What specialty do I ask to see?

[SalsMom]

I had physio and some brief bracing as I recovered from paralytic polio (aged 11 - 55 years ago) when my scoliosis developed. Once I was in my 30s I sought help for pain in right hip and leg and back pain and was prescribed orthotics in my shoes and told to live with the scoliosis. I cannot walk without the orthotics as I don't have the muscles to support my feet, they collapse inward onto my ankles.

My scoliosis has never been assessed beyond x-rays every five years. The past 10 years the radiologists have recommend that I be referred for MRI and further assessment, but the recommendation has been brushed aside by the GP saying nothing can be done now and it won't get worse. But it is getting worse and has become quite visible in the past two-three years where it never was before.

I have an appt to see my GP and I am going to ask for a referral to someone who can advise on how to manage my combo of Ehlers-Danlos and scoliosis. But *who* do I ask to see? What specialty?

Thanks for any suggestions.

Deb

[Lorraine 1966]

Glad to see Deb you are not going to allow your GP to just pass it over any more, stick to your guns. There is a list of really good scoliosis doctors on here from all over America so be good for you to find those, they could be a help.

[jrnyc]

hi Deb
don't know what insurance you have, but if you can change
your GP, maybe you should....if she/he will not give you a
referral....
you want to see a scoliosis specialist...an orthopedic doctor
might be a start, but they do not all specialize in scoli....so
it would be best to start by asking for one of the doctors listed
on this website...one in your area....
IF your GP tries to tell you that they are surgeons and you do
not need surgery, you can just say you need their expertise...
please do not let an ignorant GP...ignorant of spinal problems...
prevent you from getting the help you need...and the knowlege
you need a specialist to have...

welcome...and best of luck....
jess

[leahdragonfly]

Hi Deb,

you can find a list of scoliosis specialists in your area at http://www.srs.org/find/ (which is the Scoliosis Research Society). You can search by geographical area/specialty. You would be looking for someone for adult scoliosis.

Also, I think rheumatologists are usually familiar with Ehlers-Danlos. Although there is no specific treatment for it, but they are at least more knowledgeable than your GP, who is probably unaware that you can be helped. If you don't mind my asking, do you have specific problems related to your ED? I have hyper mobile joints and fit the criteria for the hypermobility type of ED, which is why I ask. I was told I had "an unspecified collagen disorder" but the rheumatologist didn't think it was ED.

Best of luck,

[SalsMom]

Thank you!

Thank you so much!

Though I grew up in the US I married a Canadian and have lived in Canada for many years. Insurance is not a problem, as we have provincial Blue-Cross coverage which covers most things. We recently changed provinces and are with a new GP in a clinic which specializes in caring for people with multiple medical issues (holds hand up) but she is a neurologist who immigrated from elsewhere, a *wonderful* stroke of luck for me as she is familiar with a very rare muscular disorder i also have, but she knows nothing about scoliosis. I have to educate her, but first I must educate myself! LOL

I have a mixed form of EDS with a medium degree of hypermobility. I can completely reverse my legs so that my toes point backwards. When I was young and foolish I'd do this as a party trick, until I did it for my neurologist and he turned white and told me never to do it again. I dislocate small joints like fingers easily, have very fragile slow-healing skin, cigarette papers scars and a history of vascular tumors.

Thank you for pointing me to the specialist's list. There is a doctor on that list in my city. My GP will have to refer me, but I can check to make sure the fellow is still here, accepting patients and if there's a wait list. That way I am armed when I see my GP.

I'm printing out papers from Pub Med about scoliosis worsening in adults but patients seem to fall into two categories; adults who were treated surgically as children whose fusions have failed, or; adults who have developed scoliosis *as* adults. No one addresses those of us whose curvature was never treated.

Thank you again!
All the best!
Deb - 66 - scoliosis since 11 - curvy but uninformed, post-polio, also Ehlers-Danlos and hypokalemic periodic paralysis

[SalsMom]

Follow-up

Hi,

I called the specialist's office to make sure he's still here. We have a medical school and as a result specialist/professors are sometimes here only for a certain length of time. He's still here but is on sabbatical and won't be available until next March. Lovely. If my problem is urgent (insert collapsed disk, etc) I can access the "Spine on-call" program but I am pretty sure I wouldn't qualify for that.

So, I guess I ask for a referral and wait until March. In the meantime, in between-time, ain't we got fun? =

If I hear back from this physiotherapist in Oz, I'm thinking of ordering one of her scoliosis suits (she makes them in adult sizes) with stabilization for my wonky hips. I'm hoping the support will reduce my pain level. My curvature is definitely worse when my muscles are at their weakest, paradoxically first thing in the morning (because of the HypoKPP), and again after 5:00 pm (fatigue and Ehlers-Danlos). http://strapsbracing.com/bracing-gar...coliosis-suit/

As my ole Da' would say, "Any old port in a storm".

Deb - 66 - scoliosis since polio at 11, Ehlers-Danlos, hypokalemic periodic paralysis with permanent truncal and quadricep weakness.