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ripley
07-27-2011, 11:17 AM
Hi everyone, I am trying to decide between surgeons and have two different opinions so far. I will also see others, and I suppose that in the long run it does not matter - just choose a surgeon and go with their opinion. Any input is appreciated...

I have two differing opinions from two of the best surgeons in NYC area. I hesitate to mention names as I would like unbiased opinions from you all. Here goes:

OPINION ONE: Fuse T11 to L4 or L5 -- This surgeon I saw recently. He also said that I would probably need another fusion to sacrum in about 10 years when there is more degeneration in L4/L5 vertebrae. This surgeon would only do posterior - even if to sacrum needed to be done upon further inspection of MRI of L4/L5 vertebrae.

OPINION TWO: Fuse T5 to sacrum -- This surgeon originally stated T11 to Sacrum (1.5 years ago), but revised a year later (currently) when I progressed 10 degrees. He stated that he believed I would have problems if he did not go higher up to T5. At the time I did not question why to sacrum - my curves are low. This surgeon also wants to do two ops from front and rear to obtain better fusion to sacrum.

I am wondering which approach seems better. I would rather do everything now (Opinion 2) and not have to go back for more fusion in 10 or so years (Opinion 1). However : Is mobility so impaired when fusing to sacrum (?) that it would be beneficial to keep that bit of mobility for about 10 more years? Also, do you really get a better fusion when going in from A/P rather than only P? I am fine with doing the most up front even if it is more traumatic, so as not to have to redo any surgery - I just want this whole thing to be over.
Thanks for any opinions!

peachrush7
07-27-2011, 02:23 PM
I am fused from T4-L4, and if I had had my way, I would have been fused to the sacrum. My surgeon had originally planned to go all the way to S1, but during the surgery he got amazing correction w/o having to go that far (my curves went from T52 L52 to less than 15 degrees top and bottom), and decided not to do it. I am pleased with my results overall, and trust my surgeon...but I wish I didn't have to think about the potential of another surgery 20-30 years from now.

My surgeon decided not to fuse to S1 so that I would have that little mobility, and he thinks I may never need it fused completely at all. But if that surgeon who already said you would probably need it in 10 years, he doesn't seem to get the fact that these surgeries are a bear to go through and we'd rather not have another one if we can avoid it. Ten years isn't very long...if it was me, I'd go with the full fusion.

I don't feel like having it fused entirely would have made me much less flexible. I am so careful not to bend or put extra stress on those last two discs, I might as well be fused to S1 anyway.

Just my opinion though...I'm sure the people on here who are fused all the way will be able to help you!

jrnyc
07-27-2011, 03:01 PM
hi ripley
i know it is a blessing IF surgeons agree...a small comfort in the middle of a scary situation!
how many surgeons did you see? you listed 2 opinions...did you see 2 surgeons...or more than that? have you considered seeing another surgeon just to see whom he agrees with...or is this your decision and you will make it without any further consultation?
if your curves are low, i am kind of surprised a surgeon suggested not going to sacrum...i thought they only do that for the young teens...i do not remember your age...are you quite young?

that said, i do not blame you for not wanting to go down to sacrum!

best of luck
jess

Jacque's Mom
07-27-2011, 03:06 PM
This was what I was told.... In 2002, when i first saw my surgeon, he said that my L3/4 was degenerative, etc. and that was causing my pain. This was as a result of the Harrington Rod, my initial surgery in 1981. He said he could perform surgery but I would probably have to have another surgery years later as the remaining discs would degenerate. I went back in 2008 as the pain was worse and he recommended surgery to the sacrum but I wasn't mentally ready and went the facet joint injection route with pain management. Two years later I had the surgery (12/7/2010) and am very pleased with my outcome. For me the mobility is different but it's getting better. I don't think I'll ever be able to put my socks and certain shoes on without some difficulty, but you learn to adjust. At times, putting slacks on I have to sit down or I feel like I might lose my balance since I'm so straight. You have to be patient as it takes time and determination to get to a comfortable place. Good luck with your decision. LYNN

LindaRacine
07-27-2011, 09:47 PM
Hi everyone, I am trying to decide between surgeons and have two different opinions so far. I will also see others, and I suppose that in the long run it does not matter - just choose a surgeon and go with their opinion. Any input is appreciated...

I have two differing opinions from two of the best surgeons in NYC area. I hesitate to mention names as I would like unbiased opinions from you all. Here goes:

OPINION ONE: Fuse T11 to L4 or L5 -- This surgeon I saw recently. He also said that I would probably need another fusion to sacrum in about 10 years when there is more degeneration in L4/L5 vertebrae. This surgeon would only do posterior - even if to sacrum needed to be done upon further inspection of MRI of L4/L5 vertebrae.

OPINION TWO: Fuse T5 to sacrum -- This surgeon originally stated T11 to Sacrum (1.5 years ago), but revised a year later (currently) when I progressed 10 degrees. He stated that he believed I would have problems if he did not go higher up to T5. At the time I did not question why to sacrum - my curves are low. This surgeon also wants to do two ops from front and rear to obtain better fusion to sacrum.

I am wondering which approach seems better. I would rather do everything now (Opinion 2) and not have to go back for more fusion in 10 or so years (Opinion 1). However : Is mobility so impaired when fusing to sacrum (?) that it would be beneficial to keep that bit of mobility for about 10 more years? Also, do you really get a better fusion when going in from A/P rather than only P? I am fine with doing the most up front even if it is more traumatic, so as not to have to redo any surgery - I just want this whole thing to be over.
Thanks for any opinions!

This is such a tough decision for a patient to make. I can tell you that we see a lot of patients who are fused T10 or T11 to L4, L5, or S1, who then have to go back for more surgery because they become kyphotic above the fusion. This is probably the single most discussed issue in our weekly surgical conferences. The surgeons do their best to guess which patients need to go up to T4ish, but they're wrong sometimes, and those patients usually have to be brought back for more surgery.

When I had my first surgeries (20 years ago), I was given the option of only fusing the lumbar curve, or also fusing the thoracic curve. Because my surgeon felt there was a very significant chance that he'd have to go up higher eventually, I chose to get it all over with at one time. In hindsight, I actually wish I had tried having only the lumbar curve fused. Although purely non-scientific, it seems to me that post-operative pain in adults fused from T3 or T4 seems to be greater than in patients whose fusions start at T10 or T11. My post-op pain from my first surgeries was entirely in my upper back. If I was making the decision over again today, I would choose to take the risk of needing additional surgery, and only having my lumbar curve fused. I suspect my recovery would have been very different than what it was. With that said, if I had 100% trust in the surgeon who wants to start at T5, I would let him/her do what they think is best.

Best of luck with your decision.

Regards,
Linda

jrnyc
07-28-2011, 12:05 AM
do i understand correctly that your concern is about how LOW to go..not how high to go...with the fusions...?
i am just asking that question because i need fusion to sacrum, with pelvic fixation...either starting at T4 or T11...surgeons said they were pleased that i get relief of upper pain with botox shots, so they agreed to start at T11 instead of T4...but what is keeping me from doing the surgery is how LOW they need to go...not how high they want to start....

best of luck
jess

sheri66
07-28-2011, 01:19 AM
I am fused T-10 to S1.It is a big surgery so I would choose option 2.

ripley
07-28-2011, 09:13 AM
Hi all, thanks so much for the info. I have the two opinions so far, but I'm going to get a couple more. My concern is both going to sacrum and going higher to T5. Right now I'm leaning toward the longer fusion, as I would hate to have problems to go back for. Linda mentioned Kyphosis above the fusion and that is the exact area where I have kyphosis now. Can anyone explain what the difference is of going to sacrum - is it strictly a mobility issue? If so, is it really much different to have only one or two moveable vertebrae above it? I'm having a hard time picturing it. Thanks...

And I'm 46 - so, not young for avoiding sacrum ...

progress
07-28-2011, 02:00 PM
Hi, I am planning being fused L9 to either L3 or L4 in two weeks by Dr Cree in Sydney. He is well respected (Director of Scoliosis surgery at a couple of hospitals and does many scolis incl adults. I asked whether this would set me up for future surgery to lower levels and he replied that he chooses the levels with the aim of avoiding further surgery. I didn't get a second opinion as he is considered the best in Sydney and I didn't want to confuse myself. He said though there is always the possibility if herniation and then further surgery but said surgery now would give me the best quality of life over the next 20 yrs
Kelly
49 yrs
55 deg thorocolumbar

progress
07-28-2011, 02:10 PM
I'm writing this in 2 stages because of logging out problem
I think to myself, should I wait for more degeneration and progression and go to sacrum in 5 to whatever years? Then I look at myself and how I am tilting more now. I don't have a lot of pain but I am uncomfortable with a collapsing torso feeling, and I am noticing I am more laboured when I walk distances. I'm not liking the way I look now either, this will be the first year I won't feel comfortable in a bikini ( 7 deg of progression in two yrs). Dr Cree thinks I am a great candidate for surgery now though he doesn't push it. I guess I am trusting his judgement and hoping by going now will give me the best long term outcome, better correction, avoidance of pain in the future and saving my lower discs. Dr Cree said if I don't have the surgery I likely face greater disc degeneration, pain and deformity.
It's 4.10 in Aust and I can't sleep!
Kelly

Singer
07-28-2011, 02:37 PM
I feel strongly that with a huge and complex surgery like this, it simply isn't fair to ask the patient to make the decision. The only decision I worried about making was which surgeon I chose, and I made sure that I trusted that surgeon 100 percent.

I'm fused T10 to L5, and I understood going in that there was a "50-50 chance" that I'd need additional fusion to the sacrum in another 10-20 years. My L5 disc was in great shape (and I hope it still is!), so Boachie felt confident about stopping the fusion there. My thoracic curve was mostly compensatory so I understood his rationale for not fusing higher. I've done well although I did have a large anterior incision, which was very difficult to recover from and I still have some discomfort in that area. I don't think surgeons (including Boachie) are making those kinds of long front incisions anymore.

titaniumed
07-28-2011, 08:36 PM
Linda mentioned Kyphosis above the fusion and that is the exact area where I have kyphosis now.


You might have to worry about PJK (proximal junctional kyphosis). Its basically where you fall foward above a fusion.

Ed

titaniumed
07-28-2011, 08:42 PM
Can anyone explain what the difference is of going to sacrum - is it strictly a mobility issue? If so, is it really much different to have only one or two moveable vertebrae above it? I'm having a hard time picturing it. Thanks...



The lowest vertebrae articulate approx 20 degrees each. Not all vertebrae have this figure, just the lowest 2.

I cannot reach the floor, I can get to about 3-4 inches from the floor. I stood next to a scoli I know who has her lowest untouched, and she can reach the floor.

Ed

LindaRacine
07-28-2011, 08:59 PM
do i understand correctly that your concern is about how LOW to go..not how high to go...with the fusions...?
i am just asking that question because i need fusion to sacrum, with pelvic fixation...either starting at T4 or T11...surgeons said they were pleased that i get relief of upper pain with botox shots, so they agreed to start at T11 instead of T4...but what is keeping me from doing the surgery is how LOW they need to go...not how high they want to start....

best of luck
jess
Yes, IMO. Fusing a patient to L4 or L5 is highly likely to lead to needing additional fusion if the patient lives more than 10-20 years after surgery. And, recovery (in terms of pain from surgery to S1) doesn't appear to be very much different than surgery to L3, L4, or L5. I personally think that going higher (T3-T5) leads to pain very often. So, if it appears that the patient is someone who is unlikely to develop PJK, fusing from T10 or T11 is a better option. Please note, however, that this is purely anecdotal.

--Linda

LindaRacine
07-28-2011, 09:02 PM
Hi all, thanks so much for the info. I have the two opinions so far, but I'm going to get a couple more. My concern is both going to sacrum and going higher to T5. Right now I'm leaning toward the longer fusion, as I would hate to have problems to go back for. Linda mentioned Kyphosis above the fusion and that is the exact area where I have kyphosis now. Can anyone explain what the difference is of going to sacrum - is it strictly a mobility issue? If so, is it really much different to have only one or two moveable vertebrae above it? I'm having a hard time picturing it. Thanks...

And I'm 46 - so, not young for avoiding sacrum ...
If you're already hyperkyphotic, I suspect the second surgeon is correct, that you'll have to be fused higher.

Most of the adults that I talk to who were fused initially to L3, L4, or L5, and are later fused to S1, tell me that there wasn't a lot of difference in terms of flexibility. By the time we're fused to S1, we've usually already had a lot of degenerative changes that inhibit movement at the lower levels anyway. In my case, there was definitely a difference (my fusion was extended from L3-S1 in January), but I have to say it wasn't nearly as bad as I'd feared.

--Linda

LindaRacine
07-28-2011, 09:03 PM
The lowest vertebrae articulate approx 20 degrees each. Not all vertebrae have this figure, just the lowest 2.

I cannot reach the floor, I can get to about 3-4 inches from the floor. I stood next to a scoli I know who has her lowest untouched, and she can reach the floor.

Ed
There are some folks fused to S1 who can touch the floor. I think it depends mostly on how flexible the hips are and how tight the hamstrings are.

--Linda

titaniumed
07-28-2011, 09:23 PM
Linda

You are right. If I stretched more, I could make it....it wouldnt be easy. I know I wouldnt want to have another one of those "soft tissue injury" events again.

Ed

jrnyc
07-28-2011, 10:06 PM
hi ripley
my question to you was whether you were concerned about how low to the sacrum or how high on thoracic the fusion would be.....
i guess your reply tells me that you are worried about both...
i am primarily concerned with how low my fusion would have to be...
it would have to begin at either T 11 or T 4...i do not know how much that part of it matters to me...but that just might be ignorance on my part...

i wish you luck in your decision....i know sometimes surgeons give their patients a choice in some of these matters, or, when picking a surgeon, a patient is actually making that choice by what the surgeon is convinced is right for them....

what i would suggest to you is to get more consults...that way you can see if there is a majority opinion of the top surgeons that you consult with..
also, i think with younger patients, surgeons often opt for the shorter fusions when possible....but the older we get, i think the higher the risk of hurting our backs anyway....at least, that is my opinion...i know my scoli was quite manageable.. until i herniated discs...then all heck broke loose!

best of luck with whatever you decide...
jess

Doodles
07-28-2011, 11:45 PM
Boy, I must be doing something wrong. I can't get more than 2 or 3 inches past my knees if I keep my knees straight. It's not changed much at all over the last year or so. I exercise all the time; maybe I should concentrate more on stretching. I Can most people get near the floor who are fused to S1? Janet

golfnut
07-29-2011, 05:44 PM
I totally trusted Dr. Lenke and never questioned the vertebrae that he thought should be fused even though I was aware that the lower the fusion, the less flexibility. I am almost 7 months post op and I can honestly say that I don't think my quality of life is the least bit compromised. I know in will have a slightly different golf swing and that I probably won't be able to swing my hips as much in my tap dancing class, so to me it has been a minor sacrifice for a straight spine, no rib hump, and no worry of curvature progression.

Pooka1
07-29-2011, 05:53 PM
Boy, I must be doing something wrong. I can't get more than 2 or 3 inches past my knees if I keep my knees straight. It's not changed much at all over the last year or so. I exercise all the time; maybe I should concentrate more on stretching. I Can most people get near the floor who are fused to S1? Janet

I think anyone including folks fused to pelvis can stretch the hamstrings enough to eventually touch the floor.

But you should be aware that some percentage of scoliosis patients have some associated connective tissue issue that lets them lay their hands on the floor with straight legs and without any stretching. So you shouldn't compare yourself to random other patients.

ripley
07-29-2011, 08:01 PM
Hi everyone. I suppose more consults are necessary. Sounds like flexibility when fusing to sacrum varies per individual. I didn't realize there would be more pain when going higher. However, I do tend to lean toward the longer fusion so as to avoid future problems. Thanks to all for the input!

JenniferG
07-29-2011, 10:29 PM
Janet, me too. If I stand with my legs together and bend, I can reach maybe 3 inches below my knees. But it doesn't stop me from picking things up off the floor. I spread my legs apart, a bit like a giraffe and swing down from my hips. :)

Doodles
07-29-2011, 11:24 PM
Jennifer--
Glad I'm not the only one! I definitely get whatever off the floor. It ain't pretty but I get down there. The giraffe analogy might be pretty close! Janet

peachrush7
07-30-2011, 06:25 PM
Hi everyone. I suppose more consults are necessary. Sounds like flexibility when fusing to sacrum varies per individual. I didn't realize there would be more pain when going higher. However, I do tend to lean toward the longer fusion so as to avoid future problems. Thanks to all for the input!

Just wanted to throw it out there, I had really bad shoulder pain, in both shoulders before the surgery...for years and years, even before I had the herniated disc/nerve pain in my legs. It was always bothering me, it even made it hard to sleep/get comfy at night. My surgeon thought it was in relation to my rotation up top, but who knows.

Anyway, I'm fused all the way up to T4 and my shoulder pain has been significantly reduced post-op. I was worried pre-op about the surgery making it worse, but it turns out all that worry was for nothing. I still have a shoulder that is tighter, and gets sore more easily, but the stronger I'm getting and the further post-op I get, the better it's feeling. I also get a gentle massage every other week, and that has helped my muscles relax quite a bit in my neck/shoulders.

Thought I'd throw my 2 cents out there, so you know not everyone who has a high fusion has worse pain up top. Just wanted to encourage you!

sheri66
08-10-2011, 12:27 AM
Okay, I am fused T-10 to S1.I had to try it and I can only bend to my knees.I better start stretching:)