity? or lack of osteoporosis issues? What are the differences from a surgical standpoint between males and females of different age groups?

Liz, I agree with Linda, if your going to do a full at age 55, take it the pelvis. You want to one stop shop.

I donít have much faith in disc integrity at our age, as we age. DDD is a major problem, and painful. My neck has been interesting science experiment lately.

I have also done a cholecystectomy, it was easier than doing my taxes.

How is the pain?

Welcome to the forum

Ed

Lizardacres
10-25-2014, 03:43 PM
Hi Ed, To clarify, at my 2nd opinion appt with Dr Stevens, he felt that T-6 to the sacrum would be likely. But we haven't finished with the work up yet, so no telling yet exactly what what he will want to do. Quite a difference from what the first doc suggested! I am resigned to fusion to the sacrum and agree with you that this makes more sense for me. Especially when you see my X-ray of L-5. I'll try and post it.

My neck has issues on X-ray so maybe this is why Dr Stevens wants the thoracic fusion lower; so the top of the fusion is well away from this area. I also have moderate cervical dystonia so there are forces pulling my cervical spine. He said he is concerned about this area when it comes time to straighten me out. Doesn't want the spinal cord compromised at this level. This is why I have to get a DEXA scan.

Honestly, I have Linda to thank for pointing me in the direction of Dr Stevens, she has mentioned him in more than one post and he is an SRS doc. I haven't seen much in the way of positive reviews for the Phoenix docs. I suppose I could go to CA but would rather not.

golfnut
10-25-2014, 11:48 PM
Liz,
Welcome to the forum. You will find this forum to be full of information, opinions, and tons of caring supportive people.

mabeckoff
10-26-2014, 01:56 AM
Welcome to the forum. Here you will find the nicest people and you will get your questions answered.

By the way, if you want to come to CA, I have one of the best surgeons for you

Melissa

jackieg412
10-26-2014, 08:29 AM
Liz, welcome to a great forum of friends and great information. We do learn a lot from our own experiences. I think this information is what helps the most. The ideas and suggestions allow us to come up with the questions for our own surgeons.I felt better prepared with this information.Jackie

susancook
10-26-2014, 05:02 PM
Welcome, Liz! Glad that you found a surgeon that you like who does scoliosis surgeries regularly. Don't fret about the fused to the sacrum bit. I really do not feel limited at all.

Ed's comment is very appropriate, unlike fine wine and cheese, women do not age well. Degenerative changes are in our future....it doesn't get better. Take your calcium and vitamin D.

Susan

titaniumed
10-27-2014, 12:12 AM
I donít know if there have been any other Cervical dystonia patients that have posted here.......you could try the search box. I can see why Dr S would want to stay lower at T6.....Liz, I did look at your x-ray and it looks like mine years ago,(Lumbar tilt at L5) also Jess has the same situation. You didnít answer my pain question, but I can imagine that you are having your pain events. I like using the word ďeventsĒ for specific 9 and 10 level major pain experiences. The crippling stuff....

I thought long and hard before committing and setting my date. It took many years of ďeventsĒ before I was ready. Of course, I had to have all my ducks in a row, the financials, insurance, work situation, expecting a long 2 year recovery, and hoping that nothing too bad as far as complications would happen....

In the end, it was all about my blood work. After my surgeon looked, he mentioned that I was in really good shape, I can tell you have been skiing your whole life.

He also told me, ďIt will helpĒ Which was the clincher.....my pain being through the roof, I was going to take any improvement....

People that have major pain seem to do much better with surgery....itís the ones who donít have pain that are not satisfied.

Ed

Lizardacres
10-27-2014, 02:57 PM
Ed, you noticed I skipped your pain question :-) The short answer is yes, the pain gets up to the unbearable range at times, but this is not exactly what drives my decision; it's more nuanced than that. To me the question is why do I really want surgery and why now?

The real truth is that my life has gradually been diminished starting in my late 30's when I was diagnosed with dystonia. Because it affects my hands so much, I got to where I couldn't function at work as I had a job back then that required a lot of writing and a computer was not a possibility. I received Botox injections in my arm, which helped enough to get by but I knew I needed to make a career change; I couldn't afford not to work!

I went to grad school, which became so difficult before the end as my dystonia progressed and my neck was a misery and the neurologists tried all kinds of drugs to afford me some relief. But of course they had the kind of side effects that make it hard to go to school. But I managed to graduate and start a new career.

It's hard to remember when my back started acting up as I thought the back pain was part of the dystonia. And anyway, the cocktail of drugs for my neck also helped the back pain. I do remember that at one point the back pain got so bad that I went to a new neurologist (after getting disgusted with the one I was seeing at Mayo, when he sent me for a psych consult without telling me why). He was to give me Botox injections in my back. But it was a strange experience- it hurt terribly when he injected and having received numerous Botox injections in the past, I knew this was odd. Next, I started feeling kind of wonderful and my appetite increased greatly within the week. I really think he gave me steroid injections so I never went back to him. But it did help. But I don't want steroids, too afraid of the side effects.

After that I just stuck with my PCP who is so wonderful and caring and believed in me. She provided any drugs if wanted to try so I spent about 10 years with gradually increasing back pain and the tools to manage my pain.

About 4-5 years ago, work became harder and harder. I was exhausted and was really unable to participate in my favorite activity, hiking, anymore due to back pain. I felt like I was totally letting my husband down because I didn't have the energy to do anything but work and even there I was feeling I was only about 50% which made me feel so guilty. I saw a surgeon around this time but he discouraged me from having surgery. I later found out he doesn't even do the kind of surgery I need.

This spring I was feeling worse and so started making the rounds. My life seems so diminished and limited, I would say I'm functioning at about a 30% level now. My feet are numb much of the time and I can only walk 5-10 minutes without wanting to lay down and take drugs due the pain. I need to work a minimum of 5 more years to start collecting my state pension, but I don't feel like I can make it the way I am now. Even if I could get disability, which I doubt, this isn't the kind of life I want.

My retired husband does ALL the housework and cooking to support me, but he wants me to travel and do stuff with him. I want this too but retirement seems far away and I just don't have the energy, the muscle spasms really sap my energy and make me fatigued. I'm such an out of shape couch potato and I hate it! I was always very fit when young.

So really it's a quality of life issue. Yes, I can take drugs, lie in bed and control the pain, but I'll take the odds on the surgery. If it works out it will be transformational. If not and I end up in a wheelchair, maybe I will be able to get disability and travel and at least know I tried to live my life up to my potential.

titaniumed
10-28-2014, 12:23 AM
So really it's a quality of life issue. Yes, I can take drugs, lie in bed and control the pain, but I'll take the odds on the surgery. If it works out it will be transformational. If not and I end up in a wheelchair, maybe I will be able to get disability and travel and at least know I tried to live my life up to my potential.

I understand.....Quality of life is something many donít understand unless they lose it. You have to struggle to know.....

I would ask about your cervical dystonia situation and how comfortable he feels with it....... Have there been other cases? Has he seen other cases? Can he communicate with anyone else for comparison, (SRS, UCSF, etc) A surgeons pow wow if you know what I mean. Would you use a neuro surgeon if you operate on me? I took my time in my hiring process, that I did. Multiple visits and discussions. Are you the right surgeon? Am I the right patient?

I am an RVíer.....I bought my 1st RV because of scoliosis and I must say itís the best thing l have EVER done!!!! LOVE IT! You can lay down on your own bed when you want, sleep when you want....of course, you get the idea. I also read RV blogs and check out where others have been and camped. There are also wheelchair RV people out there that do it also! I like to cook 5 star meals in 5 star locations....I can go on and on and on......Now, donít go nuts and buy a magic bus now...(smiley face)

RVing also gives you a really good reason to walk, and think, and recover....traveling also repairs the soul

Ed

Lizardacres
10-30-2014, 09:31 AM
My husband really wants an RV, but for now, anyway, this conversation gets an eye roll from me. :-)

Perhaps a little van someday, just big enough to sleep in. I, too am a little concerned about what will happen to my neck down the road after surgery as it seems like it would be vulnerable when everything else is fused. I have an appt Monday and he wants to go over all the extra studies that have just been done on my neck; side bending X-rays, and MRI. Also the DEXA I had done yesterday. The neurosurgeon, who was my firsts consult said my neck was OK for surgery, but of course I am concerned long term.

I am really surprised there are not more on this forum talking about dystonia. A quick google search reveals a plethora of articles linking the two and even suggests that scoliosis is a form of dystonia.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2899814/

jrnyc
10-30-2014, 06:31 PM
i think if you search for "rohrer" on this forum, you may
see that she discusses it at length...her forum nickname is "rohrer"
but since then, she received a new diagnosis...
of Charcot Marie Tooth.

jess

Susie*Bee
10-30-2014, 07:41 PM
There have been others who have written in the past on CMT, but I don't think that is what you are referring to. Here are three who started threads using CMT:

http://www.scoliosis.org/forum/showthread.php?15220-Charcot-Marie-Tooth-(CMT)&highlight=charcot+marie+tooth+syndrome

http://www.scoliosis.org/forum/showthread.php?8306-Charcot-Marie-Tooth-Disease&highlight=charcot+marie+tooth+syndrome

http://www.scoliosis.org/forum/showthread.php?8306-Charcot-Marie-Tooth-Disease&highlight=charcot+marie+tooth+syndrome

Best wishes in your search.

jrnyc
10-30-2014, 08:53 PM
i thought she started out asking for a discussion of
dystonia...that is exactly what rohrer started out
writing about...until she got the new diagnosis....

this is one small part of a post by rohr from september 2014

" The physiatrist talked about unkinking my neck. But he's for sure not big on surgery, either. But the dystonia is putting so much strain on the nerves, blood vessels and muscles there because of the altered anatomy. It's near the brachial plexus. If I weren't able to get relief from this, I don't know if I would eventually lose my arm because of the blood flow issue. .."

jess

Susie*Bee
10-30-2014, 09:59 PM
I stand corrected. I thought you were talking about the CMT. I apologize for not having searched further back and for misunderstanding. I, too, have been diagnosed with CMT so have that on my mind. I am sorry, Jess.

jrnyc
10-30-2014, 10:16 PM
all is OK...just a simple mis-communication....

wishing you a peaceful restful and warm
wkend...gonna get colder in northeast...
and changing the clocks...dark out earlier....brrrrr

from jess...and Sparky

Susie*Bee
10-30-2014, 10:36 PM
Thanks-- and same to you, Jess. It's going to get much colder here in the midwest also. Brrrr. And we are at the exact line that edges the eastern/central zone (but are eastern) so it gets ridiculous here -- 5 minutes to central zone.

titaniumed
10-30-2014, 11:06 PM
My husband really wants an RV, but for now, anyway, this conversation gets an eye roll from me. :-)


Oh boy, Be careful on mentioning the word ďRVĒ around your husband.....He just might come home with a Boeing Dreamliner 787. (smiley face)

I have always believed that scoliosis is caused by a nervous system disorder. Its neuro,....a motor control problem. At one of the scoliosis meetings years ago, I asked the wrong questions, didnít word it right, and didnít get the answer I wanted. I discounted it. This article explains a lot.

Of course many of the articles and studies are old, or older studies, this has been thought of by the experts for a long time now....

My nervous system was completely shot right before my surgeries. It felt like an electrical short circuit, sort of like a grounding out, and felt like my 12 volt battery only had 1 volt left.....I donít know if any of the posters have felt or feel this way, but itís the way I felt. Surgery helped some with this, but I still feel the fatigue. Brain abnormalities.....

Thanks for posting this Liz...I think you hit the nail right on the head.

Ed

Susie*Bee
10-31-2014, 09:29 AM
Well, I am going to try this once more, to help bring up Rohrer's (and another) threads on dystonia... they start with the most current and go back to when she was first describing her problems. Liz, I don't know if they'll be of any help or not, but perhaps you can see that it has at least been written about here on the forum. The first thread -- please: there is no need to read the first part of as it has a lot of unnecessary squabbling in it.

http://www.scoliosis.org/forum/showthread.php?8179-Quackwatch-and-Schroth/page10&highlight=distonia (starting around post #132 - I guess you'll have to go back one page, I goofed on where to start)

http://www.scoliosis.org/forum/showthread.php?10538-I-have-some-imaging-CD-s&highlight=i+have+imaging+CDs+to+share

http://www.scoliosis.org/forum/showthread.php?13346-Muscle-Dystonia&highlight=i+have+imaging+CDs+to+share

http://www.scoliosis.org/forum/showthread.php?10439-Bad-news!!!&highlight=i+have+imaging+CDs+to+share

Ed, as always, thank you for gently getting us back on topic. (Blame an old lady for trying to be helpful but having her head in the wrong place!) Getting too old to help, I think!!!

Liz -- best wishes as you continue your journey and search for knowledge and help.

PS-- sorry for the highlighted yellow words in the threads, but that is what happens when you do a search...

I should have said #2-4 are by date with the most current listed first... those are Rohrer's

gardener
10-31-2014, 01:22 PM
Oh boy, Be careful on mentioning the word ďRVĒ around your husband.....He just might come home with a Boeing Dreamliner 787. (smiley face)

I have always believed that scoliosis is caused by a nervous system disorder. Its neuro,....a motor control problem. At one of the scoliosis meetings years ago, I asked the wrong questions, didnít word it right, and didnít get the answer I wanted. I discounted it. This article explains a lot.

Of course many of the articles and studies are old, or older studies, this has been thought of by the experts for a long time now....

My nervous system was completely shot right before my surgeries. It felt like an electrical short circuit, sort of like a grounding out, and felt like my 12 volt battery only had 1 volt left.....I donít know if any of the posters have felt or feel this way, but itís the way I felt. Surgery helped some with this, but I still feel the fatigue. Brain abnormalities.....

Thanks for posting this Liz...I think you hit the nail right on the head.

Ed

Ed,
I wonder if you can elaborate on the electrical short circuiting idea. I experience what I call buzzing where I feel a rapid twitch/ tremor take over in certain muscle groups for what can be an extended period (hours.) it is relatively painless but it does diminish the overall power of that muscle for a period of time. I also have a sense that some small stumbles (I'm really clumsy) can leave my electrical system short circuited. If I mention this to a family member they give me pretty funny looks so I keep it to myself now :) but I wonder if this is part of that collection of symptoms related to scoliosis.
I have not had surgery but have 62T and 71TL curves with progressing rotation and cervical kyphosis that gives me a pretty good view of the ground where I'm walking -so I shouldn't stumble as much as I do. Just curious...

Lizardacres
10-31-2014, 03:49 PM
Hi Gardener,

It sounds like you are having something called fasciculations, which are common and can be completely benign or a symptom of any number of neurological disorders. If you see a neurologist they can do nerve conduction studies and EMG and tell you which kind you have if you are concerned. My journey with my dystonia started with a neurologist and I was really lucky because he knew right away what was wrong with me, although he did do the tests I listed above. The nice thing about seeing a neurologist is that they schedule long appointments and spend a lot of time asking questions and listening. At least that was my experience. Probably has something to do with the kind of patients they see :-)

I would want to know what was causing this if it was getting worse or if I was having more new symptoms. After I was diagnosed with dystonia, it did progress for a few years, then plateaued (is that a word?). It hasn't gotten any worse for more than 10 years and I haven't had any new symptoms, but I do have periods where it is worse, even terrible, and periods where it's not that bad. And stress ALWAYS makes it worse, as does physical activity. Hope you get some answers.

Lizardacres
10-31-2014, 07:18 PM
Oh boy, Be careful on mentioning the word ďRVĒ around your husband.....He just might come home with a Boeing Dreamliner 787. (smiley face)

Ed

I thought maybe the Dreamliner was an RV, but it's really a Boeing airplane - you really lost me there. Once my husband took a one year old car to the dealer to get a dead battery replaced and came home with a new car - so I wouldn't be terribly surprised if he just went and bought an RV, he can be rather impulsive that way.

But actually, I had a question for you; somewhere in this forum I read that you spent $1000 in massages before your surgery. I get weekly massages and feel sad about having to give them up when I have surgery. It's my Friday lunch time treat (bribe to self) for making it through another work week. Did you ever go back to getting them? This question is for anybody, not just Ed. I know it wouldn't feel the same as my person bends me around as she does this and it feels so good. Not sure how it would be if you had residual numbness and metal in your back.

jackieg412
10-31-2014, 07:28 PM
My surgeon said no massages . This is even after years since my first surgery. I am unsure how it would feel but when I have had pt. They do it some and it feels good. But they know better about what to do that can help and not hurt.

titaniumed
10-31-2014, 11:47 PM
Suzie bee, That was nice of you to throw up Rohrerís dystonia posts, I know she spent countless hours researching and trying to figure out what was happening to her.

Gardener, I agree with Liz. Fasciculationís are classic for ALS patients which my father passed from. His symptoms were muscle twitching, and tripping. Michael J Fox mentioned that his left pinky finger was twitching back in the 80ís. Ozzy Osbourne was diagnosed with Parkins syndrome, not Parkinsonís disease. His story was very interesting because he saw all these experts who gave him multiple meds and he decided that it wasnít working out, and finally found the right doctor and now he takes only one medication. I call this the Ozzfest doctor tour. Its nice to have a correct diagnosis right off the bat, but this usually takes time. It took 2 years for my fathers diagnosis, and from a known ALS expert.

Neuro science is extremely complicated....symptoms can match, but pinpointing isnít as easy as it might seem. Self diagnosis is fruitless, you cant assume anything. Seeing a specialist is a start.

If you see a scoliosis specialist, mention the twitching and the tripping....these are things they need to know about. If they suspect something, they should either test themselves or divert to an associate. After all the EMGís Iíve done, I have no clue what value they have had, Iím sure if I had anything, one of the specialists would have said something.

Liz, I used the dreamliner as an example of what not to do. Pilots begin in a Piper cub, they donít start with a 747.....You want to start not necessarily smaller, but cheaper. These RV finance guys will finance anything....and owners can carry a note forever without any equity whatsoever. It can be a financial disaster and these guys donít care.

On the massage question, I spent around $500/mo for around 6 years, or 36K. I loved my massages.......and found that they are better right after a hot soak. It has to be done immediately after you are completely boiled through.......I did most of mine at the famous Steamboat Hot Springs. If it was good enough for Mark Twain, its good enough for me. (chuckle, chuckle) I have probably spent over $100,000 maintaining my scoliosis through the years.

After my surgeries, I found that massage on my back felt strange over the hardware and that my old pains of scoliosis were gone. Massage is all about feeling better, and maintaining the pain, but I have little pain now. I guess itís a sign of success, the acid test, when all of this comes to a halt. My massage therapist was devastated, I was a good customer..... Massage should be done gently on scolis, with no leverage moves.

After my surgeries, the tension release in my back was like a large weather balloon popping. I can relax now.....After my long 2 year recovery it was worth it.

The problem with successful scoliosis surgery is that you find out that everything else is shot. Of course I have to laugh about this now.

Ed

Lizardacres
11-01-2014, 09:37 AM
Gardener,

I'm thinking you must like to garden- that is my big time hobby and how I spend my weekends, although it is increasingly difficult and painful. I've been spending the fall making it as self care as possible for my husband. No annuals now, just perennials as I prepare for surgery. Most everything has it's own drip line. Still have work to do this month though. What do you grow? Or I could be completely wrong, maybe it is your name!

Back to neurologists, if you decide to see one, before you make an appt, ask about what their specialty is. Some are generalists, the one I saw had been around forever and specialized in electro-physiological testing and just general diagnosis, but some specialize in epilepsy, or MS, or movement disorders which is mostly Parkinson's but includes dystonia.

jackieg412
11-01-2014, 01:23 PM
Hi Liz, I am a gardener. I did make things easier right after surgery. Like I had large planters built so I did not have to get down so much. It has been overv5=years since my major fusion and I still can't stay down on the ground but I get up and down . I make it work because I like to do it. It still isn't pain free but I just keep changing position all of the time. It all gets done eventually. After surgery , we still adjust our actions to fit what we need. I think you realize that surgery improves things but it still makes some things hard to do. If you love gardening as a hobby it is still possible, but not right away. I live in Illinois with trees that she'd their leaves and that is a big fall ordeal.

Lizardacres
12-18-2014, 07:12 AM
My upcoming surgery is starting to feel real; I have my pre-op clearance visit today. But what is really on my mind is how you deal with a pet that sleeps with you (in my case a large house cat who is a big baby). Now that winter is here and the temp here has dropped into the 60's (please don't hurt me), Freddie doesn't just sleep on the bed, but has to be right up against me hard all night (poor thing must be freezing).

The problem is that he pushes me all over the bed as I try to escape this hot, heavy cat and I end up in some rather contorted positions. If I shut my door, he will cry all night. Fortunately we have long summers here and this is only a winter problem but my surgery is in Jan.

Anybody have experience sleeping with pets post surgery they can share? If I kick him he will go, but come back as soon as I go back to sleep.

Rise
12-18-2014, 06:34 PM
My upcoming surgery is starting to feel real; I have my pre-op clearance visit today. But what is really on my mind is how you deal with a pet that sleeps with you (in my case a large house cat who is a big baby). Now that winter is here and the temp here has dropped into the 60's (please don't hurt me), Freddie doesn't just sleep on the bed, but has to be right up against me hard all night (poor thing must be freezing).

The problem is that he pushes me all over the bed as I try to escape this hot, heavy cat and I end up in some rather contorted positions. If I shut my door, he will cry all night. Fortunately we have long summers here and this is only a winter problem but my surgery is in Jan.

Anybody have experience sleeping with pets post surgery they can share? If I kick him he will go, but come back as soon as I go back to sleep.

Hi- I had my surgery in July (T9-sacrum) and our 3 spoiled dogs and 5 spoiled cats were a concern. As far as the cats (they pretty much all sleep with us during the course of an evening) I found that the only problem was if something startled them and the would leap across the room and over me. They did cause me to flinch more than a few times and scared me in the process (fear of breaking something was very real for me). In the end, I was fine with them.

You might want to layer some extra blankets that your cat can snuggle into that's not right on top of you. Just a thought. Also, the meds made me cold so you might welcome the furry critter :-)

RisŽ

mabeckoff
12-18-2014, 11:07 PM
I sleep with two cats. When they got pushed out of the way, they just moved into another position. I am recuperating now from SI joint surgery and when I nap, they are very comfortable nap friends with me

Lizardacres
12-19-2014, 08:11 AM
Thanks for your feedback. I like having Freddie around for naps, He is very comforting. I just worry that I will unconsciously move away from him and end up in a crazy pretzel position, like I do now. Usually I wake up because I get into a painful position. I can really only lie in one position now and sleep, on my right side. All other positions are really uncomfortable. It sounds like after surgery most sleep on their back, but maybe I am wrong about this. If I am on my back I won't be so inclined to roll away. I'm probably overthinking this, just don't want to bend or twist while sleeping.

titaniumed
12-19-2014, 01:04 PM
Sleeping was very hard for me in my immediate recovery due to pain....Maintaining any position was also difficult and I found myself moving often.....Sleep or lack of it becomes extremely valuable and you will take any chance to try to get those winks in.....Cats will move when you do, and will understand that you are hurting and in pain. They probably understand this better than humans do. My cat was trained to sleep at my feet most of the time however one time I awoke with him on my chest with his face around 1 inch away from mine. This startled the heck out of me.....with him just staring at me with intense cat thoughts.....(mice, birds, a slice of roast beef, theory of relativity)

One thing that was problematic in the beginning with me was the positioning of myself on the bed before laying down. If I was too close to the headboard, I would lay down and hit my head on the headboard. Its impossible to move up or down the bed after surgery, it seems the only thing we can do is to log roll and log rolling out of that position takes a bit of effort. If you go sideways on the bed, its not easy getting up out of bed. I have a medium tempurpedic and it wasnít soft enough......the foam topper doubled my sleep time....I would highly recommend one, latex foam 2-4 inches thick no matter what mattress you have. The bed also needs to be dead flat. With a full fusion, if the bed is hammocked and inch, you will feel it. If itís a king and its hammocked, sleep sideways on that bed. Beds almost never hammock sideways for some reason....

I didnít have a cat when I did my recovery but I think they would be good company. Squatting becomes valuable for getting down to feed the cat or empty the dishwasher....Do this with one hand on the counter for extra support.....

Having an electric blanket handy would be a good idea since we get cold while on meds....I donít know what would happen if Freddie started kneading the blanket and hit one of the wires..... Donít worry, its low voltage and would be a minor cat issue. (smiley face)

Ed

mabeckoff
12-19-2014, 01:58 PM
My kitty had kneaded my electric blanket and nothing has happened to either the cat or the blanket.

Lizardacres
12-20-2014, 09:00 AM
My kitty had kneaded my electric blanket and nothing has happened to either the cat or the blanket.

That made me laugh. Actually, I was thinking along the same lines and have been trying an experiment in the evenings this week. When I get home from work, even though my retired husband is home during the day, Freddie stays glued to my lap as much as possible and I don't want him to feel rejected if I don't always feel up to this after surgery. Would somebody please explain to me why if you take a cat and dog of the same diameter that the cat weighs approximately 3x as much?

Anyway, I put a heating pad out on the sofa next to my recliner and my smarter female cat figured out right away that this was the best seat in the house, so I figured it wasn't going to help me with Freddie as she is rather possessive. By the third night, however they were taking turns and right now as I sip my coffee, instead of sitting in my lap and making me spill my coffee all over my white robe permanently covered in coffee stains, Freddie has voluntarily chosen the heating pad and is dozing. First time ever I have had my morning coffee in peace.

After Xmas I'll move it to the foot of my bed and see if he takes to it there.

Ed, I hear you on the latex topper. I have 9" of pure latex to sleep on and the top layer is soft and I just replaced the top layer as the soft latex breaks down faster than firmer layers. This mattress is the only reason I can sleep. The way my lumbar kyphosis sticks out and my spine is rotated I need something very forgiving to cushion my curves. The latex is supported on wood so it cannot sag.

mabeckoff
12-20-2014, 12:50 PM
Glad that the electric blanket might have helped you somewhat.

Lizardacres
12-30-2014, 12:08 PM
Had my final pre-op visit with the surgeon's office yesterday, but I met with the PA who assists during surgery instead of Dr Stevens. She went over in great detail what to expect. I will be getting cobalt chrome instrumentation as it is stronger, will not be getting a brace, will be fused from T4-sacrum with one or possibly two osteotomies, to be determined during surgery. They will use BMP sparingly, during the anterior surgery only at L4-L5. Also, was told I have a 50% chance of going to rehab for a week or so after surgery with a max of five days in the hospital.

I'm not sure how I feel about going to rehab. I'm such a homebody and it would be great to be back in my own bed. But I'm trying to keep an open mind and my husband is in favor as he thinks the PT would be helpful. I wonder if the decision to go to rehab is really a way to get you out of the hospital in five days and still give you care. That would not necessarily be a bad thing - I think of Fifa who really wasn't ready to go home after five days. If anybody has anything positive or negative to say about rehab, I would be most interested to hear your thoughts. It's only about 15 minutes from our home, so my husband could spend as much time as he wants with me.

I'm feeling a little melancholy today and starting to feel anxious off an on about the upcoming surgery. My son just got on a plane to go home after spending xmas here and we had a lovely last day yesterday. We went to an Italian deli for lunch with my parents where half the people were speaking Italian and gesticulating wildly. It felt like we were in Europe! Then we drove out to the desert and went for a walk. I'm getting ready to go outside and finish cutting back my roses for spring, even though it is a little early for that. If I don't do it now it won't get done and here, it is a January job, so it's really not very early to be doing it. Bare root roses are in the nursery now.

Liz

green m&m
12-30-2014, 02:54 PM
It's odd to me that you've been told you'll be in the hospital for maximum of 5 days. Not sure how they expect people to get discharged in a specific time frame, everyone is so different.

I guess rehab may be a way to extend inpatient care w/o being in the hospital. For what it's worth I was in the hospital for total of 8 days, including the day of surgery. The delay in discharge was due to my bowels -- if I had made enough poop I have been discharged 2 days sooner.

It could be the hospital has a policy in place because of past experiences in dealing with insurances not paying after the 5th day?

PeggyS
12-30-2014, 04:35 PM
I went right from the hospital (8 days) to intensive, in-patient rehab for 2 weeks. I was 400 miles from home and a little bit lonely b/c my husband went home, due to his back issues during my stay. I would gladly do rehab again! At 2 months post-op, I KNOW I'm much farther along in my progress! A lot of that has to do with building confidence in what I could & couldn't do. I had PT & OT. OT helped me with the practical stuff: showering & dressing. Also, OT focuses on the upper body with strengthening & correct posture. I have lots of bad habits to un-learn!

I'm currently receiving in-home PT & OT. My family dr made the request & surprisingly ins approved!

Rehab isn't for everyone, but it was good for me. My ins only wanted to pay for the type of rehab that's in a nursing home - only 1 hour a day! No way! My dr appealed & got approval for intensive rehab, which was about 4 hours a day.

My 8 day hospital stay is still being questioned by ins. They only approved 5 days, saying the extra days were medically unnecessary. I wasn't informed of that while I was in the hospital. Bills & ins payments are trickling in . . .

I'm glad you're on this forum - the info is so valuable!

Rise
12-30-2014, 08:46 PM
I was fused T9-sacrum all posterior. I spent 8 days in the hospital and my insurance company didn't question any of it. I had the option of going to rehab but decided against it. I had a visiting nurse and pt/ot person come to the house one time each. PT and OT told me I didn't need it (actually said that was very unusual). Going into the surgery physically strong was a huge plus. Work those legs! Home nursing care really wasn't necessary as my husband was happy to take care of me.

My suggestion is to do what makes you comfortable but you really don't need to decide until after surgery. See how you feel. There's not a whole lot you can do PTwise in the early stages and as far as OT goes a lot of it is common sense based.

Good luck!

RisŽ

jackieg412
12-30-2014, 08:55 PM
I was told right at the start that I would be in the hospital 5 days. Four of which were in intensive care. I then went to inpatient rehab. And they were great. I got better care in rehab than in the hospital. But I do live alone.

titaniumed
12-30-2014, 10:11 PM
Liz,

5 days is too soon especially after an A/P. I would plan on rehab just in case you need the shots.

I was in for 10 days and then they wanted me to go to re-hab. Since I was tired of playing doctor and having a noisy roommate, I went home and my surgeon ordered the nurses and PT people to come to my home everyday. This is a cheaper option, and believe it or not, I was trying to save my insurance company money. What a concept.

I kinda ran out after they pulled all the hoses on the 9th day and was not weaned to orals. I was NPO ,no food by mouth, had an ileus, had a meal and a BM. I had to wean home alone to OXY which was tough because I didnít have the option for a shot. I was a shot begger. The injectables are the ticket.....4 seconds to heaven. The IV Lortab is especially powerful, its better than morphine. After you get used to the good stuff, you have to come down which isnít easy..... I was a junky for 10 days.

I also felt the melancholy leading up to my surgeries, I think we all do. It was a long 34 year wait for me, out of time, out of control pain levels, and I couldnít back out.

I didnít have any lists, the hospital told me not to bring much since they were not going to be responsible for theft. I brought my cell phone and a change of clothes in a shopping bag....Have your hubby bring the things you need on a daily basis, it wont be much. Chapstick after a few days.....Hospitals donít have chapstick, this really blew me away....

Release and put your trust in the professionals that do this every day. Remember that you always swim with the current, never against the current.

You will do fine.

Peggy, good to hear your doing well. Just in case, remember that there is a state insurance commissioner in each state. I had to use Nevadaís once....... they police the insurance companies. Worked like a charm....and its free.

Remember to love your nurse and your state worker!

Ed

PeggyS
12-31-2014, 08:46 AM
Thanks for the info, Ed! I wasn't aware of a state insurance commissioner. I hope I don't need it, but my ins co seems to have do a denial before they do an approval! I'm carefully monitoring all the paperwork.

Lizardacres
01-02-2015, 06:22 PM
It does seem as though it's common practice among those who recently had surgery for the insurance to pre-approve a 5 day stay. That doesn't mean that you couldn't get approved for a longer stay once admitted, but it might mean your doc has to be proactive in getting it approved or you will have to fight to have it paid for afterward if it was not approved. I wonder for you Peggy, since you knew ahead of time that you were definitely going to rehab that they would need to keep you in the hospital until you met the criteria for discharge to rehab. I have no idea what the criteria are for rehab but obviously you would have to be stable. I suspect they will end up paying up for your extra days. It's not like you refused to go home when asked.

I don't know how the reimbursement for private insurance works (which I have), but for Medicare, the hospital is paid a set amount of money for each diagnosis code the patient has (DRG). So there is a huge pressure to move people out and start discharge planning on admission as the hospitals can easily lose money if people stay beyond the usual length of stay.

Peggy or anybody, did you receive any injectable pain meds in rehab? Or were you weaned to oral prior to d/c to rehab? Like Ed mentioned, weaning to orals quickly is really rough. When I went to my pre-op appt, I asked a lot of questions about pain control as I have had surgery before and know that morphine and Percocet are not good drugs for me. Morphine just doesn't work very well, although I suspect they didn't give me enough because it drops your blood pressure and mine is on the low side to begin with and Percocet makes me do really inappropriate things (like dangerous). I found out they don't make IV Demoral anymore (sad face), too bad, as that worked much better for me. So I will be getting IV dilaudid, which I have not had before.

I still can't believe they think 5 days is enough. With having a staged procedure, that means I would go home on my 2nd post op day after surgery #2. I think rehab is in my future. Do they have nurses on staff there?

leahdragonfly
01-02-2015, 10:20 PM
Hi there,

those are great questions to ask about pain control. It is frequently helpful to have a family member or friend who can advocate for you when it comes to pain control.

I am surprised you were told IV demerol is no longer made. I am a hospital nurse and we have IV demerol on our shelves. Dilaudid is very potent and effective. I think you will find it is much better than demerol!

Best of luck and let us know how things are going.

green m&m
01-02-2015, 11:06 PM
I had IV dilaudid. Worked well, made me itchy as heck. I needed constant IV anti-itch meds while on IV dilaudid.



OH! I wanted to add. This is important, make sure you take your pain meds to a pharmacy you have prior history with.

I had just moved before surgery so I took my big amount pain med scrips to new branch of big chain pharmacy. They flat out lied to me and said they didn't have any oxycodone. It's hilarious thinking about it, 24hr big chain pharmacies tend to have higher amount of drugs in stock vs normal business hour ones. In hindsight they felt uncomfortable -- new client, bit script, looking relatively 'pain free' (no one paid attention to the walker...)

I had to goto three different ones before one near my home would fill it.

jackieg412
01-02-2015, 11:14 PM
I found much better care at the rehab center than the hospital. They were quick to respond. Yes they were RN. I saw the rehab doctor every day. He was contacted at times to adjust meds. Or order other care. I was off of IV and rehab monitored fluids just like the hospital. I was on or a l pain meds and had a 50 fentanyl patch. Once that was in place and the body absorbed it ,I found it very effective. In addition to more help with moving than the hospital was able to do. Find a good inpatient rehab in your area. It is not at all like a nursing home. They do decide who to take as a patient. You have to be able to keep improving while there.

fifa
01-03-2015, 04:08 AM
My upcoming surgery is starting to feel real; I have my pre-op clearance visit today. But what is really on my mind is how you deal with a pet that sleeps with you (in my case a large house cat who is a big baby). Now that winter is here and the temp here has dropped into the 60's (please don't hurt me), Freddie doesn't just sleep on the bed, but has to be right up against me hard all night (poor thing must be freezing).

The problem is that he pushes me all over the bed as I try to escape this hot, heavy cat and I end up in some rather contorted positions. If I shut my door, he will cry all night. Fortunately we have long summers here and this is only a winter problem but my surgery is in Jan.

Anybody have experience sleeping with pets post surgery they can share? If I kick him he will go, but come back as soon as I go back to sleep.

Hi, there -

I can tell you what I did. I have a 15-year-old West Highland White Terrier who weighs about 22 pounds. He loves nothing more than to snuggle up as close to his human as is possible. Hubby and I like to sleep at different room temperatures, prefer different mattress firmness, etc. When the scoliosis pain and my ability to get comfortable while sleeping increased about four years ago, I bought a Tempurpedic mattress with the articulating frame that raises the head and foot (and also has a massage option, which I rarely use because it sounds like an airplane is taking off nearby....seriously, the whole house vibrates). Anyway, in the instructions with the bed, it said not to use an electric blanket on the mattress. I hadn't done so up until I came back from the hospital. For some reason (maybe the meds??), I tend to freeze all the time. The temperature in my room right now is 75 degrees and I'm under the electric blanket, which is set on high, a down-alternative comforter, and a small fleece blanket to cover my arms and shoulders while I type.

So, the Westie has a tendency to want to sleep next to us, and he also has a tendency to "throw" himself against us when he changes positions. He doesn't care which one of us he sleeps with - sometimes it's me, sometimes daddy. (smiley) Daddy solves this problem by using a body pillow so the dog only "thinks" he's right up against his daddy. I've gone for the evil alternative...I keep the blanket on high all the time, and frankly, the dog gets too hot during the night to stay as close to me as he would like. (evil smiley face) I love him to death, and that little fella literally hasn't left my side since I came home from the hospital. I also make sure to leave him a cool spot with his favorite blanket up near my head so he has somewhere to go when he gets too hot. He spends the night rotating from hot place to cool place, and it doesn't bother me because he's not butting up hard against me anymore. That first night I came home, when he settled in for the night and threw his backside against my fresh incision, I knew something had to be done. (smiley)

So I suggest creating a really warm spot and a really cool spot and seeing what happens. Otherwise, the body pillow buffer works very well for my hubby.

Good luck, and good luck with your upcoming surgery. Gentle hugs to you!
Fifa

Lizardacres
01-03-2015, 11:26 AM
I love Westies, I'll bet he is adorable! He sounds like he is about the same size as Freddie and has the same habits. Wants to be as close as possible, especially at night. Thanks for sharing your experience, I felt silly bringing it up but it is a worry. It's not cold enough here to use an electric blanket, so I don't have one. Freddie actually prefers to crawl under the covers if he can and sleep next to me. He does not like to sleep next to my husband. That is where our other cat sleeps. I try and keep the covers tight around my neck so he can't get in as it makes it harder to get away from him and traps him if I try and push him away.

I need to put the heating pad on the bed and see what happens. I kind of forgot about it as we had visitors here for xmas and I had put it away. Thanks for your kind wishes. I hope your life calms down and you continue to heal. I feel really fortunate that I have had the last two weeks off work to de-stress, treat myself well and get some things done. Next week is back to work on Monday and I'm actually glad as it will be crazy busy and keep me focused elsewhere. I have five employees I need to work with to ready them for my departure and do their annual evaluations.

leahdragonfly
01-03-2015, 12:09 PM
I want to second what green m&m said about getting your post-op pain meds filled---I had surgery at a large university hospital 2 hours from our house. My husband was turned away by the Safeway pharmacy in Portland when he tried to fill my discharge prescriptions. We made the miserable 2 hour drive home, and he dropped me off then went back to the pharmacy in town (also Safeway, not our usual one but the closest). They refused to fill it and told my husband he would have to take it back to Portland (two hours away!!!) to get it filled. He came back empty-handed and I called Safeway in a hysterical outrage, in agony and now shaking hard from the start of withdrawals because by then I was quite overdue for my next dose. I was within minutes of having to go to the local ER. Once I impressed upon the Safeway pharmacist what kind of surgery I just had he told me to send my husband back to the pharmacy and they would fill it. I can not begin to tell you what an unpleasant and avoidable experience this was.

My advice is to have your family go out and fill your discharge prescriptions and have them in hand before you leave the hospital. What happened to me shouldn't happen to anybody.

Best of luck in keeping busy and getting things squared away at work. It is really good to keep busy as you get closer to surgery.

PeggyS
01-03-2015, 08:05 PM
I had a morphine button in the hospital, but I couldn't remember to push it! I was on oral meds before going to rehab.

In rehab., most of the nurses would come & find me in the PT room when it was time for pain meds. I was seen by 2 doctors each day. Meds were adjusted & tests were ordered, as needed. I used a 'note' app in my iPhone to keep track of when & what I took.

My prescriptions were filled at the hospital pharmacy before we left. When I ran out of meds after being home for a few weeks, my surgeon's nurse faxed & called our local Target Pharmacy (400 miles away).

fifa
01-04-2015, 08:54 AM
I love Westies, I'll bet he is adorable! He sounds like he is about the same size as Freddie and has the same habits. Wants to be as close as possible, especially at night. Thanks for sharing your experience, I felt silly bringing it up but it is a worry. It's not cold enough here to use an electric blanket, so I don't have one. Freddie actually prefers to crawl under the covers if he can and sleep next to me. He does not like to sleep next to my husband. That is where our other cat sleeps. I try and keep the covers tight around my neck so he can't get in as it makes it harder to get away from him and traps him if I try and push him away.

I need to put the heating pad on the bed and see what happens. I kind of forgot about it as we had visitors here for xmas and I had put it away. Thanks for your kind wishes. I hope your life calms down and you continue to heal. I feel really fortunate that I have had the last two weeks off work to de-stress, treat myself well and get some things done. Next week is back to work on Monday and I'm actually glad as it will be crazy busy and keep me focused elsewhere. I have five employees I need to work with to ready them for my departure and do their annual evaluations.

Hi,

I wrote you a giant post last night, but as has happened numerous times on this forum, I hit some key or did something that made it disappear. Since Iím lying flat and typing on my back using the laptop, I just gave up. Iíll try to post it again in my own thread Ė it had to do with insurance and stupid Barnes sending me home too soon with an obvious ileus. Thank God that is over. Thanks, Ed, for the advice to write in Word and paste it over. BRILLIANT!!

For not too much money, PetSmart and other places sell heated pet warmersÖlittle heated pads for dogs and cats. Our Westie loves his. That might be of help to you if you donít want/need a full-on electric blanket. Since we lost our other beloved Westie four years ago, we have discovered that our remaining Westie really likes to sleep covered up. He doesnít burrow under the blankets or anything, but we have a bedtime ritual (yes, heís spoiled and deserves it). So, I straighten out the bed and get all the blankets where I want them and turn on my electric blanket. Even though he prefers to sleep at my lumbar area, I make him his own place next to my head. He sleeps on top of all of my covers, and then I have a little thin fleece blanket that he knows is his, and I cover him up with it. Itís a small $5 fleece from Walmart probably four feet by four feet square. Once we go about the bedtime ritual of making ďhis place,Ē he canít wait to get into it. This is his ďcoolĒ placeÖthe one by my head where he can sleep and not bother me. Once heís settled (heís knows weíre making ďhis placeĒ and canít wait to get into it), when he settles in, I cover him up with his tiny light fleece blanket. He rarely moves all night long with this method. If he moves during the night, the first thing he does is stand up and shake, and the sound or his collar wakes me. Shaking during the night means he needs to go outside, so we do that and come back to bed. Thatís when heíll head straight for the ďelectric blanket spot." Thatís probably too much info - sorryl

The heated pet warmers are sturdier than a heating pad, so they canít be ďkneadedĒ through as easily. Also, the temperatures are not as hot as a heating pad, so there is much less risk of burning your buddy while they sleep. I fell asleep on one once and got blistered pretty good. I think now theyíre made with an automatic off feature so that doesnít happen.

Anyway, good luck with your surgery and your bed buddy. My fella definitely knows something has changed and a little more ďtentativeĒ with me since Iíve come home. One of the worst parts of my recovery so far is not being able to pick him up and love on him like I used to. Hubby brings him to my lap so I can hold him, but it isnít the same. He doesnít understand why I donít pick him up anymore , but heís handling things fine and Iím so happy to have him with me.

Stay well!. Iíll post my ugly Barnes ďtoo earlyĒ discharge story under my own thread. I donít know how old you are, but if Medicare is involved, they have to inform you twice in writing that you have the right to object to being discharged if you think they are booting you too early. Ask for your care coordinator (some places call them discharge planners and others call them social workers) to bring you the form if for any reason they are wanting you to leave and you are not ready. I donít think non-Medicare patients have the same option. I apparently didnít.

Take care and try not to worry. About four days before my surgery, I realized there was little else I could do or try to control, so I gave up and left it to God (or fateÖwhichever you prefer). There was freedom in giving upÖin knowing that I had done everything I could do, and now all I had to do was get through the surgery and recover. The bills are going to comeÖyouíll get the care and drugs you need, and youíll make it home to all your beloveds where the real healing can begin. You can't change much of what is about to happen - you just have to "cope," and you can do it!! Just hang in there and use the forum as much as you are able. I guarantee there is someone out here who has been through whatever you are experiencing. (big smiley)

Take care and keep us posted. I go back to work Monday, so I may not be on as much in the coming weeks, but will try.

Fifa

Lizardacres
01-04-2015, 10:32 AM
Your suggestion to get a pet heating pad came at a perfect time. Last night I moved the heating pad to the bed. The female cat loved it and slept on it all night and Freddie stayed glued to my side. This morning Freddie decided it was his turn and after a big squabble they both ran off. Obviously I need another heating pad. I ended up buying a Pedzzzpad online and this does look a lot better than a regular heating pad. For one thing it only turns on when the pet lays on it and it never gets warmer than 102, which is a typical cat body temp. Also has a chew proof cord. Thanks for the suggestion! I have a tiny blanket left over from when they were kittens, I think I'll go and get that out, too per your suggestion.

My goal this week is to stay well. Flu season is in full swing here and one of my employees called out with it Friday. I'm carrying hand sanitizer and using it everytime I touch anything in public, but mostly trying not to go anywhere I don't have to. I've had a flu shot but the shot this year is not a good match for the most common circulating strain. It would be a real bummer to have surgery cancelled due to illness.

There is no question you were discharged too soon due to your ileus which resulted in whole lot of misery for you. It serves as a warning to us all to be proactive and speak out if we are not ready for discharge. As Linda said, the insurance approves a certain number of days to start, but this can be extended if warranted (and requested) by your surgeon. You sound a lot stronger now and hopefully will have smooth sailing from here.

I can't believe you are going back to work already! I had to go back and see when you had your surgery. You are not even 2 months post-op. Please don't push yourself and take care.

Liz

Lizardacres
01-13-2015, 07:55 PM
Today was my anterior fusion. I don' remember the surgeon speaking to my husband postoperative but I was told that my L5 was so mis-sharpen they could only use half a cage at one level but a full cage at the next level. The nurse said I'm not using much dilauded but I'm not having a lot of pain. The vascular surgeon said he wouldn't cut muscle, which seems kind of crazy. Sure wish I could eat and have a cup of coffee LOL

jrnyc
01-13-2015, 08:25 PM
to Liz and fifa
keeping you both in thoughts and prayers for
uneventful...(from this point on)....recovery....
i won't even comment on places that send patients
home too soon....
Liz....i hope your trip home from hospital is as smooth as is humanly
possible...and your recovery as uneventful as can be.

so glad you both have 4 legged family to watch over you and be there for support...
sometimes 4 legged folks are so easy to tell what is going on....
because sometimes they just know...
sometimes they just seem to KNOW what 2 legged people often need explained thru words....
sometimes our 4 legged family does not need any words of explanation at all.

wishing you healing and pain free days to come...
jess...and Sparky (still healing)

Lizardacres
01-13-2015, 10:13 PM
Thanks for your kind remarks, I am missing Freddie. The surgery today was the easy one, from a recovery point of view. Round two is Thursday.

jrnyc
01-13-2015, 10:27 PM
good luck, Liz
i am amazed you are able to post here...
thinking of you until you are home, healing,
with Freddie by your side...

jess...and Sparky

LindaRacine
01-13-2015, 11:40 PM
Today was my anterior fusion. I don' remember the surgeon speaking to my husband postoperative but I was told that my L5 was so mis-sharpen they could only use half a cage at one level but a full cage at the next level. The nurse said I'm not using much dilauded but I'm not having a lot of pain. The vascular surgeon said he wouldn't cut muscle, which seems kind of crazy. Sure wish I could eat and have a cup of coffee LOL

I doubt any good vascular surgeons are cutting abdominal muscles for ALIFs. The muscles are split, which puts you at much lower risk of ending up with an incisional hernia.

Happy healing.

ksmom0611
01-14-2015, 10:03 PM
Good luck tomorrow! Will be thinking of you and sending healing thoughts your way. My turn is next Wednesday. We'll be healing together. Talk to you on the other side!

titaniumed
01-14-2015, 11:57 PM
i am amazed you are able to post here...


Me three...

Liz, sounds pretty good so far.....your doing great!

(Been trekking around the country of Colombia and trying to follow between spotty internet.)

You guys hang in there....

Ti-Ed

PeggyS
01-15-2015, 09:35 AM
Sending prayers, Liz.

jrnyc
01-15-2015, 06:31 PM
Liz
it is Thursday nite and i am hoping surgery went well
and you are in the care of excellent nurses who are taking
good care of you...
thoughts and prayers that you feel better soon.

jess...and Sparky

Lizardacres
01-22-2015, 01:28 AM
I'm on the other side now and decided to come home instead of intensive inpt rehab. My husband has been my guardian angle and mother hen. I almost died in the hospital from narcotic OD. Had to have narcan twice which is so unimaginably unpleasant. He is keeping great records now. Too tired to write. Could NOT have done this wihtout hm

PeggyS
01-22-2015, 06:29 PM
So glad surgery is over - welcome to the other side! It sounds like your husband is taking good care of you. It sure must've been scary to over dose on narcotics, in the hospital!

golfnut
01-22-2015, 06:58 PM
How scary! There is no place like home, especially since you have a devoted husband to take care of you. Good luck with your recovery.

Lizardacres
01-25-2015, 09:34 AM
Follow up appt showed a increase of 2.5" in height, that is taller than my height at maturity! I was really hoping for 2" but this is even better. I was really too out of it to ask coherent questions, so I would love to hear your best post op questions.

Liz

titaniumed
01-25-2015, 12:46 PM
I think that my 10 day post op questions had to do with the dressing, keeping it clean, when to change, and so forth. I was taking hot soaks in a deep tub for pain, and then showering after using an antibacterial soap only. I didnít use any other products. Keep wounds clean and keep an eye on them, this is muy importante. Ask about your incisions if in doubt.

I also switched from Oxycodone to Percoset at that time since Oxy wasnít cutting the mustard. Perc is Oxy with Tylenol in it.

Mt staples also came out around the 2 or 3 week mark.....

Keep notes on meds, BMís, food intake, sleep etc......

Hang in there Liz, your doing the hardest part right now....Do short walks often even if its only 50 feet.

Ed

Irina
01-25-2015, 02:37 PM
Follow up appt showed a increase of 2.5" in height, that is taller than my height at maturity! I was really hoping for 2" but this is even better. I was really too out of it to ask coherent questions, so I would love to hear your best post op questions.

Liz

2.5" is great! You must have gotten a good correction, Liz. Congratulations on being on another side!

Lizardacres
01-25-2015, 05:02 PM
Can't wait to get copies of my films to scrutinize and post here. According to my husband, my curve improved from about 70* to about 30* lumbar. I ended up needing only two units of blood which made me very happy. I'm finding it hard to do anything but sit straight up or lie on my side to watch tv - would appreciate any other suggestions!

PeggyS
01-25-2015, 08:34 PM
Wow, Liz! Taller than ever - what a surprise! My surgery added about 2.5", too - I would've needed 5" to get back to my young adult height.

I'm SO impressed that you're posting! And that you can focus on watching a movie! It sounds like you're doing great!

Irina
01-25-2015, 10:09 PM
Can't wait to get copies of my films to scrutinize and post here. According to my husband, my curve improved from about 70* to about 30* lumbar. I ended up needing only two units of blood which made me very happy. I'm finding it hard to do anything but sit straight up or lie on my side to watch tv - would appreciate any other suggestions!

Browse internet to check new clothes that will fit you right now, but don't buy anything untill you can think clearly :-) No shopping under influence, only window shopping.

Lizardacres
01-27-2015, 09:29 AM
I love your thinking! All my life I've bought the loose shirts to hide my hump and uneven hips. Dresses never fit as I was too short waisted. You bet I'm planning to shop for some sexy new clothes. I'm surprisingly swollen around the middle right now. Not eating a lot but my skin is tight. Don't know if they fill you up with air during the alif but it's the least of my worries now.

Had the doc switch me off the Percocet yesterday to Vicodin as the hallucinations were driving me nuts. I am guessing the Vic is not as strong as I am really hurting this morning. I still also take OxyContin. It's hard to get the meds right.

My husband is super excited I have cut back on the stool softeners, I was so paranoid after Fifa's story about the 10# sack of potatoes that when I hadn't had a bm by discharge, I made it my mission to have one ASAP once home. A couple double doses of miralax, a ducolax suppossitory and a full bottle of mag citrate made him extremely glad I had stocked up on baby wipes. Oh, and I forgot the fleets enema. He had to put me on the shower chair, lol. I didn't mean to use everything but I kept adding stuff until things started to happen. I'm getting by well now with a double dose of miralax in am and two senna at night. He asked me to throw out the extra bottle of mag citrate, but I hid it just in case.

lduran
02-02-2015, 03:16 PM
Liz, I have been following your story, Fifa and Peggy's. I am due to have surgery for the first time in the next couple of months. Glad to see that you are coming along and recovering well. The part of the pain meds scare me as I try not to drink pills no matter how much paid I have.

Lizardacres
02-02-2015, 10:17 PM
Hi Iduran and welcome to the forum. What specifically bothers you about the pain meds? I don't know what kind of surgery you are contemplating or if you have experience with any previous surgery, but I really don't think the surgery I had would be possible without them for at least a few weeks. I'm about 2 1/2 weeks post op now and am just able to start cutting back some of my doses from 2 to 1 pills at a time (Vicodin). I also still take an OxyContin at night.

I pretty much don't remember much at all from the week I was in the hospital, when I was on mostly IV dilaudid and Valium and according to my husband that is a good thing because I was pretty miserable. I think it was the dilaudid that bottomed out my bp and caused them to give me Narcan in the ICU, which immediately undoes the action of the narcotics which causes severe pain. But this has happened to me after other surgery when I had morphine so it is not specific to any particular narcotic. My bp is naturally low anyway.

I went home on Percocet and OxyContin, which give me hallucinations so I requested to be switched to Vicodin from Percocet even though I don't think it is quite as strong. Please speak with your surgeon at a preop appt re your concerns about meds. The problem is that there will be multiple docs at the hospital who write your orders for pain meds, so your wishes may not be communicated.

The first week home was rough as it was hard to find a comfortable position anywhere but this week is better. I definitely notice when the pain meds are wearing off, the places that are not numb still have sharp pain, like a knife wound. The pain meds are very helpful still.

Feel free to ask specific questions.

Liz

Lizardacres
02-03-2015, 11:19 AM
Wanted to show off my pic from 17 days post op. Have no X-rays yet but we don't walk around with X-ray vision anyway. The tape finally fell off and this pic is post a long hot shower.

My scabs are not nearly as red now, more dark purple. Funny how the bottom is so much neater than the top. Don't know if it is because different people closed these sections or if the top just gets more wear and tear from using your arms to position yoursel, wash hair, etc. Would love to hear any comments from others re: how their incisions healed.

I can't believe my lumbar hump is essentially gone, and it was big. After the first anterior surgery, I would feel my back and it felt so flat, so the anterior surgery must have a lot to do with this. I am really pleased with the outcome so far. The pain along my lumbar curve is gone as is the pain in my sacrum and hips. The main pain I am having now is at the top of the incision, I guess because it is not numb and I am still having a lot of muscle spams in my back, which come and go and move around. But no nerve type pain.

I don't have pain sitting in hard chairs but riding in the car is awful and I really avoid it. I feel like I sit like Lady Mary now (Downton Abby).

My abdominal incision is much more healed than the back and not feeling nearly as lumpy as it did at first, so I guess their is hope for a decent scar. I do feel as though I am losing muscle mass in my legs, but what are you going to do at this point.

golfnut
02-03-2015, 06:55 PM
Your back looks great! Even at 4 years postoperative, i still occasionally feel my my back where the rib hump was and am delighted it is gone. My, how I hated it and was so self conscious! Don't worry - you will regain your muscle mass. I think all of my muscles atrophied but eventually they got back to normal. I am glad you are doing so well.

fifa
02-04-2015, 01:42 AM
I'm on the other side now and decided to come home instead of intensive inpt rehab. My husband has been my guardian angle and mother hen. I almost died in the hospital from narcotic OD. Had to have narcan twice which is so unimaginably unpleasant. He is keeping great records now. Too tired to write. Could NOT have done this wihtout hm

Oh, Liz - so happy to hear your surgeries are over. Even though I haven't been posting lately, I've been thinking of you and praying for you every day.

Also, to you and Jess, yes, I started back to work, but only part-time and am working from my bed. (sly smiley) My job is such that I don't really have to be there anymore to work - I'm a fiscal/accounting person now after my medical career, and fortunately have better bosses than at the hospital. They just want me well ASAP, so they are agreeing to whatever it takes. I didn't know until maybe a week or so before surgery that my doctor would not release me to go back to work for twelve weeks - I only had enough paid time saved up for two months. Once I started back part-time, I could use the vacation and sick I accrued during the two months off. It's too hard to explain, but yes, I'm working between 20-30 hours per week flat on my back here from home, and using 10-20 hours of vacation/sick to compensate.

Also, to you both, I filed a complaint with Patient and Family Relations at Barnes Hospital in St. Louis about my early discharge. I got copies of all of my records and all of my radiology films plus reports when we were up there a few weeks ago, and my standing plain films done the day of discharge (EDIT - the films were done on the 13th - two days before discharge) mentions the ileus. The collection calls are coming (I have until March before they turn them over to a collection agency), but I've told them that they will be paid one way or another by then. I've also told them they need to write off what I owe them (a whopping $575) - the same department at BJC collects for both Barnes and Boone Hospital here in Columbia (Barnes owns Boone). I told them the second hospitalization wouldn't have been necessary if someone had paid any attention to what I was trying to tell them and show them (hubby says it looked like I had swallowed a basketball). So, I got mean when the radiology report clearly mentions the ileus that I myself saw on the photocopies of the films I was discharged with.

Patient/Family Relations is blaming my doctor, which is very upsetting, so they must file the complaint against the attending physician, as he is "in charge" of my care. I told her she also needed to including the nursing staff and the care coordinator (typically an RN who is a social worker who sees to your discharge planning). My husband even spoke to the nurse on Thursday who said there was no way I should be going home on Saturday, plus he waited 1.5 hours to speak to the care coordinator about the same.

So, I got a five-day stay because that is what the insurance would pay for and no one noticed that I had an ileus or they would have extended my stay.

I've told both Barnes and Boone that if they don't write off the copays that I owe them, they will be hearing from my attorney (who actually drove me to Barnes and stayed with me for two days - she's my best friend) and I would be suing them for MUCH more than a couple of copays. The ambulance ride from St. Louis to Columbia was $2,200, which I would not have needed had they fixed the ileus before discharge. I could not sit up - I was that huge, and I could not wear the size 2X (bigger than I needed) sweatshirt I wore to the hospital.

Anyway, I digress. If you have Medicare, you can appeal your decision should they want to discharge you before you are ready. You must sign that form twice. DO NOT HESITATE TO MAKE A FUSS!! Ask for the head nurse, your doctor, the patient relations person, anyone. Don't leave quietly.

Hang in there. If I can help in any way, let me know. Sorry I haven't been around much lately. Work has worn me out. Everything wears me out. (smiley)

Praying for you!

Fifa

fifa
02-04-2015, 01:57 AM
Can't wait to get copies of my films to scrutinize and post here. According to my husband, my curve improved from about 70* to about 30* lumbar. I ended up needing only two units of blood which made me very happy. I'm finding it hard to do anything but sit straight up or lie on my side to watch tv - would appreciate any other suggestions!

Good grief, Liz, I can't even sit up now, and I'm nearly three months out. I mean, I can't sit up for very long. LOL The majority of my problem, the really severe part, was my lumbar spine. I have two cages, one at L3-4 and the other at L4-5. I don't know how much height I've gained, but did gain some. My friends have noticed and I don't have to get all tippy-toed to kiss my 6'5" hubby anymore. Also, I needed a third "short" rod in my lumbar area which was dominoed (piggy-backed somehow) over to the long rod on the left. I'm fused from T11 to the sacrum with pelvic fixation.

To nearly OD twice is just unthinkable. What an awful experience!

I, too, would have been lost at home without my husband. He monitored every med, food, BM (which there weren't many!), and even set alarms and got up in the middle of the night to give me doses of things.

My best advice to you would be to very closely monitor your bowel movements, especially if you are taking the large amounts of narcotics it seems everyone gets when they go home. Don't wait more than a couple of days without going. After the ileus and having to be readmitted to fix that, I've now had four fecal impactions, which are very unpleasant. The fecal matter is too big to "pass" and has to be removed manually. Get yourself a stimulant laxative that is also a stool softener (I like Peri-Colace) plus I also use milk of magnesia every two days if things haven't "moved." I tried natural remedies first and was on a prescription stool softener, but I wasn't eating or drinking enough, so be sure to monitor all of those things. Anyone who has had an ileus or a fecal impaction/bowel obstruction will tell you it is horrible.

Also, some of those meds may take you to hell and back. I was an ass to my husband on numerous occasions, especially when it was med time. I also was a sobbing mess, again, when it was med time. I don't know what I would have done without him.

Sounds like you are doing great. Just rest and heal. Don't be surprised if you are at all ends of the emotional spectrum all at once, and don't be surprised if you are discouraged that you are not progressing fast enough (I sure have been). Just hang in there and realize it doesn't happen overnight. Just today, I raised myself up out of a chair without using my arms to "push" myself up. I couldn't believe it.

I'm glad to hear you are doing so well. So happy for you!!

Very gentle hugs,
Fifa

fifa
02-04-2015, 02:09 AM
I love your thinking! All my life I've bought the loose shirts to hide my hump and uneven hips. Dresses never fit as I was too short waisted. You bet I'm planning to shop for some sexy new clothes. I'm surprisingly swollen around the middle right now. Not eating a lot but my skin is tight. Don't know if they fill you up with air during the alif but it's the least of my worries now.

Had the doc switch me off the Percocet yesterday to Vicodin as the hallucinations were driving me nuts. I am guessing the Vic is not as strong as I am really hurting this morning. I still also take OxyContin. It's hard to get the meds right.

My husband is super excited I have cut back on the stool softeners, I was so paranoid after Fifa's story about the 10# sack of potatoes that when I hadn't had a bm by discharge, I made it my mission to have one ASAP once home. A couple double doses of miralax, a ducolax suppossitory and a full bottle of mag citrate made him extremely glad I had stocked up on baby wipes. Oh, and I forgot the fleets enema. He had to put me on the shower chair, lol. I didn't mean to use everything but I kept adding stuff until things started to happen. I'm getting by well now with a double dose of miralax in am and two senna at night. He asked me to throw out the extra bottle of mag citrate, but I hid it just in case.


OMG - I laughed out loud at that but should not have because it certainly isn't funny when it happens. I think you were smart to stock up. Just keep a record and don't let yourself go (and I mean NOT GO) for more than a few days. I did the same thing, though - I used so much stuff to keep it from happening again that I was going every hour or so. That was miserable, but not going is so much worse... Also, when you're on oxycodone and all that stuff that you're on (narcotics/valium/muscle relaxers/whatever), it is hard to think clearly even when you THINK you are thinking clearly. I kept adding like that, too, but I was too high to try to track it myself. Let your husband manage your meds, and track your intake and output, too.

Good call on hiding the mag citrate. You never know and can always toss it later.

Your buddy in toileting,
Fifa (LOL)

Oh, shoot, and before I forget - I also have lost 30 pounds since I came home from the hospital (all those days of not eating....ugh). Anyway, you may lose weight, too, so don't be surprised if you are wearing different sizes. Just the change in height may be enough to lose a dress or pants size. Just window shop for now for a few months would be my advice....

fifa
02-04-2015, 02:22 AM
Wanted to show off my pic from 17 days post op. Have no X-rays yet but we don't walk around with X-ray vision anyway. The tape finally fell off and this pic is post a long hot shower.

My scabs are not nearly as red now, more dark purple. Funny how the bottom is so much neater than the top. Don't know if it is because different people closed these sections or if the top just gets more wear and tear from using your arms to position yoursel, wash hair, etc. Would love to hear any comments from others re: how their incisions healed.

I can't believe my lumbar hump is essentially gone, and it was big. After the first anterior surgery, I would feel my back and it felt so flat, so the anterior surgery must have a lot to do with this. I am really pleased with the outcome so far. The pain along my lumbar curve is gone as is the pain in my sacrum and hips. The main pain I am having now is at the top of the incision, I guess because it is not numb and I am still having a lot of muscle spams in my back, which come and go and move around. But no nerve type pain.

I don't have pain sitting in hard chairs but riding in the car is awful and I really avoid it. I feel like I sit like Lady Mary now (Downton Abby).

My abdominal incision is much more healed than the back and not feeling nearly as lumpy as it did at first, so I guess their is hope for a decent scar. I do feel as though I am losing muscle mass in my legs, but what are you going to do at this point.

Oh, LOOK HOW STRAIGHT YOU ARE!!!!! (HUGE ALL CAPS SMILEY!!!)

You look fantastic. The top of my incision was weird, too, and the scab took forever to fall off. It was a very thick, sort of multi-layered scab. Don't know how to describe it, really, but it was over an inch long and really thick with layer of layer of skin. It was really weird. It was the last scab to go and bothered me no end (it was right under the bra strap - ugh). I didn't know it had finally come off - found it in the bed and couldn't imagine what it was.

I cannot believe how well you are doing, how straight you are standing, and how much you are posting! Nearly three months out, I don't feel like doing much. I don't want to ride in a car or sit really anywhere. I'm walking nearly every day, but my stamina isn't much and I'm exhausted afterward. I have to rest (lie down) after taking a shower. Getting dressed seems to take forever. Today is the first good day I've had in about a month. I had two good days in a row last month, and of course did too much and had to add some pain medicine back in that I had weaned off of.

You go, girl!

Fifa

Lizardacres
02-04-2015, 09:24 AM
I can't believe you were able to wear a bra at all. The skin on my back is soooo sensitive. I actually threw out a nightgown yesterday because the little pleats on the back of the knit fabric drove me crazy all night. Plus it was an old one and the fabric is slightly pilled. I feel like the princess and the pea.

My only visitors are family and they watched me breast feed both kids and if the can't handle seeing me bra less they can stay home!

My hospital experience was not so great either, but not nearly as bad as yours. My suggestion to anybody contemplating surgery is to have a family member in your room as much as possible as you will get better care. Although my husband found that being their just meant the nurses used him to do as much of my care as possible, like fetch ice chips and turn me. The night shift was the worst. My bed was right outside of the nurses station and I could hear everything they said all night, but they ignored me when I requested ice chips or other help.

When I was finally able to eat, I was so weak and in so much pain, I asked the nurse if she would help feed me. She flat out refused and said they didn't do that. After OD'ing on pain meds I felt very under medicated the rest of my stay. I would scream when they tried to pull me up in bed and they would chastise me for being a baby. They told me that this surgery wasn't as bad as childbirth and I really beg to differ on that! Childbirth is maybe 20 minutes of pain and then everything is worth it. Maybe I had easier childbirth than most.

I am feeling hurt by my surgeon's office this past week by the PA that writes the refills for pain meds. Both times I have called for different drugs I have received a mini lecture about how much I am taking. I am probably about a week behind their weaning off schedule and think I am doing well as I am already cutting back on the dosage, to the point that I really notice more pain. I think I'm doing pretty well and really feel upset about the guilt trip.

I guess that in the end it is the result that matters most. Don't expect warm, fuzzies from a surgeon and you won't be disappointed.

lduran
02-04-2015, 10:40 AM
Hi Iduran and welcome to the forum. What specifically bothers you about the pain meds? I don't know what kind of surgery you are contemplating or if you have experience with any previous surgery, but I really don't think the surgery I had would be possible without them for at least a few weeks. I'm about 2 1/2 weeks post op now and am just able to start cutting back some of my doses from 2 to 1 pills at a time (Vicodin). I also still take an OxyContin at night.


Thanks Liz for sharing your experience... The fact that the pain meds give you hallucinations, ODs etc scares me to no end... I am 39, dealing with scoliosis since my teenage years... Currently my curve is only 55 degrees; and I say "only" because I can see others with much worse curvature! I have two small fractures and 3 herniated discs due to the curve. I have been postponing the surgery for years now and it's finally time; the pain is pretty severe now and as I mentioned I try not to take too much meds. I'll be doing the surgery with Dr. Lebwohl at the UM facility in Miami, FL; probably around early April.

PS. I hate to highjack your thread, so thanks in advance for letting me.

Loretta

Lizardacres
02-04-2015, 01:34 PM
Well, I knew Percocet was not my best friend when I took it after having my wisdom teeth out and specifically asked for something else post op, but ended up with both long and short acting varieties to take at home. I didn't realize OxyContin had the same ingredient as Percocet, duh. It gives me nightmares and I have a hard time telling what is real. I think this is not an uncommon side effect as I know Susan posted about hallucinations in the hospital but she had more of a sense of humor about it than I did. My cats both stayed with me day and night, like they were standing guard and I decided they were my petronuses standing guard against my dementors (Harry Potter reference- I really dreamed this at one point).

Once I recognized the problem, I asked for a different prescription (Vicodin) because I have had it before and do fine with it.

The problem with IV narcotics dropping my bp really low is a tricky problem. Everybody reacts to drugs differently and whoever was giving me dilaudid in the iCU was using their best judgement based on experience, but it reacted differently than what they were used to on me. But with the monitors they knew right away to give me a narcotic antagonist to undo the effect right away and solve the problem. I had had this problem with Morphine during a different surgery so it was not really surprising. I strongly suggest having a family member stay with you at first if at all possible.

They watch you very closely after this surgery. I think everybody on this board has had some kind of problem following surgery. As my surgeon told me at a preop visit, most all of them can me fixed. It's the 1-2% than cannot be fixed that you need to think about and not get caught up in the rest of it ahead of time. It's a big decision to undertake this surgery. I actually feel very fortunate to have dodged the big bullets and made it home ok.

I don't mean to negate your concerns about the drugs, but this is one of those things that can be fixed :-)

I think your younger age is greatly in your favor. Lose weight if you need to and walk as much as possible prior to surgery to get in shape.

jrnyc
02-04-2015, 02:35 PM
hi Liz
i really believe the hospital nurse or nurses who were so
NOT helpful to you need to be sent back to school for a
refresher course!! that was disgusting tx to ignore your
requests....perhaps they were too busy gossiping at the nurses'
station....?
my mother was treated HORRIBLY on admission at nite, late, coming in by ambulance....she had a brain tumor...bless the ambulance staff....it was NOT their job, (once they got my mother to the hospital) to take care of her....but they did...as the nurses were "on break" and could not be bothered with an older woman who was in pain, who had a brain tumor, and who needed their attention....
i never forgot it...and it was decades ago...
so apparently, that type of nurse still exists...
and it was at the "great" Mt Sinai hospital in Manhattan....
(please read the word "great" with a sarcastic tone.)

nor did you deserve a lecture about taking pain meds...
again, they need to go back to school....to take some lessons
about why they entered the medical field, and about who is important (supposed to be the patient.....shocking to some people, but that is the truth) and the patient is NOT there for the convenience for them to have a job!!

sorry....it just makes me feel so angry that people with those attitudes are still in the "profession" decades after i watched how
they treated my mother. they are the least professional of all,
and give the good nurses a bad name.

hope you feel better really soon.
jess....and Sparky

Lizardacres
02-07-2015, 07:08 AM
A few bad apples really does color your experience in the hospital. I had good nursing care on the day shift, but the night shift was definitely another story. In fact, some of my hallucinations were related to my fear of the (lack) of good nursing care on the night shift. I would lay awake at night knowing that I was on my own and counting the minutes until sunrise. So glad that part of my journey is over. Really glad I had family members that stayed with me most of the time.

My aunt travels a lot and her husband was admitted to the British health care system when he became ill and ultimately died (from lung cancer) during their last cruise around the British Isles. She is so impressed with the nursing and medical care her husband received during his three week stay there. No, there are no private rooms, but there are no nursing stations down the hall either. The nursing station for each group of patients in is the middle of the room with the patients. They don't spend their time chatting with the other nurses, they spend time delivering nursing care, the kind you would want your family member to receive. She was so impressed with a nurse who spent an hour rubbing the legs of a cancer patient who was complaining of itching on her legs who had no family and just talking to her. Their system is not perfect and waits can be long for elective surgery, but she felt that the care he received there was much better then here and is more patient focused.

Also, his entire bill for three weeks in the ICU was $30,000. Can you imagine what it would have been in the US?

Lizardacres
02-07-2015, 07:43 AM
I feel like I have turned a corner in my recovery at this point and things are easier. The first three weeks were rough, no way to sugar coat it. For me, the biggest hurdle was proper pain control. There was a poster a while back that insisted to her surgeon ahead of time that she wanted a pain management specialist on her medical team to write her orders for pain control in the hospital and he found one for her (turned out to be the anesthesiologist).

If I had done this, I feel my recovery would have been much smoother and more comfortable. This is the one thing I would have done differently given the chance and I would encourage everybody to take this approach. The problem with leaving this to chance is that you will have multiple persons writing med orders while you are admitted; your surgeon, his assistant, the hospitalist, etc. and they don't necessarily communicate well with each other. You may be asleep when they come by and not have a chance to tell them how you are doing so they may be getting their information from the nurses. Also, I think that leaving a lot of discretion to the nurses as to what you can have and how much you can have leaves you at the mercy of a single person for 12 hours that may not be caring enough or very competent and that is not a chance I would want to take again.

I don't mean to denigrate the nursing profession as there are wonderful, caring nurses out there, but you might not be lucky enough that all your nurses fall into this category. My discharge meds could have been better also. I had to have them changed a couple of times and part of the problem was that what I requested was not communicated to the person who actually wrote the orders.

I have just graduated to taking walks outside without support. I never did use the walker outside as it gets hung up on the sidewalk, so all along I have just been holding on to my husbands arm, which worked much better. I was really pretty wobbly the first couple of weeks and though maybe it was because I was anemic at discharge, and while that might have been part of it, now that I am walking on my own I realize that I am having to learn to walk all over again in a different way so there was more to it than that.


Before surgery, I had lumbar kyphosis and my lower back stuck out to the rear when I walked and I was leaning forward some. Now I have lumbar lordosis, my head is centered over my pelvis again and my quads are rather weak. I have to really focus now when I walk; butt now sticks out to the rear and stomach is forward. It feels so unnatural! Now I know why they want you to walk - it's a lot of work to learn to walk with your new bone structure. Has anybody else experienced this?

I'm up to taking two 1-mile walks daily and I'll probably keep it there until my next post op visit at the end of the month. I'm trying to focus on how I walk and relax into my new posture. It's a whole new world. It's amazing to be able to stand again without pain. Sitting is still a challenge, I need to use a chair where I can sit up perfectly straight and even then, I get tired after a while and have to lay down. Also, I find I have to change positions a lot to stay comfortable. Guess it will be a while before I am ready to return to work.

fifa
02-10-2015, 01:05 AM
I feel like I have turned a corner in my recovery at this point and things are easier. The first three weeks were rough, no way to sugar coat it. For me, the biggest hurdle was proper pain control. There was a poster a while back that insisted to her surgeon ahead of time that she wanted a pain management specialist on her medical team to write her orders for pain control in the hospital and he found one for her (turned out to be the anesthesiologist).

If I had done this, I feel my recovery would have been much smoother and more comfortable. This is the one thing I would have done differently given the chance and I would encourage everybody to take this approach. The problem with leaving this to chance is that you will have multiple persons writing med orders while you are admitted; your surgeon, his assistant, the hospitalist, etc. and they don't necessarily communicate well with each other. You may be asleep when they come by and not have a chance to tell them how you are doing so they may be getting their information from the nurses. Also, I think that leaving a lot of discretion to the nurses as to what you can have and how much you can have leaves you at the mercy of a single person for 12 hours that may not be caring enough or very competent and that is not a chance I would want to take again.

I don't mean to denigrate the nursing profession as there are wonderful, caring nurses out there, but you might not be lucky enough that all your nurses fall into this category. My discharge meds could have been better also. I had to have them changed a couple of times and part of the problem was that what I requested was not communicated to the person who actually wrote the orders.

I have just graduated to taking walks outside without support. I never did use the walker outside as it gets hung up on the sidewalk, so all along I have just been holding on to my husbands arm, which worked much better. I was really pretty wobbly the first couple of weeks and though maybe it was because I was anemic at discharge, and while that might have been part of it, now that I am walking on my own I realize that I am having to learn to walk all over again in a different way so there was more to it than that.


Before surgery, I had lumbar kyphosis and my lower back stuck out to the rear when I walked and I was leaning forward some. Now I have lumbar lordosis, my head is centered over my pelvis again and my quads are rather weak. I have to really focus now when I walk; butt now sticks out to the rear and stomach is forward. It feels so unnatural! Now I know why they want you to walk - it's a lot of work to learn to walk with your new bone structure. Has anybody else experienced this?

I'm up to taking two 1-mile walks daily and I'll probably keep it there until my next post op visit at the end of the month. I'm trying to focus on how I walk and relax into my new posture. It's a whole new world. It's amazing to be able to stand again without pain. Sitting is still a challenge, I need to use a chair where I can sit up perfectly straight and even then, I get tired after a while and have to lay down. Also, I find I have to change positions a lot to stay comfortable. Guess it will be a while before I am ready to return to work.

Hi,

I couldn't agree with you more about every single thing you said. There are good nurse and bad nurses, and I think we've all experienced the best and worst of them! The same can be said for doctors, too.

You and I, I think, have the same trouble with meds. I've found over the years (I had my first back surgery in 1987) that things that would knock other people out only "speed" me up, and vice versa. Pain control and meds have always been an issue with me. Unfortunately, in my town, to suggest to a doctor that you know what works for you can be seen as "drug-seeking behavior," so I'm lucky to have a primary care doc who knows me, knows that I only ask for what I need, and he knows I know what works and what doesn't.

Also, and I probably won't phrase this correctly, in hindsight I wish I had had my husband with me 24/7. This is because he knows my behavior and my personality. In my opinion, it can be a bit dicey to ask someone who is completely messed up on meds to make decisions about her care. I hope that makes sense. I was too high to be in control of my own care, which (for me) made the hospitalization much worse than it had to be....I was too high to ask for what I needed. Sometimes, I wasn't high enough and was withdrawing, which also made me not the best judge of what I needed. For instance, when I woke up from surgery, my mouth was so dry. There was a male nurse with me (and my husband) and I asked for ice chips. That was all my brain could come up with - what I really wanted/needed was the Chapstick I had brought with me and/or one of those "mouth moisturizers on a stick," the spongy thing they dip in water and rub around your mouth. The male nurse told me I couldn't have anything by mouth (no ice, water, etc.) until I had had a bowel movement. That set me off into heaving sobs to where I couldn't even catch my breath. I think either I or someone else eventually pushed my PCA. The meds I was on made me lose my words, and I was drugged to where I didn't know I wasn't making sense. Anyway, you would think that nursing staff would know this kind of stuff, and if they can't give you ice chips, would offer you something!

I'm having the same trouble walking and sitting as you are having. My head is now centered over my tailbone, which it hasn't been for probably 10-12 years, so I am having a terrible time sitting and a rough time walking. I'm only walking about a quarter mile per day, if that, and I'm supposed to be doing at least a half mile. I just can't. Everything exhausts me. Taking a shower exhausts me. Letting the dog out (that's 14 stairs down and 14 stairs back up) exhausts me. I'm depressed because I don't feel like I'm "where I should be" at the three month mark.

Take it easy and feel better soon. I'm praying for you - you seem to be doing great to me - keep at it!!

Hugs,
Fifa

Lizardacres
02-10-2015, 02:16 AM
I think that what helps me the most is a lot of sleep. I can get up, eat breakfast and then sleep until lunch. After lunch I'm sleepy again and take another nap. A few days ago I went to sleep after lunch and slept until 6pm. It sure is hard to get my two walks in on this schedule. :-)

I'm not doing any housework or cooking. I change positions frequently, I might sit and watch tv for a while (got stuck on a reality show 'Dance Moms'), it's like watching a plane crash each episode. Then I lie in bed and read, and I eat. That's about it.

I have a spot at the top of my incision that hurts but don't know why. It mainly hurts when I move certain ways. I wonder if they cut a muscle there, it is a deep sharp pain. Sometimes I worry I twist too much without thinking about it. I try to just turn my head but but I am fused to T4, so you think that would be OK, but I don't really know.

Lizardacres
02-25-2015, 03:04 PM
I had my six week post op visit today and so far everything looks good! He gave me a copy of the operative report and I found that during surgery he decided to only fuse me to T-7 instead of T-4, which was the original plan. I pleased about this as I think it will give me more confidence driving. My lumbar spine was in worse shape than expected with some of the bone being soft, even though the DEXA was OK. I feel like I really dodged a bullet as far as how long I waited to have surgery. For women, osteoporosis is a real problem for us if you wait too long. Really, I should have done this four years ago when I was thinking about it then. It just wouldn't have worked out very well with my job then but I should have made it happen.

Also surprising was that some bone was harvested from the right iliac crest. I really haven't had pain there so maybe they didn't take much. I had two osteotomies, at L1-L2 and L2-L3 and a half of a cage (due to deformity, they couldn't use a whole one). My lumbar kyphosis is gone as far as I can tell, I am so pleased about this. I've already bought two dresses and two bathing suits! I used to only wear slacks to work, but I'm really excited about being able to wear dresses now. Before, they just didn't fit. I gained 2.5 inches in my torso and that makes such a huge difference.

My surgeon only did pelvic fixation on one side, which I had not seen before on this board. I asked him about this and he said that he does this most of the time and hasn't had any problems. He doesn't feel it is always necessary to do both sides. Has anybody else heard of this?

I have hooks at the top two levels instead of screws. Why do they do this? Is it possible that hooks cause more pain as I have one painful spot near the top of the fusion on the right side only. I'm definitely more balanced looking on xray but definitely don't have the correction they get with teenagers. Oh well, if I had it done back then, it would have been a Harrington rod. Overall, I think I'm doing well and walking 1.5 miles each morning. Hope to get back to work 50% at 3 months.

Here are my xrays from today, I tried to add them to my signature but couldn't figure out how. I added the lateral xray before surgery so you can see the lumbar kyphosis, which I have not seen a lot of on this board in case anybody is interested. It doesn't really show the big hump I had very well, a photo would have been better.

AP: 1746
Lateral: 1747
Lateral Before Surgery: 1748

green m&m
02-25-2015, 04:43 PM
Hooks are often used when the pedicle is too thin to take a screw.

I have two hooks at the very top of my fusion at T3 and one around T10

I too had lots of pain at the top during early part of recovery but it's all gone now.

Lizardacres
02-25-2015, 05:41 PM
Thanks for the info, Green m&m!

titaniumed
02-26-2015, 01:17 AM
My surgeon only did pelvic fixation on one side, which I had not seen before on this board. I asked him about this and he said that he does this most of the time and hasn't had any problems. He doesn't feel it is always necessary to do both sides. Has anybody else heard of this?

Yes, there was a poster from Bakersfield, Ca here that posted her x-ray with a single pelvic anchor a few years back.....I forget her name....

No hooks for me, but a screw missing at T7 due to lack of clear trajectory from wedging. Males do have bigger bones and I wonder if surgeons think we are easier to operate on? Good question.

Liz, you sound good. I know I couldnít have gone back to work at 3 months. 3 months is early.

One day at a time

Ed

titaniumed
02-26-2015, 01:30 AM
Here it is....Sherry 66 That was 5 years ago, my brain still works!
http://www.scoliosis.org/forum/showthread.php?10112-Test&highlight=

Ed

Lizardacres
02-26-2015, 11:05 AM
Thanks for finding that, Ed. I'm glad I'm not the only one. Also saw a comment from Linda somewhere that pelvic fixation on one side only is fine and that it is surgeon preference, so I feel better. I guess the main thing is that you get a good solid fusion, the hardware us only a means to an end.

leahdragonfly
02-26-2015, 07:13 PM
Hi there,

I am glad to hear how well you are doing! And a very good 6-week report. I had a single side iliac screw. The purpose of the iliac fixation is mainly to prevent sacral fracture, and apparently one screw is enough. I also have two hooks at the top level (T8 on me). Dr Hart told me it is to decrease the risk proximal junctional kyphosis (PJK). There is also published literature supporting this if you care to cruise PubMed. It's always nice to know that your surgeon is doing everything possible to give you a great outcome.

I have essentially the same fusion as you (T8-sacrum) and I'm doing very well now at a little over 3 years out. I definitely made a lot of progress after the 2 year mark. You have a lot of improvements to look forward to, too.

LindaRacine
02-26-2015, 10:40 PM
I also have only a single iliac screw.

We did a study on bilateral vs. unilateral

http://www.ncbi.nlm.nih.gov/pubmed/24785475

titaniumed
02-27-2015, 01:01 AM
Here is 4 pelvic screws, and alternating pedicle screws with 4 rods......it looks like a strong setup.

I wonder how this person turned out?

leahdragonfly
02-27-2015, 09:09 AM
<snip>We did a study on bilateral vs. unilateral

http://www.ncbi.nlm.nih.gov/pubmed/24785475

Linda,

I am kind of surprised to read the high rates of reoperation, pseudoarthrosis, and infection: Forty-one percent (n = 19) of the unilateral cases and 50% (n = 13) of the bilateral cases were treated with reoperation (p = 0.48). In addition, 13% (n = 6) of the unilateral and 19% (n = 5) of the bilateral cases developed L5-S1 pseudarthrosis (p = 0.51). There were no sacral insufficiency fractures. Thirteen percent (n = 6) of the unilateral and 7.7% (n = 2) of the bilateral cases developed postoperative infection (p = 0.70).

That's pretty eye-opening. I had thought pseudoarthrosis was something like 1% for some reason (and it was me).

Now back to you, lizardacres.

Lizardacres
02-27-2015, 10:54 AM
All - I really enjoy all the sidebar conversations - they are most informative and possibly the best part :-)

Ed - I don't think I would have liked having all that hardware, I hope the surgeon had a really good reason for doing that! More is not always better. Kind of makes you think he was not too experienced or lacking in confidence.

Gayle - Your post about the hooks was very reassuring. I think my surgeon did a great job for what he had to work with but he is not much of a talker and his PA surgical assistant is not either, whom I see for some of my F/U appts. I don't know why he didn't try for a better correction but I'm sure he had his reasons. I'll try and remember to ask at my 3 month F/U appt. He told me up front that his goal for me was balance and to expect about a 40% correction. I don't even know what my final curves are, I asked this week but we got sidetracked and I didn't find out. He told my husband immediately after the surgery that my results were better than he had expected. He must have really worked on something since I gained 2.5" in height. I had a LOT of rotation.

It's really unbelievable to me that all the pain I was experiencing pre-op is completely gone, as is the numbness I was experiencing in my feet. It's amazing to me that I can stand as long as I want now. I also had GI problems that I suspected were related but both my PCP and the surgeon didn't think so. Before surgery, I had several bouts of stool incontinence while squatting and bending over while doing some serious gardening. What was so strange is that I had no inkling it was happening at the time; I couldn't feel it happening. It was not large amounts. Also, the last several months, I had no control over passing gas. It was kind of embarrassing at work. It wasn't just once in a while, it was ongoing in small amounts all day. This has also stopped, and I don't think it is from the narcotics as I was taking them before surgery. I had a colonoscopy not too long before surgery and was told my colon was 'flabby'. No idea what causes this but wonder if that too could possibly be related. Fortunately I don't need another colonoscopy for 10 years so I won't be finding out anytime soon.

This board has been so incredibly helpful and informative. I really appreciate the time and thought that everybody has put into their posts. The honesty is what makes this board so special. Thanks to Linda for making this board what it is and keeping the craziness to a minimum.

Lizardacres
03-06-2015, 12:55 PM
I'm seven weeks post op now and it seems the only thing I get done everyday is my walk; naps are optional now. This is not to minimize it - I think it is the one most important thing I do everyday, with the exception of eating, although I still don't have a great appetite. I don't think my stomach will feel right until I get off the narcotics. I'm down to 2-3 Vicodin daily and am aiming to be done with them within the next three weeks if possible. Trying to get ready to go back to work but not driving yet due to the drugs.

Anyway, I discovered Spotify (a free app you can download for your smartphone). You don't need the premium version, but you will get some ads with the free version. So I've been playing with this app by listening to a lot of different music when I walk and I created a playlist of upbeat classics which is public. If you want some fun music to walk to, open Spotify and using the search feature, look for "A Walk in the Park - Uptempo Classics'. Just searching for A Walk in the Park is adequate.

If you have any suggestions for songs, send me a pm and I will consider them - no whiny songs or musicians with angst, please. Any era welcome. You will probably have to press the 'Shuffle Play' button, so they will be in random order each time you play it.

Caution: some of these songs make me feel like dancing - my husband reminded me that I am not cleared yet for gyrating.

ksmom0611
03-06-2015, 03:57 PM
I had my surgery on January 21 and feel so far behind you! I can walk around my house for anywhere from 5-20 minutes depending on the moment. My back just seizes up with muscle spasms on the right side, starting in the shoulder area and working its way down. If I try to push through it, it just gets worse and then the pain is really bad. I was hoping to return to work around 8 weeks, but that is so not going to happen!

Question to the group - what were your walking capabilities at what time post-op?

I'm so happy things are going well for you! I'll try to catch up!

Lizardacres
03-06-2015, 06:44 PM
This is so not a competition. I've kept posting because I so loved reading everyone's journeys, although some made me so sad. Also I'm pretty darn bored! My work comrades tell me to just relax and heal and I am not a good relaxer. I'm a doer and it's absolutely KILLING me today that my garden needs so much work and I can't fix it.

I think the weather here is very much in my favor for walking. Today is breezy and 70 something. Spring officially started here last week when all the spring training teams arrived. Two couples we know have just arrived for spring training, one from Seattle and the other from Kansas City. I don't feel up to sitting through any games, but my husband is going with them. Besides, it would really make me want some beer. We will meet them for dinner tomorrow and take them around on Sunday.

You on the other hand are in the midst of a very long winter. It probably isn't even safe for you to walk outside.

Are you taking any kind of muscle relaxants? I'm at the point where I think most of my pain is now muscle spasms in my upper back and I'm taking klonopin 1.0 mg at bedtime, which is very helpful. I know I'll be off the pain killers before cutting back on the klonopin. Mornings I have the most pain because I generally haven't had pain meds for at least 12 hours. I feel like I can feel all the hardware in my upper back when I wake up. I take a pain pill, have a looong breakfast and then make myself walk, even though I don't always feel like it. Controlling the pain is very important, without drugs I doubt I would walk much either.

My biggest worry is fusion. My bones are in the osteopenic to soft range. I see walking as absolutely vital for me, along with nutrition and calcium and vit D. I really want this to work the first time.

Once I make my way to the park behind our house, I'm glad to be outside and walking. The park is about 3 miles long and has a lake, lots of ball fields, two dog parks and a big demonstration garden. Something is always going on with gourmet food trucks on the weekends.

So I am up to 1.8 miles this week and will try to push up to 2 miles at 8 weeks post op. Really, just this week it's feeling more natural to walk. My posture and center of balance is completely different. My quads and groin muscles felt contracted for a long time. I just walked very slowly and took small steps and worked through it. I installed an app on my phone to measure how far I walk as I don't want to overdo it either, it's called Map My Walk. We had a rainy day this week so one day I walked at the mall with hubby. I had no idea how easy it is to rack up the miles there. I ended up walking about 2.5 miles without meaning to. The local mall is nearly one mile from end to end and that doesn't count the part that goes to Nordstom.

Anyway, spring should come soon to your neck of the woods and it will inspire you!

titaniumed
03-07-2015, 01:43 PM
I was hoping to return to work around 8 weeks, but that is so not going to happen!

Question to the group - what were your walking capabilities at what time post-op?


I donít think any adult over 45 has done this, at least not on this forum. 3 months yes, a nurse, and her posts about that experience years ago, were pure agony. Its just not worth trying to push that hard because it only sets you back......You only get one chance at this and It takes a long time for bone to fuse. (12 months, in the text books) You donít want to fall, or jolt, or step off a curb wrong while healing......If you cut your finger and then a week later hit it with a hammer, it will heal in time, it just takes longer.....I took 18 months off from going into the office. I did everything online from the house and with the telephone which nobody likes to use anymore.....Poor Alexander Graham Bell....telephone was a great invention for 120 years, now nobody likeís it anymore. At dinner tonight, I will text the next person ďSweetheart, can you pass the wine please, love you!Ē.

Walking for me was 2-3 houses and back, several times a day, and plenty of pacing in the house. It took me a year to get up to a mile, and I ďwasĒ in excellent shape from skiing. I think my massive anterior surgery,(ALIF) having a broken shoulder, and gall stone problems added more time to my recovery. Yes, I felt better as time passed, but my pain before my surgeries was mind blowing. I cant believe I fought it that long.....If I had to do my scolisis surgeries all over again, I would do it at age 40. My surgeon repeated to me several times ďWhy did you wait so long?Ē I didnít think I needed to answer that one.

After the surgeries, I walked on eggshells for a long time. My surgeon actually ordered me to go skiing at 12 months. Doctors orders you know. (smiley face) We also talked about the crashes since its part of skiing......no velocity, and no more airs, you can crack a fusion..... I have old threads here that include old photos and video of me skiing and hiking in some of the fantastic National Parks and ski areas of our country.

I donít think my spinal outcome could have happened any better giving the circumstances. I am 100% satisfied. I didnít think it would have turned out so well, maybe that wasnít the way I should have felt about the whole thing.....??? We think about complications and what can or could happen, itís a natural feeling, but probably not great for the mental side of things, but also acted as a protective mechanism as far as healing is concerned.

I feel I was 90% recovered at a year......a rough sort of healing rate of 10% per month, that came in bumps. No improvement for 2 months, then a 20% instant improvement. See-saw type good days and bad, with more good days of course. Thatís how you know you are recovering! The second year was my fine tuning year where I had to push harder as an athlete and that wasnít easy. Fatigue lasted for around 2 years, and boy do I miss those naps.

I have always thought of medications as temporary aids......They mask pain, and help heal, but in the long run they can create ALL sorts of problems... Itís a goal to quit, it is, and if you can, do just that. You will save yourself plenty of heartburn. Pain is an adaptable, I know, I endured massive amounts of it for years.....Recovery includes HEALING pains, I figured that it wasnít all that bad and that the meds were complicating the systems in my body ďandĒ mind, and emotional thoughts do trigger pain from a neurological standpoint....Think pain, and thatís exactly what you get. Itís a vicious cycle that needs to be broken with diversion. I figured its worth a shot, and it works, Iíve done that study. Soaking in hot water helps in this regard.

You guys are doing great....

Hang in there

Ed

ksmom0611
03-09-2015, 05:18 PM
Thank you so much for your encouraging and (as always) humorous remarks. It's good to know things will keep improving for a while!

Lizardacres
03-21-2015, 11:44 AM
I ditched the narcotics this week. I had been down to just one vicodin daily for about a week and finding it extremely useful to take first thing in the morning as I tended to hurt the most then and once it took effect, I would do my daily walk; sort of my motivation. I knew this needed to happen because 1) I promised myself I would stop before returning to work and 2) it's a healthier way to live. Unlike many of you, I was on pain meds for many years prior to surgery; it was my rescue medicine at the end of the day or on weekends, I would take it in order to get things done like housework/gardening. I never had any injections, just the pain meds and massage to cope. It wasn't just narcotics, they came later, but a succession of different meds, including Vioxx, which was really working for me but was taken off the market a while back.

In retrospect, the drugs bought me time, but at a price. Time is NOT on your side when contemplating this surgery in adulthood. I have no regrets on having the surgery now, but really it would have been better done years ago.

So this was a huge step for me. It's been a week of emotional ups and downs but not terrible. I was really up yesterday, but feel really down today for no reason. I am not pain free by any means, but what I have now is not surgical pain, just muscle spasms in various places. So I'm using Tylenol (hope I'm not damaging my liver) and laying down a lot to manage the spasms. Still doing my am walk but spending a lot of time in bed. Trying to be as good as possible to myself during this period and not push myself in other areas.

On the plus side, I actually looked at my work email for the first time since surgery and made a few work related phone calls. I think I'll be ready to go back 50% at 12 weeks, but if not, I don't have to. Also, I drove for the first time since surgery. As a treat, I went to the dermatologist and had a facial and I'm a little peely now. I'd love to go to the mall and try on dresses, but the thought of bringing along my grabber to dress puts a stop to that idea!

Thoughts on the importance of walking - my surgeon told me he wanted me walking 1 1/2 miles at my 6 week follow up. I was able to do this but realize it is not possible for everybody. But if you are contemplating surgery, please consider your climate and plan your recovery during a time of year when it is pleasant for you to walk outside. It's lovely here right now but I still have to push myself every day to do it. If it wasn't nice, I am sure I would not be walking so much. And I see walking as physical therapy and really think about it the whole time I am walking. I let gravity push me into my new lumbar lordosis, which still isn't entirely natural feeling and try and remember to hold my head up straight and not look down. As I walk, I think about extending my weight bearing leg so it stretches out straight behind me and consciously push off with the balls of my feet, instead of shuffling along flat footed. This really helped me with stretching out my quads, which were so tight and sore for a long time.

I am the SLOWEST walker at the park and take fairly small steps compared to everybody who is there for fitness. But this is not meant to be an aerobic exercise. It's meant to be a weight bearing exercise. I'm walking anywhere from 1.5 to 2 miles daily, just depends on my route as I try and mix it up. I feel no need to increase my distance as this is still quite a workout. Well, I am going to go and lay down now.

LindaRacine
03-21-2015, 03:42 PM
Congratulations!! It is no small task to get off narcotics when you've been on them for a long time. It's a BIG deal.

Good luck in getting back to work. Hope you make your goal, but if you don't, you know that you'll come close. I missed my goal by about 3 weeks. For a moment, it was a bit of a disappointment, but it was just a reminder that we're not always in complete control.

--Linda

mabeckoff
03-21-2015, 09:26 PM
Congratulations on getting off the narcotics, I was off of them In January but had to go back on them again.

I am thinking of going off but not now.

Glad that you could do it

Melissa

Lizardacres
03-22-2015, 09:10 AM
Congratulations!! It is no small task to get off narcotics when you've been on them for a long time. It's a BIG deal.

Good luck in getting back to work. Hope you make your goal, but if you don't, you know that you'll come close. I missed my goal by about 3 weeks. For a moment, it was a bit of a disappointment, but it was just a reminder that we're not always in complete control.

--Linda

How did you know you were not ready to go back to work at 3 months? I can sit pretty well for a couple of hours at a time and my job allows me to leave my desk and move around at will. The commute will be a challenge, I think, however. It's hard to plan ahead for this.

leahdragonfly
03-22-2015, 11:35 AM
Hi,

I had to return to work at 14 weeks post-op my original surgery, then at 12 weeks post major revision, due to financial and job concerns. I was also getting bored, lonely, and isolated at home, even though I have a wonderful family. I am a nurse in a busy cardiac cath lab and with great difficulty I was able to negotiate going back to work on seated/limited duty for several months. I did not feel ready, but I really had no choice. It was extremely exhausting and painful to be back at work. Yes, I could get up and walk around every hour or two, but the pace was very stressful, and I was very sore. I had nowhere to lay down during the day, and sitting was still not very comfortable. I too was off all pain meds early, like you, and I took Tylenol 3 times a day for at least another year. The time commitment of work also disrupted my schedule of swimming and walking for recovery. I feel that going back to work so early set my recovery back by a solid month at least, probably more. I really felt like I was tough, strong, and determined, and that I should be able to suck it up. Unfortunately recovery doesn't work that way. It takes the time that it takes.

Please don't be in too big a rush to head back to work. No one gets a prize for going back the soonest! You are recovering from a huge surgery, like being hit by a truck. You only have once chance to have your back heal correctly for the rest of your life. I will always wonder if going back to work too early contributed to my broken rods, which of course I will never know.

Take good care,

Lizardacres
03-22-2015, 02:21 PM
Broken rods - I'm so sorry this happened to you. I have thought about this quite a bit, not really because I'm worrying about it at this point, just know it's out there as a possible outcome. Not sure of the chances but maybe about 20% I think.

Who knows what really causes the lack of fusion. It could be something on the patient side or it could be something the surgeon did or didn't do. With the exception of smoking, I don't think they really know much about what causes failure in a specific person. It sure would be nice to know what really matters.

I'm a gardener and I know that saplings must be staked against the wind but not too tightly because getting blown about a bit makes the trunk strong. Wonder if that could apply to spines? One of the other reasons I wanted to get off narcotics is that I think having some pain at this stage is a good thing and makes me aware I have limits and shouldn't be doing too much even though I feel pretty good. Narcotics definitely impair my judgement and if it doesn't hurt to do something, what's to stop from bending, etc?

I think stress of any kind, including going back to work too early could certainly be a factor in inhibiting healing. But if you are stressed by staying home too long because of financial reasons or concerns about keeping a job, that is probably just as stressful as working.

I'm not so worried about the money aspect, but there is some concern that they will get too used to running the show without me. I don't feel ready to make a final decision, just putting out feelers.

jackieg412
03-22-2015, 03:45 PM
I too went back to work way too soon. At 7 weeks. I had a lot of restrictions and thought I could do it but it was the wrong thing to do. It made my first year really rough. If you can you owe it to yourself to take care of just you.

PeggyS
03-22-2015, 07:37 PM
Liz -
you're doing great with your recovery!! It looks like you're getting some good advice about going back to work.

Good job of getting off narcotics! I know what you mean about allowing yourself to 'feel' some of the pain or discomfort. It helps me remember that I need to be cautious and slow down!

I purchased a folding grabber on ebay. It's not very sturdy, but it's handy to take to the Y or into the store. I forgot it today & wanted to try on a pair of pants. A hanger wasn't as efficient, but it worked!

Lizardacres
04-10-2015, 10:40 PM
I went back to work this past Monday at almost 12 weeks postop. Actually I cheated and went in the previous Thursday to see how the drive was and to attend an hour long staff meeting to catch up and get ready for Monday activities. That worked out well as I got to say 'hi' to a lot of people, and my boss, who wasn't convinced I should come back so soon so she could see me and be reassured.

I'm working 50% for a month before I return full time and I'm really glad I am doing this. I was pretty sore by the end of Monday - I think it was mostly too much walking. I logged my miles with my phone and put in 5 miles at work before my battery died. I work at a University and needed to visit several departments but had no idea I walked that much at work. I worked Tues afternoon and then all day Thursday. I took long afternoon naps on my days off.

The timing was right for me and I'm glad I'm back. It was getting stressful to sit at home bored and worrying about how things were going at work since I manage a department. But it's good to have rest days still. I did decide I really needed a back up camera for my car to be safe and also to keep myself from twisting. It cost $300 to have it installed at a car stereo place and it is the best money I have ever spent.

titaniumed
04-11-2015, 10:22 AM
You have made great strides in your recovery! You are one of the lucky ones, no doubt.

My neighbor is going in for his revision next week due to MAJOR pain from his 02/17/15 surgery. He had 1 lumbar level done. It seems that I know more single level fusion people in misery, than here on the scoli forums. They are all my neighbors.

Do try to be careful.....technically, your still quite early and surprises and setbacks can be incredibly painful.

It is possible to log 10 miles in a 8 hour shift in a 10,000 sq foot building.

Ed

Lizardacres
04-11-2015, 05:09 PM
You have made great strides in your recovery! You are one of the lucky ones, no doubt.

Ed

I feel fortunate indeed but i believe that learning from everybone's experiences put me in a much better position to manage recovery. But like you say, much of it was luck. And the better I feel, the harder it is to behave and I know I am far from being out of the woods.

Anyway, I couldn't find a lot of posts about returning to work, so I wanted to share my experience. I think when people recover and go back to work, they drop off the board and get on with life.

PeggyS
04-12-2015, 06:01 PM
Liz, I love my back-up camera, too! I'm glad you've figured out how to manage working. Your recovery is amazing!

fifa
04-13-2015, 07:36 PM
I feel fortunate indeed but i believe that learning from everybone's experiences put me in a much better position to manage recovery. But like you say, much of it was luck. And the better I feel, the harder it is to behave and I know I am far from being out of the woods.

Anyway, I couldn't find a lot of posts about returning to work, so I wanted to share my experience. I think when people recover and go back to work, they drop off the board and get on with life.

Hi, Liz -

Sounds like you are having a remarkable recovery! I kind of dropped off the board for a couple of months. Life got busy, plus I forgot my password. LOL I have been thinking of you and everyone else since I've been gone.

Returning to work has been hard for me. I can only sit now for about four or maybe five hours, with frequent breaks to get up and walk. I would like to be able to say that I'm doing this five days a week, but I'm not. My lumbar area was really a mess preop - so much so that I got a third rod on the left side which is "dominoed" to the left rod. I call it my third rail. LOL My doctor says that sitting is what will be hard now, and he's right. Preop, I could sit for hours but couldn't walk for any length of time.

The Catch 22 of my recovery so far (at the five month and three day mark) is that the more I do, the more pain I have, which means more meds. We are trying to wean DOWN the meds, so that means less activity for me. I was big into yoga and meditation preop. In fact, I couldn't not have managed my pain preop without them. I find it very difficult to meditate now, which I'm sure is medication related. My concentration is shot now. It has been hard to go back to work because I'm easily distracted no matter if I am working from home or at the office. It has been easy to give up while in the office and just come home. Long story short, I'm not pushing myself as much postoperatively as I did preoperatively. My strength and stamina are not what they used to be.

It's 6:30 p.m. here and I haven't had a single med today other than vitamins. Hopefully, I can get on the treadmill a bit later. I prefer to walk outside, but the visual of the treadmill helps keep me focused. I do have a pedometer, but there is something about watching that little dot on the treadmill go 'round that keeps me going. That's what the yoga always did for me - to push myself beyond what I thought I was capable of. I'll take motivation anywhere I can get it. LOL

Keep up the good work - I think you are amazing. (smiles)

Hugs to you!

Fifa