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rjmacready
02-08-2017, 03:40 PM
To All The Vets: I will be in a residential rehab for an unknown number of weeks > my release from The Spine Hospital. My insurance put me into one for 8 days for a broken femur, so I am certain I will be a resident for an extended period. I will have several EZ Reacher grabbers, sock and shoe tools, & a tablet for email/entertainment with me. I have seen a lot of talk about mattress toppers. The beds in these rehabs are not exactly like my Tempur. I will have nobody waiting at my beck and call when I finally return to my home. I fear this will prolong my stay at the rehab. Dr. Lenke wants to keep everything local so his staff can do status checks, which means I will be stuck in NYC with nobody who can drop off the odd item I might need- I will be totally dependent on the rehab. That degree of dependence is unsettling. If anything comes to mind that you found particularly handy during those first few months post op, please post it so I can be prepared as possible. Thanks, RJM

titaniumed
02-09-2017, 12:18 AM
Chet, You will have to let go....I know exactly what you are saying.

For devices, you will be ok.....on the foam, you might have to have somebody bring one in for you, ďif you need itĒ. Or, simply have one delivered to the rehab facility. UPS delivers anywhere, if you need photos of UPS trucks delivering out in the Arizona desert I can post photos of this for you. I would bet that UPS will deliver to you room #. It wouldnít be a bad idea to call them up and ask about this. Amazon is also doing food now, you can order a prime rib with a loaded baked potato, but you might get caught by the Lenke staff.....wouldnít that be something? Who ordered the banana split?

https://primenow.amazon.com/restaurants

What bothered me the most was that people will come in while you are sleeping and move the table next to the bed. The phone is always an inch too far to reach, then you have to find the nurse call button. (Donít worry, it will get moved also) I guess these are little things but you cant let this stuff drive you crazy, its not worth it.

Its REALLY good having the Lenke staff close....

Ed

TXMom
02-09-2017, 02:00 AM
To All The Vets: I will be in a residential rehab for an unknown number of weeks > my release from The Spine Hospital. My insurance put me into one for 8 days for a broken femur, so I am certain I will be a resident for an extended period. I will have several EZ Reacher grabbers, sock and shoe tools, & a tablet for email/entertainment with me. I have seen a lot of talk about mattress toppers. The beds in these rehabs are not exactly like my Tempur. I will have nobody waiting at my beck and call when I finally return to my home. I fear this will prolong my stay at the rehab. Dr. Lenke wants to keep everything local so his staff can do status checks, which means I will be stuck in NYC with nobody who can drop off the odd item I might need- I will be totally dependent on the rehab. That degree of dependence is unsettling. If anything comes to mind that you found particularly handy during those first few months post op, please post it so I can be prepared as possible. Thanks, RJM


Hi Chet,

I just want you to know that I will be praying for you. I am sorry that you must go this alone. I wish my husband and I could help, but we are so far away and I'm about to have my surgery as well. I agree with Ed about Amazon delivering anything anywhere. Frankly, it amazes me what they can/will do. I will be thinking of you.

Sincerely,
Sheryl in TX

cathydrew
02-09-2017, 05:28 PM
To All The Vets: I will be in a residential rehab for an unknown number of weeks > my release from The Spine Hospital. My insurance put me into one for 8 days for a broken femur, so I am certain I will be a resident for an extended period. I will have several EZ Reacher grabbers, sock and shoe tools, & a tablet for email/entertainment with me. I have seen a lot of talk about mattress toppers. The beds in these rehabs are not exactly like my Tempur. I will have nobody waiting at my beck and call when I finally return to my home. I fear this will prolong my stay at the rehab. Dr. Lenke wants to keep everything local so his staff can do status checks, which means I will be stuck in NYC with nobody who can drop off the odd item I might need- I will be totally dependent on the rehab. That degree of dependence is unsettling. If anything comes to mind that you found particularly handy during those first few months post op, please post it so I can be prepared as possible. Thanks, RJM

I live on Long Island about an hour away. If you really need something I can help.

osumike
02-10-2017, 02:43 PM
I live on Long Island about an hour away. If you really need something I can help.

If this doesn't show how amazing the people on this forum are... It's just great.

titaniumed
02-10-2017, 08:36 PM
If this doesn't show how amazing the people on this forum are... It's just great.

Oh Yeah....Love it.

Cathy made it....(BIG SMILES!!)

If I were in NY, I would do the same thing.....I used to live in Jersey, you know, out west. (Only a New Yorker would understand) Ha ha

I would actually sneak prime rib into the hospital for my dad when he had ALS. Thatís why I mentioned it....I would get the EVIL eye from the floor nurses. You have to be smooth.... to pull this off.

You gotta do what you gotta do. (smiley face)

Ed

rjmacready
02-11-2017, 05:33 PM
Ed, Certainly your and Cathy's sentiments are most gracious. You may be correct in the fact I could be overthinking this upcoming affair. Seeing as this is a result of a previous surgery, I always ask myself if I had been more diligent, asked more questions, etc. the outcome might have been different.

I'm sure I'm not the 1st patient who has no family extant, nor people who can simply put their lives on hold & wet nurse me. Dr. Lenke strikes me as the kind of person who has seen it all. C

susancook
02-11-2017, 06:37 PM
To All The Vets: I will be in a residential rehab for an unknown number of weeks > my release from The Spine Hospital. My insurance put me into one for 8 days for a broken femur, so I am certain I will be a resident for an extended period. I will have several EZ Reacher grabbers, sock and shoe tools, & a tablet for email/entertainment with me. I have seen a lot of talk about mattress toppers. The beds in these rehabs are not exactly like my Tempur. I will have nobody waiting at my beck and call when I finally return to my home. I fear this will prolong my stay at the rehab. Dr. Lenke wants to keep everything local so his staff can do status checks, which means I will be stuck in NYC with nobody who can drop off the odd item I might need- I will be totally dependent on the rehab. That degree of dependence is unsettling. If anything comes to mind that you found particularly handy during those first few months post op, please post it so I can be prepared as possible. Thanks, RJM

Hi there, sad to admit that I am a 5 times vet of spinal rehab surgery. My thoughts:

- make sure that you are sent to "intensive rehab", which means that you need at least 2 of 3 kinds of rehab: PT, OT, or speech. PT and OT are what you need. You also must agree to 3 hours/day....usually 5-6 days a week of rehab. That amount is exhausting, esp right after surgery, but buck up and do it.

- check on laundry options. Some rehab places that I "endured" had laundry and others expected family members to clean your clothes.

- I personally never found rehab mattresses uncomfortable. If you do, ask the rehab place to find you a better mattress instead of your sending for one.

- my biggest frustration was being able to find the call bell. Bring a tie [those ties for electronics work well, thanks Irina for your idea].

Good luck!
Susan

titaniumed
02-11-2017, 09:32 PM
Ed, Certainly your and Cathy's sentiments are most gracious. You may be correct in the fact I could be overthinking this upcoming affair. Seeing as this is a result of a previous surgery, I always ask myself if I had been more diligent, asked more questions, etc. the outcome might have been different.

I'm sure I'm not the 1st patient who has no family extant, nor people who can simply put their lives on hold & wet nurse me. Dr. Lenke strikes me as the kind of person who has seen it all. C

Overthink our surgeries? Perhaps......It was a 32 year wait for me. Of course, I ignored scoliosis for many years and lived my life..... I watched scoliosis technology progress over a really long time waiting for my day. The pedicle screw was the cats meow in 1986. That got my attention and offered more hope.

For my actual surgeries, I didnít plan or buy anything, maybe I had too much on the plate....Lawyers, contracts, the sale of my precision manufacturing business with 54 employees, A/P deformity surgeries with no guarantees. I guess thatís a plate load.

I DID have a lot of trust in my surgeons....All the other stuff doesnít matter, its about faith, will, and positive attitude. My commitment was powerful regardless of what happened. The docs even commented on this in my hospital reports. Wanting to get up out of bed standing there with a spider web of hoses. I was ready for anything in ICU. They had me bombed, I didnít feel anything in ICU. I was there for around 4 days before they moved me to the ortho wing. The IV and injectable meds are extremely powerful....Man-o-man!

I was one of those along with Tonibunny who was kicked to the dirt as kids with scoliosis many years ago. I am still bitter, it was a different time period, but it created a strong survival instinct in us. ďIts just a curved spineĒ and ĒIt doesnít hurtĒ comments are NOT what you say to scoliosis kids.... She had it a lot worse that me, she admitted to me in e-mails. She passed from cancer. She was an angelic soul.....

I didnít tell my family I was doing my surgeries....I actually only told just a few inner circle friends and the people I work with. So, I guess a solo thing....

The only people who truly understand are the scoli members here who have done battle.

You have a damn good surgeon, now its all up to you. We are with you Chet, and you are going to get through this. Forget everything in the past, scoliosis is an ever changing evolution of events, pain, and mind. It truly is an adapt as you go program....which we make the best of in each case scenario. Worry and anxiety is this unnecessary self induced stress that we all go through, but you can control things using your mind....and deep breathing.

One of my worries was the bed pan question.....But, I didnít worry too much, and guess what? It didnít happen because I was NPO. No food by mouth, stubborn ileus, no poop. No food, no poop. Simple stuff. (smiley face)
https://en.wikipedia.org/wiki/Nothing_by_mouth

The benefits of ileus!...wow! Glad I didnít worry too much about that one..... There are a thousand things to worry about. Which one do you worry about?

All of them or none of them?

Ed

rjmacready
02-12-2017, 05:48 PM
Good luck!
Susan[/QUOTE]
Hi Susan, I am truly sorry for the amount and severity of the trials you have endured. It does make one wonder- some people seem to walk between the raindrops all their life; their idea of a major medical trauma is a tonsilectomy. For others it seems the storms never stop and hit broadside- they just take a break now and then. Your tips are most welcome. I will raise these questions before any commitments are made. I don't know Dr. Lenke's support staff very well at all, so don't have the same amount of trust in them. They have been forthcoming and responsive so far. I tailor my inquiries to the most pressing issues as to not be viewed as a problematic patient. I certainly got that feeling from Kebaish's staff at Hopkins. Questions were treated as an affront to their expertise, and information was guarded as if I had umitigated hubris in even inquiring about it. They're not removing an ingrown toe nail, they're gutting me like a fish. I felt I had a right to know the surgical plan, etc; they did not see it that way. Dr. Lenke provided me with a surgical plan on my first visit. Your rehab facility information is exactly what I was looking for. Thank you, and I sincerely hope your tribulations are confined to the past. As a local politician who was a high ranking member of the US Navy said, he wished me "calm seas." I hope the same for you. Chet

rjmacready
02-12-2017, 06:25 PM
Ed, If I were to allow it, the questions/worries would overwhelm me and possibly even cause me to cancel. My immediate personal connection with Dr.Lenke has allayed many of the fears I had with Kebaish. My biggest concerns used to be things such as neurological damage, infection. Now, it is the post op period and loss of independence. The vast majority of people would not live as I do I suspect, but I still manage by myself. I am surrendering that control. I am a regimented person who is only content in a well defined, spartan routine that does not rely upon anyone else. This will be a virtual tsunami of change; change that is enormous in magnitude, and most of all celerity. I will find myself with no real control over anything for quite some time. Total loss of control is abhorrent to me, but I recognize its unavoidability. Chet

TXMom
02-15-2017, 11:13 PM
Ed, If I were to allow it, the questions/worries would overwhelm me and possibly even cause me to cancel. My immediate personal connection with Dr.Lenke has allayed many of the fears I had with Kebaish. My biggest concerns used to be things such as neurological damage, infection. Now, it is the post op period and loss of independence. The vast majority of people would not live as I do I suspect, but I still manage by myself. I am surrendering that control. I am a regimented person who is only content in a well defined, spartan routine that does not rely upon anyone else. This will be a virtual tsunami of change; change that is enormous in magnitude, and most of all celerity. I will find myself with no real control over anything for quite some time. Total loss of control is abhorrent to me, but I recognize its unavoidability. Chet


Hi Chet,

This is Sheryl. My surgery is upcoming. I've changed the date to Mar 21 and 23 and I'm much happier about that.

When is your surgery scheduled? Do you have anyone that you can depend on to give you some help? Have you thought about Visiting Angels or a service such as them? Also, I've been praying for you and I will continue to do so.

Talk to you soon,
Sheryl

rjmacready
02-16-2017, 05:32 PM
Hi Sheryl, You said Mar 21 and 23. Are you having the double procedure like Ed did? Be it for better or worse, mine is scheduled for July 10 as a 12 hour marathon. All done via posterior. Ed said it was a very extensive list of procedures, so hooray for me. I'll be lucky if I know where I am for days afterwards. T1-Sacrum, the whole nine yards. Multiple osteotomies, one resection, ad nauseum... I could have attenuated the amount of trauma by acting on this earlier, I suspect most everyone looks at videos of this surgery and balks. I've reached the point I have to do something, so it is all up to chance and Dr. Lenke. I have no illusions of a perfect outcome with no complications along the way. You've got ~ 6 weeks, is time slowing or accelerating for you? Chet

TXMom
02-17-2017, 12:18 AM
he
Hi Sheryl, You said Mar 21 and 23. Are you having the double procedure like Ed did? Be it for better or worse, mine is scheduled for July 10 as a 12 hour marathon. All done via posterior. Ed said it was a very extensive list of procedures, so hooray for me. I'll be lucky if I know where I am for days afterwards. T1-Sacrum, the whole nine yards. Multiple osteotomies, one resection, ad nauseum... I could have attenuated the amount of trauma by acting on this earlier, I suspect most everyone looks at videos of this surgery and balks. I've reached the point I have to do something, so it is all up to chance and Dr. Lenke. I have no illusions of a perfect outcome with no complications along the way. You've got ~ 6 weeks, is time slowing or accelerating for you? Chet

Hi Chet,
Thanks so much for replying. Yes, mine is the same type procedure that Ed had. Here is my surgery plan and I'll have to abbreviate it for time sake:

Pelvic fixation
Arthrodesis Posterior Single; Thoracic
Arthrodesis, Posterior, 7 - 12 vertebral segments. I'm scheduled for a nine level in total, so I guess this numeration is just the description, unless the doctor is suspecting more. I'm not sure.
Arthrodesis, Anterior inter body technique to prepare interspace.
Arthrodesis ...... Including laminectomy or discectomy sufficient to prepare interspace....
Arthrodesis, Posterior or posterolateral single level lumber.....
Insertion of inter body biomechanics like device -- synthetic cage/mesh, Anchoring, etc.
Another arthrodesis of lumbar to prepare interspace. There's a bunch of these, and I'm trying to get through the list.
Osteomotomy, a few of these
Posterior segmental instrumentation, hooks, wires, rods, pedicle fixation, etc. etc.

I'm not sure what all this means other than a bunch of hardware after I'm straightened. HaHa!

Chet, is your surgery not until summer because of Dr. Lenke's schedule? Is that the earliest that you could get in?

The doctor that I'm using at St. Luke's wants to do this over two days. The doctor I went to here in Austin, was a one day surgery guy. I guess they are all different. Anyway, they all have teams to work with them in the OR, so you will be well cared for during the surgery. I suppose that Dr. Lenke will need to take a short break or two, and then a colleague will relieve him for a very short time. I have heard very good things here about him. He seems to be one of the foremost fellows that does this. My doctor is definitely well versed and we chose him in Houston over a very good one here in Austin. I'm confident of both, but the doc in Houston has some minimally invasive techniques to do the first day (2-3 hours) and then the long surgery 8+ hours, the second day of surgery.

I asked you before if you have anyone that can come in and help. I noted that you mentioned rehab for one month. Is that because no one lives near to help? I wish some of us here on the board could help you. I will be recovering myself, but honestly, we would help if we could get there. I will be keeping you in my thoughts and prayers. God can do mighty and great things and He can use Dr. Lenke to straighten you right up and make you well. I will be praying for the best result possible, even pain free, if that is to be.

Sheryl

TXMom
02-17-2017, 12:19 AM
P.S. I guess I won't know where I'll be for days too. I imagine that Ed and everyone else here went through that as well. From what I read, that's a good thing! Ha!

Sheryl

rjmacready
02-17-2017, 04:26 PM
Hi Sheryl, Yes, that was the earliest. I was Dr. Lenke's first patient on Dec 6, and by the time I left the office was overfilled to the point people were sitting in chairs out in the hall. Actually they offered me July 3, but I've been hospitalized enough to know even on minor holidays the staffing can become sparse. I want "all hands on deck" when my time comes. Thank you for your very kind thoughts and wishes. I'm 61 and everyone I know still works, so they can't just drop everything they are doing to wet nurse me. I completely understand, all but the very rich are finding it hard to live a comfortable life and have any discretionary income. This is why I spend 35% of my income on various health insurance policies. The insurance companies are more than happy to rake in the premiums, so let them foot the bill for an extended stay in a rehab. I think I've paid enough over my adult life to be entitled to whatever time I truly need. Nobody will want it to be as short a stay as posisible more than me. It is not as though I'm visiting a luxury spa, it is a major surgery rehab facility. In NYC of all places.

I don't envy you the 2 procedures. Ed described his and I don't know I could tolerate that. Dr. Lenke was a true revealation compared to the surgeon I was considering. The degree of my deformity, my narcotic intake, nothing made the slightest negative impression on him. I was so happy he exhibited no hesitation at all in taking my case. He asked me if I could lie flat on my back. I did so with some pain, and he was obviously pleased. He said "You have just saved both of us a couple of hours on the table." That is encouraging. He is a man on a mission, with a very special talent. I have no idea what Columbia pays him, but whatever it is he is worth it. Chet

susancook
02-17-2017, 06:21 PM
Chet, I retired from the Navy Reserves after 30 years, so thanks for your kind wishes. Having any surgery is a craps shoot. I wish you well. Sounds like you have done your homework and have chosen competent hands.
Wishing you, "Fair seas and following wind"
Susan

LindaRacine
02-17-2017, 08:25 PM
Chet...

You do realize that wet nurse means that the nurse breast feeds their charges, right?

--Linda

cathydrew
02-17-2017, 09:07 PM
Ed, Certainly your and Cathy's sentiments are most gracious. You may be correct in the fact I could be overthinking this upcoming affair. Seeing as this is a result of a previous surgery, I always ask myself if I had been more diligent, asked more questions, etc. the outcome might have been different.

I'm sure I'm not the 1st patient who has no family extant, nor people who can simply put their lives on hold & wet nurse me. Dr. Lenke strikes me as the kind of person who has seen it all. C

The thing is, Chet, people who have been through it WANT to help. It's not grace or anything selfless. It's a strange dynamic... kind of like a bunch of women talking about the pain of childbirth with smiles on their faces. So, my offer stands. As of June 24 I am off for the summer.

Pooka1
02-17-2017, 10:24 PM
Chet...

You do realize that wet nurse means that the nurse breast feeds their charges, right?

--Linda

Linda I'm sorry but we are going to have to wait until Ed weighs in on this matter before we decide a thing! LOL

titaniumed
02-18-2017, 10:34 AM
ďWere not I thine only nurse, I would say thou hadst sucked wisdom from thy teatĒ

I didnít have a wet nurse, I had Ensure drinks (Strawberry of course) Ha ha

Ed

titaniumed
02-18-2017, 10:59 AM
That was Shakespeare, Page 39 (smiley face)

Cathy is right, Cathy, you are right, and how very nice of you to offer!

One of the things that would have made a huge difference with my attitude in the hospital would have been a visit from a healed scoliosis patient. Nobody else can match that positive effect.

After being hit by a train, post anesthesia, shock and doubt rises which is scary, with doubt being a healthy thing ďbeforeĒ, it needs to be erased from our minds in our recoveries after surgery.

I had a little trouble with this for a few days, and this graveyard nurse actually brought me back after a little talk.

Our minds and attitude mean everything......in comparison, nothing else matters.

http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/positive-thinking/art-20043950?pg=1

Ed

Pooka1
02-18-2017, 11:01 AM
ďWere not I thine only nurse, I would say thou hadst sucked wisdom from thy teatĒ

I didnít have a wet nurse, I had Ensure drinks (Strawberry of course) Ha ha

Ed

LOL!!!!!!!!!!

I knew this would be worth it.

titaniumed
02-18-2017, 11:16 AM
In case one has not read the link I provided.....For those doing surgery, memorize everything below.

Putting positive thinking into practice

Negative self-talk Positive thinking
I've never done it before. It's an opportunity to learn something new.
It's too complicated. I'll tackle it from a different angle.
I don't have the resources. Necessity is the mother of invention.
I'm too lazy to get this done. I wasn't able to fit it into my schedule, but I can re-examine some priorities.
There's no way it will work. I can try to make it work.
It's too radical a change. Let's take a chance.
No one bothers to communicate with me. I'll see if I can open the channels of communication.
I'm not going to get any better at this. I'll give it another try.

Practicing positive thinking every day

Ed

rjmacready
02-18-2017, 09:29 PM
Chet...

You do realize that wet nurse means that the nurse breast feeds their charges, right?

--Linda
Linda, Title says it all. I will need all distractions possible I fear... No, seriously I did not know that. :o I simply assumed it involved changing diapers, i.e. "wet" work. Of course that term is also slang for killing people in certain circles. I stand humiliated and corrected. ;) Chet

titaniumed
02-18-2017, 10:56 PM
Chet, I thought the wet nurse concept was a good idea for male scoliosis surgery recovery.... The thing is, you donít want to recover too quickly using this program.

If they did a study, I am sure they would discover that none of the males would check out of rehab.

Looks like we are stuck with Ensure.....

Ed

Pooka1
02-18-2017, 11:23 PM
Chet, I thought the wet nurse concept was a good idea for male scoliosis surgery recovery.... The thing is, you donít want to recover too quickly using this program.

If they did a study, I am sure they would discover that none of the males would check out of rehab.

Looks like we are stuck with Ensure.....

Ed

LOL!

Post of the month nomination.

rjmacready
02-19-2017, 05:09 PM
Cathy, I will not dismiss your kind offer. In June, I will finally get a cell phone and get in touch, OK? I have a story very similar to Ed's- when I was in hospital post my femur fracture surgery. (I was not diagnosed w/osteoporosis for another 2 years on a spine surgeon's hunch.) When I told him I simply tripped and stumbled a bit, he said "you have osteoporosis." I said that is news to me. NOBODY involved in my femur fracture thought to check. It is things like this and my first back surgery debacle that do not exactly inspire confidence in the medical community. It is why I am much more of an inquisitive, involved patient now.

Anyway, I can't sleep in hospitals, I can only manage a series of 30-45 minute naps. An overnight nurse supervisor took an interest in me, and spent many hours over 4 days between 1-5 AM just sitting in my room and talking. I was on an enormous amount of opiates, and she said "I will become your advocate in keeping your meds coming. The PM team wants to reduce your dose, but I will argue your case." She didn't have to do that, so like you she simply wanted to help. We had much in common, our conversations made the time go by so much faster. So, I promise I will be more open to the idea of receiving help. I have been self sufficient for such a long period of time it is hard to break down that wall.

Perhaps some help from me: I would recommend to anyone using nutritional drinks to check Boost High Protein vs. Ensure. In Sam's Club it is 4-6 dollars less a case, and has the better nutritional profile IMO. I use it because protein usually involves some sort of cooking, so I rely mostly upon Boost and Premier Protein bars, which (supposedly) have 30 grams of protein per 2.52 ounce bar. I'm not a big eater and don't like to cook so the majority of my protein intake does not come from the usual sources such as meat/poultry. Just a note from my experience. Chet

cathydrew
02-22-2017, 12:12 AM
OMG after surgery I had no appetite either, so lived on Ensure.... but switched to premiere protein shakes, vanilla and strawberry. Tons of protein, low sugar and carbs. Costco. I still have them now, helps keep in shape.

Imagine if a wet nurse gave these flavors?! Nobody would leave rehab lol

titaniumed
02-22-2017, 01:07 AM
Imagine if a wet nurse gave these flavors?!

I also thought about that.

Also thought about one side chocolate and the other strawberry....

Ed

KathyInIowa
02-22-2017, 11:38 AM
OMG! That literally made me laugh out loud!

Kathy

titaniumed
02-22-2017, 02:42 PM
Kathy, I was choking when I wrote that one. LOL

Laughter therapy works.....

Ed

Pooka1
02-22-2017, 08:10 PM
Linda, Title says it all. I will need all distractions possible I fear... No, seriously I did not know that. :o I simply assumed it involved changing diapers, i.e. "wet" work. Of course that term is also slang for killing people in certain circles. I stand humiliated and corrected. ;) Chet

Chet I am sorry you feel humiliated. Exactly nobody here was trying to do that to you.

This thread has been amusing and we like amusing around here. So I thank you for being here. :-)

Irina
02-23-2017, 12:50 AM
LOL!!! I learned yet another English phrase from the forum. I remember a "fusion to scrotum" discussion a few years ago :-)

titaniumed
02-23-2017, 09:15 AM
Irina

I believe ďfusion to the scrotumĒ made post of the year! One for the ladies, of course!

With all we have to go through, there is no humiliation in any way, or at least for the elders that get used to it that can handle anything. I use self depreciating humor as a form of comedy when I can, and its worth it because we need all the laughter we can get dealing with scoliosis.

With terms and definitions, English offers a supply that doesnít seem to end and its impossible to know the whole language.

Ed

rjmacready
02-24-2017, 05:47 PM
Yes, English ( reminds me of underinformed people who say things like "why don't you talk American?" 😆 can be challenging. So many words have different connotations, I have 6 years of Latin on board and that helps immensely in deciphering words I am not familiar with; so many of our words are derived from Latin.

I saw my rheumatologist yesterday. In May of 2016, roughly 70% through my 2 years of Forteo, I had an almost 3% increase in BMD. I will be done with Forteo in 2 weeks, and have already been approved for the transition to Prolia. I will consult with Lenke to see if he wants me to wait a bit after Forteo cessation.

During my OV intake my height was measured as 5'5". In 1997, I was 6'2". With a full head of still blonde hair and blue eyes, maybe I'll join "OurTime" after my surgery. Best to wait until I'm totally fused though, don't you think? 😉 Chet

titaniumed
02-24-2017, 10:55 PM
With a full head of still blonde hair and blue eyes, maybe I'll join "OurTime" after my surgery. Best to wait until I'm totally fused though, don't you think? 😉 Chet

Ok, were on a roll....gotta come up with some new material.....going for post of the year.

Chet, we are all nimrods, but donít get too gung ho too soon, the mating call being an exact science, happens when it happens. Here is some instructional video from a pro.
https://www.youtube.com/watch?v=uED55XuT1kw

Wasnít that entertaining and educational! (smiley face) Donít worry, I will have you laughing in rehab. It clears the lungs. If you turkey cut in ICU, they will give you stronger meds. Ha ha

It takes a long time to heal. Remember that it takes patience, and time. Realistic expectations are important things to keep in mind. You have osteoporotic bone, you will have to be taking things real easy while you heal. In other words, no forces, and for many months.....I took things real easy myself since I didnít want to disturb or agitate my construct. No bending, no lifting, no twisting. Its our creed.

After you heal, you could advertise, ďTall, dark, and fusedĒ You will have the tall and fused part covered, all you would have to do is color your hair. (smiley face)

When do you see Dr Lenke again?

Ed

rjmacready
02-25-2017, 05:22 PM
The goal closest to my heart is to be able to clear out of this 100+ year old, 6 bedroom Victorian home in PA into a new, small single level unit somewhere in SW AZ by July 10, 2019. That would be 2 years post op. Unrealistic expectation? Flat horizons and pitch black skies with "good seeing" to indulge my hobby of astronomy. A yellow lab and intermittent/full time cohabitation are goal numbers 2 and 3. I don't think that is too much to ask. The only person I had an instant rapport with @ Hopkins was the nurse manager who was going to be the head of my post op pain management team. She ran down the procedure, and said my opiate intake was actually below average for advanced cases, and it would be no problem to keep me "comfortable". She said they can determine how much pain people have post op by counting respirations. The faster people are breathing, the more pain they are in. Who the Hell knows how they stumbled upon it, but the new post op PM craze is high does of methadone & acetaminophen. They coat your insides with a paste of this combo and infuse you with it. Apparently this combo doesn't cause the opiate blocking action the oral methadone does over a certain dose, (60 mg?) so they can add morphine, dilaudid etc... as nec. After 2-3 days you are totally awake and on fentanyl with a PCA pump loaded with dilaudid/morphine. I have yet to talk to Lenke's PM team, but I'm sure they do something similar. I've really tried to cover all the bases, something I did not do before my first back surgery.

I see Lenke again on May 15. That will be a 12 hour day in NYC- 6AM to 6PM: 3 CTs, 3 MRIs, plain films, PM consult, Lenke consult, ... Lenke insists the imaging be done @ The Spine Hospital. Even though that will be a 16+ hour day total and lay me up for a while, I'm not about to cause any waves. I'm giving him exactly what he wants. I actually feel very fortunate I found him before using Kebaish, and that he was not hesitant in the least to take my case. I think my luck started to change the day I found out Lenke had moved to NYC. I would never have wasted 6 months schlepping down and back from Hopkins, which is actually a longer trip as the crow flies. It takes the same or slightly more time to get to Lenke's just because of that stinking NYC traffic. (An example of my luck changing is how seamlessly the Prolia switch was done. It took 24 hours, I fought for months to finally get the Forteo.) Chet

titaniumed
02-25-2017, 09:31 PM
Chet, we have goals and expectations. Our realistic goals and expectations on serious spine surgery should be ďset as we goĒ......I want to say, yes, Arizona can happen in 2 years, but better to decide ďafterĒ you do your recovery.

I never intended on going skiing again after my surgeries. I was ok with that. It wasnít expected, it was a bonus.....there is a difference in this. You donít want to conquer the world if you donít know. (I hope that didnít sound too Trumpy)

The ultimate goal of surgery itself is complete pain relief....If this goal is met, you wont need to take meds. Itís the max goal set. Itís the best it gets. Not all of us get there, but we try really hard. All of the posties that are med free will testify that it wasnít easy, and nothing good ever comes without effort. Reduction of meds will involve pain. Its part of the process.

If you end up having lingering pain, set your med goals through Dr Lenke, ďafter you recoverĒ. Dr Lenke will pick a medication doctor for you.

Please realize that I am med free. Its what I choose regardless of any pains and bear traps and scar tissue gripping. Upon reading about a cancer patient that had back pain that was self diagnosed as a pull or sprain, she found out that she has this serious cancer spine problem. It makes for good reasoning since it would be harder to feel this sort of thing happening while on heavy medications. It affects judgment in pain which is needed as we age. (smug face)

Mauna Kea on the Big Island of Hawaii has an observatory and is good because there is little light pollution. I never went up there, (wanted to) because technically I would lose 3 dive days. Divers have a no fly rule we follow due to nitrogen expansion from the gain in altitude. I can imagine the Arizona desert being a great place for star gazing along with my home state of Nevada.

Nobody liked the turkey call vid? I thought it was hilarious.

Ed

KathyInIowa
02-25-2017, 09:33 PM
[QUOTE=rjmacready;168724]The goal closest to my heart is to be able to clear out of this 100+ year old, 6 bedroom Victorian home in PA into a new, small single level unit somewhere in SW AZ by July 10, 2019. That would be 2 years post op. Unrealistic expectation? /QUOTE

Hi, Chet. I know where you are coming from. We lived in a 100+ year old beautiful Georgian Colonial home, 5,000+ square feet. When our youngest got out of college we sold it. 6 months later I had my decompression surgery, and 2 weddings later I had my fusion surgery. It was the best thing we ever did was get out of that big house. I loved raising our 4 kids there, but I have not missed cleaning & maintaining that big house. I have thanked God every day for making the timing just right for me, with my pain level as high as it was, I was getting to the point where it was killing me to keep up that house. Now, we live in a small 2 bedroom/1 bathroom house. It was much easier for me in my recovery being in this smaller home with no stairs. Sometimes I miss having more space, but we really have all we need. I suspect that you will love being in a smaller home.

Ed - we also sold our business in the midst of all this. Fortunately, the big decisions were made well into my recovery - unlike you who made big decisions on narcotics.

We have really simplified our lives in the last 2 years. It has made things much easier for me (us) - less things to physically take care of and less mental stress. I have been able to focus on my body and recovery and not worry about a whole host of other things. It's been really nice.

Kathy

titaniumed
02-25-2017, 11:50 PM
[QUOTE=rjmacready;168724]
We have really simplified our lives in the last 2 years. It has made things much easier for me (us) - less things to physically take care of and less mental stress. I have been able to focus on my body and recovery and not worry about a whole host of other things. It's been really nice.

Kathy

Kathy, this is key, you have done things right. Reducing mental stress is so important since we go through so much of this as adult scolis.

Iím now posting turkey call videos because of stress, pretty soon I will be gobbling. LOL I think its pre retirement stress. I have given notice that I intend to fully retire this year.

I want to snowbird in my RV. Arizona sounds great, I will have to meet up with Chet someday down there.

I hope your recovery is coming along....is everything ok?

Ed

KathyInIowa
02-26-2017, 09:40 AM
Ed - my recovery is going great! I've had my moments but all in all it's going well.

Just this past Thursday, I was in Minneapolis for my 8-month post op check up. Dr. Perra said my x-rays look great, I look great, and that I'm moving well. He said my fusion looks like it is "there" and my hardware shows no movement. My pain level is very low unless I over do things, then it might jump to a 2 or 3. I am still following the no bending, no twisting and I have been very cautious with my lifting, still nothing over 10#. He said it's OK to lift more than 10#, that I don't have to be that cautious any more. Not to go crazy or anything, but if I needed to lift something that is 20 or 25# that is OK.

I have travelled to Colorado Springs (5-months post op and went by myself) and I went to Dallas, TX. I'm going to Spokane, WA to visit my daughter at the end of April. I have tolerated the trips well, although I do get tired. I don't always sleep well - not related to my back, more related to my age, I think.

I spent 3 years in so much pain that it was hard for me to travel and really attend anything and have any fun. I limited myself to my own kids' college events or their special occasions. We don't live near any of our large family, so we have to travel to everything. I decided now that I'm feeling better and healthy, I'm going for it!

I've attached some pictures. Garden of the Gods (Rock #1 and #2) is 5-months post op, Stone Park is 6-months post op and Samuelson is 8-months post op. I showed these to Dr Perra and he said I should share them so people can see the light at the end of the tunnel.

Kathy

titaniumed
02-26-2017, 11:55 AM
Kathy

Nice photos....

I have an old thread of me hiking in the Redwoods back in Nov 2008 when I was 10 months. I donít know if the photos still work, probably not, but you can see that I was in pain because I was just starting to push after my shoulder rebuild surgery. I would walk with ski poles slowly for a bit and have to lay down for 2 hours from exhaustion, then repeat. I was having gall issues also so not everything was perfect, but I was improving. It was a slow process....I was 16 months before the gall was pulled so thatís why I stated earlier in this thread to set expectations and goals ďas we goĒ. Sometimes there are surgical complications that are not necessarily tied to the spine, so you donít know. Gall bladder issues are a rare scoliosis surgical complication stated in the Moe handbook.

Twin Cities is where SRS was founded. In our community, thatís holy ground.....a very special place. My surgeon trained there, along with many scoliosis surgeons. (The South African connection)

A little history..... When I was a kid, I remember the first heart transplant done in South Africa. It was something I remembered and wondered about, South Africa of all places doing leading pioneering operations. When I met my surgeon, I asked about his accent, its not every day you hear a South African accent. I ended up choosing him due to his genius, and training, and its interesting how my memories of this 1st heart transplant had an effect on my decision. There are a few South African surgeons at TCSC. Dr Lonstein and Dr Transfeldt. Dr Barnard also studied in Minneapolis back in the 50ís.
https://en.wikipedia.org/wiki/Christiaan_Barnard

I knew you were going to be fine....

Dr Lenke is also a very special surgeon....

Ed

rjmacready
02-26-2017, 06:18 PM
[QUOTE=Pooka1;168701]Chet I am sorry you feel humiliated. Exactly nobody here was trying to do that to you.
P1, The "stand humiliated" is snarky. My ego is large enough that I don't appreciate being proven inaccurate, but then who does? I didn't give it a second thought. Anyone who goes onto a public forum these days has to be ready for the cyber equivalent of a night out with sailors after being at sea for 6 months. You develop a tough exterior or leave. This forum, more accurately a certain group of people, have been an invaluable resource for me. You folks have answered questions people like Dr. Lenke or his staff simply can't be bothered with. I will be as prepared as humanly possible for the post op period. That would not be the case without folks I've gotten to know on this forum. Chet

rjmacready
02-26-2017, 06:30 PM
Hi Kathy, Yes, it is not exactly quantum physics to realize having a home this big for one and sometimes two people is a waste. I had considered selling first, but I am so compromised physically doing things like packing my very expensive electronic gear would be impossible. I would not trust a moving company to do it. True, this home is about the worst place you could do a complete spinal fusion rehab in. If it weren't for steps and windows (#22) I would not have a home. With the surgery scheduled for July 10, I'd say my option to move first has expired. Chet

ripley
02-27-2017, 07:51 PM
Hi Chet, Just wanted to wish you well with your upcoming surgery. I am having surgery with Dr. Lenke too on 8/14 (70 degrees, T4-Sacrum, 5 osteomities, 2 TLIFs) I hope you are feeling up to posting afterward, Iíd love to have the inside scoop! Iíve been to a few of the top surgeons in NY, but we really liked Dr. Lenke and feel very confident in him. Iím sure you will have the best possible outcome!
-Ripley