Rough Timetable estimates for how you feel postop....66 YO with probable T3 to Sacrum

[SpineTime]

On the discovery channel program about scoliosis when Dr Boachie is operating on Juma, he mentions in the middle of the surgery that there are times he wishes he wasn’t there. I don’t know if you saw that program, of course I would think it was excellent. I watched it around 10 times. Juma had huge curves......it was bad.

Ed, do you happen to know of any way I could view this program? I was hoping I might be able to watch it online, but I guess not. Maybe the Discovery Channel has it for sale. I'll have to look more on their website, or hope they air it again someday. There was an HBO documentary called "Making the Crooked Straight." Have you seen it? You would probably like it. It's about a doctor in Ethiopia who helps people there, and some of them have TB of the spine, which can cause terrible deformities.

[titaniumed]

It’s the “Surgery saved my life” series.

Once again, I have looked and looked. The only thing that’s out there are the small vid previews.
http://dsc.discovery.com/tv-shows/ot...umas-spine.htm

The next time it comes on television, one of us will need to record this. I had it on DVR, but when you surrender your box, you lose programming.

I don’t have cable or satellite so one of you guys needs to keep a watch on the schedule.....If I know its going to be on again, I will make sure it gets recorded.

I have not seen “Making the crooked straight” I will check into that...

My computer is being problematic right now and needs some maintenance.

Ed

[SpineTime]

It’s the “Surgery saved my life” series.

Once again, I have looked and looked. The only thing that’s out there are the small vid previews.
http://dsc.discovery.com/tv-shows/ot...umas-spine.htm

The next time it comes on television, one of us will need to record this. I had it on DVR, but when you surrender your box, you lose programming.

I don’t have cable or satellite so one of you guys needs to keep a watch on the schedule.....If I know its going to be on again, I will make sure it gets recorded.

I have not seen “Making the crooked straight” I will check into that...

My computer is being problematic right now and needs some maintenance.

Ed

Darn! I can't even watch the preview. I click on the link and it says it's Juma's surgery, but then when I click on play, it changes to Sky's surgery and starts showing that. Thank you for looking though.

Here's the link for Making the Crooked Straight: http://www.makingthecrookedstraight.org/about-the-film

[Irina]

When did you, guys, stop using special devices? Let's say, when did you ditch toilet riser and bottom buddy (if you used those)? When did you stop using shower chair, sock aid, dressing stick etc? I understand that everyone is different, but just want to know a ballpark.

When you graduated from those *tools*, did you have a wild party? :-) How did you know that it's graduation time? Did your doctors tell you to use these *toys* for x-amount of time, or you just stopped using them when you felt it's no longer needed?

[susancook]

i would be surprised if a surgeon recommended
surgery on a 36 degree curve...
am wondering if he could suggest any tx short of surgery that you haven't
tried yet....
good luck with your doctor visit...

jess

I have adult degenerative scoliosis. Curves that start in adulthood (60's) are treated differently that those of younger folks and can be extremely painful since there is that pain from many sources: scoliosis, DDD, arthritis, etc.

I have had 2 years of PT, steroid injections, denervations. Right now, I have severe back pain, so I will close and curl up on my bed.
Susan

[jrnyc]

i too have scoli, DDD, arthritis, listhesis, stenosis...etc etc
as do many here on forum

sometimes adult scoli turns out to be undiagnosed in childhood...
regardless, age seems to bring DDD and arthritis to many people, or so all my
doctors tell me...especially older doctors who experience it themselves!

jess

[titaniumed]

When did you, guys, stop using special devices? Let's say, when did you ditch toilet riser and bottom buddy (if you used those)? When did you stop using shower chair, sock aid, dressing stick etc? I understand that everyone is different, but just want to know a ballpark.

When you graduated from those *tools*, did you have a wild party? :-) How did you know that it's graduation time? Did your doctors tell you to use these *toys* for x-amount of time, or you just stopped using them when you felt it's no longer needed?

I never had a “buddy”.....He he. Never used a shower chair either, but sounds like a good idea.

The sock aid was around 8 months. I started using a stool for the graduation process, which involves light stretching and reaching. Just getting the sock started on the toes can be a challenge in the beginning. I used the stool for a few months after that and then started to squat down on the floor to get the sock on. I have no problems with the sock’s and tying shoes now. Stretching with a full fusion is a slow process.....and had a major pain event at 22 months, soft tissue injury from stretching trying to clip my toe nails.

I knew that I shouldn’t bend or twist for a long time, and didn’t because its hard to know if you are fused. I was around 6 or 7 months and my surgeon told me I’m fused so, felt a little better about that, but still took it easy.

No late night wild parties anymore.....the old man cant handle it. I have to start the party at 8AM. (leafy green party, of course)

Alcohol is of no benefit with scoliosis.....I have done the research. It does nothing for incapacitating back pain, stenosis, radiculitis, sciatica. I would chase whiskey with equal amounts of water to try to prevent dehydration....

The process with the aids is a trial and error kind of thing....

Ed

[susancook]

Susan, I was 67 when I had my surgery. I was up and walking with a cane two days after surgery - If you can call that walking. When I got home I did a lot of sleeping, but every day I walked around the house and I was ready for visitors anytime. The pain was well controlled and by three months, I was weaned off of the oxy, so I could drive. If I had a job, I probably would have been able to go back to work part time. We are all so different in our tolerance to pain, how we react to the meds, how well we can sleep and how fast we heal. We flew to Seattle at eight months post - op and went to a Seattle - Red Sox baseball game while there. You will be in my thoughts and prayers. Are you back from Fiji? How was it?
Take care, Sally

I am back in Fiji after 2weeks in Papua New Guinea distributing mosquito nets with Rotarians Against Malaria. I leave next week for the US. This has been an awesome trip but my back pain is increasing. It has been fairly pain free for the first 1.5 months, but the corticosteroids have worn off. I have an appt to see Dr. Hart on the 18th. I am looking forward to learning the state of my back, which I imagine has grossly increased in degeneration. Thanks for your kindness. I will let you know how the appt goes.
Bula, Susan

[susancook]

hmmmmm...i am not doubting pain...
i am saying every surgeon i consulted with told me they look
for curves above 45 degrees....
that included Boachie....and Neuwirth....
if they have changed their requirements for FUSION surgery....it has not
been apparent here on east coast...
i do not know what insurance companies have to say....
since they like to fight over things like BMP...i wonder what they
say about curves that are RELATIVELY smaller...

jess

Jess, the number of the curve is not as relevant for us old folks. The requirements for fusion have not changed for the adult degen folks. There does not seem to be a magic number. Just the total of all of the degen processes. My ins co covers this for my diagnosis. Susan

[jrnyc]

that is not what i have been told by any of the surgeons i have seen...top surgeons.
and the idea of not having surgery to eliminate pain was explained to me
as "there is no guarantee you won't have pain after healing"
even though most surgeons hope the pain will be less...
they emphasized the reason for surgery to be stopping progression....
not because of pain or no pain.
i am quite aware of what age can do to scoliosis...
i did not have problems with my scoliosis til i got older...
but age can do damage to even a healthy spine as well

a survey of scoli patients anywhere will indicate how often the numbers
"45-50 degree curves" was mentioned in the surgeons' offices...
otherwise called "within surgical range"
this is not something i am imagining...enuf people on forum have referred
to those numbers as well...

jess

[susancook]

that is not what i have been told by any of the surgeons i have seen...top surgeons.
and the idea of not having surgery to eliminate pain was explained to me
as "there is no guarantee you won't have pain after healing"
even though most surgeons hope the pain will be less...
they emphasized the reason for surgery to be stopping progression....
not because of pain or no pain.
i am quite aware of what age can do to scoliosis...
i did not have problems with my scoliosis til i got older...
but age can do damage to even a healthy spine as well

a survey of scoli patients anywhere will indicate how often the numbers
"45-50 degree curves" was mentioned in the surgeons' offices...
otherwise called "within surgical range"
this is not something i am imagining...enuf people on forum have referred
to those numbers as well...

jess

The medical literature on adult degen says that the reason for adult surgery is: pain and/or compromised lung or heart function and/or a curve that increases 5 degrees or more in a year. There does not seem to be a specific number. I don't think that East Coast and West Coast are different. There is a great article in a major book on scoliosis written by Dr. Hu on adulthood degen scoliosis. I went up to the Oregon Health Scciences library and the research opinions for surgical correction agreed with all that I understand and as Dr. Hart has explained.

Sorry that this is so frustrating for you and that you cannot find a way to relieve your discomfort.
Susan

[Pooka1]

It certainly appears that there are different criteria for IS versus adult degenerative.

In IS, the curve causes or accelerates the damage and in adult degenerative, the damage causes the curve. So it seems there might be more damage per degree of curvature in adult degenerative as compared to IS and so the idea would be "stitch in time" with something that is already around the bend on damage. In IS, the damage seems more tied to curvature and thus that might have a higher surgical trigger compared to adult degenerative. Just guessing here.

[jrnyc]

susan, i do NOT have a problem finding a solution...
what is frustrating is not the answers...it is that the answers are limited...
all of the top surgeons i have consulted since 2007 have recommended
surgery for me...
it is i who have decided not to have it...so far....
pain management without steroid shots is limited, though my doctor
does what he can for me...

i do know of a surgeon who seems to consider leg pain a top indicator
of whether or not to do the surgery...
but he is the only one whom i ever heard of who worried about that
qualification...
all the surgeons i saw...including Boachie and Neuwirth and Anand...
primarily worried about progression...how far the patient...me...had
ALREADY progressed...as well as how much worse it might get...

and lumbar curves do not cause heart or lung worries...
if that were the criteria, no one with lumbar curves would have the surgery....

Sharon, my adult scoli was not found early enuf, but i am sure it was there
by my teen years....

jess

[rohrer01]

I understand what Sharon is saying. However, being one who upon aging is developing more and more debilitating pain, I would have to consider that as we age the standards should be more similar whether it is IS or adult onset. The degeneration is there, whether the scoli caused the degeneration or the degeneration caused the scoli. It's what some may consider the "chicken or the egg" scenario. In both cases there are both curves and degeneration. Whether surgery would help in my particular case is unknown since much of my pain is muscular. Although I do have numbness, tingling and shocking pains that radiate. These latter symptoms are not consistent, or at least I can't figure out the pattern correlating activity with symptoms on many of my symptoms (some I can). It is incredibly frustrating.

[Susie*Bee]

I have been in denial for a year and somehow figured that my diagnosis of scoliosis at 65 [Adult Onset Degenerative] would majically get better or just stop progressing...

So now, I am going back for my one year visit next month and fear the progression [I certainly tilt more to the R and my shoulder is lower and I have noticed my hip much more uneven...I am generally healthy, weight about 15#s more than it should be [actually, if I hadn't shrunk 2.5" I might be close to OK weight].

Just ballpark estimates of LIFE AFTER A T3 to SACRUM fixation at 66. I know that everyone is different and I will be older than most of the people on the blog, but just an estimate of how I might feel at different times.

SO AFTER SURGERY: When did you start to feel OK and really wanted visitors? Was there a point early on that many people regret that they had surgery, but then weeks later just knew that was how most people felt? When did you feel like going out of the house? When did you want to travel on an airplane for a vacation? When could you take short walks outside of the house? When did you want to travel by car for 5-6 hours?

Thanks, Susan

You are so right that everyone is different! I was one that took longer to get back to feeling ok. I was in the hospital for 11 days, and other than my husband, my daughter and her husband, there is no way I would have wanted anyone there... After I came home a few people came to visit, but it was very tiring to have them come, although a nice gesture. They need to limit their time.

I had been told that for the first 6 weeks you would/could regret the surgery. I probably didn't want to go out, other than to walk, for about a month-- but we live in the country and it's a good half an hour to a store. At 5 months I traveled by plane to see my daughter in New Hampshire (from Indiana). The trip was a little difficult, but I did it. (smile) Long trips in a car were difficult, but by one year we were able to take a road trip to New Hampshire, stopping every few hours to stretch and rest. I was still a bit tired and sore, but ok.

At one year, I thought I was "all healed" and would live with how I was. Then I was surprised at how much better I was at two years post-op. Again at 3 years. I continue to get stronger and better with each year. Some of us take longer to get better. I spent most of my first year intensely doing all I could to work at gaining back my strength because I had become very weakened by the surgery and wasn't able to return to my active job at school. I would spend (after 6 months, when I got the "all clear" from my doctor) 2-3 hours a day walking and doing PT exercises to build up my arm and leg muscle strength. At 11 months he let me work on core muscle strength, sending me again to a P. therapist for 8 weeks and I continued doing those exercises after my time there was over. Some people don't seem to get weak like that, but I did. It may be because of the osteotomies and my general condition, although I always thought I was fairly strong. Oh well-- it's beside the point. I ended up taking a year off from my job and it was ok. I am doing well now and just have some general limitations-- no bending, twisting, or lifting things a little over 20 lbs., but that's because my lower 2 vertebrae weren't fused and we are trying to save them from having problems.

I used my shower seat for at least 3-4 months, with one of those shower wands. Same time span with the raised toilet seat with handles. The handles were great in helping me get up. My legs just were too weak on their own. I never needed a "buddy" although it was a bit difficult... I actually didn't celebrate-- was kind of sad to see them go, but knew it was time. The doctor had nothing to do with it. I still use a sock aid because my legs are long in proportion to my torso and it's such a stretch for me and second nature to use the aid. No big deal.

Best wishes. As time goes by you will get better and better. (smile)