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susancook
04-18-2012, 01:10 AM
I am new to the forum and to the whole scoliosis scene. I am 65 and was diagnosed 9 months ago when I had physical therapy for back pain for a year and wasn't getting better. I finally asked for an xray and much to my surprise have a 36 degree thoracic/lumbar curve. I was getting no where with the MD/ortho that I was seeing locally, so I self referred myself to the Spine Center at Oregon Health and Sciences University [about an hour away] and found a great team of surgeon, pain specialists, psychologists, physical therapists....a really supportive team. I have pain, starting about an hour after I wake up that progresses depending on my activities of the day. If I am active, then I am easily an "8-9" in the evening even if I am using the IF setting of my TENS unit and Lidocaine patches. The Pain Specialist MD is going to do a Medial Branch Block and then a Denervation if that is successful. That supposedly takes care of arthritis pain?

How does an individual decide to have the surgery? How much pain should you be in to have the surgery? Whenever I do decide to have surgery, I plan to get a second opinion. I am taking pain pills now and pain management classes.

Thanks.

leahdragonfly
04-18-2012, 09:48 AM
Hi Susan,

I'm sending you a PM. I live in Oregon also and been followed by Dr Hart at OHSU for about three years. Although I have had some bumps in the road to recovery, I am very pleased with Dr Hart and have found him to be very responsive and willing to answer all questions. He also has a great staff.

If you do a search for "Hart" you will find several other people here who have had surgery with him. You can also ask for the names of several patients who had similar surgeries as what is being proposed for you, and talk to them by phone. I talked to three patients this way and found it to be very informative. My situation was different from yours, but I am also happy to talk with you by phone if you would find that helpful.

Best of luck,

Marina63
04-18-2012, 11:43 AM
If I had a curve like yours I would do everything in my power to avoid surgery. My curve was 60+ and progressing which gave me little choice.
Good luck!
Marina

jrnyc
04-18-2012, 01:36 PM
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

Karen Ocker
04-18-2012, 02:42 PM
Even though your curve appears below scoliosis surgical threshhold pain levels like 9 are too high. Perhaps there is an associated spinal abnormality, like spondylolisthesis, which is correctable by itself using a spinal fusion. A thorough investigation is in order. Malformed vertebrae are also a possibility.

Pooka1
04-18-2012, 02:47 PM
Do you have a trunk shift? I posted a case from a surgeon's blog about someone with a smallish curve but lots of pain due to the associated trunk shift. He still didn't offer her surgery but there may be some PT to address the trunk shift. I have no idea.

Good luck.

Pooka1
04-18-2012, 02:50 PM
Here is that thread I started. Does this seem to fit your situation also?

http://www.scoliosis.org/forum/showthread.php?13128-Why-a-26*-curve-plus-trunk-shift-can-be-so-painful

The other thing is if nothing else is found, unless the surgeon thinks fusion is likely to ease your pain, I agree with the folks who say it might be hard finding a reputable person to do it.

LindaRacine
04-18-2012, 03:40 PM
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

jrnyc
04-18-2012, 04:33 PM
i thought curve progression is supposed to be an important indicator as to the need for surgery....
to stop the progression from getting worse....that is what i have heard from every surgeon, and
from every pain management doctor...the pain management docs were ALL against having scoliosis
surgery for any other reason....
and...supposedly, surgery is NOT a guarantee of being pain free, or of even reducing pain levels,
after healing...
i thought progression of curves is an indicator that the spine is getting worse, even collapsing
in some cases....

???

jess

Marina63
04-18-2012, 06:15 PM
i thought curve progression is supposed to be an important indicator as to the need for surgery....
to stop the progression from getting worse....that is what i have heard from every surgeon, and
from every pain management doctor...the pain management docs were ALL against having scoliosis
surgery for any other reason....
and...supposedly, surgery is NOT a guarantee of being pain free, or of even reducing pain levels,
after healing...
i thought progression of curves is an indicator that the spine is getting worse, even collapsing
in some cases....

???

jess

I'm with you, Jess. I thought the same thing and you are right that the surgery doesn't guarantee decreased pain. I went from 30º curve to a 61º curve in 15 years. I didn't have much pain.

LindaRacine
04-18-2012, 10:55 PM
I was talking specifically about the issue of a single curve measurement as being unimportant. Progression is definitely one of the variables that a good specialist will look at, but it's just not applicable to this discussion.

Confusedmom
04-18-2012, 11:14 PM
I'm with Karen Ocker on this one. You need a really thorough investigation of what's going on. I would be surprised if 36 degree curve alone would cause that much pain. Find one of the VERY BEST doctors to check you out. I'm sure Linda can recommend someone in your area. Good luck! I'm sorry you're in so much pain.

Best,
Evelyn

susancook
04-19-2012, 12:09 AM
Hi Susan,

I'm sending you a PM. I live in Oregon also and been followed by Dr Hart at OHSU for about three years. Although I have had some bumps in the road to recovery, I am very pleased with Dr Hart and have found him to be very responsive and willing to answer all questions. He also has a great staff.

If you do a search for "Hart" you will find several other people here who have had surgery with him. You can also ask for the names of several patients who had similar surgeries as what is being proposed for you, and talk to them by phone. I talked to three patients this way and found it to be very informative. My situation was different from yours, but I am also happy to talk with you by phone if you would find that helpful.

Best of luck,

Thanks Gayle. I don't know what a "PM" is???? I do like Dr. Hart. I see him again next week. When I saw him 3 month ago, I was in severe pain. He saw me and described the surgery and then asked me to bring my husband back the next week and we reviewed everything again. My surgery would involve T3 to S1, if we decide that is what we want to do. I see Dr. Sibell for conservative treatment. He did volunteer to give me names of people that had surgery similar to mine, so maybe that is what he will do next week. I don't have any idea how and if mine will progress. My first xray was in Aug 2011 and that one showed a 33 degree curve [boy was I surprised!, that was my initial diagnosis] and then the Jan 2012 xrays showed a 36 degree....the change might be different machines or unknown varience, not a change in the curve. The fall xray of 2012 will be helpful to give more info on progression. I am glad that I found a supportive local person like you. Susan

mdtaffet
04-19-2012, 12:43 AM
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

susancook
04-19-2012, 12:45 AM
If I had a curve like yours I would do everything in my power to avoid surgery. My curve was 60+ and progressing which gave me little choice.
Good luck!
Marina

I plan to keep going to physical therapy and try to figure out how to control the pain. The evenings are tough, but I'm optimistic that maybe things will get better. Yes, surgery is a very big decision. Mine would be from T3 to S1 if I have it. Best of luck to you.

susancook
04-19-2012, 12:50 AM
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
04-19-2012, 01:02 AM
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
04-19-2012, 01:03 AM
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
04-19-2012, 10:35 AM
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
04-19-2012, 07:44 PM
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
04-19-2012, 09:09 PM
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
04-19-2012, 10:04 PM
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
04-20-2012, 12:36 AM
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
04-20-2012, 08:18 AM
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
04-20-2012, 09:02 AM
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
04-20-2012, 10:53 AM
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
04-20-2012, 11:03 AM
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
04-20-2012, 04:28 PM
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
04-20-2012, 05:02 PM
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
04-20-2012, 05:36 PM
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.1295
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

susancook
04-20-2012, 06:06 PM
I'm with Karen Ocker on this one. You need a really thorough investigation of what's going on. I would be surprised if 36 degree curve alone would cause that much pain. Find one of the VERY BEST doctors to check you out. I'm sure Linda can recommend someone in your area. Good luck! I'm sorry you're in so much pain.

Best,
Evelyn

Thanks Evelyn, I am confused also. The most sense that I can make of this is that I have "Degenerative Adult Onset Scoliosis" which must be different than scoliosis that progresses from younger years. While my curve is smaller...what small?, I have significant pain. Go figure. Dr. Sibell at OHSU thinks that some of it is from arthritis in the spine, so he is planning a "medial lumbar branch block" x 2 and if that helps, then a Radiofrequency Neurotomy. As I understand it, that can provide relief for 2-15 months. That will not address the pulling pain from the "S" curve pull on the muscles that gives me the burning R sided muscle pain. I see Dr. Hart, surgeon at OHSU and Dr. Sibell, a pain managment specialist. I'm not rushing into anything except physical therapy, TENS unit set on IF, pool therapy, pain management "Mindful pain management program", and getting on line here and finding support. I see Dr. Hart the surgeon next week and have at least 18 questions to ask him and then followup xrays in the fall to "follow the curve". I really like him and have alot of confidence in him. If I do contemplate survery, which may very well be in my future, I will probably go to UCSF for a second opinion. I had natural childbirth, so I tolerate pain. At that point of contemplating surgery, I probably can barely crawl and will be in constant tears, so I'm not sure that a second opinion would be needed. Thanks for your support.
Susan

susancook
04-23-2012, 07:47 PM
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?)

Thanks for your advice. Linda sent me a message, I don't know if it is on this thread or another that I posted, that Dr. Hart at OHSU was named one of the tope 28 spine doctors in the US. He does 200 spine surgeries a year, 50 of them are scoliosis, all of the scoliosis surgeries are adult. I agree with you totally about having a doctor that is a spine specialist, and not someone who does just one a month or so is very important. I wasted time seeing a neurosurgeon in Vancouver, WA. who does not do scoliosis surgery who gave me poor advice. I will probably have a second opinion if I decide to go the surgical route, and will probably go down to UCSF for that since I do not see any other major spine expert here in Portland, Oregon. Having said that, I have a lot of confidence in Dr. Hart and trust him. I have seen him twice and see him again tomorrow.
Susan

mdtaffet
04-23-2012, 09:36 PM
Thanks for your advice. Linda sent me a message, I don't know if it is on this thread or another that I posted, that Dr. Hart at OHSU was named one of the tope 28 spine doctors in the US.

With a google search, I found that article; it is available at http://www.rushortho.com/pdf/Orthopedics%20This%20Week%20Top%2028%20Spine%20Sur geons%20in%20America.pdf.

Though there is no emphasis on "best", here is another list of 20 spine surgeons who focus on scoliosis -- http://www.beckersorthopedicandspine.com/spine/item/11249-20-spine-surgeons-focusing-on-scoliosis.

-- Mary

susancook
04-24-2012, 10:18 PM
With a google search, I found that article; it is available at http://www.rushortho.com/pdf/Orthopedics%20This%20Week%20Top%2028%20Spine%20Sur geons%20in%20America.pdf.

Though there is no emphasis on "best", here is another list of 20 spine surgeons who focus on scoliosis -- http://www.beckersorthopedicandspine.com/spine/item/11249-20-spine-surgeons-focusing-on-scoliosis.

-- Mary

Thanks for the info.
Susan

susancook
04-26-2012, 04:05 AM
Back to the surgeon [pun intended], and now it is up to me if I want to have the surgery to let him know. He said that I am a "good candidate for surgery". I asked tons of questions for which I wanted exact answers in a realm of what causes the back pain in a 65 YO back with arthritis, moderate to severe degenerative disc disease, and then there's the scoliosis [I didn't get exact answers]. It would be a massive surgery, T3 to S1 fusion. The "death risk" that he quoted was 1/200 and he said for long term, that 80-85% of people had less pain after surgery, 10 % had the same amount, and 5% had more pain after surgery. Maybe I'm unrealistic, but I don't see my current pain level or my disability enough to warrent such a surgery. The Pain management MD looked at my xrays and said that the edge of my rib cage was 2 cm from my pelvis on the right side. So, right now, thanks to everyone who provided input. I will continue w/ physical therapy and pain pills and have repeat xrays done next Jan to see if my curve has progressed. In the meantime, if my pain inceases to the intolerable zone, my quality of life is poor, or I am not able to participate in actvities that I enjoy because of pain, then I may call for another appointment w/ Dr. Hart to discuss surgery.
Susan