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Hello everyone! I apparently registered here three months ago (at the time that I made an appointment with a spine specialist) and thought I posted something then, but apparently not.
Anyway--I finally saw the specialist last week (yeah, he's booked 3 months ahead!), got my first X-ray and evaluation since I stopped growing at age 13 or 14 (I'm now 49).
My scoliosis was found by a school nurse when I was in fourth grade, but I have no idea what the curvature was in those years. I did exercises for a few years until I was told I'd stopped growing, and then I ignored the scoliosis until three months ago.
So in April I had a bone-density test to see if I qualified for a study (I didn't, as my hipbone density was great). They said they could not evaluate the lumbar-spine density because of the scoliosis, and they showed me a picture of my horrible twisty-looking spine!! I also found out at that screening visit that I am only 5' 5", and I was 5' 6 3/4" when I was a teenager. Yikes!
It distressed me a bit to get confirmation that I'd lost so much height, but didn't really surprise me, because for years I've been feeling like the Incredible Shrinking Woman. When I sit in a restaurant booth, I feel like a little kid. At home, I sit on three fat cushions at the dining-room table. At work, I lower the adjustable table as low as it will go and raise the adjustable chair as high as it will go.
I began to wonder if I should be doing exercises or something in case the scoliosis was contributing to the height loss and other problems. Also I wasn't sure whether my right shoulder is getting even lower than it always has been--I'm always tugging on the left shoulder of my shirts and nightgowns, but maybe only because I've been buying things with more open necklines?
So I decided to see a spine specialist (he does adult and pediatric scoliosis). And I hoped he would also be able to tell me whether some of the bizarre and varied neurological symptoms I've had over the past 7 years are related to my scoliosis.
The most puzzling of these symptoms is Lhermitte's, an electric buzzing or "pulling" sensation (and most recently VIBRATING) that occurs somewhere in my lower body or hands when I bend my head down. Lhermitte's is caused by some kind of lesion (damage) to the cervical spinal cord. It's often associated with MS, and I've had a lot of other weird symptoms, but I've seen two neurologists in the past and they ended up essentially saying I don't have MS. (And essentially that I'm a hypochondriac, even though it was one of those neurologists who originally told me I had it!)
I had a neck MRI in 2002 (in addition to four brain MRIs over four years) that showed no cause for the Lhermitte's.
I've also had a BUNCH of other weird symptoms, such as a constant low-level buzzing/vibrating in my lower left leg, paresthesias such as cold spots and itchy spots mostly in my legs and feet, crawling and stabbing sensations, etc. I have had a veritable zoo of invisible spiders, ants, bees, and tap-dancing centipedes molest me at various times and in various places.
My right hip went numb after my second child was born in 1985 and it's been numb on and off since then. In the past few years I've had patches of complete numbness on my right knee and lower right back that last weeks, and my lower right back is ITCHY at the same time that it's numb, very bizarre feeling!
Not to mention chronic dizziness (it's been my worst problem, at least until recently), slowed walking (the muscles at the very top of my legs, in the front and side, get very strained after a couple of blocks and I literally can't walk as fast as I used to), summer of 2001 my "reach" was a little short and I could only get the refrigerator door handle, the soap pump, the back of a chair, etc. on the second try and then only if I was looking at the object and paying attention to where my hand was going. Also if I tried to lick my finger, like when flipping through papers, I would miss the first time.
I also lost most of my hearing in my left ear when I sneezed hard in 1999 (when many of these symptoms started), and got dizzier too. I also have painless electric shocks and other "electric" or "insect" sensations in my face, both sides, starting with some excruciating, split-second, lightning-bolt pains under my ears a few weeks before the hearing loss. I think these are trigeminal nerve symptoms.
And one of the weirdest things is the "double shocks": I often get a small electric shock in the top or side of one foot and, exactly simultaneously, the same shock somewhere in my groin or ribcage on the same side. I can only think that the spine must somehow be involved in this "short circuit." The very weirdest "connection" is that sometimes when I touch the top of my left big toe, I get a simultaneous electric shock in my left elbow and my left hand between the thumb and index finger.
I didn't tell the spine doctor that whole story (there's other stuff too), because I've learned that if you "throw too much at doctors" (as one of the neurologists warned me), they get "overwhelmed" and just consider you a hypochondriac.
I did tell him I hoped he could say whether the scoliosis might be the cause of the Lhermitte's and the "strain" when walking (walking briskly on level ground feels like walking uphill). He did not think it was causing the Lhermitte's, since nothing showed up on my 2002 MRI (by which time the Lhermitte's had been going on for two years), and he said (if I remember correctly) that even when scoliosis does cause something like that, it's going to be in one place and not appearing on and off in many different locations, as my Lhermitte's does.
He ordered a new cervical MRI and a lumbar MRI, which I'd never had. I was surprised to find out it was lumbar scoliosis--I always assumed it was thoracic, I suppose because I read in one of the neurologist's reports that I had "thoracic scoliosis." Also because my hips are not at all uneven--only my shoulders. But, as I found out last week, lumbar scoliosis can also cause uneven shoulders!
The spine specialist was supposed to call me with the MRI results and also the vitamin D test which he ordered to make sure I wasn't going to get osteoporosis. He really stressed the importance of NOT getting osteoporosis (especially as I'm recently postmenopausal), since it could make my curvature worse. Right now my hipbone density is 113 percent of normal for my age, which is very good.
I haven't heard from him (the MRI was last Tuesday) so probably won't--I assume nothing abnormal was found, but I'm going to call next week and ask the receptionist to tell me anyway.
He said I should come back in a year for a follow-up X-ray to make sure my curve isn't progressing, and if it's the same, then another X-ray in three years. Sounds reasonable. I'm not sure I remember correctly, but I THINK he said that if a curve is less than 40 degrees in adulthood, it's quite unlikely to progress. I don't even think it's really necessary to have another X-ray unless something obviously changes, as I'm very lucky and don't have any back pain. And if he doesn't find out the cause of the leg symptoms and the Lhermitte's this time, he's not going to in the future either.
Sorry to have written such a long post--I'm just trying to get a little clarity about some of these issues--I know I'm not going to get a diagnosis of all my symptoms, but I did want to see what light the spine specialist could throw on the Lhermitte's, the height loss, the leg muscles and the numbness. I did get some answers and am glad I went, but of course much cannot be answered, certainly not definitively.
Does anyone know whether a 35-degree curve is considered mild, moderate, or what?
Has anyone had a curve progress during adulthood? If so, do you know the reason(s)?
Anyone else have any of these neurological symptoms that sound familiar????
Anyone else have problems with their vestibular system??? Meaning inner ear--balance or dizziness problems? I was surprised to find out, when I went looking for more info on scoliosis, that some consider idiopathic scoliosis to originate with a vestibular problem, either due to inner ear dysfunction or central nervous system dysfunction.
I am reasonably active, work part-time as a clerk in a VERY busy library, part-time at home on computer, walk in my neighborhood for exercise.
Thanks for any comments, info, etc.
Nancy T.
Anyway--I finally saw the specialist last week (yeah, he's booked 3 months ahead!), got my first X-ray and evaluation since I stopped growing at age 13 or 14 (I'm now 49).
My scoliosis was found by a school nurse when I was in fourth grade, but I have no idea what the curvature was in those years. I did exercises for a few years until I was told I'd stopped growing, and then I ignored the scoliosis until three months ago.
So in April I had a bone-density test to see if I qualified for a study (I didn't, as my hipbone density was great). They said they could not evaluate the lumbar-spine density because of the scoliosis, and they showed me a picture of my horrible twisty-looking spine!! I also found out at that screening visit that I am only 5' 5", and I was 5' 6 3/4" when I was a teenager. Yikes!
It distressed me a bit to get confirmation that I'd lost so much height, but didn't really surprise me, because for years I've been feeling like the Incredible Shrinking Woman. When I sit in a restaurant booth, I feel like a little kid. At home, I sit on three fat cushions at the dining-room table. At work, I lower the adjustable table as low as it will go and raise the adjustable chair as high as it will go.
I began to wonder if I should be doing exercises or something in case the scoliosis was contributing to the height loss and other problems. Also I wasn't sure whether my right shoulder is getting even lower than it always has been--I'm always tugging on the left shoulder of my shirts and nightgowns, but maybe only because I've been buying things with more open necklines?
So I decided to see a spine specialist (he does adult and pediatric scoliosis). And I hoped he would also be able to tell me whether some of the bizarre and varied neurological symptoms I've had over the past 7 years are related to my scoliosis.
The most puzzling of these symptoms is Lhermitte's, an electric buzzing or "pulling" sensation (and most recently VIBRATING) that occurs somewhere in my lower body or hands when I bend my head down. Lhermitte's is caused by some kind of lesion (damage) to the cervical spinal cord. It's often associated with MS, and I've had a lot of other weird symptoms, but I've seen two neurologists in the past and they ended up essentially saying I don't have MS. (And essentially that I'm a hypochondriac, even though it was one of those neurologists who originally told me I had it!)
I had a neck MRI in 2002 (in addition to four brain MRIs over four years) that showed no cause for the Lhermitte's.
I've also had a BUNCH of other weird symptoms, such as a constant low-level buzzing/vibrating in my lower left leg, paresthesias such as cold spots and itchy spots mostly in my legs and feet, crawling and stabbing sensations, etc. I have had a veritable zoo of invisible spiders, ants, bees, and tap-dancing centipedes molest me at various times and in various places.
My right hip went numb after my second child was born in 1985 and it's been numb on and off since then. In the past few years I've had patches of complete numbness on my right knee and lower right back that last weeks, and my lower right back is ITCHY at the same time that it's numb, very bizarre feeling!
Not to mention chronic dizziness (it's been my worst problem, at least until recently), slowed walking (the muscles at the very top of my legs, in the front and side, get very strained after a couple of blocks and I literally can't walk as fast as I used to), summer of 2001 my "reach" was a little short and I could only get the refrigerator door handle, the soap pump, the back of a chair, etc. on the second try and then only if I was looking at the object and paying attention to where my hand was going. Also if I tried to lick my finger, like when flipping through papers, I would miss the first time.
I also lost most of my hearing in my left ear when I sneezed hard in 1999 (when many of these symptoms started), and got dizzier too. I also have painless electric shocks and other "electric" or "insect" sensations in my face, both sides, starting with some excruciating, split-second, lightning-bolt pains under my ears a few weeks before the hearing loss. I think these are trigeminal nerve symptoms.
And one of the weirdest things is the "double shocks": I often get a small electric shock in the top or side of one foot and, exactly simultaneously, the same shock somewhere in my groin or ribcage on the same side. I can only think that the spine must somehow be involved in this "short circuit." The very weirdest "connection" is that sometimes when I touch the top of my left big toe, I get a simultaneous electric shock in my left elbow and my left hand between the thumb and index finger.
I didn't tell the spine doctor that whole story (there's other stuff too), because I've learned that if you "throw too much at doctors" (as one of the neurologists warned me), they get "overwhelmed" and just consider you a hypochondriac.
I did tell him I hoped he could say whether the scoliosis might be the cause of the Lhermitte's and the "strain" when walking (walking briskly on level ground feels like walking uphill). He did not think it was causing the Lhermitte's, since nothing showed up on my 2002 MRI (by which time the Lhermitte's had been going on for two years), and he said (if I remember correctly) that even when scoliosis does cause something like that, it's going to be in one place and not appearing on and off in many different locations, as my Lhermitte's does.
He ordered a new cervical MRI and a lumbar MRI, which I'd never had. I was surprised to find out it was lumbar scoliosis--I always assumed it was thoracic, I suppose because I read in one of the neurologist's reports that I had "thoracic scoliosis." Also because my hips are not at all uneven--only my shoulders. But, as I found out last week, lumbar scoliosis can also cause uneven shoulders!
The spine specialist was supposed to call me with the MRI results and also the vitamin D test which he ordered to make sure I wasn't going to get osteoporosis. He really stressed the importance of NOT getting osteoporosis (especially as I'm recently postmenopausal), since it could make my curvature worse. Right now my hipbone density is 113 percent of normal for my age, which is very good.
I haven't heard from him (the MRI was last Tuesday) so probably won't--I assume nothing abnormal was found, but I'm going to call next week and ask the receptionist to tell me anyway.
He said I should come back in a year for a follow-up X-ray to make sure my curve isn't progressing, and if it's the same, then another X-ray in three years. Sounds reasonable. I'm not sure I remember correctly, but I THINK he said that if a curve is less than 40 degrees in adulthood, it's quite unlikely to progress. I don't even think it's really necessary to have another X-ray unless something obviously changes, as I'm very lucky and don't have any back pain. And if he doesn't find out the cause of the leg symptoms and the Lhermitte's this time, he's not going to in the future either.
Sorry to have written such a long post--I'm just trying to get a little clarity about some of these issues--I know I'm not going to get a diagnosis of all my symptoms, but I did want to see what light the spine specialist could throw on the Lhermitte's, the height loss, the leg muscles and the numbness. I did get some answers and am glad I went, but of course much cannot be answered, certainly not definitively.
Does anyone know whether a 35-degree curve is considered mild, moderate, or what?
Has anyone had a curve progress during adulthood? If so, do you know the reason(s)?
Anyone else have any of these neurological symptoms that sound familiar????
Anyone else have problems with their vestibular system??? Meaning inner ear--balance or dizziness problems? I was surprised to find out, when I went looking for more info on scoliosis, that some consider idiopathic scoliosis to originate with a vestibular problem, either due to inner ear dysfunction or central nervous system dysfunction.
I am reasonably active, work part-time as a clerk in a VERY busy library, part-time at home on computer, walk in my neighborhood for exercise.
Thanks for any comments, info, etc.
Nancy T.
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