How can I help my sister with her debilitating scoliosis?
November 24, 2009 7:07 AM   Subscribe

Why has my sister's scoliosis suddenly resulted in partial paralysis, and what treatments are available to help her?

My younger sister is 15, and was diagnosed with scoliosis when she was around 10 years old. Since then, she has grown tremendously and her scoliosis has gotten much worse. About a month ago, she had a case of the swine flu that weakened her muscles and caused a collapse at school. She was pulled out, and has been at home since, but her walking and mobility are seriously impaired. While she has gone out a few times, she will often wake up and not be able to move her feet or legs. At these times her feet are stuck in a position that looks like a ballerina straining to be on point. She complains of back, neck and shoulder pain.
She just began seeing an osteopath, after going to several specialists who were unable to diagnose her condition. The osteopath is confident it's a muscular condition that is caused by a twisting of her spine, and is treating her with muscular therapy.
In the meantime, she can't do much of anything and recently had a nasty fall while trying to use the bathroom. This means that she has to be babysat almost all the time, and meanwhile we don't really know if she'll get better.
I realize that AskMeFi is not a medical community, but I'm hoping that someone will be able to share experience or advice for dealing with this type of situation. She lives in the Gainesville, FL area.
posted by ajarbaday to Health & Fitness (19 answers total)
Sounds like she needs to see a neurologist to find out exactly what's going on.
posted by watercarrier at 7:24 AM on November 24, 2009

!!!!! I certainly think that this is more than just a muscle problem.

You don't say which specialists she has seen. She definitely should see her orthopedist and a neurologist. What treatment has she had for her scoloisis?

Another thought is that she may have something more systemic going on, like Guillian Barre syndrome.
posted by SLC Mom at 7:41 AM on November 24, 2009

I had severe scoliosis starting from 12 years of age until I had a spinal fusion at age 17, just as soon as I'd stopped growing. I had severe pain while walking for any kind of distance, to the point where I couldn't carry a purse and go to the store without discomfort. I was always twisted or off balance and that made me even clumsier than the average gawky teenager.

I never experienced any severe neurological symptoms, but it was hard on my joints and muscles. Luckily, my parents convinced me to do high school sports by telling me that it would look good on college applications. I chose cross country running because the softer dirt surfaces were easy on my bones and I could run just as fast or slow as I wanted. I was still in pain while I ran, but I managed it with only the occasional advil. I wore an athletic brace while running and after practice when I took it off I could feel my spine collapse and my height dip down an inch. Still, I credit the extra muscle tone with keeping me from developing more serious symptoms and helping me bounce back from spinal surgery.

I was really upset about getting the spinal fusion, but I was warned very seriously about neurological damage and organ compression, including potential incontinence. The surgery was really hard on me. I lost about 15 pounds that I really couldn't afford to lose, nursed broken ribs from where cartilage was removed, suffered through a staph infection and missed a month of school.

Yet, it was all worth it. I can walk and run without pain, I can sit in a chair comfortably for longer than a few minutes, I can carry groceries half a mile without batting an eye. Plus, I'm three inches taller than I was the morning of my surgery and I have the confident posture of a ballet dancer. It's been more than ten years and my life is much better than I could have imagined.
posted by Alison at 8:02 AM on November 24, 2009 [2 favorites]

She needs to see another doctor. This does not sound muscle related at all. When you can't feel or move lower limbs it is almost always due to some issue with the nerves and scoliosis can cause impingements. This is actually sort of an emergency.
posted by caddis at 8:09 AM on November 24, 2009

I think that I incorrectly phrased the degree of her paralysis. She can push down on my hand with her foot when I ask her to, but she has severe difficulty standing up properly or manuevering herself. At times it seems like her legs are just not working, but might be that they are simply unable to bear her weight.
posted by ajarbaday at 8:20 AM on November 24, 2009

Sounds like there's decompression of the lower spine going on and a CT and MRI will determine what kind of treatment are warranted. Usually in these cases it's a fusion, implant or discectomy. An orthopedic surgeon together neurologist will be needed to be seen, and then they will decide how to proceed based on their findings from the imagings.
posted by watercarrier at 8:29 AM on November 24, 2009

It sounds like she definitely needs to see someone who specializes in the treatment of scoliosis; fortunately you are in the same town as the University of Florida's medical school, so you should have access to some top specialists. Anyone with a known spinal disorder who develops a sudden increase in symptoms need to be looked at pretty closely. In the hospital where I work we have a number of neurologists, orthopedic surgeons, and neurosurgeons who treat scoliosis. You mention she has been seen by a osteopath (D.O.) but don't mention whether the doctor is someone who specializes in this sort of thing. If not, a referral to someone who does seem appropriate.
posted by TedW at 8:58 AM on November 24, 2009 [1 favorite]

Serious neurological symptoms are present. That means that this problem is way beyond the scope of just osteopathy. She needs to go see a orthopedic surgeon who has experience treating scoliosis. The surgeon will get the proper specialists involved so that they can evaluate her condition. She needs to inform the surgeon about the illness, the fall, and any other events that happened before the symptoms appeared. She needs to clearly explain all her symptoms. Any type of neurological problem is a really big deal.

Are there any cultural issues going on here that may lead to miscommunication between doctors and her parents? I'm not blaming her parents or anything but they need to be clear and persistent when communicating their concerns and be open to solutions that may require surgery.
posted by Procloeon at 9:22 AM on November 24, 2009 [1 favorite]

Long shot here, but hey, it happened to me: I've been diagnosed with scoliosis and a herniated cervical disc, resulting in nerve entrapment in my left arm, to the point where I often couldn't lift it or grasp anything with that hand. I had gotten to the point where I thought I'd never really have feeling in that hand again.

Then in the course of routine lab work, my new primary care doc discovered I had a pretty severe potassium deficiency and put me on supplements.

It's only been one month, but I'm nearly back to normal - no pain, no nerve issues.

So, this is my longwinded way of saying that low potassium can cause a sort of paralysis - google hypokalemia for more. If your sister hasn't had her potassium checked, especially by a doc who uses the newer criteria of 3.5 and less as low, I'd recommend you rule that out first.
posted by chez shoes at 9:30 AM on November 24, 2009

What kind of specialists has your sister seen? In addition to neurologists and surgeons, has she had a psych consult? There is a possibility that stress and other factors could have led to a conversion disorder, which means real pain and suffering, not faking, but without a standard physical cause.

Her partial paralysis and weakness may be a complication of scoliosis, the flu, or something else. That osteopath is not qualified to diagnose and treat someone showing such distressing symptoms.

I'm teaching right now and can't add a longer answer for several hours, but if your sister has had no standard medical treatment for scoliosis -- brace, electrical stimulation or surgery -- she is being very ill-served. I know the American medical system can be expensive and difficult to navigate (and I hate to think of how my life would be different if I hadn't had fusion at age 15 to correct a 60 degree curvature), but keep in mind that organizations such as the Shriners often help kids get the surgery they need if they don't have insurance.
posted by maudlin at 10:04 AM on November 24, 2009 [1 favorite]

It sounds to me (NAD) like an infectious disease side effect (may be unusual effect of H1N1 or that infection may have masked a different one or made her more susceptible to a different one).

I'd recommend that she see an internal medicine doc (who is a good person to help pick out which specialists she should see -- neurologist, orthopod, nutritionist -- and to interpret and coordinate their findings). There are so many possibilities here that she needs someone with a broad base of medical knowledge to guide her through the process of seeing specialists and formulating a treatment plan.
posted by Capri at 10:27 AM on November 24, 2009 [1 favorite]

I'm not sure what kind of insurance she has, but she must get to a doctor quickly to evaluate for Guillan Barre or spinal cord compression. If they don't bring it up, she needs to bring it up to them. I'd recommend a Neurologist or Neurosurgeon/Orthopedist specializing in spine. Failing this, I think paralysis constitutes a medical emergency where and ER visit may be needed.
posted by ruwan at 10:40 AM on November 24, 2009

I was going to recommend ER, too, based on the symptoms, but the OP has said she has seen several specialists. Have her symptoms gotten worse since then? Weakness and partial paralysis are distressing and it's hard to see why several specialists can't or won't do anything further.
posted by maudlin at 11:27 AM on November 24, 2009


Thanks for everyone's quick response. I used your collective guidance to have a conversation with my mother, who is my little sister's primary caregiver. She wants to wait on a more complete diagnosis from the osteopath that they're seeing before doing anything. The osteopath is also a general practitioner, and any specialist she sees must be under the recommendation of a GP, according to the regulations of her (state) insurance.
She's been to a geneticist, who apparently ruled out neurological disorders at the time (this was about a year ago). She isn't qualified to get a brace, either. Apparently her spine is twisted, rather than curved. From what I gather, neither surgery nor electrical stimulation has been suggested by the various specialists that she's seen. However, her situation has definitely gotten quite a bit worse since then.
As a caveat, the reason why she's not seeing those specialists still is because her original coverage ran out and they had to switch to state, which doesn't cover those visits.
I've made a list of the questions brought up in this thread to take to her next visit to the osteopath. He saw her a few days ago, when her symptoms were about as bad as they are currently. Their first plan is to get as much testing done as possible, in particular in regards to her nutrient intake.
I guess it's kind of a wait and see situation, although her paralysis and fall last night made think she should be taken to the ER, though I'm not sure what kind of treatment they could give her.
The "conversion" hypothesis also rang true for me, due to a recent death in the family and some trauma from that. As well as the cultural barrier... my mother is really really suspicious of all doctors. Still, it seems as though the combination of the osteopath / GP might be the best (and only) option for now.
Thanks again to everyone who has contributed.
posted by ajarbaday at 11:51 AM on November 24, 2009

I'm a bit baffled by the casual way that this osteopathic doctor is treating this situation. This situation sounds like it is way beyond nutrition. We are talking about possible pressure on her spinal cord, autoimmune disease, and other potentially permanently debilitating things here. Is this doctor a licensed Doctor of Osteopathic Medicine or is this a osteopathic chiropractor? There is a big difference between the two. Chiropractors are definitely not qualified to handle this and quite frankly neither is a osteopath. She should be seeing someone who specializes in spines. I don't think a geneticist is qualified to diagnose autoimmune neurological diseases. So that is also confusing. Has she seen anyone with the title of neurologist, neurosurgeon, orthopedist, and orthopedic surgeon? She needs to see them or see them again or see a different one.

The spinal column is really important. Problems with it can cause life long pain and or paralysis. Aside from her well being, life long problems are going to be way more expensive than any treatment she needs right now that may prevent permanent damage. I didn't realize the last fall was so recent. The equinus (ballerina) foot condition is a sign that there could be really bad neurological problems. I think she should go to the ER.
posted by Procloeon at 1:40 PM on November 24, 2009 [2 favorites]

She's been to a geneticist, who apparently ruled out neurological disorders at the time (this was about a year ago)

Wait, what? How? How does a "geneticist" rule out neurological disorders? Was he or she even a doctor? A geneticist is simply someone who studies genetics.

I'm getting the impression that your family tends towards the alternative forms of medicine? Is this accurate? Your sister sounds like she needs some hardcore western ortho or neuro consults, not osteopaths, geneticists, or anything else.
posted by Justinian at 2:49 PM on November 24, 2009

Still, it seems as though the combination of the osteopath / GP might be the best (and only) option for now.

I think that you really need to clarify the timeline and who has seen her for what, because I can't make sense out of this.

Ages 10-15: Scoliosis diagnosis at 10. Grew a lot. Scoliosis is a lot worse now. (How do you know this? Visual inspection by your family? Diagnosis by a doctor? When did she last have x-rays?) Spine curved not just laterally but "twisted".

During this time: no brace, no surgery, no other treatment. Did she see any specialist during this time?

One year ago: A geneticist saw her and ruled out a neurological component (to her scoliosis, I suppose, because her muscular weakness and associated symptoms came in the last month). Anyway, seeing one specialist a year ago gives you NO useful information about her current condition, especially as this was a cross-specialty assessment, which strikes me as odd, at the very least.

One month ago: Swine flu, collapse at school due to muscle weakness. Staying at home: "She was pulled out, and has been at home since, but her walking and mobility are seriously impaired. While she has gone out a few times, she will often wake up and not be able to move her feet or legs. At these times her feet are stuck in a position that looks like a ballerina straining to be on point. She complains of back, neck and shoulder pain. ... I think that I incorrectly phrased the degree of her paralysis. She can push down on my hand with her foot when I ask her to, but she has severe difficulty standing up properly or manuevering herself. At times it seems like her legs are just not working, but might be that they are simply unable to bear her weight."

Last night: Another fall? New paralysis from this fall? This is getting scary.

Muscle weakness, gait problems, temporary paralysis (or not -- but you are not a doctor) and odd extension of the feet. BIG issues. FRIGHTENING issues. What doctor saw her and what did they say? Are you saying a bunch of specialists saw her within the last month and are mystified? What kind of specialists? The osteopath is not a neurologist and he is not a surgeon. He should be referring her to specialists instead of making his own diagnosis and giving her massages. Your state insurance permits you to see a GP and get referrals, but honestly, if you can't see someone else IMMEDIATELY, take her to the ER or an urgent care centre. If she's had the swine flu once, she won't get it again.

I regret mentioning conversion disorder, because that may make you decide to just wait it out. First and foremost, she needs an expert assessment. Neither you nor I is that expert.

Your sister has a serious pre-existing medical condition. She is showing neuromuscular symptoms after flu. Waiting for some osteopath to get around to massages and a diagnosis is not enough. Yes, he might be right. Maybe this just happens to be a natural increase in the severity of the increased physical problems her uncorrected scoliosis are causing. But in that case, she needs more assertive treatment, because things can get very bad.
posted by maudlin at 4:30 PM on November 24, 2009 [2 favorites]

IANAD, but here's my background:

In my family, 3 of the 5 kids had surgery to correct scoliosis in our teens, free, in Qu├ębec and Ontario. (The oldest and youngest had scoliosis, but it self-corrected without surgery after a few years.) We are all living happy, normal lives now. God bless Tommy Douglas, because there was no way my family could have paid for three surgeries. I went to Sick Kids in Toronto, got great care, but also saw a girl with much worse scoliosis than me getting more extensive and painful surgery. She was glad of it, though, because she was better than before her first surgery and she expected to get even better after that bout.

My mother was diagnosed in childhood, before Canada had nationalized health insurance. Finances, then fear kept her away from proper medical treatment. She also saw an osteopath who massaged her and put a little lift in her shoe, but her spine got worse and worse. As an adult, she should have stood at least 5'9", but she was closer to 5'3". She had a nasty double lateral curve as well as a large dowagers' hump. She was visibly hunchbacked and embarrassed about it, her breathing was impeded, and she lived in moderate pain every day.

After all 3 of us kids had been fully treated and recovered, she no longer had her excuse to avoid surgery. She went in for surgery and had one hell of a time recovering, staying in the hospital for a year. She came out somewhat straighter than when she went in, but she had left it too long, and she started deteriorating again. She was on pain medication for the rest of her life. In fact, she wasn't diagnosed with the advanced liver cancer that killed her until two weeks before her death. She was so used to living in pain that she thought the cancer was just more of the same.

Your sister and the rest of your family are in a difficult situation. You have limited insurance and options. Your mother has some serious concerns about orthodox medicine. I understand that. But unless I'm misunderstanding you, your sister has been getting inadequate treatment for her scoliosis. She is presenting new and puzzling symptoms right now, which could just be neuromuscular strain, but I just find it really hard to believe that some specialist somewhere have declared her a mystery and left her in the hands of a humble osteopath.

Yes or no: has she seen specialists who have ruled out anything truly serious? Do they think she's not in immediate danger? Do they think the osteopath can help?

After you have sorted out your sister's immediate medical issues, you really should have her scoliosis assessed and a treatment plan developed. If cost is an issue, contact a Shriners hospital, like this one in Tampa, one of their orthopaedic hospitals.

Some background:
Shriners Hospitals for Children is a network of pediatric specialty hospitals, founded by the Shrine, where children under the age of 18 receive excellent medical care absolutely free of charge. There are 18 orthopaedic Shriners Hospitals, three Shriners Hospitals dedicated to treating children with severe burns, and one Shriners Hospital that provides orthopaedic, burn and spinal cord injury care. Shriners Hospitals are located throughout North America - 20 in the United States and one each in Mexico and Canada. These "Centers of Excellence" serve as major referral centers for children with complex orthopaedic and burn problems.

There is never a charge to the patient, parent or any third party for any service or medical treatment received at Shriners Hospitals. Shriners Hospitals accept and treat children without regard to race, religion or relationship to a Shriner. Any child may be eligible for treatment at a Shriners Hospital if the child is under 18 and if, in the opinion of the hospital's chief of staff, the child has an orthopaedic or burn condition that Shriners Hospitals can help.

All of the orthopaedic hospitals are equipped and staffed to treat children with congenital orthopaedic deformities, problems resulting from orthopaedic injuries, and diseases of the musculoskeletal system.
Good luck!

(And get your sister in to see someone else ASAP. Please.)
posted by maudlin at 4:57 PM on November 24, 2009 [2 favorites]

This is a pretty late follow-up: but the problem with my sister turned out to be neurofibromatosis, type II, which caused a tumor on her cervical spine and affected her movement substantially (found through MRI). Recommended treatment is removal of the tumor and fusion of several of the vertebrae.

Lots of folks were right about the recommended next steps - unfortunately, it took a while to find the right doctor and get her in for testing, partly due to insurance problems.

Thanks for help.
posted by ajarbaday at 12:00 AM on March 16, 2010

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