I have some imaging CD's

[rohrer01]

Thanks, Sharon, for your reply.

I'm happy and relieved that I don't have to worry about having the "big surgery". However, I'm a bit perplexed as to how two very good doctors, both Hey and Tribus, saw at the same time that I had definitely progressed when comparing the same x-rays AND they both measured the curve at the same magnitude. Were they both wrong?

Whatever the case, I am still left with debilitating pain in the scoliotic area. So now I have to figure out how to deal with it and figure out why it's getting worse. I'm tired of popping pills. I'm going to ask again about the intrathecal pump that the one anesthesiologist recommended a few years back. If my spine is stable, that may be an option. I don't know. I was reminded today about just how limited I am from the scoliotic area while I tried to practice the piano. It became so painful I had to stop. Is it just age or something else? Sorry about my musings. I've been in pain for so long that I don't remember what it's like not to hurt. I don't want to subject myself to a surgery just to find out I'm worse off. So it's not that I'm thinking along those lines. I just don't know where to go from here.

I wish there were someone else on here like me. I asked my doctor how many curves like mine he sees. He said that he sees a very high thoracic curve, including both convex right and left, about once every year or two. Left curves are far more rare. So if he's been in practice for say 20 years (I'm guessing), he's seen probably less than 10 people like me. That's not very much experience if you look at it that way. I would like to know how many high convex left patients are in pain and what do they do about it. I'm groping for ideas on how to treat this. Even my other docs are at a loss, really. Right now I'm going to focus on getting my shoulder better. It seems the thing to do for the time being.

I'm glad I'm stable, but SO TIRED of hurting.

Just venting. I've had a rough last three years and am having another rough night.

Thanks for listening.

[JenniferG]

This is the place to vent, even if people are at a loss as to how to help or what advice to offer. Being in pain so long surely earns you the right. Wish I could offer some practical advice.

PS I'm a leftie, too.

[rohrer01]

Thanks, Jennifer.
We should start a thread for "lefties". I'd really be curious to see if there really is any significant difference.

[JenniferG]

It'd be good to know why a few are lefties when most are righties. I may have mentioned before, I won the genetic defect lottery in our family, being the only one of my generation to get Scoliosis and having recently been diagnosed with another genetic condition, hypertrophic cardiomyopathy, but not just HC, but a very rare form called Apical HC. Found virtually nowhere in the world except, and only rarely, in Japan. Now, we've done our family tree going back centuries and there's just about every nationality in our tree except Japanese!

One wonders...

[rohrer01]

I also have a heart defect in the class of ventricular arrhythmias, called inappropriate sinus tachycardia. It's an electrical problem. I have a half-sister with atrial fibrillation, also an electrical problem. But I am the only one in my generation to have scoliosis, also. I have two children who have/had scoli, but not lefties. I don't know about the others in my family, but I'm pretty sure my niece has a right handed curve. HOWEVER, her curve is similar in size to mine or less and is also painful. Hers is a mid-thoracic curve. I wonder if the pain component is hereditary. Both my son (resolved JIS) and daughter (mild AIS) complain of back pain. My eldest son is unaffected.

I've also thought I drew the short stick in my parent's gene pool as well. In addition to the above, I'm the only one of my siblings with asthma and muscle dystonia.

I looked up left convex scoliosis on some other website and found that 40% of us also have a Chiari 1 malformation. I started a thread on it awhile back. It doesn't look like I have that problem, but my brain appears to be low lying on my MRI. It just seems that there are so many differences in us lefties. I'm wondering, too, in particular about high and tight lefties. I think that this is even more rare. I really would like to speak to a doctor that has more knowledge about this specific type of scoliosis. I'm just not quite sure how to go about it.

[JenniferG]

I also have a heart defect in the class of ventricular arrhythmias, called inappropriate sinus tachycardia. It's an electrical problem. I have a half-sister with atrial fibrillation, also an electrical problem. But I am the only one in my generation to have scoliosis, also. I have two children who have/had scoli, but not lefties. I don't know about the others in my family, but I'm pretty sure my niece has a right handed curve. HOWEVER, her curve is similar in size to mine or less and is also painful. Hers is a mid-thoracic curve. I wonder if the pain component is hereditary. Both my son (resolved JIS) and daughter (mild AIS) complain of back pain. My eldest son is unaffected.

I've also thought I drew the short stick in my parent's gene pool as well. In addition to the above, I'm the only one of my siblings with asthma and muscle dystonia.

I looked up left convex scoliosis on some other website and found that 40% of us also have a Chiari 1 malformation. I started a thread on it awhile back. It doesn't look like I have that problem, but my brain appears to be low lying on my MRI. It just seems that there are so many differences in us lefties. I'm wondering, too, in particular about high and tight lefties. I think that this is even more rare. I really would like to speak to a doctor that has more knowledge about this specific type of scoliosis. I'm just not quite sure how to go about it.

At what age did you get your diagnosis of dystonia?

Yes, my heart skipped a beat a few years back when I read the likelihood of Chiari is higher in us lefties, but apparently I don't have that particular malformation. One takes one's luck wherever one can!

In our family, my maternal grandmother had a mild scoliosis but apparently without pain. At least she never mentioned it. She was the only one of 5 sisters to have it, she had four daughters including my mother, none of whom had it. I'm one of three daughters and a son, the others don't have scoliosis. And between us three sisters, we have 6 female children, none of whom have it. I now have three granddaughters and I'm crossing my fingers.

As far as I know, nobody in my family from great grandparents down, died of this AHC that I have, so who knows where it came from. I'd love to know more.

[rohrer01]

At what age did you get your diagnosis of dystonia?

It was last year, so I was 43. But I've probably had it for over 30 years, since my pain and other symptoms have consistently been the same for that long. Only the older I get, the worse the pain gets.

I get the severe headaches so I was really concerned about the Chiari 1 malformation. I still wonder how low lying the brain actually has to be to bring on some of the symptoms of Chiari. I know headache is only one symptom and as far as I know that is the only symptom I have. On the flip side, migraines run in my family. My mother suffers from them, my maternal uncle, my brother (now deceased), me and my two sons. It's all on my mom's side of the family. I have no idea about whether my grandma or grandpa had them. I suspect it was my grandmother. She was always sick in bed from pain. She had polio as a child and it is a known fact (now, not back then) that it can come back on a person later in life and cause a pain syndrome. She could barely walk and took morphine injections. She died at 59. So there's no way for me to know if she had the migraines for sure.

[JenniferG]

I'm aghast that your dystonia pain is worsening as you get older. I know you will have done your research as to what treatments are available. Is there any hope for a treatment/cure? Is there any research going on?

[rohrer01]

I'm aghast that your dystonia pain is worsening as you get older. I know you will have done your research as to what treatments are available. Is there any hope for a treatment/cure? Is there any research going on?

My scoliosis pain is also getting worse. If I get hugged too tight or even bring my shoulder blades back too far, the pressure on my spine really hurts badly. Also, jumping on a trampoline is OUT. I tried it several years back with my niece and the compression on my spine was a sickening feeling.

As for the dystonia thing, this is all new to me. All of the stuff that I've looked up primarily applies to people disfigured with the disease or people with chronic tics, neither of which applies to me. Some of the fibromyalgia stuff seems related in that there are trigger points, tiny areas of muscle spasm. However, when I asked my doctor about it, he said that people with fibromyalgia have very quiet muscles. He also said the only two groups of people with "noisy" muscles are stroke victims and those with muscle dystonia. He said I definitely did not have fibromyalgia because of the noisy muscles. (noisy on an emg study)

So I have a lot more research to do. But, I still think it all boils down to being related to the scoliosis. It may be the answer as to the "why" some people have pain and some people don't AND that degree of curvature is NOT related to severity of pain in scoliosis. That's my hypothesis. I just wish there were a way to test it out. =)

[JenniferG]

My scoliosis pain is also getting worse. If I get hugged too tight or even bring my shoulder blades back too far, the pressure on my spine really hurts badly. Also, jumping on a trampoline is OUT. I tried it several years back with my niece and the compression on my spine was a sickening feeling.

As for the dystonia thing, this is all new to me. All of the stuff that I've looked up primarily applies to people disfigured with the disease or people with chronic tics, neither of which applies to me. Some of the fibromyalgia stuff seems related in that there are trigger points, tiny areas of muscle spasm. However, when I asked my doctor about it, he said that people with fibromyalgia have very quiet muscles. He also said the only two groups of people with "noisy" muscles are stroke victims and those with muscle dystonia. He said I definitely did not have fibromyalgia because of the noisy muscles. (noisy on an emg study)

So I have a lot more research to do. But, I still think it all boils down to being related to the scoliosis. It may be the answer as to the "why" some people have pain and some people don't AND that degree of curvature is NOT related to severity of pain in scoliosis. That's my hypothesis. I just wish there were a way to test it out. =)

I agree that degree of curvature isn't related to severity of pain in scoliosis. We see that here quite a lot, on this forum. It's always surprising to read about examples of large, pain-free curves.

Good luck with your research. I hope you have access to specialists who can advise/treat you along the way especially one who can ease your pain effectively - somehow.

[Pooka1]

So I have a lot more research to do. But, I still think it all boils down to being related to the scoliosis. It may be the answer as to the "why" some people have pain and some people don't AND that degree of curvature is NOT related to severity of pain in scoliosis. That's my hypothesis. I just wish there were a way to test it out. =)

That's a good hypothesis! That could very well be correct.

I think the fact of your pain since you were a child argues for something out of the ordinary. You probably do not have JIS. Maybe something with your muscles caused the scoliosis.

I just hope you get some relief.

[rohrer01]

Good luck with your research. I hope you have access to specialists who can advise/treat you along the way especially one who can ease your pain effectively - somehow.

Thanks, Jennifer. I do have "some" help with pain management, but it's not sufficient for me. I would like to be off narcotics and that just isn't possible and is very frustrating. I don't think many people understand this disorder as it relates to scoliosis, if any. Everyone tells me I'm a unique case and they don't see many people like me. As for my surgeon, as far as I'm concerned he has zero experience with people like me. Because of this he has no idea what my surgical outcome would be and treats me like all other cases of typical AIS. Therefore leaving me with no surgical option, which is okay. I don't want someone without experience operating on me and messing things up worse.

[rohrer01]

That's a good hypothesis! That could very well be correct.

I think the fact of your pain since you were a child argues for something out of the ordinary. You probably do not have JIS. Maybe something with your muscles caused the scoliosis.

I just hope you get some relief.

Thank you, Sharon. Being that I'm the low man on the totum pole as far as biologists go, I haven't a clue how to go about even finding the right people to look into this. I think you are probably right about a muscular cause for the scoliosis. As far as pain relief for me, it's a whatever. I try to survive and have good days and bad days (mostly bad days lately).

Do you remember that guy, Davis, who had a curve in the 20* range? He found a "surgeon" to perform a scoli surgery on him. He just kind of disappeared off of the forum and no one ever heard about his outcome after surgery. I would be curious to know how things went for him. I suspect he may have a similar problem as me. I find it hard to believe that any competent doctor would operate on such a small curve, but maybe the guy was truely in a ton of pain and that's all the doc could think of as a solution. Maybe this doc was on to something. He was applying for membership in the SRS if I remember correctly.

[rohrer01]

I have my shoulder MRI results. I have a torn and retracted ligament and a tear in the sac around the joint. Oh, yeah! NOT! I just found out that a friend of mine went to the same chiro as I did and that is how her shoulder got messed up, too. She also needed surgery. How many more people has this chiro done this to? They gave me a steroid injection in the shoulder to help ease some of the inflammation and pain then scheduled me to see a shoulder surgeon ASAP. I was instructed to do NOTHING that causes any discomfort or pain to my shoulder. I was trying to do some gentle strengthening, even though it was painful. I was told to stop. My scoliosis is making matters more difficult since my right scapula overlaps my spine during certain movements. I'll have to wait and see if it will be a significant factor in my recovery when I see the surgeon. I don't think I can avoid surgery if the ligament is torn completely off. Ugh...=(

Oh, I was told I had very floppy joints, too. That's not the first time I've been told that. The floppy joints may be a factor in recovery. She said it wasn't normal to have joints like mine. It leads me to believe I have a connective tissue disorder. I could be wrong, but I don't think I am.

[Pooka1]

Wow very sorry to hear that! My husband tore his rotator cuff and that was a huge deal to fix that and do the rehab. At least you have a diagnosis and they can fix this.