Should I do this?

[Cilla]

I have had six surgeries so far and wish that I would have never had any of them. I had sciatic pain in both legs before surgery but with rest it would go away and I could do things. Now after all the operations I can't do anything and I'm in pain all the time. I spend most of my time in bed, I feel I traded pain in my legs for pain every where and I didn't even get rid of the curves! I had a full fusion as I had 58 degree curve on top and 48 on bottom with 45 degree takeoff from the sacrum with a 45 degree rotation. I think I was twisted every way possible. Now I still have the very large rib hump and my pelvis and ribs are deformed and are very noticeable. The next surgery will attempt to put an arch back in my lower back as I have "flat back" from the fusion going from T1 - sacrum. It was a really hard decision and just wish I could go back in time and not do it. Hind sight is always 20/20! Best of luck to you!

[LindaRacine]

Hi Cilla...

Have you ever been told that you have reflex sympathetic dystrophy (aka complex regional pain syndrome)? It can be brought on by trauma or surgery. Since you mention that you have pain everywhere, I thought it might be something like that.

Regards,
Linda

[Cilla]

No I haven't been told that. My pain is in my whole back with spots that have more pain than the rest and pain in my hips and knees. That is due to greater stress on the joints..

[joyfull]

Cilla, I'm so sorry to hear about your experiences. Who did your surgeries? It doesn't even sound as if your curves were that large by the standards of those who post here. Mine is 85 or 90 thoracic and a compensatory lumbar curve (I can't remember what it is) with a pretty prominent rib hump. I hope the next surgery gives you some relief. Thank you for posting your experience. Joy

[Karen Ocker]

lung capacity/large curves

Persons without scoliosis die from pneumonia all the time. Some deaths are from drug resistant bacteria. There is a vaccine called "Pneumovax" which protects against many type of pneumonia. I decided on this vaccine once I realized how reduced my lung capacity was before the surgery.

I once had to sedate a lady for a colonoscopy in her own bed because she was on a ventilator because of scoliosis. She was only 74 and the scoliosis was slowly killing her.

The problem with reduced lung capacity is that lung capacity normally decreases with age in persons without scoliosis. Persons with severe scoliosis are at a disadvantage with respiratory illness because they have very little "reserve" capacity.

I lost lung tissue from an 80 degree curve and it doesn't come back.

[txmarinemom]

I actually didn't say I was dissatisfied with surgery. I was pretty impaired in terms of function prior to surgery, as I couldn't stand for more than 5 or 10 minutes. I had pain every day, so I felt the risk was balanced by the potential reward. After surgery, I was not very happy in the short-term.

Linda,

Remind me ... when was your last surgery? I'm sure I've read it before, but it escapes me.

Regards,
Pam

[jrnyc]

Cilla
i am so sorry to hear of the extreme pain that you live with every day...i hope that the next surgery will give you some relief...i hope it is the last surgery you will need!

please post the date of your next surgery...so folks on forum can keep you in their thoughts & prayers...

jess

[joyfull]

For those over 50...

Hi all. I seem to have forgotten how to start a new thread.

For those of us older people, I'm wondering what my back will feel like after surgery. I was told that my 90 degree curve is pretty inflexible. Does this mean that it won't seem much different when it will be fused? (Apparently, I'm going to be fused from T1 to L4.) Are you aware of an "unnatural" feeling? Can you feel the hardware or are you unaware of it? It's odd; I feel as though even if my back is curved and unattractive, it's still been a part of me for 57 years and I have some irrational regret about drastically altering it, almost a grief. Can anyone relate to this? Can people tell that you are fused by the way that you move? Thanks for responding, Joy

[JenniferG]

Joy, for about 6-8 weeks, I felt like I was wearing a backpack. But that feeling disappeared.

When out walking fast, I am aware I have a wonky walk, but if I concentrate and hold down my right shoulder, I can minimise it so that I am sure nobody would notice.

I do have a few bumps that are visible at the top of my rods and if I run my hand down my scar, I can feel bumps beneath the skin.

But do I miss my old shape/body? Hell, no! I'm thrilled with my still-not-quite-symetrical shape. What I've got now IS me and feels natural.

[Doodles]

Joyfull--
I don't think anyone could tell I was fused unless they saw me try to pick up a small item on the floor or trim my toenails--and that ain't a going to happen! I get in some weird positions for that. I finally decided recently I wasn't feeling the hardware when I lie down as much as the right side rib hump that is better but remains. My pt says that's of course attached to ribs that just got moved to a new spot and dragged along and has to get used to this new spot. Something like that. I can feel from the outside the top of the rods. Believe me, I had no grief about getting rid of the old body! Janet

[Cilla]

Surgery #7 is a go, April 7th.

Hi All,
I met with my new surgeon yesterday, Dr. Tribus from UW Spine Center in Madison, WI. He is a specialist in adult spinal deformities and spinal reconstructive surgery. I was referred to him from my second surgeon as he was not comfortable in doing the procedure that I need to have done. The first surgeries I had where staged fusion of my spine from T1 - sacrum. Three and four were removal of the ends of the rods that went into the pelvis. Five was removal of the lower half of the rods and re-fusion of L4 & L5. Six was the removal of the rest of the rods that were first put in as they never "healed in" and were migrating. I was told that the thoracic spine was fused and even if it wasn't it would be fine as it doesn't really move anyway. At my appointment, Dr. Tribus went over my CT scan and x-rays and found that I have a non-fusion between L1 & L2, I still have a significant rotation and most of the fusions of the thoracic spine never fully healed. Because of this the kyphosis returned after the last of the Harrington rods were removed. April 7th Dr. Tribus will be doing a asymmetrical osteotomie to correct my flat back and reduce the rotation, a re-fusion between L1& L2 and stabilization of the thoracic spine. I am so happy to know that there is a reason for all of the pain I am in and that I’m not crazy!!! It seems like docs have a way of planting little seeds of doubt in your head when they don’t know the answer. So now I feel validated and I have HOPE, finally! I'm scared because now I know just how much it's going to hurt, sometimes ignorance IS bliss, but still can't wait to get this over with.

[joyfull]

Cilla, I'm so glad to hear that you are hopeful that you have found a surgeon knowledgeable enough to understand and deal with your problem. I suppose the newer instrumentation will make a big difference. My thoughts will be with you on April 7th. All the best, Joy

[jrnyc]

hey Cilla
it is true that there are doctors who place the blame on the patient when they dont know how to fix the problem....
so glad that you found a good surgeon who knows what to do & will help alleviate your pain!

best of luck
jess

[debbei]

Hi All,
I met with my new surgeon yesterday, Dr. Tribus from UW Spine Center in Madison, WI. He is a specialist in adult spinal deformities and spinal reconstructive surgery. I was referred to him from my second surgeon as he was not comfortable in doing the procedure that I need to have done. The first surgeries I had where staged fusion of my spine from T1 - sacrum. Three and four were removal of the ends of the rods that went into the pelvis. Five was removal of the lower half of the rods and re-fusion of L4 & L5. Six was the removal of the rest of the rods that were first put in as they never "healed in" and were migrating. I was told that the thoracic spine was fused and even if it wasn't it would be fine as it doesn't really move anyway. At my appointment, Dr. Tribus went over my CT scan and x-rays and found that I have a non-fusion between L1 & L2, I still have a significant rotation and most of the fusions of the thoracic spine never fully healed. Because of this the kyphosis returned after the last of the Harrington rods were removed. April 7th Dr. Tribus will be doing a asymmetrical osteotomie to correct my flat back and reduce the rotation, a re-fusion between L1& L2 and stabilization of the thoracic spine. I am so happy to know that there is a reason for all of the pain I am in and that I’m not crazy!!! It seems like docs have a way of planting little seeds of doubt in your head when they don’t know the answer. So now I feel validated and I have HOPE, finally! I'm scared because now I know just how much it's going to hurt, sometimes ignorance IS bliss, but still can't wait to get this over with.

Hi Cilla,

I'm glad you finally got some answers. I know that someone else on the forum here had your new surgeon, I remember the name (but not the patient.) Do a search on his name and you will probably find some posts.

Thank goodness that the surgeon who recommended you was smart enough to know that your case was over his head.

Good luck,

[Ryy]

Hard decision joyfull since you have no pain. With the breathing though and the chance it could progress, i would go for the surgery. I'm 24 and 2 years ago, pain increased much and is constant. Surgery for me in the near future.

I wonder what makes scoli and kypho progress all of a sudden, anyone know? i don't know why my pain level has increased and became constant all of a sudden about 2 years ago. I don't know if my kypho is progressing or not, but sure seems like it.

Cilla, good luck with your upcoming surgery