How do you make the decision on whether or not to have surgery?

[susancook]

Susan,

My primary motivations that pushed me towards having the surgery were:

(1) I developed neurogenic claudication (due to lumbar stenosis), which made it very difficult to stand and very difficult to walk. This was somewhere during the January to March timeframe in 2009; I had had warning symptoms as early as June/July 2008, but during the winter months in 2009, it became so painful that lifting my left leg high enough to move my left foot forward one step was excruciating. It improved after I started parking closer to my downtown job, but eventually it got to the point that I could never complete my list of things to do during a given week because it was just too painful to walk far enough to do what I needed to do.

(2) My lumbar curve progressed from about 25 degrees in July 2007 to about 42 degrees by September 2012; I assumed it would just keep getting worse and worse, and the surgeon also told me that my spine was collapsing. I knew that surgery would get more difficult and complex the longer I waited, so I decided to go ahead and get it over with.

Before my leg problem started, I was able to control the pain via exercise and NSAIDs for the most part. But I had to stop all of my exercise classes once the neurogenic claudication set in, because exercise just made it worse.

-- Mary

Hope you're better now! Thanks for the input. Your symptoms sounded severe. I'm just at the beginning of this journey, so I hope that I can control the pain and I hope that the curve doesn't progress too fast, or at all! Thanks for sharing. Susan

[susancook]

i would be surprised if you find a surgeon who will operate on a curve of 36 degrees...
surgeons have always said the curve must be at least 45 degrees, some say 50 degrees...
i agree that non surgical tx would be the way to go....

best of luck....
jess

One of the criteria for surgery is amount of pain, assuming that the pain is caused by the scoliosis. When I first saw the surgeon, I was in severe pain, but my pain has improved some with PT and analgesics. I'm not sure that there is an absolute number on the curve for surgery, but the decision on whether to have surgery is made, as I understand it, on severity of pain, disability, rapid progression of curve and of course, compromise of respiratory system or GI system. I plan to continue w/ PT and visits to the pain psychologist as well as monitoring of the progression of the curve over time. Since I only have 2 xrays, I am unsure what time will bring. I agree that non-surgical tx is the way to go. Suggestions on controlling the pain?

[jrnyc]

T3 to S1 sounds like a long fusion...
and a VERY long fusion for a 33 or 36 degree curve...
the 3 degree difference, as you mentioned, could likely be nothing....

why is the surgeon in a hurry to operate with a curve of that size...?????

jess

[leahdragonfly]

degenerative adult scoliosis

Hi Susan,

I think some of the other posters who questioned the need for surgery at 36 degrees are forgetting that you have degenerative adult-onset scoliosis, which is very different from curves in people who are now adults who had curves from adolescent scoliosis. So I am not surprised that a long fusion has been recommended. Adult scoliosis curves are frequently/usually under 40 degrees, and extremely painful. The fact that your MRI showed severe disc degeneration throughout your whole lumbar is the reason the fusion is being recommended. Someone else on the list just had surgery for a similar situation, I think it was mdtaffet. If you looked at her x-ray you could understand why a long fusion was required, even for a curve under 40 degrees, since the lower spine looks collapsed like a stack of blocks.

I am glad to hear your pain is a little better controlled, and I am sure you will learn more from Dr Hart next week. I will be there also-my appointment is at 11:30. I am sure Dr Hart can explain why he needs to go to T3.

PM is "private message." If you look along the top of the page you will see "notifications" next to your screen name. Click on that, and it will show inbox. The message I sent will be in the inbox.

Best of luck, and please let us know how you are doing.

[jrnyc]

i just found the mention of disc disease on susan's other post....
i knew i didnt see it here on this thread....
i do understand the hell bad discs cause, as i have severe DDD..lower spine...

BUT....i have NEVER heard a surgeon promise pain relief after surgery for scoliosis heals....they just cannot
make such a promise honestly....there just is no guarantee of pain relief after scoliosis surgery...

Susan, as far as suggestions for treating pain, the best person to ask is the pain management doctor...
i can tell you what i have tried...
i have had epidural injections, facet block, nerve ablation...none helped much...
i had trigger point injections that did nothing for me...
the one thing that did help, and the doctors couldn't figure out why, were the sacroiliac joint injections i got...
the doctor said it didn't make sense why injecting that area helped so much...but it did....
problem was, he gave me way too much steroid last time i got shots, in January, and i now have very low
cortisol as a result....and the exhaustion that goes with it....
so i cannot have any more steroid shots for now...i will be having blood work next week to see if cortisol level is
coming back...
what i do know is coming back is my lumbar pain...

also, what helps my thoracic area pain is botox shots...i get them in upper spine very 3 months or so...
they stop muscles from going into spasms...
but my lower back pain is much worse...

there is surgery that can be done on JUST the discs...i have a friend in CA who had it done, arthroscopically,
and he is fine now...but he does not have scoliosis....

best of luck whatever you decide....
jess...& Sparky

[titaniumed]

Susan

For pain control, hot soaks and massage worked well for me for many years.....Don’t get too addicted to massage as the expense can really add up.....(smiley face) PT is also a good thing.

Once I was out in Hawaii and almost died. I went to a restaurant and ordered a drink and couldn’t even stay for a minute, slapped down some cash and ran out. This is one example of major pain.....I was thinking that I could go to the Kona hospital and maybe beg to be knocked out. Just inject me now, and knock me out. I ended up getting a lomi-lomi massage, done in a jungle.....that lady saved my life....wow! My nervous system was shot at the end.

Making a decision on surgery is probably the scariest thing we will do in our lives. It took me 34 years to finally say yes, after very careful thought and of course major pain.

Welcome to the forum
Ed

[mdtaffet]

Hi Susan,

I think some of the other posters who questioned the need for surgery at 36 degrees are forgetting that you have degenerative adult-onset scoliosis, which is very different from curves in people who are now adults who had curves from adolescent scoliosis. So I am not surprised that a long fusion has been recommended. Adult scoliosis curves are frequently/usually under 40 degrees, and extremely painful. The fact that your MRI showed severe disc degeneration throughout your whole lumbar is the reason the fusion is being recommended. Someone else on the list just had surgery for a similar situation, I think it was mdtaffet. If you looked at her x-ray you could understand why a long fusion was required, even for a curve under 40 degrees, since the lower spine looks collapsed like a stack of blocks.

Yes, that was me! And my scoliosis was of the adult onset degenerative type. Severe disk degeneration, stenosis, facet arthropathy (i.e. spinal osteoarthritis), along with the curve. If it's possible to upload a scanned document, maybe I'll see if I can scan in the report from the first MRI back in March 2009.

I was first told by a nurse practitioner working in my primary care physician's office that I had scoliosis at the age of 45 (a few days before defending my dissertation proposal), though it was visible on a full-body (or at least full-spine) X-ray 9 years earlier than that, but I didn't believe it back then; I assumed that the chiropractor who took those X-rays and assembled the whole from the parts didn't know what he was doing. The nurse practitioner referred me to a very good chiropractor who used to be an RN. That helped a bit, but the insurance stopped covering it when they realized it was a chronic problem that wasn't going to be resolved quickly. A year later my primary care referred me to physical therapy, which also helped a bit. But I started a full-time job not long after that, and my back problems started getting worse and worse, mostly because I was spending more time sitting and working. Then I started trying to exercise two years later (pilates classes, healthy back classes, spinning classes, step aerobics classes). Those helped for a while, until the leg pain started, and then as I said before, exercise just made it worse. I had gone to a different chiropractor about the time I started exercising. But once the leg pain started, I went back to the chiropractor that I trusted more (the RN). She actually helped me a LOT that time (except for the leg pain), except that with the job I had at the time, I really couldn't afford the time to spend 2 to 3 visits a week at her office. We cut back to once a month, which wasn't nearly as helpful.

In between seeing the third chiropractor and going back to the second chiropractor, after the lumbar stenosis made walking painful, I had a series of 3 Lumbar Transforaminal Epidural Steroid Injections. The first one made no difference; the second one made things much worse because I wasn't fully sedated when the procedure started, and I could feel EVERYTHING! The 3rd one helped my leg for about a month but did nothing for the back. After I went back to the 2nd chiropractor, she suggested having a Facet block, also called a Medial Branch Block (i.e. another steroid injection). I had 3 of those. The first one actually helped both my back and my leg for close to 3 months, but then the pain returned. The 2nd and 3rd made no difference.

Along the way, I was given an SI belt by the 2nd chiropractor, and then a "BOA Classic Spine Brace" with a chair back by the pain specialist who had been prescribing the steroid injections. Neither of those really helped.

The pain specialist then referred me to the surgeon at my request. I sought him out because he was participating in a clinical trial for a minimally invasive device to help with stenosis. But when he saw me, he looked at the fresh set of X-rays taken just before and told me that I wasn't a candidate for minimally invasive anything and that the only procedure he would recommend was the long fusion due to the way my spine was collapsing.

But I have to tell you that for the last couple of years before the surgery, brushing my teeth was a daily exercise in self-torture. And not to be crass, but using the bathroom became a really painful experience if there was anything other than liquid; the longer it took to clean up, the worse it got. The last month or so before the surgery, my back would "catch" as I was standing up from the toilet; the surgeon's nurse surmised that it was my ribs rubbing against my hip. That and my difficulty walking really helped me decide in favor of the surgery.

The surgery took place just a bit over 8 years after the initial diagnosis. Yes, that makes me 53 now

-- Another degenerative case,
Mary

[jrnyc]

i was never given anesthesia for any of my spinal procedures, including any of the
injections, epidural or otherwise...
and my first epidural injection was done at Columbia Pres in Manhattan...
maybe i should have asked for sedation....? i have had worse, believe me, so it didn't
occur to me to request sedation....
bottom line is that none worked great except for botox for thoracic and steroid SI joint injections
for lumbar....but the problem with too much steroid for lumbar means no more for a while...

Dr Lonner said he thought i would have less pain after healing than before surgery, but
couldn't guarantee it, and there was always a chance you could have more pain...he didn't
think that the most likely outcome, but he had to tell me anyway....

jess

[Confusedmom]

Jess,
That is what my local surgeon told me,'as well. But it seems like, just anecdotally, most people with significant pain do better with the surgery. Maybe Linda knows if there are any academic studies to support this?

I fully believe that in scoliosis surgery, you have to have one of the VERY BEST surgeons in the country. When we were in Dr. Lenke's office this week, we met two other patients who had had revisions with Dr. Lenke because their local doctors messed them up badly in the first place.

So, my number one suggestion in making the decision about surgery is to go to the very top for advice. Lenke, Boachie, Lonner, the people in Linda's office, the Minneapolis Spine Institute, and I can't remember the name(s) of the great surgeons in Texas. There are more, of course, that I'm forgetting But ask Linda and find one of them! (Linda, maybe you should make a "sticky" with your top 10 or 20 list , or recommendations by geography?)

[jrnyc]

hi Ev
i have seen the expert scoli surgens...Boachie, Neuwirth, Lonner, Anand (in LA), Errico, and a few
others i no longer remember...i have had the myleogram, the MRI's, the X rays, the CAT scans, etc...
done all of it...got basically the same opinions from all the surgeons...
i just have not made up my mind that surgery is best for me...
i wish only the best for those who do have the surgery

jess...& Sparky

[mdtaffet]

i was never given anesthesia for any of my spinal procedures, including any of the
injections, epidural or otherwise...

Jess, this WASN'T anesthesia; it was conscious sedation, which is routinely used by the pain specialists at New York Spine and Wellness, which is the group that did the injections on me.

My hands in general have very small veins, so when they tried to insert the IV needle into the back of my hand, it failed. Instead they used my elbow at my suggestion. But then they needed to hold the IV line up for the solution to make it into my elbow when I was in the procedure room, and didn't do that soon enough for me to be sedated before the procedure started.

I wonder if my small veins are why I'm STILL numb from the special sort of line (PICC line maybe if I heard correctly?) they put in my left wrist during the first two days of my hospital stay -- after almost 3 months now. Whatever that line was, it had to be removed before I left the post-surgical intensive care unit. The guy who removed it had to use a knife to cut it off of my wrist piece by piece.

-- Mary

[jrnyc]

hi Mary
i meant i never had any kind of sedation for any of my injections...didn't occur to me to ask, and no one offered.....
i did have an IV line in for the epidural injection done at Columbia Pres, but it was just for an emergency....
they didn't use it...

believe me, i sympathize with the small vein problem....i have the same...
and when i had Lyme Disease, i had to have a catheter inserted in my chest because we ran out of
usable veins in my arms, then hands (ouch) very fast...
the heparin locks they tried to use destroyed all my veins....
so we did the catheter...this was back in the dark ages of Lyme treatment in late 1980's...
i had the catheter in for a year and a half....when they tried to pull it out, it got stuck...
when the surgeon finally cut it out (with a local anesthesia injection to numb the area), there
was nothing on the catheter to indicate why it got stuck...

the first IV i had for Lyme was in elbow area...and it got numb....i think the numbness
happens when they hit a nerve, rather than it being related to having small veins...
i hope your numbness goes away...i would at least mention it to my GP....

jess

[susancook]

Hi....

I think, in the last 5-10 years, surgeons have stopped focusing on curve magnitude in adults, as it's not an adequate predictor of the need for surgery. This week, we had back to back patients who demonstrate why this has happened. The first patient had about a 70 degree thoracic curve with a smaller lumbar curve. While she has some pain, it's not significant, and she is very motivated to stay out of the OR. She is doing regular daily exercise. The very next patient was a women with ~25-30 degree S curves. She says she has extreme pain every day. She'd sign up for surgery today if the surgeon was willing to do it. (He sent her off for 6-8 weeks of PT.)

In terms of determining when it's time, I think it's a process. Generally, people start reducing their function. For example, if you have pain when you stand, you stop doing things like cocktail parties and museums. Then, when the pain gets so bad that you have to significantly reduce the things that are more important (work, taking care of your family and yourself), people generally make the decision to have surgery. In my own case, it was really obvious to me when it was time for surgery. I had back pain prior to my surgeries last year, for about 15 years. Although it definitely had a negative affect on my life, I could still function fairly well. But, when leg pain made it difficult to do my job, and after having several rounds of PT and injections, I knew it was time.

Best of luck with your decision.

Regards,
Linda

Thanks. This was helpful. I heard from another person who said, "when you can't take the pain any more". That seems to be a good milestone. I'm the woman who had natural childbirth, so I just kind of work through it, so I guess I will wait for a while. The good news is that I wake uo in the morning with mild pain, so I know that when I go to bed at night with
"8" pain, that I will be better in the morning. So far, I limit some activities, but not a lot. I have been in Physical Therapy for about 12 months, 2 months at the Spine center at OHSU which has been targeted specifically to my scoliosis. The latter treatment has helped some. They have a team approach including a pain psychologist that I recently started to see. I have seen Dr. Hart x 2 and see him next week for a follow-up. The last time I saw him I was in severe pain and he spent a lot of time describing potential surgery. He had me come back the next week with my husband and we went over the surgical option again. He said that he would do a fusion from T3 to S1. I have confidence in him and his ability to take care of me if we decide to go the surgical route. He treats me w/ respect and since I am a Nurse Practitioner, he gives me alot of great articles that are specific to the surgery which I appreciate. I had decided to continue to do PT and other pain management and "follow the curve" and have a followup xray in the fall. I just wish that I could control the pain better. Dr. Sibell at the clinic has planned a Radiofrequency Neurotomy if 2 Medial Branch Blocks are successful. I hope that they help. This forum is great and I appreciate all that you have posted. When you have another Open House at UCSF that descibes all of the options for treatment, let me know. That sounded very interesting. If surgery becomes an option, and I believe that it will, I will probably come down there for a second opinion. Thanks again, Susan

[susancook]

T3 to S1 sounds like a long fusion...
and a VERY long fusion for a 33 or 36 degree curve...
the 3 degree difference, as you mentioned, could likely be nothing....

why is the surgeon in a hurry to operate with a curve of that size...?????

jess

The 3 degrees of difference might just be an artifact of the two different machines instead of a real change, so it is probably meaningless at this point. I have another xray scheduled this fall which will give better info on the trajectory of the change. As Linda Racine [think that I have her name right] said in her email, she had a patient at UCSF w/ a 70 degree curve and little pain who didn't want surgery and another with at 25 degree curve in severe pain that were back to back patients [pun intended by her, I am sure, if not, great unintended pun]. She said that in adult pts that they are finding that the curve does not necessarily correlate w/ amt of pain.

I don't make the decision about how long to make the fusion, and in fact that is one of my 18 questions to ask Dr. Hart next visit which is next week. I know from reading the literature that they fuse and fix at the bottom to the first stable vertebrae. I assume that they start at the top where the first problematic vertebrae is, which in my case must be T3. I don't have the copy of my xrays of the upper thoracic area, which I will ask for today. I know that I have "severe disease from T10 to L 5", but that is on a lumbar film, so it doesn't address the upper area. And I have "moderate disease from "L5 to S1". Like I said before, this is all new to me, and I read alot now and am trying to understand what all of this means and then how that relates to my pain....and most of all, how to decrease my pain.

I don't get a sense that Dr. Hart is in a hurry to operate and I am certainly not going to rush into surgery of this magnitude. He is a relaxed kind of guy who exudes confidence. He listens carefully and is compasionate. When I asked him "How he makes the decsion on which pts to offer surgery to", one of the criteria was amt of pain. That of course assumes that the person has tried PT and other routes to relieve the pain that are non-surgical.

Right now, I will see what the xrays show in the fall and try to control the pain which seems to be getting worse in spite of PT and it initially was getting better w/ PT. I'm going to put on my TENS unit right now, maybe that will help. Oh yes, and do my relaxation exercise and my regular back exercises.

Susan

[susancook]

Hi Susan,

I think some of the other posters who questioned the need for surgery at 36 degrees are forgetting that you have degenerative adult-onset scoliosis, which is very different from curves in people who are now adults who had curves from adolescent scoliosis. So I am not surprised that a long fusion has been recommended. Adult scoliosis curves are frequently/usually under 40 degrees, and extremely painful. The fact that your MRI showed severe disc degeneration throughout your whole lumbar is the reason the fusion is being recommended. Someone else on the list just had surgery for a similar situation, I think it was mdtaffet. If you looked at her x-ray you could understand why a long fusion was required, even for a curve under 40 degrees, since the lower spine looks collapsed like a stack of blocks.

I am glad to hear your pain is a little better controlled, and I am sure you will learn more from Dr Hart next week. I will be there also-my appointment is at 11:30. I am sure Dr Hart can explain why he needs to go to T3.

PM is "private message." If you look along the top of the page you will see "notifications" next to your screen name. Click on that, and it will show inbox. The message I sent will be in the inbox.

Best of luck, and please let us know how you are doing.

Is your appointment on Tuesday 24th @ 11:30? If it is, I will hang around the waiting area after my appointment so that I can meet you! I am short [used to be 5'2", but now 5'] with a ponytail, 65 looking woman. I have 18 questions to ask him! I probably will be buzzing w/ my TENS unit on! I have a copy of my xray that I will send to you but I don't know how to post it.04-14-2012 02;24;48PM.jpg
Sorry that this ended up upside down. I will fix it for future viewing, but you get the idea. Thanks again for being so supportive! Susan