twisting limitations with full fusion.

[jackieg412]

Hi Crystal, as far as the weakness in your legs----- You really need strong legs going into this surgery. Since you cannot bend or twist at first, your legs do all the work. I walked a lot as my surgery was delayed. You can ask for physical therapy to help. It is very important to have strong core and legs.after surgery you will have to maintain this. I was fused to the pelvis in my first surgery and then extended to t-2. I still tie my shoes with bows on the side. But I get them tied. Reaching the floor is hard. My arms aren't long enough but I can get all the way down, get what I need and then stand up. Getting up can be less then perfect but I still do it. The unknown can be scary. As the years pass it does get easier. As Scoli people cope!

[Irina]

Hi Crystal,

I am fused T6 to sacrum and don't think that I am limited much. To brush my teeth, I just bend from my hips over the sink, but you can't do it right after the surgery. In the beginning, you would have to stay straight and have two glasses in front of you. Fill one with water and use another one to spit it out. Or, just brush your teeth in the shower - open your mouth to get water and spit it out anywhere you want. I did it for half a year after the surgery and then started brushing my teeth like normal people do - over the sink.

[golfnut]

Crystal,
I will send you a PM so we can exchange email addresses if you would like me to email some pictures. Seeing is believing. I remember before surgery thinking that it would be impossible to swing a golf club with long rods down my back and asked Ed to try it to see if it would be possible. It was reassuring to me to hear from others on the forum that I would not be "The Tinman" for the rest of my life.

[Joyce B.]

Here are some pics that will show how far I can twist with a T2-pelvic fusion.
I also have pics of my rib hump, which is now much less. I still have about 30 degrees rotation in my vert, verified by my cts. My hump was much worse before my surgeries.

Hopes this gives some idea as to limitations after a full fusion.
Ed

Ed, I just looked at your X-ray now (as I have had some difficulties with the site, could only access the first link). You are fused like I am. I am uncomfortable 24/7, even when trying to sleep. What about you? How do you manage now, post-surgery? I don't clean, (have a cleaning lady and my husband helps), I cook (with difficulty), if I drop something on the floor, picking it up is a problem (don't always have a grabber near-by), even showering and washing my hair is an ordeal. I can't lift either. Everything takes so much time! I had a very active life with work, entertaining, some traveling. Now, I mostly sit and think back to how good things used to be.

[Joyce B.]

You Are Amazing and Very Lucky!

Crystal,
I will send you a PM so we can exchange email addresses if you would like me to email some pictures. Seeing is believing. I remember before surgery thinking that it would be impossible to swing a golf club with long rods down my back and asked Ed to try it to see if it would be possible. It was reassuring to me to hear from others on the forum that I would not be "The Tinman" for the rest of my life.

God bless you! You are doing so well! My story is very different! Where did you have your surgery and who performed it! I think you are fantastic! Good luck always! Joyce B.

[golfnut]

Joyce,
To answer your questions . . . I had my surgery at Barnes Hospital in St. Louis with Dr. Lenke on January 5, 2011. I know that I am more fortunate than many on this forum, but I think that many success stories like mine are not posted, as people tend to drop the forum after their recovery. I truly feel bad for anyone who has continued pain and regrets having had the surgery. I was in the best physical shape of my life before surgery, but still attribute the success to Dr. Lenke. How long ago was your surgery?

[LindaRacine]

Ed, I just looked at your X-ray now (as I have had some difficulties with the site, could only access the first link). You are fused like I am. I am uncomfortable 24/7, even when trying to sleep. What about you? How do you manage now, post-surgery? I don't clean, (have a cleaning lady and my husband helps), I cook (with difficulty), if I drop something on the floor, picking it up is a problem (don't always have a grabber near-by), even showering and washing my hair is an ordeal. I can't lift either. Everything takes so much time! I had a very active life with work, entertaining, some traveling. Now, I mostly sit and think back to how good things used to be.

Hi Joyce...

How long ago was your surgery? And, can you describe why everything is so difficult? Is it painful? If so, where?

--Linda

[Joyce B.]

Linda, I didn't see your post until today...sorry. My first surgery was in 1969 by Anthony DePalma. He was head of ortho at Jefferson U in Phila until he retired the following year. Richard Rothman took over then with The Rothman Institute. I had my revision surgery there by Dr. Alexander Vaccarro in 2006. I had many complications (almost was one of the 25% mortality risk I was warned about). I was in a coma on a ventilator in the NICU for 17 days. I finally regained consciousness and went to a rehab facility. Total hospitalization and rehab facility was about 2 months. After I went home, I continued with outpatient therapy for 4 months. Then I joined a gym/indoor pool and continued my Aqua-therapy on my own. I was a
successful realtor in Mercer Cty NJ for. 23 years. Because of my fusion T-2 to the sacrum, and my diminished general stamina, I was forced to retire. I continued Aqua-therapy until we moved to Fl in 2012.

Sometime after my surgery and rehab, I actually was able to walk unassisted by a cane, etc. however, that did not seem to last very long. As time went on, I have become less active. Everything I do seems a chore.
I had been on narcotic pain meds for many years, and at my own doing, I have been weaning, and am now down to 2.5 mgs of something I don't want to mention. Hopefully, I will be finished soon.

I previously joined the forum back in 07 and had communicated at that time with Karen O., who was very helpful. Since I re-joined recently, I have investigated many things I have learned on the forum. One is that I may never be finished with my scoliosis problems until the end. Also, I read an on-line article by Dr. Matthew Cunningham at HHS in NYC. In the article, he discussed problems after surgery related to balance problems and limitations with walking which could be caused by scar tissue. I'm sorry if I am repeating, but there is a lot of background information.

Best way to describe is that I am uncomfortable sitting (unless I am in my recliner), I have a Temperpedic mattress, but still have difficulty getting comfortable and falling asleep. I wake up often and fatigued. I can stand for about 1-1/2 hr. then I need to sit and take a break. My limitations with walking are mechanical, my legs don't want to move well or quickly. I have a very "heavy" feeling at my lower back. I am no longer in pain. I have very little stamina. My condition was worsened over the last 4 years or so. And last year, I fell backwards on a ceramic tile floor and fractured T-5. Another 7-month ordeal. Oh, I have poor balance also, which I now realize may have caused the fall.

I also have osteoarthritis in both knees, one is getting very bad. Don't know where to turn. I feel that I have a poor quality of life, despite the fact that I thank God everyday that I am alive. If you have any information, ideas, suggestions, etc., I am open to any. Thank you Linda. Joyce

[LindaRacine]

=My limitations with walking are mechanical, my legs don't want to move well or quickly. I have a very "heavy" feeling at my lower back. I am no longer in pain. I have very little stamina. My condition was worsened over the last 4 years or so.

Hi Joyce....

Unfortunately, I don't have any answers for you.

I could, however, have written those sentences above. I have almost the exact same issue. The heavy feeling I have is more in my butt however. I've been relatively certain that it's not a spine issue. It definitely doesn't feel like radiculopathy. Strangely, I have an occasional day where the symptoms disappear and I can walk normally, which makes me think it's somehow neurologic. When it's bad, walking down the hall is a problem. Usually, I can walk for about a minute without too much difficulty. I found that walking with a cane helps a little. I can, however, ride my stationary bike for half an hour, so the problem seems to be weight bearing.

Is it possible that you have both a problem with your spine, and something else?

--Linda

[Joyce B.]

Linda, thank you very much for responding. I'm sorry to hear that you have some of the same issues that I have. I had been on Lyrica for sciatica in my right leg, but I weaned-off a couple of years ago. I still have numbness in my right thigh to my calf then extending to the outside of my foot. But when I touch my toes with anything, I do have feeling everywhere. It's very strange. I can't walk without support - in the house I use a cane or hold on to things. At night, I use my walker if I go into the bathroom where I fell. Also, any time I leave the house, I use my walker - there's much more stability. I try to do my PT exercises, but find that nothing helps. I also feel wobbly and unbalanced when I walk, which I think attributed to my fall last year. I do have mitral valve prolapse and see a cardiologist regularly, in addition to my internist. I had pharmacological stress tests, regular echo-cardiograms, etc. Things seem stable there. But who knows? I have been thinking of seeing someone at HSS in New York. I read some on-line articles by Dr. Matthew Cunningham where he speaks about scar-tissue possibly causing poor balance and limitations with walking.
Maybe that could be a cause. Do you know anything about this Doc? Even if I thought some more surgery
would help, I not sure what

[jackieg412]

Joyce, in the article that you talk about the scar tissue did it mention anything about it causing sciatica? It would seem that if it is possible to create an imbalance issue it may be a cause of radiculopathy.
Are you sure from your last surgery that your spine is indeed balanced?
I know I am off some but can correct by putting my arm behind me .

[LindaRacine]

Linda, thank you very much for responding. I'm sorry to hear that you have some of the same issues that I have. I had been on Lyrica for sciatica in my right leg, but I weaned-off a couple of years ago. I still have numbness in my right thigh to my calf then extending to the outside of my foot. But when I touch my toes with anything, I do have feeling everywhere. It's very strange. I can't walk without support - in the house I use a cane or hold on to things. At night, I use my walker if I go into the bathroom where I fell. Also, any time I leave the house, I use my walker - there's much more stability. I try to do my PT exercises, but find that nothing helps. I also feel wobbly and unbalanced when I walk, which I think attributed to my fall last year. I do have mitral valve prolapse and see a cardiologist regularly, in addition to my internist. I had pharmacological stress tests, regular echo-cardiograms, etc. Things seem stable there. But who knows? I have been thinking of seeing someone at HSS in New York. I read some on-line articles by Dr. Matthew Cunningham where he speaks about scar-tissue possibly causing poor balance and limitations with walking.
Maybe that could be a cause. Do you know anything about this Doc? Even if I thought some more surgery
would help, I not sure what

Sorry, I don't know anything about Dr. Cunningham.

Have you worked on your balance issues with your physical therapist? I had balance problems after my original scoliosis surgery, and finally worked with a PT on it, about 4 years ago. It helped considerably.

--Linda

[Joyce B.]

Can Anyone Recommend an Adult Scoliosis Revision Revision Surgeon?

Yes, Linda, I have sent myself this past Spring for PT & Aqua Therapy specifically geared toward improving balance. After about seven weeks of visits 3x per week, my re-evaluation showed no improvement. Does anyone have any adult scoliosis revision revision surgeons they might recommend? Preferably where I have family. Thank you. Joyce

[Joyce B.]

Joyce, in the article that you talk about the scar tissue did it mention anything about it causing sciatica? It would seem that if it is possible to create an imbalance issue it may be a cause of radiculopathy.
Are you sure from your last surgery that your spine is indeed balanced?
I know I am off some but can correct by putting my arm behind me .

Jackie, no, I'm not 100% sure, but I am confident that the surgeon addressed correcting flat-back syndrome as well as correcting the curves as much as possible. When I run my hand down my spine, it is as straight as it should be. My hips are now balanced over shoulders and head (not like before) My sciatica began after three months of very aggressive physical therapy by a very big man who was about 6'5". His hands were huge. And when he completed lumbar deep-tissue massage, I could not walk when I got off the table. This forced me to take Lyrica, which helped the leg pain, but gave me vision problems. I self-weaned off that drug, and now the sciatica is manageable. (Vision problem resolved).

Funny, but I do the same thing with my arm. My therapist suggested swinging my right arm naturally, but I feel more stable when I place it behind my waist walking with a cane in my left hand. Never thought about that before. Thank you.

[Joyce B.]

Joyce, in the article that you talk about the scar tissue did it mention anything about it causing sciatica? It would seem that if it is possible to create an imbalance issue it may be a cause of radiculopathy.
Are you sure from your last surgery that your spine is indeed balanced?
I know I am off some but can correct by putting my arm behind me .

Jackie, you have been through so much more than me. Yes, the article spoke of many complications caused by scar-tissue because it can further compress the nerves.

After all you have been through, what s your life like? Are you a younger person? Joyce