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View Full Version : New here, surgery date Feb 23. Terrified.



Lilysaidwhat
01-15-2011, 04:27 PM
Hi all,

I have my first ever surgery on Feb 23 and am struggling with the anxiety and fear.

Classic story - wore a milwaukee for 4 years, closed out the process at 42*up/38*low, and went about my business, believing the dr who said it wouldn't progress.

Now at age 38, I have been on Celebrex and Tramadol max daily dosage for 2 years. I went to see Dr Boachie in December, hoping to discuss tweaking my pain management regimen and was stunned to hear that I need to be fused from T2 - L4.

I went for a second opinion and it was confirmed. My surgery date is Feb 23 at Yale with Dr. Grauer.

I am sure it's unpopular to say but I felt like Boachie saw me as a quick win and not as a patient. He spent most of his time - all $450 cash of it - with his back to me. He may be the best in the nation, and if I were having corrective surgery, I would be more willing to entertain HSS, but I really liked Dr Grauer and have confidence that Yale will be able to provide excellently for me.

I've thought this over 15 ways from Sunday and feel as prepared as I will be. Do I feel confident that my pain will go away and I will be better for having done this at all? No. But I do feel confident that I have no choice but to go forward, and it may as well be sooner than later. I thought I had outrun this and the shock of finding out that in fact, I hadn't, has been overwhelming.

We have a two story house with all beds and a bath with walk-in shower upstairs. I expect to be sequestered there for 2 weeks, as the stairs will be hard. Other than Wii, a dorm fridge, and a kindle, is there anything else I should acquire pre-op? I have ordered an old lady bonnet hair dryer, because my hair is long and takes forever to air dry, and I don't do being dirty.

I asked for the least amount of correction possible. I am very well compensated for now being 65/40, with my head only 2mm off center, and my left shoulder 2.5cm lower than the right. I am already long waisted, even with the curvature and have no interest in looking bird-like with a creepy long torso and short legs. I am hoping he can get me back the inch of height I've lost and that is it.

Also I am hoping that he doesn't maybe reduce the number of vertebrae he's fusing too.

So I have some questions that I hope you're willing to answer for me, based on your experience. Your answers are greatly appreciated.

1. Did you find that you needed 24/7 help the first two weeks? What did you mostly need help with?
2. How long before I can shower?
3. How long did you stay in the hospital? They're saying 5-7 days and I am shooting for 4.
4. How long was your surgery and how complex? The OR is booked for 5 hours.
5. When did you return to work? I have a 2 hour commute by train but am hoping to telecommute at 8 weeks. Is this reasonable or a stretch? I have a desk job.
6. Was there anything that was good during that first 3 months?
7. When did you first feel glad that you had done this? I don't know that I will ever feel that way, as for me, I don't know that I will ever be able to quantify what I have avoided by doing this.

Thanks for your help and please keep the horror stories on the down-low. I'm already taking xanax every few hours to keep the hyperventilation at bay.

Many thanks and I wish you all well.

Lue
01-15-2011, 05:12 PM
Hi Lily, I'm sure you are scared, I hope this helps, I showered the day I came home, I was in hospital 7 days, you will need help with meals, stairs may not be that long before you can go up and down,( not all day long).I am a hairdresser and was back to work in 5 months,also I was 59. Walking is very good, I was glad right away, the pain before surgery was gone, jusy surgery pain to deal with, but it gets better each week. My surgery was 5 hr. How old are you, and good luck.

mgs
01-15-2011, 05:50 PM
First of all, WELCOME!!
I never have, for even a nanosecond, questioned or regretted having my surgery. I was in the hosp for 8 days, and when I went home, I was by myself all day while my husband was at work and my youngest (a high schooler) was at school. For the 1st week or so at home, I slept on the couch on the 1st floor. This was not because of the stairs to our 2nd fl bedroom, but because my husband is such a toss-and-turn sleeper. Our bathrooms were upstairs, and I did fine w/going up and down to shower daily, w/only me in the house. The pain was as bad as I had been prepared to expect, but the narcs made it doable. I walked around the house a lot because, even though it was late Aug and the weather was beautiful, the uneven surface of our neighborhood's streets made for a bumpy walk when using the walker, and that hurt. As far as the walker goes, I used it inside the house for a week or so.
Truly, the biggest help for me was all that I learned from this forum. The dr's office assistant gave good pre-op instruction, but it was nothing compared to reading about the experiences of so many people who actually had had adult scoli surgery. I went into surgery knowing as much of what to expect as I could know without having personally experienced it.
By mid Oct, about 7 weeks post-op, I wasn't taking any pain meds regularly - just a rare one when I had a relatively "heavy activity " day.
Why do you want as little correction as possible??
Another thing. As you read through the threads here, you probably have noticed a good deal of time and space spent discussing constipation. It REALLY is to be avoided post-op, at all costs! Maybe it never becomes an issue for some rare person, but with the round-the-clock use of opiates, it's pretty much a given. What I did, before my hardware removal surgery, as a preventive measure: 2 nights before my surgery, I drank a bottle of mag citrate, and it did its job that next morning (the day before my surgery) so at least during those 1st days, I was pretty. . .um. .. empty. That way, I had a head start (the hosp will start you on preventative meds, like Dulcolax and Colace, pretty much right away) in avoiding that particular nightmare.
My surgery (T-3 to L-3) lasted 7 - 8 hours.

Lilysaidwhat
01-15-2011, 07:46 PM
Thanks you guys.

I updated my sig after posting - we'll see if it shows up this time.

I'm 38, in excellent health otherwise, 5'4", 143 lbs, and I routinely take a 2 hr train commute to/from NYC for work and wear 4" or 5" platform heels (I work in Finance and heels are more comfortable than flats, which kill my lower back). Not a smoker, no allergies, nothing - except that my spine is apparently made from macrame materials. :P

I am hopeful that I can stay off grand rounds (as requested) and specifically told Dr Grauer that no residents, nobody but he, is to put any instrumentation into my back. I gravely fear paralysis. My parents are coming on Day -5 (5 days post-op) and will be staying at my house for a week. My mom is an organizer - as in, she told me to leave the big closet in the guest room for her to pull things out so I can say Keep or Trash - for something to do while she is here - and my dad loves to cook. Husband will be home for the first few days and return to work if we have established a routine by then.

I am flattered to say that my friends are coming out of the woodwork to schedule time to come and stay for 3-4 days at a clip. I'm trying to find an online calendar to prevent overlapping.

Generally, I am the breadwinner of our household (no kids) and I am very anxious about depending on others. This is really hard for me. I've been in weekly PT for a year, and my PT has offered to come to my house and do PT for me, and also has started me on a pre-op program to strengthen scapulars and abs. I am hoping to only wear a post-op brace if I am utterly exhausted and unable to sit up properly without using my core.

This is probably the right time to say that I am very driven, very Type A, a typical NYC worker, and can not see beyond D-Day. I can't see a time when I will be able to say I am glad I did this, because it is ultimately preventative (to keep me from being rolled up like a potato bug by the time I'm 60).

Can I get Versed for 6 months? That would be fabulous.

Lilysaidwhat
01-15-2011, 07:55 PM
@mgs, thanks for the heads up on the constipation. I have never been constipated and have to admit that I am really worried about that.

My worry is that I won't eat enough to be able to go home. I really would like to be home in 4 days. If it's 6 days and I'm not out, I will be really upset.


Another question - are there drains from the incision site? When are they removed?

And is it possible to knit in bed that first couple of weeks? How much time did you spend up and moving around? I keep hearing 3 times a day to be up and moving, but for how long and doing what? Alternately I hear as much as you can - so what does that mean?

JenniferG
01-15-2011, 08:25 PM
1. Did you find that you needed 24/7 help the first two weeks? What did you mostly need help with?

I only needed help with sitting and standing the first two days. I had two epidurals so wasn't feeling any pain.

2. How long before I can shower?

It varies a lot I think, but they pulled everything out Day 3 and if my memory serves me correctly, I went straight to the shower and washed my hair. I showered without help every day from then on.

3. How long did you stay in the hospital? They're saying 5-7 days and I am shooting for 4.
My shift from epidurals to oral meds didn't go smoothly. Day 6 I was in a lot of pain and I needed morphine injections. That continued until Day 19 when they finally let me go home. From the moment I was in my own bed, the pain dissipated. Either it was psycholgical or suddenly the meds started working.

4. How long was your surgery and how complex? The OR is booked for 5 hours.

I was told both 7.5 hours and 8.5 hours so somewhere around that mark.

5. When did you return to work? I have a 2 hour commute by train but am hoping to telecommute at 8 weeks. Is this reasonable or a stretch? I have a desk job.

It was 4 weeks before I could sit comfortably at the computer for any longer than 20 minutes. Sitting was uncomfortable though I could stand, walk and lie without problem. From about that time, I improved a lot, so telecommuting is probably doable at 8 weeks.

6. Was there anything that was good during that first 3 months?

Having no responsibility for the first time in my life. I thought that might be difficult, but I loved it. People took care of themselves. Nobody wanted anything of me. Sleeping during the day. It didn't last long enough!

7. When did you first feel glad that you had done this? I don't know that I will ever feel that way, as for me, I don't know that I will ever be able to quantify what I have avoided by doing this.

Not sure when I actually felt glad that I'd done it. I do know I was so relieved it was over, I was on a high for nearly 12 months! It goes without saying that I'm very glad I had it done. I have no pain at all and can do anything, although some tasks are awkward.

JenniferG
01-15-2011, 08:33 PM
Another question - are there drains from the incision site? When are they removed?

Most people do have drains but I didn't.

And is it possible to knit in bed that first couple of weeks? How much time did you spend up and moving around? I keep hearing 3 times a day to be up and moving, but for how long and doing what? Alternately I hear as much as you can - so what does that mean?

I think it will depend on how the medication affects you whether you will be able to knit. Some people are sending emails and posting messages in the first couple of days. I could barely watch and follow a tv programme.

I walked 4-5 times a day in hospital, up and down the halls. At home I walked the length of our street, stretching the distance out each day. At first I had someone with me when I went out walking. Some hospitals ensure you can walk up and down stairs before you leave, but I really only saw the physiotherapist on day 2 and 3 then she left me to it. I was really fit going in to surgery and I think that helped. My only problem was the medication didn't seem to do the trick...until I got home on day 19, as I said earlier.

leahdragonfly
01-16-2011, 10:26 AM
7. When did you first feel glad that you had done this? I don't know that I will ever feel that way, as for me, I don't know that I will ever be able to quantify what I have avoided by doing this.

Hi Lily,

I can definitely relate to your anxiety, and I think we have all been there when contemplating this type of surgery. Please don't be offended but I am a little concerned to read your comment above. In my opinion you need to have a very clear view in your own mind of why you are choosing to have this surgery now, and what you hope to accomplish with it. The recovery is no walk in the park, especially the early few weeks, so you will need to have a committment in your mind about why you are choosing the surgery now. I don't mean any disrespect, I hope you understand that. But perhaps, if you are not sure why you are having the surgery now, maybe it is not the time to do it. Maybe you need more time to develop a clear reason for wanting it. You need a clear set of expectations for what the purpose and personal goals of the surgery are, not just that a surgeon has told you that you need it. There is rarely a huge rush for this. Are you in severe pain that was not helped by conservative measures, is your curve showing documented progression currently, these are a couple of reasons to have surgery. But if you don't know why you're having it, and don't what you have avoided by having it, I think you might have a really tough time during recovery.

Please understand that my comments are offered in the kindest way possible, from the perspective of someone who is 3 months post-op.

Best of luck figuring it all out,

Gayle

sarah105
01-16-2011, 04:54 PM
Hi Lily,
I had my surgery with Dr. Grauer about 18 months ago. My experiences with him and Yale were all positive aside from one bad nurse). I had my surgery younger so my recovery was faster than most on this board, but I thought I could try and answer some of you questions.

1. Did you find that you needed 24/7 help the first two weeks? What did you mostly need help with?
I had family with me for the first two weeks (one in the hospital and one at home). I didn't need a ton of help by the time I was home. Before I left Yale, PT spent time w/ me to make sure I could sit up, roll, lay down, and climb stairs by myself. It helped to have someone around though to help me stay on top of the medications and to make sure I took them at the right times.

2. How long before I can shower?
My discharge papers from the hospital said I had to wait 7 days to shower. I was in the hospital for 7 days, so I was able to shower as soon as I got home. Dr. Grauer used some kind of surgical glue over my incision and it was ok to shower with it on.


3. How long did you stay in the hospital? They're saying 5-7 days and I am shooting for 4.
I was in the hospital for 7 days. The started preparations to send me home after 5 days because I was off of IV meds, I could sit, roll, walk, climb stairs, etc, but I started having a bad reaction to the meds at that point and got put back on IV meds so I had to stay a little longer. As soon as the got the medication situation sorted out, I went home. 4 days sounds pretty short though. Day 3 was the first time they really started switching to oral meds, removing the catheter, and pushing me to walk more than just a few steps. The transition to oral meds was tough and it took some time to get the dosages right.


4. How long was your surgery and how complex? The OR is booked for 5 hours.
I don't remember how long my surgery was, but 4-6 hours sounds about right. I was fused T3-L2. For my surgery, I did not have to wear a brace post-op.

I had a drain at the bottom of my incision site. I can’t remember exactly when it was removed, but I think around day 4/5ish. I definitely could have knit in bed the first few weeks. In the hospital, I spent most of my time in bed, listening to music, watching tv, or playing games on my iphone. I think I may have played a few card games with my family as well. I liked having my own throw blanket for the bed and my own slippers from home for walking the halls. Once I was home, I was definitely not in bed all day. I actually felt better being up and moving, I just got tired easily. I had no problem with stairs. I was walking around 2 miles once/day and other than that, I would go out and walk when my parents walked the dog and would get up to get food, go to the bathroom, move around. I felt worst when I was sitting a lot. I was ok if I got up and walked frequently and I was ok laying down.

Let me know if you have any other questions about Dr. Grauer or Yale.

Lilysaidwhat
01-16-2011, 05:08 PM
Thanks guys - and Sarah I am really heartened to hear that someone else is familiar with Dr Grauer. Do you know if he used allograft, or what, for the fusion?

Gayle, I know what you mean and think I didn't really word it right. I've got chronic daily pain despite Celebrex and Tramadol max daily doses and weekly PT. My curve is progressing at about a degree a year, but I currently have no respiratory distress.

I think what I mean is that ultimately, I will never really know how bad it will be if I don't do the surgery; I could be 60 without the surgery and be the same as I am now, or I could be 60 and rolled up like a potato bug, unable to breathe or walk or look up. Nobody can predict what exactly will happen. The surgery is first and foremost to stabilize my spine. I think I have about a 50/50 shot of pain relief (my pain is all lower and due to muscle fatigue on the exterior side of the lower curve, as well as my compensation. I am extremely well compensated such that both surgeons and my PT have all said that just looking at me, they would have never guessed how bad my back is).

I can't really see beyond the terror and fear of the surgery. I'm depending on my husband, family and friends to get me there, and having never been one to depend on others, this is incredibly hard for me. I don't feel confident that I will feel better and be pain free, but I do feel confident that time is my enemy, and that I have no choice but to do this as soon as possible to avoid additional degeneration and subsequent fusion.

I hope that makes sense and I take no offense at anything you said - it is well reasoned.

Pooka1
01-16-2011, 05:48 PM
Lilysaidwhat,

Given your great fear of paralysis, you should ask Grauer if he uses real-time nerve monitoring. I think if he does this would ease most or all of your anxiety over this issue.

Both my daughters had the monitoring and it is my understanding that the advent of this monitoring has played a large role in reducing permanent nerve injury to truly tiny numbers. When they get an indication that a nerve is being impinged, they back off. I have read one account of a surgeon correcting a huge curve in a child where they closed hm up and abandoned the surgery based on this nerve warning. In most operations, I am guessing they just ease up or wait or try something else and finish the procedure without nerve injury.

JenniferG
01-16-2011, 06:48 PM
My surgeon uses the spinal cord monitoring and he also wakes his patients up to check on feeling. I don't remember it, thank goodness.

sarah105
01-16-2011, 07:06 PM
Dr. Grauer said he used mostly donor bone and some bone from the spine (I guess he said it was obtained through the surgery anyway so they use it...or something like that). I believe I had the real-time nerve monitoring. I know I had one person whose only job was to monitor all of that stuff. I met her the morning of my surgery before I went in. I don't remember much, but I know she drew some marks on me to mark the places she would attach equipment and talked about it with me.

Pooka1
01-16-2011, 07:10 PM
Good that Grauer uses spinal monitoring and doesn't seem to use iliac crest as a bone donation site.

I was with my kids in prep-op when they were gluing the electrodes on and was able to talk with the doctor who would monitor them during the surgery. It was the same woman for both kids though their surgeries were about 19 months apart. I assume she is good at what she does.

Singer
01-17-2011, 07:17 AM
Hi Lily,

It is a daunting surgery to anticipate, and I found the anticipation to be worse than the event. Although the event is no walk in the park, at least you're dealing in the present reality and not imagining all sorts of scary things.

I went into this with pretty much the same feeling about it -- feeling very frustrated that I didn't have a crystal ball to see how I'd really be in 10 years. The fact that it's considered elective surgery blew my mind and I always said I would have felt better if it were something life-threatening.

Eventually I came to the realization that with or without surgery, I would never have a "normal" spine, and that at least with surgery, I would have a better chance of stopping the progression and lessening the pain. That's the way it turned out for me, so I'm glad I had it done.

It's tempting to think that if you leave well enough alone everything will be okay -- when in fact if your curves are progressing, you will almost certainly run into increasing pain and deformity.

Just in the time that I've been on this forum, the surgeons seem to be getting better and better at this, with less-invasive techniques and faster recovery times. You'll do great!

Pooka1
01-17-2011, 08:01 AM
Eventually I came to the realization that with or without surgery, I would never have a "normal" spine, and that at least with surgery, I would have a better chance of stopping the progression and lessening the pain. That's the way it turned out for me, so I'm glad I had it done.

This is how I have come to terms with my daughters' scoliosis. It becomes a game of cutting losses. Which action minimizes total loss. There is sometimes only the illusion of choice.

Lilysaidwhat
01-17-2011, 08:12 AM
There is sometimes only the illusion of choice.


Tell that to the insurance companies! LOL

Pooka1
01-17-2011, 08:29 AM
Tell that to the insurance companies! LOL

Excellent.

debbei
01-17-2011, 08:23 PM
Lilly,

I just sent you a private message.

Lilysaidwhat
01-18-2011, 10:32 AM
Thanks Debbe - I hate that I have to limit the characters in my reply to a PM!!!! Very annoying and hinders my ability to convey the sincerity of my thanks.

The Dr's office called this morning, and I am confirmed for 8:30 on the 23rd.

Did you guys find that the fear/anxiety came and went with each moment pre-op?

Lilysaidwhat
01-25-2011, 10:35 AM
I'm starting to step backwards and think I don't want to do the surgery. I am really afraid of loss of mobility and quality of life or that I will end up with more pain than I have now and ruin my life by doing this.

Reading about some of the horror stories I'm seeing here isn't helping - I'm starting to think maybe I should just enjoy what I have left, and when the pain gets too bad, just call it a day and say, well, it was a good run.

This is really, really terrifying and the prospect of ruining what life I have left with unbridled pain and a horrid recovery makes me think twice.

Singer
01-25-2011, 11:51 AM
Hi Lily, I sent you a PM.

hdugger
01-25-2011, 11:57 AM
The surgery decision is really, really hard. It's always a balance of the likely outcome if you have surgery right now and the likely outcome if you delay.

I have a 22 year old son with a 50 something curve who is delaying surgery because he's not in pain or progressing. If he starts having pain, it's going to tilt the decision towards surgery. But, while he's fine, the risk doesn't seem like it's worth it.

On the flip side, I have a 90 year old mother who really should have had hip surgery when she was in her 60s. Not having that surgery then really decreased the quality of her life for 30 years.

I wish you the best of luck in figuring out what to do.

golfnut
01-25-2011, 04:19 PM
I just had my surgery on Jan, 5 and I can already say I am glad I had it, I am 60 and in good shape and didn't want to push my luck by waiting. I have been overwhelmed with friends walking my dogs,food Cards offerring to drive, etc. Good luckk!

Lilysaidwhat
01-25-2011, 05:26 PM
Well, I am in pain. I have daily pain. My baseline is a 4, where I notice it when I get up, move a certain way, etc. but it's not horrible and I take full max doses of celebrex and tramadol daily. However, it does (the pain) impact my life daily. I muscle through it usually but I feel it, it's there, and often it is in the 5-6 region. 7 for me is unable to focus, 8 is panic attack and nausea.

I just worry how stiff I will be. Will I walk like a robot post-op? Will I be still able to turn my head? Shake my hips? Enjoy s*x? Dance? Yoga? Run? Walk in my 4" heels at work?

What if I just end up triggering one pain drama after another with repeated surgeries to try to fix what I did by doing this in the first place? I can't see over the battlefield to a brighter day. I know that down the road I will be in worse pain, unable to do things I do now, etc. - and I worry that if I wait, then I will be fused further than they will do it now.

I feel like I have no choice. And I feel like this could likely be the last 4 weeks of my life. And it makes me feel inconsolable despair.

Then I look at people who treat their bodies like crap, are fat, do nothing with their lives, and wander haplessly through the world without ever knowing chronic pain or major fears and decisions like this. And I resent them. How horrible is that? *I* get the raw deal and they wander aimlessly on in their fast food, exercise-less haze. But *I* get screwed.

I don't know what's worse, the fear or the rage.

Pooka1
01-25-2011, 05:50 PM
I don't know what's worse, the fear or the rage.

You got a raw deal. Bad things happen to good people. I'm sorry for everyone in that boat. We are carried along on a river of contingency, coincidence, and serendipity.

“Of course we have free will because we have no choice but to have it.” -- Christopher Hitchens

JenniferG
01-25-2011, 07:49 PM
That's the hard part, there are no guarantees. I was fortunate in that when I joined the forum, almost in tears with the fear, and asked for help, there was little mention of bad outcomes which made my decision easier. Despite the surgeon giving me a list of risks and complications as long as my arm. However, there have been a couple of horrible outcomes in recent times, which distorts your idea of your chances of a good outcome.

I would do it all again though, even if I hadn't had an excellent outcome. I was also fearful of my future. I lived with a dread that I might end up dependent on others. It can still happen, there are plenty of other things that can go wrong with our bodies. But at least now, my back will not be the cause.

I think your chances are very good of an excellent outcome. Just my feeling from the bits of data you pick up from reading these forums for years.

karena
01-25-2011, 08:18 PM
Hi Lily, so now you have tons of information. So, I don't know how useful another set of advice will be. I am pretty fresh (I think) from surgery. Other people got fused, I got (I call them mini boobs) implants in place of 7 discs. Not really a fusion, kind of. I am just about at 5 months post and am feeling better, doing more, trying to still rest which is important. So...

1. Did you find that you needed 24/7 help the first two weeks? What did you mostly need help with? Yes absolutely the more help the better. Having your network was one of the most important things that got me thru' this process. My husband worked all day, my mom came to help but I ended up in ER for a day due to not enough pain meds. Not fun.

2. How long before I can shower? We had the chair in the shower, used it once. Husband helped because you have to be hermetically sealed from getting the sutures wet. Pain in the butt. I have very thick hair, it was vegas summer and it was a process. In days you don't want to do that, use lots of those wet ones things. Yeah, ew, but it is helpful.

3. How long did you stay in the hospital? They're saying 5-7 days and I am shooting for 4. I was in 4 days. Should have been one more day to avoid that ER visit!

4. How long was your surgery and how complex? The OR is booked for 5 hours.
I was in 5 hours, recovery 3. My BP is naturally very low so I couldn't get 'woken up'. I had the rebotics with XLIF along with 3 monitors. I saw the monitor probes get hooked on me while waiting (not needles) except one which they waited till I was under anesthetic to do. My doc was a neurosurgeon which was my choice over the orthopedic consults I had. Felt more comfortable that this guy also does brain surgery.

5. When did you return to work? I have a 2 hour commute by train but am hoping to telecommute at 8 weeks. Is this reasonable or a stretch? I have a desk job.
I don't think I am typical. It took a long time for me to get up and about even with walking 10 minutes every hour. It was religion, but I did not feel comfortable moving and sitting for 3 months. But each surgery is different. Seems the fusion folks come to very quickly.

6. Was there anything that was good during that first 3 months?
So happy I had the surgery, first 3 months is very very tough. I know you are scared. I cried right before rolling into the room. Even though everybody was saying my doc was the best, you have that fear that you won't come out of it, etc. Pray, do positive speak, talk like you are already in perfect health. I did that before, and I said it all during my 10 minute walks, I prayed constantly. I became incredibly strong and resilient and know that helping people is now in my future.

7. When did you first feel glad that you had done this? I don't know that I will ever feel that way, as for me, I don't know that I will ever be able to quantify what I have avoided by doing this.
There was no other choice than surgery for me as I was going to lose my leg. 7 discs were gone in my back and I was in chronic pain (probably doing stuff I shouldn't regardless because moving kept me from dwelling on pain). 3 months was a turning point. 3.5 was better. 4 was way better. I still have issues, alot of people do, your journey will be your personal one. Reading on this website saved me as did my network of friends checking in, helping, shopping, errands, driving to appts. The doctor has this questionnaire afterward (2 months) if I were to do it again would I opt for surgery? Absolutely yes, even if I wasn't going to lose my leg!!

jeneemohler
01-25-2011, 08:22 PM
Hey Lily-

I am only 2 weeks post op, and I sure hope I can ease some of your fears. I haven't posted my progress, I was waiting until my 2 week check up yesterday. I have been struggling with almost guilt-like feelings about my recovery. It has been so great, that I feel a little awkward about flaunting it when others have had rougher recoveries. But not all recoveries are as rough as some, so I need to remind people of that.

Please look at the positive. I chose to look at all the positive things I would experience, and to make exciting changes with things that may need adjusting. I can honestly tell you, I am feeling even better than my best "positive" imaginations were. I am in little pain. Yes, there are is an uncomfortable tightness in my back and I'm a little sore, but it was nothing like the hip/back/leg pain due to sciatica and spasms. I was on vioxx, then mobic for 15 years to control the pain enough to enable me to work. Some vicodin when it was especially bad, but I hate taking meds.... Like you, I hid my back well. I had over 70 degree curves, both lumbar and thoracic, and yet no one knew I had that bad of a back back, because I didn't want anyone feeling sorry for me or feel like they had to take up any slack on my part. I had 3 pinched nerves and my spinal cord was being compressed. But I stayed as active as possible, and that has helped, I know. The doc said I have the bones of a young woman. Yes, I am stubborn and type A, also!!!

I had nerve monitoring, also. It is a huge relief knowing that they weren't digging around there with no idea how my nerves were doing. Thank goodness for all the advances. I was fused from T4 to my pelvis with pelvic fixation. Both curves went from 70's to around 35 degrees. I only grew one inch. I have a long torso and didn't want to look awkward either. But I'm not. It is just all rearranged in there and the lumps, humps, and protrusions are GONE.
Wouldn't it be nice to not have to take any more medications for pain, not to have to worry about the curves progressing or waiting too long, and then not getting enough correction to make it worthwhile? I kept putting it off year after year. Then, in 6 months, I shrank 3"-it was a wake up call that I could not put it off any longer. Up til then, it was a degree or 2 a year. If I waited another year or two, my flexibility would hinder my correction. And I believe we should go through this while we are as young and healthy as possible.
It seems like there is a pattern with us on this site. In our 40's and 50's, it seems to take a noticeable change for the worse.

My greatest fear was also of being stiff and limiting my activites. I can already tell that it won't be as bad as I imagined. I have a friend that told me I would be like a prima ballerina. They have such grace and elegance, and always dance with a erect spine. I sure prefer elegant and erect to stiff and awkward. It is all in the perception! And yes, my back feels like a ballerina now. It looks like one too! Don't shortchange yourself-get the most correction they can and you will be glad for the rest of your life that you did. Please contact me if you would like to talk sometime. I would be more than happy to help. Despite my positive outlook, I was still pretty scared and fear does creep in no matter how well prepared you are. Hang in there!!! Send me a private message if you want to talk.

Jenee'

Lilysaidwhat
01-27-2011, 01:00 PM
Everyone, thank you for the reinforcement. I've stepped back from the ledge today and am forging ahead toward Feb 23.

What I have noticed is that the fear is worse later in the day for me (I am a morning person so maybe being tired is part of that - my sleep is fitful at best these days due to anxiety, and I'm living on anywhere from 1.5 - 6 hrs of sleep depending on the day), and that it's better to take xanax as soon as the fear starts creeping in rather than waiting for it to be in full swing.


Can we talk about car rides for a minute? I have a super cute convertible and reallllly want to drive it on my birthday but that is 3 months post-op. As for work, I'm assuming to be out 4.5 months because I have to be able to come to my office in order to be cleared to work by both my surgeon AND my company's doctor. However, it's a 2 hour commute by [often jarring] train, and I can't do that for 4 months. Is there a 4-month post-op check up to see how the fusion is going?

Elisa
01-27-2011, 07:36 PM
Lily, according to your signature, you're almost a year post-op, hehe.

Lilysaidwhat
01-27-2011, 08:30 PM
Lily, according to your signature, you're almost a year post-op, hehe.


Oooooops. Thanks for the reminder!

sarahcant
02-01-2011, 08:29 AM
I too am a terrified type A New Yorker who's surgery is scheduled for March 15 with Dr. Erricco at NYU. Can I ask why you picked your surgeon and hospital? Sometimes I feel that too much information is scary...maybe I'll put my head back in the sand for a while because I already cant sleep and feel so out of control. I also have a really hard time asking for help and have a teenager who is graduating HS in June and a senior in college graduating in May and I am going to be there come hell or high water!!! I guess staying positive is the only solution in this game. I pray that for both of us and everyone else on here waiting for surgery a speedy, easy recovery.

jrnyc
02-01-2011, 11:50 AM
sarah...
how many surgeons did you see for consults...?

jess

Karen Ocker
02-01-2011, 02:50 PM
Dr. Errico is an excellent, experienced scoliosis surgeon-both with primary surgeries and revisions. I have heard many good reports on an older forum from his patients and I actually worked with one of his patients.

jeneemohler
02-01-2011, 03:03 PM
Sarah, there is so much truth in the saying "fear of the unknown". However, no matter how much you know, how prepared you are, how positive you are, it is still a very scary thing for anyone to deal with. And there will always be a little fear. We all have had it, and it is totally normal. But my only fears at the end were the fears of the unknown, the things I couldn't know for sure, like how much correction I would get, and how the recovery would go. So you have to look at the odds. The huge majority of people who have had this surgery are very happy they did it. It will be tough at first, but we scoli people are tough cookies by nature. We already deal with so much! And down the road after recovery, almost everyone feels they are better off. Not always perfect, let's be realistic, but definitely better off than before surgery. And lots of them DO feel pretty perfect compared to the old days. I already do, only 3 weeks out. So hang in there!

Lily, how are you doing lately? Feeling any better? I also own a sweet little red Volvo convertible, and really hope I can drive it. It may take a little acrobatics to get in it. But I've already been mentally working on it in my head!!! Slide the seat all the way back, recline it a little, use the "oh sh**" handle to pull myself in, and then slide the seat forward. Of course, I hope to be able to go around topless for half the year so I don't have to worry about it! Hey boys! Topless as in no roof!!!

Hang in there ladies!!!!

jrnyc
02-01-2011, 03:14 PM
Dr Errico was in NY Magazine's list of best orthopedic surgeons one year...he has an excellent rep...
but it is always good to see a few surgeons, to see if they agree as to the length of fusion, type of procedure, etc...
Manhattan has a list of top scoli surgeons..including, Dr Boachie, Dr. Lonner, Dr Neuwirth, and several others...
i do not know that all do minimally invasive procedure for lumbar...but then, not everyone wants that...

best of luck...
jess

Lilysaidwhat
02-02-2011, 08:50 AM
I'm doing better, thanks - I'm 3 weeks out from today. I've increased my PT, been to my MRI which showed that my deterioration is only as far as L2/L3 (we looked at the report last night but my pre-op meeting is next tue so we'll see what he says) and the L4 is in really good shape.

I have received such an amazing outpouring of support from all over - my phys therapist is coming to my house the week I get home to check on me and do a little passive stretching; my massage therapist is going to work with my PT to see when she can come to massage my arms and legs and work lightly on my back muscles to prevent spasms; one of my friends is an esthetician and coming to give me a facial when I'm 1 month post-op; three friends are coming from Florida, Maine and VA to visit at different times; my hairdresser told me the other day, "Don't worry about anything. We'll take care of you. We're setting up days to bring over meals, and as soon as you're up for it, we'll bring wine and scrabble. We'll get you through this, so do not worry." Another friend knows one of the anesthesiologists there and put in a call. They said that they'll make sure I get "top notch care" and will assign their best team to my surgery. That is really huge as I have fears about the anesthesia.

I feel a bit like George Bailey and am completely gobsmacked by the generosity and kindness of people.

I went to Boachie first, but didn't like him and was also averse to paying out of pocket and hoping to be reimbursed by insurance. Then I went to Yale, and have researched Dr Grauer quite a bit. He has an excellent reputation and was described by at least two colleagues as "meticulous" and "anal about precision". That's the guy I want working on me. He did concur with Dr Boachie's assessment, but was more conservative than Boachie's recs.

In other good news I found out that I have secondary insurance, so I will be able to pay my deductible and most everything else should be covered. That is a huge load off my mind.

The reality is that this is coming for me whether I like it or not, so I need to get my game face on and go forward.

Every time I do anything related to the surgery, it becomes that much more real - the MRI was very stressful, not because of the MRI itself but because I fear the results. I must admit that xanax is a dear friend of mine now - I take it daily at 4 hour intervals and that seems to keep the panic/extreme fear at bay. I think this will suck for a few months but I am so driven to get it behind me and move on.

Sarah, I picked my surgeon and hospital for several reasons, including proximity to my home (logistics of doing this 2 hrs away were daunting), I didn't want to be far away from where I was treated in case of post-op difficulties, and my husband works at the hospital so I am hoping that gets me a little extra care.

leannebr
02-02-2011, 02:39 PM
My experience hasnt been as good as the rest of the comments Ive read. So I'm not trying to scare you, but dont plan on 4 days in the hospital. It was more for most. For me it was 6 and I was on alot of narcotics when I left. The constipation is terrible and miralax was the only thing that helped at all for me. I am having complications still at 3 months post op and had a great surgeon but one who has no interest much AFTER the surgery. With great respect as well, dont do the surgery unless you are having alot of pain for along time and have tried all other avenues. The surgery for me was and has been a nightmare, and I regret it and wish I could turn back the clock. I would have never done this. I am taller and straight but it has been the worsed experience and challenge of my life. I was very very strong, very healthy and toned, didnt smoke, not at all over weight and power walked 2 miles a day. I was really proud of my health. For me it hasnt helped and I am not doing well after this surgery. I was also very very independent and have had someone helping me 24/7 since it now. I did not shower myself and still dont actually.
Think and pray alot about it. Its a very big decision. Many do well, and the younger usually heal much faster. I am 50. My Dr uses the body torso brace for the 1st 3 months OR until fusion has taken place which can take longer in older people. The brace is awful and I am praying Ive fused and will be allowed to go without it tomorrow at my 3 mo check.
My curves progressed from top or thorasic 38 degrees and bottom 26degrees, to 47 degrees on top and 38 degrees on bottom in 3 years time. So like you, I didnt want to end up with inablilities later and it helped my decision to do it. I also had pain. But it WAS appealing to think to of wearing clothes that werent accommodating and covering my deformity if I had the surgery too. Having said all this, again, I regret it. I'm only 3 months and I'm maybe too early to judge my outcome. I have suddenly had a crushing bout of Reumatoid Arthritis after the surgery. Suddenly elbows and knees and calves full of fluid and barely able to walk. Other issues but I will save you the worry because we are all different. I feel my body is rejecting the titanium. But I'm not a Dr. :) Whatever you decide I wish you the best and stay in touch with the people on here, they will save you and your sanity if things get tough.

Lilysaidwhat
02-02-2011, 04:57 PM
Leanne I'm so sorry you've had so many problems.

One of the reasons I'm doing it now is because I'm already up to 68* (or 64 depending on who measures it) up top and my pain is steadily increasing. The longer I wait, the more deterioration and more that I'll have to fuse. I am a very "young" 38 and am hoping this gives me the best "bang for my buck" with the most optimal opportunity for a swift(ish) recovery. Also, we want to adopt kids. It is surely going to be better to do this BEFORE I have babies who need to be picked up - right now, pre-op, I can definitively say that I will only hold a baby when I am seated because I never know when my hips will give out. I want to be able to hold my children. Pick them up when they cry. Walk around the nursery, rocking them and shushing them back to sleep. Those are not a possibility for me now.

I am admittedly worried about constipation. I've never been constipated in my life and it sounds really awful. I have been under general anesthesia for minor surgeries, and have taken percocet, vicodin, etc before without issue.

My husband says the two big drivers for getting out of the hospital are fatigue and constipation (you have to be able to walk stairs and take a poo). Both of those can be remedied with a triple cappuccino, which I drink every morning and he promises to bring me as soon as I'm not nauseated. Maybe it will work, maybe not.

I think it's good that I have a goal of 4 days to get out. If it's 6, it's 6, but I will shoot for 4. The less time in the hospital, the lower the risk of infection, MRSA, staph, and bad sleep. And of course, the lower the bills.

If this is the beginning of one compounding issue after another then I'll deal with that when it comes. But for now, I have to believe that it's the best thing to do, and that time is a bitch. The longer I wait, the worse it will be on me.

I wish you all of the best and hope how soon you feel like - nay, better than - your old self. hugs to you.

jeneemohler
02-03-2011, 01:50 PM
Wow Lily-
I am amazed at how different your tone is in this last post, as compared to the first "I'm terrified" post. You seem to be more accepting, and it looks like you have looked at the surgery realistically from all the angles. Yes, things can and do go wrong, but only in a minority of the cases. This may sound silly, but I'm really proud of you!!! It will ALWAYS be scary, but the more you know and stay on top of remaining positive, the easier it gets. I am also almost 50 (not a youngster but not TOO old!) and I did great. I'm no superhero, just an ordinary woman. You will do great! We are all here rooting for you while you are waiting this out!! Believe me, that was the hardest part for me.

sarahcant
02-04-2011, 08:32 AM
I really need to learn how to read this forum! Here I am feeling sorry for myself that no one replied. waaa anyway thanks everyone for the support. So sorry leannebr for your troubles. I am totally sure that I need this surgery. I cant even walk a block with my dog or on a treadmill without terrible pain. My back muscles are very tired of holding up my spine. I also have numbness in my legs. My right side used to be the only one that bothered me and now my left is terrible. I'm also starting to not be able to stand straight at all. I have deteriorated terribly since hitting my late 40's. I am on vicodin now all day. I used to get away with one and a half at night but no more. I dont see that I really have much of a choice here. I too have a wonderful friends who have offered support. I'm so worried about my gray hair and I spoke to my hairdresser who said "dont worry I make housecalls!" and I have a friend who is a massage therapist who already said she would come over and massage what she can. And Jennee yes we all seem to be very tough cookies! I'm positive that my stubborness and toughness will come to my rescue when I need them. Jess I have seen everyone except Boachie they all say the same thing. I know a few people that have used Dr. Errico and they all love him and he takes my insurance so I'm taking that as the sign to go ahead and just get this over with. Thanks everyone for your support --- I'll definitely be needing it!

leannebr
02-06-2011, 12:12 PM
I wish you all the very very best from the bottom of my heart. I pray you will have a wonderful outcome and everything goes really great. It's such a hard decision, I know, I didnt sleep for a long time trying to make the decision. We are all a TEAM here on this forum, in my eyes, and everyone knows how you are feeling and can help you, support you and comfort you. :))) Most importantly look to God for answers and help. Even though I have had so much problems since my surgery, I still believe God directed me to do the surgery and the outcome is His plan for me as well.

JenniferG
02-06-2011, 06:10 PM
Leanne, please keep us updated won't you. I'm sorry you're enduring this and I hope you get the proper treatment. I hope it's not long before you tell us that you're getting help and it's working.

Lilysaidwhat
02-09-2011, 08:10 AM
Leanne, I really hope you get some better health soon. I can't imagine your frustration.

Jenee', I feel like I don't have a choice so I have to get my game face on.

Yesterday was blood donation #1 (second is Monday), final bloodwork, final Xrays, etc. Confirmed that I have God's smallest airway and get the pediatric sized #1 tube. Yay. I'm sure that won't be sore post-op....

Otherwise the big news is confirmed - I'll be fused T3 - L4. Definitely no lower than L4, but he may get in there and opt for T4 instead. Let's all cross fingers for that please.

Stainless steel rods, not titanium for me. He recommended autograft, I asked for allograft and he said no prob, plus it reduces surgery by 20 mins or so.

I don't go to Recovery at all. Directly from 5-6 hr surgery to SICU where I will stay overnight, up to 2 days depending on progress. Then we get the standing, and start food intake with ice chips.

I'm a puker by nature so the anesthesiologist - who was so amazing that I am going to send a letter to their group - gave me Zofran and told me to take that, Xanax, and my normal tramadol dosage before I leave for the hospital to help with the nausea.

My curve is pretty flexible which is good news. I told him I don't want to be much taller, he said I will get between 0.5" to an inch. That's fine, since that's what I lost. Otherwise no rib removal, and it should be fairly straightforward. They got a lot of correction doing traction for the xray - and I suspect it was more than normal (he seemed a bit impressed) due to the fact that I've been in PT and getting traction stretching weekly for almost a year. Big ups to David Mikos, the best PT ever.

I told him my concerns about shift, and he said he will be sure to avoid correction that would make me that way.

The next two weeks are going to be really hard - and I know the waiting is almost worse than whatever I'll encounter physically. It took 1.25 mgs of xanax to get through yesterday. That's 5 times what my normal dose is.

I spent the weekend with my family down south, and my niece (she's 8) has insisted that she come spend her spring break with me. She is such a caretaker by nature and wants to "help by bringing things, playing puzzles, and I'll even keep (my husband) company by playing Wii. Did you know you can play Mario Kart from your bed?" She was scared when I first explained a little about the rods, but when I said that it's like a cast for a broken bone but inside your body, she freaked that they will "be in there forever." I said, "Yeah, but it kinda makes me like a Transformer." She settled down and said, "Well, that's pretty cool, I guess."

So Aunt Transformer will have bedside service for a week in late March.

It's just the next two weeks that are killing me.

Thanks again for the support you guys.

loves to skate
02-09-2011, 10:20 AM
Good luck Lily. There is nothing like a child around to help lift your spirits after surgery.
You are lucky already and you will get through the waiting, surgery and recovery with flying colors.
Sally

diane2628
02-09-2011, 09:53 PM
1. Did you find that you needed 24/7 help the first two weeks? What did you mostly need help with?

I had t3-t12 surgery 10 years ago, at 30. I stayed with a friend for a week (was single then), and needed some help but definitely not 24/7. Mostly lifting things, an arm to lean on some times.
2. How long before I can shower?
Was a week for me. Two words - dry shampoo. Look into it!
3. How long did you stay in the hospital? They're saying 5-7 days and I am shooting for 4.
Out on day 4
4. How long was your surgery and how complex? The OR is booked for 5 hours.
5 hours, posterior only.
5. When did you return to work? I have a 2 hour commute by train but am hoping to telecommute at 8 weeks. Is this reasonable or a stretch? I have a desk job.
PT after 3 weeks, FT after 4. Desk job, was tired but had no problems.
6. Was there anything that was good during that first 3 months?
Yes, most things. Recovery was very smooth, little pain, went for long walks after the first week, ate good take-out, read good books, watched movies.
7. When did you first feel glad that you had done this? I don't know that I will ever feel that way, as for me, I don't know that I will ever be able to quantify what I have avoided by doing this.
A few months later. I didn't have the level of pain you have, but I wanted to do it sooner rather than later while I was healthy. It was smooth and easy. I sometimes wish I had waited until the newer minimally invasive or front/back approaches were more established so I could have done those, but otherwise no regrets.

diane2628
02-09-2011, 09:57 PM
The only other thing I would say is that recovery from surgery is a good time to let go of control. You can't control how you're going to feel, and you have only some control over how your recovery goes. I know it's hard to let go of that, and to let yourself be helped, but it's not the time to be type A. However it goes for you - and it will likely go quite well - the most important things while you recover are to relax, rest, do your pt, and take it easy. As a friend told me before I had my surgery - think of it as a nice long vacation with an unpleasant task at the beginning.

Lilysaidwhat
02-14-2011, 03:23 PM
Thanks Diane - that is a good way to look at it.

I really believe that the waiting is worse than the rest. I just want to get there, get the Versed, wake up and move all 10 toes, then get up the next day, and I want to walk the hell out of that hospital within 4 to 5 days. My surgeon said 4 is unlikely but we can shoot for it. I'll give it five. After that I may start freaking. I want to get home and get past all of this so that I can move on with my life.

I can't believe it's only been 45 days since I first found out I needed this surgery. It had never been even a possibility until then. Truly, my hat is off to those of you who sit with months and months of waiting for this surgery. That would drive me mad.

JenniferG
02-15-2011, 03:48 AM
I love Diane's advice to call it a vacation in those early weeks. Consider it a vacation from all your usual responsibilities. I enjoyed my time off recovering, I absolutely did completely capitulate. It was weeks before I had the urge to peel a potato or put the laundry on. After always being in control from years of single motherhood, I was the one who planned everything right to the nth degree, I need order and sanity and never thought anybody else could manage that! Well, my partner was a bit slack with the ironing and the vacuuming (he continued working full time) but I couldn't have cared less. It wasn't my worry! I just slept and slept and slept. And walked and ate! It wasn't an awful time because I was able to..capitulate! ;)

Doodles
02-15-2011, 01:16 PM
My experience was very much like Jennifer's. I always needed to be the one in control of things after 4 daughters and teaching for 35 years. I was worried sick that there was no way my husband could handle it. It was amazing how he stepped up to the responsibilities. Not always like I would have done it--but I didn't care! Janet

JenniferG
02-15-2011, 04:36 PM
Janet - <smiley face> and <thumbs up> (my emoticons don't work!)