Surgery in 40s vs 60s

[rohrer01]

My 46* upper left thoracic curve hurts like the dickens. It's not the curve itself so much, but the fact that it is SO high up that it interferes with my neck and all the muscles in my neck and left shoulder especially. I literally am in pain with my neck ALL of the time without strong meds. It is worse since I saw my surgeon over two years ago. It's not going away or getting better this time. I've had episodes last from a couple weeks to a couple of years and anywhere inbetween. This one isn't letting go. I'm 43 and don't quite know what to do either. I'm on a couple different muscle relaxants, narcotics, and get trigger point injections and Botox. Nothing seems to give relief. My upper trapezius is like a rock no matter what. My left scalene is now popping out and very tender. It looks like I have a string under my skin from my upper neck to my collar bone. Two years ago, my surgeon thought surgery would make me worse. I wish I knew for sure. If it would make me feel better, I'd jump on it. But with your doctor saying, "If I operate, I'm gonna hurt you." What do you do? I say if he thinks he's going to hurt me, he's probably right. It's just how long do I wait in this pain? He doesn't like me on narcotics, but at this point, I really can't function without them. I could "live" without them, but I'd be in bed 24/7. As it is, I spend about half the day in bed just to get relief from the strain on my neck. It's frustrating and for the first time in my life I'll admit it's depressing, too. I can't imagine someone with their head upside down NOT hurting!

[Irina]

Hi roher01,

This must be so frustrating… I don’t know what to say. I remember reading somewhere that you don’t really have many options with your insurance and suggestion to go to another doctor, won’t help, right? Just sending a virtual hug…

[titaniumed]

Rohrer

Having a Doctor say, “I’m going to hurt you” doesn’t install confidence that’s for sure. But it doesn’t mean that there isn’t a surgeon out there that has done these high curves. You have to find the right surgeon. The surgeon has to be comfortable with the procedure.....

In 1974, Nancy had Dr Moe do a C6-T6 on her cervicothoracic curve......that’s a while ago. They have done these high surgeries before.
http://www.tcspine.com/about-us/dr-j...upid’s-surgery

It would be great if Nancy posted.....

I never thought to myself “how long do I have to wait in pain?”...... (it was many years). I always thought that someday, I would have my day.....scared, yes, but hanging in there all along. Try this, try that, do anything to hang in there. I never knew if and when I would go down to UCSF. Dr Menmuir finally showed up in little old Reno.....a good thing and just in time, cause I was shot and couldn’t wait much longer.

Some out there seem to hook up right away. Many teens get dxd’d and are operated on in a few months. They don’t know what its like to live decades in pain....Adult scoli’s have to be tough I guess.

Never give up hope because a surgeon makes a statement. You move on till you find the right surgeon.
Ed

[Doreen1]

Rohrer

Having a Doctor say, “I’m going to hurt you” doesn’t install confidence that’s for sure. But it doesn’t mean that there isn’t a surgeon out there that has done these high curves. You have to find the right surgeon. The surgeon has to be comfortable with the procedure.....

In 1974, Nancy had Dr Moe do a C6-T6 on her cervicothoracic curve......that’s a while ago. They have done these high surgeries before.
http://www.tcspine.com/about-us/dr-j...upid’s-surgery

It would be great if Nancy posted.....

I never thought to myself “how long do I have to wait in pain?”...... (it was many years). I always thought that someday, I would have my day.....scared, yes, but hanging in there all along. Try this, try that, do anything to hang in there. I never knew if and when I would go down to UCSF. Dr Menmuir finally showed up in little old Reno.....a good thing and just in time, cause I was shot and couldn’t wait much longer.

Some out there seem to hook up right away. Many teens get dxd’d and are operated on in a few months. They don’t know what its like to live decades in pain....Adult scoli’s have to be tough I guess.

Never give up hope because a surgeon makes a statement. You move on till you find the right surgeon.
Ed

Ed,

Didn't you post somewhere recently how someone was able to have scoli surgery while not having insurance?

Warmly,
Doreen

[JenniferG]

It's so worrying that insurance companies can change the course of your lives to the extent of preventing finding the right surgeon to get you out of pain. Since when did insurance companies have so much power? I dread that we're going the same way here.

[titaniumed]

Doreen,

It was Pilar, done by Dr Pashman in LA. She had no insurance.

We shouldn’t be punished by insurance companies. We should be able to pick any surgeon because there might only be one person that is comfortable with a specific procedure, and that surgeon might be a long distance trip. Insurance companies used to only pay 50% if you traveled....that would be $392,000 on my surgeries.

I was close to moving back to California as there were no scoli surgeons here in Reno 10 years ago. When I called and the girl mentioned that we have a new scoli surgeon, I went down for my 1st visit with Dr Menmuir in May 2005. He does have special training not only in scoliosis but also in the cervical area.....I highly recommend him. I dry walled and painted my whole garage in the last week. I would never dream of doing something like this before my surgeries. Painting overhead sitting on a ladder is not easy with scoliosis. Yes, I’ve been getting dirty. (LOL)

People that need special procedures by special surgeons should travel and not be stuck spinning their wheels in pain....It would also be nice if surgeons could travel the US and take care of people here. I know that there are unfortunate people in other countries, but priorities should be here at home......We cannot travel 100 miles to another state, but surgeons travel halfway around the world.

????????

Ed

[rohrer01]

Thanks everyone for the advice. Unfortunately, with my experience it seems that the surgeon's are looking only at curve magnitude and not overall symptoms. Another thing that happens frequently is that I'm not in pain and have good range of motion during my exams (although my ROM is really reduced in my neck now). It's like the knock in your engine that suddenly quits when you take it to the mechanic. Go figure! Also, they always say I have an odd curve, but never take into consideration what the implications of that odd curve are. They just seem to focus on the Cobb angle. I'm stuck as far as who I can see. I hand picked Dr. Tribus when I had state insurance and I liked him because he seemed to understand my pain cycle. I had to fight with my husband's insurance company to continue to see him, only to find out that he is the one they send all of their referrals to anyway. Why the fight then? They made me see the head of neurosurgery. I was hoping to get a thorough second opinion with Dr. Hey, but his receptionist said he prayed about it and cancelled my appointment. He e-mailed me and said there were plenty of good doctors in my area, which is true. I tried to get a second opinion with Twin Cities Spine Center since I'd seen Dr. Perra there before. My insurance nixed that and wouldn't approve a second opinion out of network. That makes NO sense since there are no scoli docs in network. Even if they did approve it, they would go with the one that didn't want to do surgery. They don't want to pay.

Yes, insurance companies have that much power! My GP was frustrated with a particular insurance company that many of his elderly patients have. This company wouldn't pay a few dollars for a life-saving medication for one of his older ladies. She couldn't afford the med because of fixed income. They let her die. Insurance companies are in it for the $$$ and nothing else. They don't make any money on me, for sure. This probably isn't in my favor, but what am I to do? The docs are frustrated because they can't help me. I've tried just about everything. I'm getting written off as a nut-case. My scoli surgeon said I have a drug problem (my only problem is that I DON'T want to take drugs!), I had one psychologist call me a hypochondriac, my pain doc (after talking to the psychologist) called me a surgery seeker for wanting a second opinion, and now my GP said he thought I was getting satisfaction in the fact that no one could help me! What the heck? I'd have to be one sick puppy to put myself through all of the bologna that I've been through. I'm getting to the point where I HATE doctors. Just because they can't treat my condition doesn't make me mentally sick. I'm so frustrated.

The hypochondriac "diagnosis" came from the medical MMPI that I took because my pain doc wanted to do a surgery that I really didn't want. After about 9 months of thinking about it and not feeling that much better, except for the low back injection, I went back out of frustration to reconsider the procedure. I HAD to take the test. It's geared against women. They ask about female pain, which I have because of endometriosis, fibroids, adhesions, and internal varicose veins. They ask about our view toward men (no such questions were asked about male sexual function/pain/or view toward women). They ask about GI issues. I've had my gallbladder removed and have legit problems there, so I had to answer yes. They ask about headaches, which the nature of my scoli causes headaches. They ask about heart symptoms like palpitations, I have a tachy arrythmia so that was a yes. They ask about fainting, I have low blood pressure plus the beta blocker for my heart rythm lowers it even more, so that happens on occasion. So he said that my "hypochondria" was based on my answers to those questions. What?! Then he said, "What surprises me most is that you actually DO have pathology." I've been dealing with this garbage for the last two years. They forced me to see a pain psychologist for my "hypochondria" and if I didn't they could refuse to treat me. I've never posted this here before because, quite frankly it's embarrassing to be accused of those things when there are legitimate medical problems behind every question I answered. Why the heck are there medical questions on a "personality test" anyway?! So my insurance company uses this, I'm sure. Any doctor I see is biased before I ever see them, and even if they're not, I feel like they are and am not at ease. It's a mess. I feel like giving up, but I can't. I have to live and be functional. Sorry for the TMI and the rant. Some of you may think I'm psycho now, too. I guess I just don't care anymore.

So, surgery on a "hypochondriac" wouldn't be successful, because it's all in my head. Well, it's all in my spine, nerves, muscles. I can't help it that I have multi-system problems. How do you use the power of the mind to form gallstones, or endometriosis/fibroids/varicose veins/abdominal adhesions, or a heart condition, or scoliosis, or dystonia? Really? So I'm being prejudged. I don't know if my scoli surgeon has these reports or not. I'm guessing he does. I see the demeanor of docs change when they find out about this stupid MMPI. The test went so far as to say I act like a baby around men! I told my husband that and he just started laughing because it couldn't be farther from the truth! Wow. So the insurance company has a strangle hold on me for that. The stupid pain doc pushed and pushed for me to have a surgery I didn't want that required this test. I finally, out of desperation took it just so I could talk to him about it. Mind you, not so that I could have the surgery. I couldn't see him again until I took the stupid test. Then when I did see him, the first thing out of his mouth is, "Why are you seeking to have surgeries?" He referred to my request for a second opinion and the surgery that he pushed VERY hard for me to have (you can read about that on my other thread). He said, "I'm not going to do this procedure on you, it is surgery!" That made me wonder why he even suggested it in the first place! Then during my epidural, he all but made fun of me for trying accupuncture.

Yes, insurance companies have too much power. They put too much emphasis on statistics without looking at the facts of each individual case. I believe that my level of care has suffered as a result of this test, which is really pathetic. I could retake it and lie about my medical problems because one question was, "Do you lie?". I'd just answer yes to that! Ha! Then I'd be a lying psycho instead of a hypochondriac! Whatever. Sorry guys. I'm ranting on someone elses thread. But, in answer to the question on this thread, I'd rather have surgery in my 40's than my 60's. I can't imagine that my health is going to improve by leaps and bounds over the next 20 years.

[Doodles]

Rohrer--
This is horrible that you have had to go through all of this! I can entirely sympathize with some of the symptoms you have & I have had. Things I had years ago that I never made a connection to the scoliosis. Awful menstral and pre-menopausal problems, swallowing/choking problems (had to have esophagus stretched), headaches, heart arythmia, etc. etc. Quite often someone will mention some problem on here that doesn't seem related but then several will chime in and say, Oh I had that symptom too! For a while I I was searching for answers never considering the scoliosis and was sent to an internist who started asking me all of those "psychological" problem-type questions . I was so angry that the guy just thought I was nuts; no I just wanted to feel better.
I guess I was really lucky with my insurance company but I so feel for you that you are having to go through all of this. Don't worry about the rant--and you are NOT psycho! That ridiculous sexist test makes me furious. I think you nailed some important points here as you often do. I hope you find some answers. Janet

[Irina]

Be sure to let us know what your Cobb’s are when you find out.
Ed

I went to a local doctor yesterday and he measured my thoracolumbar curve at 70 and lumbar at 40 degrees. Back in 2010 I took an x-ray, looked at it, was about to pass out, and didn’t go to any surgeon. Now, I brought this old x-ray to my appointment and the doc. measured it at 67 TL and 34 L. So, it progressed, but not by a lot. Also, 2010 x-ray was taken in the morning, and yesterdays’ at 4 PM. I have a LOT of rotation though and no lordosis. My spine is curved in the opposite direction from where the normal lordosis should have been and he is concerned about that more than about cobb angle.

Even though there is not a lot of progression since 2010, he is advising to have a surgery. He said that since I lost three inches in height since 18 years old and have a big curve, it will keep progressing and getting worse and worse. The doc said that the fact that cobb angle didn't change much since 2010 is not really meaningful. What matters is 3 inches height loss. I asked him: “Can progression stop on its own?” and he said: “No”. I also asked him - what is the worst case scenario if I don’t have a surgery and he said – more deformity, low back pain, sciatica, weakness in legs and problem with gastro organs down the road. He laughed at my question: “Will I be on an oxygen tank or in a wheel chair?” and said: “NO”. The doctor used a term 'collapsing spine' a lot during conversation. He said that he can get 85% correction, which I found to be overly optimistic. Isn’t it usually 50%?

I am not in a lot of pain, but it’s slowly getting worse. I still can do anything I want, but I feel worse than in 2010 because of my rib cage pressing on a pelvis bone. Not painful, but very uncomfortable. I am going to UCSF in July and interested to hear what they would have to say.

Talk to me please, especially people who were not in a lot of pain before the surgery.

[golfnut]

Irina,
I was not in a lot of pain before my surgery as I previously put in a post and have never regretted having surgery and going through the recovery period. I am not one to look back and say that I wish that I would have had the surgery sooner. I tried to ignore my scoliosis and avoided going to a surgeon until I was in my 50's, so I don't know what would have been recommended 20 years ago. Fortunately, Dr. Lenke was able to get a good correction for me at age 60, but it probably would have been easier with a more flexible spine if I had had the surgery sooner. On the other hand, I'm glad that I had the advantage of his techniques that I'm sure have improved in the past 20 years. I know that there are a few things that rods in my back prevent me from doing easily, but all of the advantages far outweigh the disadvantages for me.

[Irina]

Karen,

Did you have a lot of progression or there was no way to tell because you didn't have earlier x-rays?

It looks like my cobb angle has changed only slightly during the last 2 years and I don't have that dramatic 10 degree in a year progression that pushes people towards a surgery quick. I've heared many times that large curves progress 1 - 1.5 degree a year, so if I do a math, I will be in 96 - 106 degrees range at 70 years old, which doesn't sound like fun... Are there any cases out there when large curves stopped progressing by itself or it's a wishful thinking?

[golfnut]

Irina,
I had x-rays of my back when I was in high school and don't even know the degree of curvature. The Dr. at that time gave me special exercises to do and didn't think that it would progress. It certainly did progress, but was somewhat gradual so I started to buy only loose fitting tops and had to have one pant leg hemmed shorter than the other. When I developed a rib hump, I knew that I had to see a spine doctor once again which was about 37 years later than when I saw the first one. X-rays are really shocking and seem to magnify the curve or at least what I would have thought the curve should look like. I know that surgery was the right decision for me. I'm proud that I had the courage to do something before it was too late. Without this forum, I am not sure I could have gone through with it, as I was petrified, extremely active, and enjoying life as it was with little pain. I am now all of the above except for the petrified part and have a much better prognosis, hopefully, because of having had the surgery.
Choosing the best surgeon that you can is instrumental if you decide to have surgery.

[JenniferG]

Thanks everyone for the advice. Unfortunately, with my experience it seems that the surgeon's are looking only at curve magnitude and not overall symptoms. Another thing that happens frequently is that I'm not in pain and have good range of motion during my exams (although my ROM is really reduced in my neck now). It's like the knock in your engine that suddenly quits when you take it to the mechanic. Go figure! Also, they always say I have an odd curve, but never take into consideration what the implications of that odd curve are. They just seem to focus on the Cobb angle. I'm stuck as far as who I can see. I hand picked Dr. Tribus when I had state insurance and I liked him because he seemed to understand my pain cycle. I had to fight with my husband's insurance company to continue to see him, only to find out that he is the one they send all of their referrals to anyway. Why the fight then? They made me see the head of neurosurgery. I was hoping to get a thorough second opinion with Dr. Hey, but his receptionist said he prayed about it and cancelled my appointment. He e-mailed me and said there were plenty of good doctors in my area, which is true. I tried to get a second opinion with Twin Cities Spine Center since I'd seen Dr. Perra there before. My insurance nixed that and wouldn't approve a second opinion out of network. That makes NO sense since there are no scoli docs in network. Even if they did approve it, they would go with the one that didn't want to do surgery. They don't want to pay.

Yes, insurance companies have that much power! My GP was frustrated with a particular insurance company that many of his elderly patients have. This company wouldn't pay a few dollars for a life-saving medication for one of his older ladies. She couldn't afford the med because of fixed income. They let her die. Insurance companies are in it for the $$$ and nothing else. They don't make any money on me, for sure. This probably isn't in my favor, but what am I to do? The docs are frustrated because they can't help me. I've tried just about everything. I'm getting written off as a nut-case. My scoli surgeon said I have a drug problem (my only problem is that I DON'T want to take drugs!), I had one psychologist call me a hypochondriac, my pain doc (after talking to the psychologist) called me a surgery seeker for wanting a second opinion, and now my GP said he thought I was getting satisfaction in the fact that no one could help me! What the heck? I'd have to be one sick puppy to put myself through all of the bologna that I've been through. I'm getting to the point where I HATE doctors. Just because they can't treat my condition doesn't make me mentally sick. I'm so frustrated.

The hypochondriac "diagnosis" came from the medical MMPI that I took because my pain doc wanted to do a surgery that I really didn't want. After about 9 months of thinking about it and not feeling that much better, except for the low back injection, I went back out of frustration to reconsider the procedure. I HAD to take the test. It's geared against women. They ask about female pain, which I have because of endometriosis, fibroids, adhesions, and internal varicose veins. They ask about our view toward men (no such questions were asked about male sexual function/pain/or view toward women). They ask about GI issues. I've had my gallbladder removed and have legit problems there, so I had to answer yes. They ask about headaches, which the nature of my scoli causes headaches. They ask about heart symptoms like palpitations, I have a tachy arrythmia so that was a yes. They ask about fainting, I have low blood pressure plus the beta blocker for my heart rythm lowers it even more, so that happens on occasion. So he said that my "hypochondria" was based on my answers to those questions. What?! Then he said, "What surprises me most is that you actually DO have pathology." I've been dealing with this garbage for the last two years. They forced me to see a pain psychologist for my "hypochondria" and if I didn't they could refuse to treat me. I've never posted this here before because, quite frankly it's embarrassing to be accused of those things when there are legitimate medical problems behind every question I answered. Why the heck are there medical questions on a "personality test" anyway?! So my insurance company uses this, I'm sure. Any doctor I see is biased before I ever see them, and even if they're not, I feel like they are and am not at ease. It's a mess. I feel like giving up, but I can't. I have to live and be functional. Sorry for the TMI and the rant. Some of you may think I'm psycho now, too. I guess I just don't care anymore.

So, surgery on a "hypochondriac" wouldn't be successful, because it's all in my head. Well, it's all in my spine, nerves, muscles. I can't help it that I have multi-system problems. How do you use the power of the mind to form gallstones, or endometriosis/fibroids/varicose veins/abdominal adhesions, or a heart condition, or scoliosis, or dystonia? Really? So I'm being prejudged. I don't know if my scoli surgeon has these reports or not. I'm guessing he does. I see the demeanor of docs change when they find out about this stupid MMPI. The test went so far as to say I act like a baby around men! I told my husband that and he just started laughing because it couldn't be farther from the truth! Wow. So the insurance company has a strangle hold on me for that. The stupid pain doc pushed and pushed for me to have a surgery I didn't want that required this test. I finally, out of desperation took it just so I could talk to him about it. Mind you, not so that I could have the surgery. I couldn't see him again until I took the stupid test. Then when I did see him, the first thing out of his mouth is, "Why are you seeking to have surgeries?" He referred to my request for a second opinion and the surgery that he pushed VERY hard for me to have (you can read about that on my other thread). He said, "I'm not going to do this procedure on you, it is surgery!" That made me wonder why he even suggested it in the first place! Then during my epidural, he all but made fun of me for trying accupuncture.

Yes, insurance companies have too much power. They put too much emphasis on statistics without looking at the facts of each individual case. I believe that my level of care has suffered as a result of this test, which is really pathetic. I could retake it and lie about my medical problems because one question was, "Do you lie?". I'd just answer yes to that! Ha! Then I'd be a lying psycho instead of a hypochondriac! Whatever. Sorry guys. I'm ranting on someone elses thread. But, in answer to the question on this thread, I'd rather have surgery in my 40's than my 60's. I can't imagine that my health is going to improve by leaps and bounds over the next 20 years.

OMG rohrer, I am just horrified at your story. Deeply sorry you have to go through this. Is there any sort of over-seeing board/organisation who can bat on your behalf? Or are the Insurance companies lord and master? You state your position so well, there must be someone who can listen and help, surely. Disgusted is the feeling I had reading about the "test." We are still in the dark ages in some respects.

[JenniferG]

I went to a local doctor yesterday and he measured my thoracolumbar curve at 70 and lumbar at 40 degrees. Back in 2010 I took an x-ray, looked at it, was about to pass out, and didn’t go to any surgeon. Now, I brought this old x-ray to my appointment and the doc. measured it at 67 TL and 34 L. So, it progressed, but not by a lot. Also, 2010 x-ray was taken in the morning, and yesterdays’ at 4 PM. I have a LOT of rotation though and no lordosis. My spine is curved in the opposite direction of where the normal lordosis should have been and he is concerned about that more than about cobb angle.

Even though there is not a lot of progression since 2010, he is advising to have a surgery. He said that since I lost three inches in height since 18 years old and have a big curve, it will keep progressing and getting worse and worse. The doc sais that the fact that cobb angle didn't change much since 2010 is not really meaninful. What matters is 3 inches height loss. I asked him: “Can progression stop on its own?” and he said: “No”. I also asked him - what is the worst case scenario if I don’t have a surgery and he said – more deformity, low back pain, sciatica, weakness in legs and problem with gastro organs down the road. He laughed at my question: “Will I be on an oxygen tank or in a wheel chair?” and said: “NO”. The doctor used a term 'collapsing spine' a lot during conversation. He said that he can get 85% correction, which I found to be overly optimistic. Isn’t it usually 50%?

I am not in a lot of pain, but it’s slowly getting worse. I still can do anything I want, but I feel worse than in 2010 because of my rib cage pressing on a pelvis bone. Not painful, but very uncomfortable. I am going to UCSF in July and interested to hear what they would have to say.

Talk to me please, especially people who were not in a lot of pain before the surgery.

Hi Irina,

I am another who wasn't in severe pain before surgery but am very happy with my surgery. My results are far better than I was expecting. I am not sure of your age, but my curve didn't progress much either, until my 50s. I went from ignoring it to noticing it, to knowing I had to do something to stop it, over 7 years. The reason I'm wondering about your age is, for me, the further into my 50s I got, the faster my curve progressed. You may find the same thing as you get older. I'm assuming you're in your 40s.

85% correction does sound a lot. I was told 60% (I was 57 and reasonably flexible.) In the end, I reduced from 68 degrees to 22 degrees which, though a cosmetic result was secondary to my concern about increasing pain and disability, I was extremely happy with.

[mabeckoff]

I think that each one of us knew when to have surgery. I , also, feel that once you find the correct doctor surgery is not so scary