Scoliosis, EDS - Frustrated.

[MustangSavvy]

was just diagnosed with scoliosis. I am waiting for a diagnoses of Ehler’s Danlos Syndrome type three. I also have ulnar nerve neropathy and a TFCC tear in my left wrist.

I just feel like going down this road is so pointless - doctor’s don’t take you seriously. I can’t tell you how many times I have gotten you are two young to be in pain like this or to have all these issues (I am 21).

I am supposed to start physio up again, but it hasn’t helped in the past. I need surgery on my L wrist to stabilize it.

Anyone else? I am just frustrated and tired of always being in pain. I want to be able to hike again and ride normally.

[kdreger]

Tell your Dr you want OT (occupational therapy) instead of PT. Huge difference in outlook and results. OT will help you do what you want pain free including riding and hiking.

[MustangSavvy]

[QUOTE=kdreger;8066162]
Tell your Dr you want OT (occupational therapy) instead of PT. Huge difference in outlook and results. OT will help you do what you want pain free including riding and hiking.[/QUOTE]

Sadly, I had 6 + months of OT last year which helped very little.

[thoroughlydaft]

Unfortunately, I know exactly what you are talking about. I have EDS in addition to severe kyphosis, a tethered spinal cord, a chiari malformation, disc degeneration in my cervical spine, and clivo-axial instability. The pain is never ending, even with meds and a long-term course of PT. The only thing the PT was able to do was to relocate my constant dislocations (probably about 30 a week), but I stopped going after a year because I wasn’t seeing any improvement.

[MustangSavvy]

[QUOTE=thoroughlydaft;8067461]
Unfortunately, I know exactly what you are talking about. I have EDS in addition to severe kyphosis, a tethered spinal cord, a chiari malformation, disc degeneration in my cervical spine, and clivo-axial instability. The pain is never ending, even with meds and a long-term course of PT. The only thing the PT was able to do was to relocate my constant dislocations (probably about 30 a week), but I stopped going after a year because I wasn’t seeing any improvement.[/QUOTE]

That sounds a lot worse then me, PT has helped with my dislocations and getting everything stronger but at the end of the day it really doesn’t help much. It is awful and very frustrating that so few doctors take me seriously.

[thoroughlydaft]

Local docs are usually not helpful. If you can, I would definitely recommend getting on the waitlist to see Dr. Francomano. She is truly the best there is. I see her a couple times a year, and no one compares to her. I also just saw Dr. Henderson for the first time, and was very impressed. He spent over 3 hrs at my first appointment going over my MRIs with me. This was the same day that I also saw a spinal surgeon at Hopkins who spent about 15 min. I know the waits for the “EDS experts” are long, but I really think it’s worth it. Henderson is Australian, and used to be the foreman on a cattle ranch there. He was very understanding of my desire to continue to ride.

[MustangSavvy]

Where are those doctors located? I am on the west coast.

[thoroughlydaft]

Mustang, Francomano is in Baltimore and Henderson is about 45 min away in Chevy Chase, MD. It is more than worth it to make the trip to see them. I believe Dr. Francomano’s wait list is currently about 15 months for new patients. I really can’t describe how valuable seeing her is. She is really the best in the world.

I think there are a few EDS people at Stanford, but don’t know their names off of the top of my head. Dr. Tinkle is in Chicago (genetics), Dr. Chopra is in RI (pain management), Dr. Collins (physiatrist) is in IN, and Dr. Levy is at Hopkins (genetics).

[thoroughlydaft]

Dr. Francomano runs the new EDS center at Greater Baltimore Medical Center.