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Scoliosis

Jwarrior77

Senior Member
Messages
119
Does anyone have Scoliosis? I believe it's contributing to this illness. Im also closely looking into neck instability as I have many symptoms of it.
 

lenora

Senior Member
Messages
4,913
I've had severe scoliosis since the age of 4. Meaning that I couldn't hold myself up & it was treated with the old-fashioned heavy casts & brances. I also had to do a lot of walking in those days and, believe it or not, I credit it being able to the handle my diseases today. I'm not the type of the women or girl who wanted pity, so I'll tell you that those years saw me in and out of orphanages probably 7times. Not long stays, but a few months here and there.

Since rod surgery was available for widespread use, my Dr. here told me that whatever they did betweent the two places was good for me and made it hard to detect my severe kyphosis. I have kyphosis, lordosis and one other (I can't remember). At about age 40 I was preppping for a ski trip with my husband and daughters and sneezed with my l. arm in the air. It hurt so much that I burst out crying. And it was off and on that way the entire trip. Upon my return home, I saw my gynecologist who found that I had a pituitary tumor, an orthopedic man (b/c I thought it was all tied up with my ancient scoliosis), and finally, I was referred to a neurlogist who found the underlying condition...Syringomyelia, with another diagnosis of Arnold-Chiari Malformation.

Now if you have SM alone, the chances are good that you may have it as a result of an accident of some sort or another, but if it's accompanied my ACM chances are good that you were born with both conditions. At that time surgery was still in its infancy and few places were helping patients. Besides, most of the shunts inserted didn't hold for long and finally, Arnold-Chair Malformation Repair Surgery came along...it attacked both illnesses from the brainstem and was a blessing. A lot of the surgeons who recognized it came from poverty stricken countries as it's considered one of the neural tube defects, meaning a lack of B vitamins during pregnancy. The shunt surgery was horrendous (back in the '70's) and it blocked within 3 mos. The ACM Repair Surgery was much, much easier, held well and actually did take care of both problems. I believe that it's holding until this very day.

Still, I didn't recover and, if anything, things just continued to slide downhill. My neurologist went through this bag looking for everything and finally, ME was diagnosed. We had come to that conclusion ourselves
 

lenora

Senior Member
Messages
4,913
Hi Deb....I do hope your spina bifida isn't the very worst kind. Yes, scoliosis doesn't get much play under the
headliners, but does cause a lot of trouble. Personally, I think it's an offshoot of EDS, just not as bad.

I'm thinking I may have damaged my tethered cord and I'll be starting myofascial therapy for it next week. If that doesn't help, then I'll go ahead an have another X-Ray and MRI if it's determined as necessary. Everything was OK, but I had my 11th or so fall this year and hit a piano stool on my way down. Then I fell backwards and the pain is a constant nuisance. So, I obviously have to move in some direction...I've given up treating it on my own. I'm not getting anywhere.

Do be careful about those falls. Especially if they've put you on steroids and then stopped. At first you feel like Superwoman but then you lose all energy whatsoever, one of the main reasons for the falls. Tell me a bit more about yourself. I hope you're doing as well as can be expected and that you pain is under good control.
Yours, Lenora.
 
Messages
36
Hi Lenora. Fortunately my spina bifida is mild but I used to have quite a lot of problems walking especially when I was in pain. A few years ago I moved to the countryside and I had to start walking everywhere because there a no buses and I don't drive but since I started to walk more I have found that the pain has eased a lot.
 

Rufous McKinney

Senior Member
Messages
13,249
Yes I have some mild version of scoliosus...I believe the Lordosis came first (noticeable at 3 years of age).

So does my adult daughter- picked up that during an elementary school assessment- we thought she had perfect posture- so what happened? Hers is much milder.

Suspect alot of spinal and related neck issues here.
 

lenora

Senior Member
Messages
4,913
Hi Lenora. Fortunately my spina bifida is mild but I used to
have quite a lot of problems walking especially when I was in pain. A few years ago I moved to the countryside and I had to start walking everywhere because there a no buses and I don't drive but since I started to walk more I have found that the pain has eased a lot.

Hi@Deb74.....How fortunate that walking in the countryside helped your spina bifida. Did you wear special shoes, or just walked in whatever you had on at the moment? SM is a minor form of spina bifida, but is much higher up and not as dangerous. It's probably more akin to hydrocephalus than anything else. The fluid can back up and enter the brain, but these days that's very unlikely. Especially if you have the Chiari Repair Surgery...both illnesses (diseases?) should be stopped in their tracks. Or, in another scenario, a shunt is also implanted. The reason I asked about the shoes is that we had to wear some ultra-attractive looking Oxford shoes. You can imagine how much I looked forward to their purchase each fall.

Yes there are so many reasons for having ME type pain....just not ME/CFS/FM but a whole host of other neurological difficulties. Lately the emphasis has been placed on CCI, but that's not necessarily the only reason for having this similar (if not same) type of pain. Then we have ME as a separate diagnosis on its own..mine was caused as a result of most probably virus(es?) and then the separate illnesses themselves. They caused a lot of wear and tear in the body. The immediate cause was nerve damage which has never lessened from that day to this. Fortunately there's now 4% Lidocaine & special compound creams that your doctor can order for you, and also things like gabapentin (I now take it as Lyrica), and that was the first breakthrough. Well, hopefully you won't need extra help and I'm very glad that you've been helped by traipsing around the countryside. Yours, Lenora.
 
Messages
36
Hi Lenora. No I don't wear special shoes I wear memory foam trainers. I also have hydrocephalus which has been left untreated which throws up challenges but I just get on with things