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Mojo's Mom
01-25-2012, 08:20 PM
I noticed that Linda has asked us to create fewer threads due to problems with hackers, so I'm going to put all my concerns and my story into this one thread, starting today.

I just returned from a re-consult with my surgeon in Dallas yesterday. I hadn't seen him in a year, hadn't had x-rays in a year, had a tentative surgery date scheduled for April 4th. I expected the x-rays to show noticeable progression, and to continue to move forward with the surgical plan.

Instead, the x-rays showed no noticeable progression in the last 13 months, and this after two years of progression that was worrying my local spine surgeon and which got me referred to Dr. O'Brien in the first place. Dr. O'Brien also said my curves appear well balanced and that he sees no immediate need for an instrumented fusion unless my back pain/related discomfort and dissatisfaction with my appearance are such that my quality of life is not acceptable.

My pain is mostly from pinched nerves on the left side in the lumbar, two specific locations as identified by my CT myelogram last year. Decompression at those two levels without fusion would have a very good chance of relieving the pain that really limits me. My back pain, per se, is no more than typical aches and pains most of the time.

So what Dr. O'Brien recommended, and what I think I will do, is get the decompressions done and see where it leaves me, then wait and watch on the scoli curves. Some of you know I had some personal issues I was afraid would affect my readiness for the big surgery, so I am relieved to have the urgency taken away from my situation. I feel fairly sure I will eventually need the fusion, but I'm 53 and fit, and I don't think another year or two will hurt me any. I am also working on a supplementation program with my chiropractor/naturopath to build my bones, which have been deterioriating. I'm hoping my DEXA scores will be better by the time I need the fusion.

Of course, it may turn out that the decompression fixes the leg and hip pain, but leaves me with more back pain than I realized. But it makes sense to me as a first step. I know I will be able to exercise more if the leg and hip pain are relieved.

I'm not really thrilled with the way I look, with tremendous rotation and a huge hump on my left lumbar side, and I hate the lost waist and the abdominal crease, but no one does this for looks. I accept the way I look, and the devil you know is easier to risk than the devil you don't. Maybe I'd look much better but hate the rest...until I know I HAVE to be fused.

I know Dr. O'Brien is not a big name on this board, but he trained alongside Dr. Lenke and has credentials out the wazoo, and I like him very much and have confidence in him. So now I have a different plan, and we will see where it gets me. I'll get the decompression done in April, almost a month after the birth of my second grandchild, and then wait and watch. Who knows if this is the right decision?

All of you have helped me so much as I come to terms with my scoliosis, there is no way to thank you enough, every day it helps. When I have new questions, I'll put them on here, and when new things happen I'll add them here.

LindaRacine
01-25-2012, 10:02 PM
Hi...

Well, I'm glad that your curves haven't increased. Unfortunately, I can't remember a single individual with a significant scoliosis curve, who had decompressions that didn't lead to a rapid progression of the scoliosis curves and the need for more surgery. I would definitely make sure you understand what the risk of additional surgery is.

Regards,
Linda

rohrer01
01-26-2012, 12:42 AM
I've heard that a laminectomy is a NO, NO if you have unfused scoliosis. I don't know what kind of decompression they are going to do. Are they going to just try to make the nerve root openings larger? I had a friend in his 70's that has mild scoliosis (upper 20*'s I believe) that had no problem with progression when he had that done. But that is a whole lot different than someone with curves in the 65* range. I'm not trying to scare you, I would just make sure that what they are planning to do doesn't interfere with the integrity of the vertebrae. I would hate to see you have to go through two surgeries for nothing. On the other hand, I agree about the devil you do know being easier to deal with than the one you don't. Once you are fused, there's no going back. I know you'll make the right decision for you and I'm sure you'll get the support here no matter what you decide. I think that having the stress reduced for now may be a big plus for you if you are having other difficulties in your life. I wish you all the best! (((HUGS)))

Rohrer01

Mojo's Mom
01-26-2012, 09:14 AM
After reading what you two posted I got on the phone with Dr. O'Brien right away and asked him about this. He said that although it has always been standard advice to warn patients that the curves could collapse, he has rarely seen it happen in his many years of practice. He said that he would not make the recommendation he made to me if he thought it would lead to curve collapse, but that it was possible.

I do think that I will eventually need fusion, so it's not like I think I'm dodging a bullet here. It's just that all my life conservative treatment has served me well with this condition....

I don't know, I thought I had it all decided, now I'm back to being unsure again....

rohrer01
01-26-2012, 11:20 AM
I'm sorry. I didn't mean to make you feel uncomfortable with your decision. I just wanted you to be forwarned. If you know you will need fusion someday anyway, then you have nothing to lose by doing this. It may be that you are just not prepared mentally for the fusion right now and buying a little time might still be a good thing. You have to go with what you and your doctor feel comfortable with. These forums are full of all kinds of advice, but it all boils down to what you want. Take care.

Rohrer01

mabeckoff
01-26-2012, 11:30 AM
I do not have any advice for you but I just wanted you to know that I will thinking of you and praying that you make the correct choice

Mojo's Mom
01-27-2012, 11:22 PM
I was in such turmoil after basically reaching a surgery decision and then reading the posts it generated on this thread, that I contacted Dr. Lenke's office yesterday to start the process of getting a consult with him. In the process, I asked his patient coordinator if she would do me the favor of asking Dr. Lenke for his professional opinion of my surgeon, Dr. O'Brien.

Today I got the answer from Naomi that Dr. Lenke had said that Dr. O'Brien is a "tremendous surgeon" and that I was in excellent hands right where I am and there would be no need to consult with Dr. Lenke. That being the case, I have more confidence than ever in my choice of surgeons.

While I recognize that there is a chance my lumbar curve will progress from the nerve root decompression being recommended, Dr. O'Brien feels this is unlikely, and in the end, what do I have to lose? The nerve issues I have must be addressed, so I must do something now. I have no documented curve progression over the last year, so my scoliosis may be stable for the time being. It makes sense to me to address the immediate problem and wait and watch the scoliosis itself. Worst case scenario, I end up with the full fusion much sooner than I hope for, but it's likely I'll have to be fused at some point anyway. I know I am likely only buying a little more time to live with a flexible spine, however awful my torso may appear.

We'll see what happens.

leahdragonfly
01-28-2012, 10:02 AM
Stephanie,

good luck with your decision. I sent you a PM.

jrnyc
01-28-2012, 01:48 PM
hi Steph..
2 questions...
i thought Dr Lenke won't see anybody with curves under 70 degrees lately...??
and....
have you tried pain management injections...??
i have curves of 61 (or 70...new X ray supposedly shows increase to 70) and 42 throacic,
degenerative disc disease, spinal stenosis, spinal arthritis, hypokyphosis, listhesis,
pinched nerves, and a few other spinal conditions i think i have blocked out by now...
after not getting relief from epidurals, facet blocks, or nerve ablation, i have
had relief from SI joint injecitions...
i know i need surgery, T4-sacrum with pelvic fixation, but in the mean time, i
wanted to find relief from the lumbar pain, which is the worst...the thoracic
pain is not as bad....i get botox in thoracic area....

anyway, i just thought i'd ask what else your've tried up to now...
i wish you the best of luck with whatever decision you make...

jess

Mojo's Mom
01-28-2012, 03:51 PM
Hi, Jess,

I thought you might turn up on this thread...I really haven't tried anything else. The CT myelogram last year made it pretty clear that I might get some degree of pain relief from injections, but the nerves are going to be pinched unless the passages are opened up for them and I fear functional defecit at some point if I don't do something.

Overall, I've dealt with my symptoms by working out as much as possible, stretching, using a heating pad, and massage. Mostly I just put up with it. Nothing makes much difference. All those different kinds of injections make me as nervous as surgery, really, and I have always felt uneasy about masking pain in any way, because I want to know what is going on in my body and make sure I can tell what helps and what makes it worse. My husband takes narcotics and has gotten epidurals for pain, and when those things work it actually masks pain such that it is much easier for him to do damage to himself than if he felt the real pain and could notice when he pushes too hard and makes things worse.

Dr. Lenke's patient coordinator told me that he has loosened his requirements for surgical consideration, and I guess mere cobb angles are not the only criteria. She told me that at one point you had to be 80 degrees or worse, but that no longer holds true. He does prefer to take on the worst cases. I never got as far as sending my records to Lenke's office for review to see if he might take my case, because of the glowing recommendation on my present surgeon. That was good enough for me. If Lenke says O'Brien is a "tremendous surgeon" I will go with that. Dallas is much closer and easier for me than St. Louis, too. Plus I will have a plane ride home straight from a Dallas area airport to my own house if I stay with Dallas, when the time comes for the big surgery, and that's no small thing.

jrnyc
01-28-2012, 06:52 PM
well, of course you should do what is best for your situation...
the shots do not scare me at all, because they don't last...
i have never had any shots give me relief for more than 10 weeks TOPS!!
i know there are some who claim that their epidural, or other type of
injections, gave them lasting relief for a year.....must be nice!
but surgery scares me because it is forever...even if the rods are removed, the
fusion is forever!!! what if i don't do well after healing...?
no changing my mind, whereas the shot will wear off...
i would just have to wait it out...
believe me, no injection has ever masked my pain completely....
i know exactly what and where it is, even with these SI joint injections....
there is still enough of a slight, dull ache in the lumbar for me to remember
what is what!

good luck with whatever you do....
jess

rohrer01
01-28-2012, 10:19 PM
Stephanie,

As far as I know, the shots don't mask pain. I've been getting lumbar epidurals. They don't hurt, but your back and legs feel weird for a day, nothing major at all. I was told that the steroid reduces inflamation and can actually help some people to heal. My first epidural lasted over 9 months and I thought I was going to be one of the lucky ones to heal, but I'm not. It hurts again when the inflamation comes back. I, too, have pinched nerves in my lumbar. I'll admit that taking narcotics does mask the pain (it doesn't eliminate it), BUT it keeps you mobile. Mobility is important. If I didn't have the narcotics, I couldn't lead a normal life and do things like play with my grandson. There are so many things that I continue to do. If I sat around immobilized in pain, that wouldn't be a good thing, as I would get out of shape and stiffen up not to mention muscle atrophy and the effects on the cardiovascular system. So, until my day comes, I have to manage however I can. I also get trigger point injections in my muscles to curb the muscle spasms AND I take muscle relaxants on a daily basis. Muscle spasm can cause all sorts of immobilizing pain.

I guess the point is, that shots aren't always a bad thing and they don't hurt (at least mine don't). If you aren't ready for surgery it's an alternative to think about. Decompression is a surgery, too. Not trying to convince you either way. I have a sister that badly needs decompression surgery and won't have it. I had a friend that also refused and is now in a wheelchair. I'm afraid my sister will wait too long. I don't envy your position. If it were me and I needed the scoli surgery anyway, I would probably just do the scoli and decompression at the same time and only have to do one surgery. But I'm not you. I don't live in your shoes and I don't know your circumstances. The only one that can make this decision is YOU, no matter what anyone else on here says. I wish you all the best and will give you support no matter what you decide. Hang in there.

Rohrer01

golfnut
01-29-2012, 05:35 PM
Stephanie,
As all have said, this is your decision and I'm sure you have enough information to make the right decision for you. I think you can trust that your surgeon is recommending what he feels is best for you at this time. Since Dr. Lenke gives him high marks, you can rest assured that you have a top surgeon.

Mojo's Mom
01-29-2012, 07:50 PM
Stephanie,
As all have said, this is your decision and I'm sure you have enough information to make the right decision for you. I think you can trust that your surgeon is recommending what he feels is best for you at this time. Since Dr. Lenke gives him high marks, you can rest assured that you have a top surgeon.

Thanks, that is exactly what I have decided. In the end, you have to trust your surgeon. This forum did me a huge favor since all the questions motivated me to do what I had been thinking of for some time: asking Dr. Lenke for his opinion on Dr. O'Brien. Getting the blessing, not just blessing but glowing recommendation, from the Oracle at St. Louis, made all the difference to me.

rohrer01
01-29-2012, 10:40 PM
I'm glad that you feel much better. I wish I could get more information on MY surgeon. It would make me feel better to know that I'm in some of the best hands, too. I'm just so limited by my insurance. Again, sorry if I scared you. But it seems the outcome was for the best in knowing you have a very good doctor!

Rohrer01

Mojo's Mom
01-31-2012, 03:04 PM
Again, sorry if I scared you.
Rohrer01

No one should ever apologize for anything on this forum unless they are being mean. You all did do me a favor, and I may be making the wrong call. I have huge curves...but darn it, I'm not going to get fused until I feel like I really have to.

My time will come, I have no real doubt.

Mojo's Mom
02-04-2012, 08:03 PM
So I just read up on the Lexiscan cardiac stress test my surgeon has ordered as part of my pre-surgical workup...have you all been through this? It is much more involved and much more scary than I'd had any idea of.

I'd just like to hear some feedback from those of you who have done it.

I was terrified of the CT myelogram, too, and it was no big deal other than the tedious 24 hours flat on my back afterward.

jrnyc
02-04-2012, 09:29 PM
hey Steph
you're good...
i spent about 4 hours on my back at the place that did the myleogram, and went
home by cab and spent another 12 hours or so on my back, out of fear....
got no headache...
did you read your myleogram results yet....?
i read mine...really scary to me, just because it shows a whole lot!

jess

rohrer01
02-04-2012, 11:57 PM
I don't know what kind of stress test this is. I've had the kind where they monitor your heart rate, pulse, AND do an echo cardiogram all at the same time as I am laying on my back pedaling this bicycle type thing. That was pretty hard to do, but helped tremendously in my diagnosis of IST.

The only CT/myelogram I ever had was a nightmare. I had to spend two days in the hospital and they wanted to keep me longer. They wouldn't let me up to pee and I was 16 years old and not about to go in a bedpan. I laid there on the bedpan for a very long time (seemed like hours) crying and not being able to go. They finally let me up to the bathroom. I did get the headache, too. It was aweful. That's why I'm scared to have another one. :-(

Mojo's Mom
04-14-2012, 12:36 PM
Hi, everybody, I have been off the forum for quite a while. I just flew home from Texas after a three level laminectomy surgery with Dr. O'Brien at Baylor's Southwest Scoliosis Center.

I am about ten days post-op now, and I just want to say that I am incredibly impressed with what all of you have been through who have had instrumented fusions! My much smaller surgery has been no cake walk and the pain on day two particularly was amazing to me. That and just how difficult it was so simply sit up on the bed, or stand up. I underestimated how hard the surgery would be and how slow recovery is even from relatively minor back surgery. I guess I wasn't thinking about the fact that muscles get cut, even with this.

I just finished a mile walk, my longest yet, and although there is back pain, the crippling left hip and leg pain/tingling/burning no longer occurs. That was the goal of surgery. I have most of the movement and activity limitations you all have, just for a much shorter period of time.

It remains to be seen whether or not the choice I made works out well. At the end of May I will be back in Texas for follow-up and we will see if the lumbar curve is remaining stable. But the morning of surgery, when Dr. O'Brien came in to see me, I asked him, "You really think this is going to work out?"...not a serious question at that point, you understand...He said if he had the curves I had, if he had the symptoms I described, our surgical plan was what he would do if it were him.

Many of us have agonized over difficult decisions. Surgery or not? If surgery, what surgery? If fusion, how far down? Will we feel better afterward, or worse? Have we chosen the right surgeon?

In my case, I chose to go with a minimal surgery to relieve crippling radiculopathy, and leave the scoliosis alone for now. It was a hard choice, but I put my trust in my surgeon, and in my long standing policy of conservative treatment of my condition. I realize a long instrumented fusion is likely in my future and I would guess best case scenario might be five years out and worst case could be as early as months. I knew that going in and I am ok with it.

Thanks to all of you forntheninformation and personal stories you share here, both encouraging and worrying. No one else knows what it is like to live with moderate to severe scoliosis as an adult with many responsibilities and a complicated life with many demands. This forum has helped me so much, and I know it will continue to help as my journey progresses.

golfnut
04-14-2012, 01:28 PM
Stephanie,
It is good to hear from you. Walking a mile is fantastic! Like you said, we all agonize over making the right decision. Hopefully, you have bought yourself some time and won't need a long fusion for years. I was 60 when I had surgery, so you still have time. Best of luck with your recovery.

mabeckoff
04-14-2012, 02:15 PM
Glad to hear that you are doing so well

Mojo's Mom
04-14-2012, 05:40 PM
Stephanie,
It is good to hear from you. Walking a mile is fantastic!

Well, the mile is different for me, I only had a small procedure, not a corrected spine with instrumented fusion. I almost don't feel worthy of posting here about my recovery...and I was in excellent physical condition going into my surgery.

L
Like you said, we all agonize over making the right decision. Hopefully, you have bought yourself some time and won't need a long fusion for years. I was 60 when I had surgery, so you still have time. Best of luck with your recovery.

A large part of my decision was based on my confidence that, especially with the leg pain resolved, I will be able to maintain a high level of fitness in the coming years (yes, I know, no crystal ball). In fact, if the leg pain is truly resolved AND my lumbar curve does not destabilize, I expect to achieve an even higher level if fitness once I have healed from this surgery.

Of course, I still look like Hell, but you can't sweat the small stuff!

Confusedmom
04-14-2012, 09:32 PM
Congratulations on making it through your surgery with flying colors! I can tell you that if I hadn't had progression, I wouldn't have had the long fusion. You had a great surgeon and good advice, so I bet you'll do very well. You are walking a mile at a time at 10 days out, while I'm walking a mile in a day at one month out (and at age 40). That's the difference (among others) with the long fusion. I wish you a smooth and swift recovery, and it sounds like you are well on your way!!

Best,
Evelyn