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  1. #1
    Join Date
    May. 28, 2013
    Location
    Bellingham, Washington
    Posts
    600

    Default Scoliosis, EDS - Frustrated.

    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.
    Bilbo - The mustang!
    "All we have to decide is what to do with the time that is given to us."



  2. #2
    Join Date
    Jan. 6, 2015
    Location
    KY
    Posts
    201

    Default

    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.


    1 members found this post helpful.

  3. #3
    Join Date
    May. 28, 2013
    Location
    Bellingham, Washington
    Posts
    600

    Default

    Quote Originally Posted by kdreger View Post
    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.
    Sadly, I had 6 + months of OT last year which helped very little.
    Bilbo - The mustang!
    "All we have to decide is what to do with the time that is given to us."



  4. #4

    Default

    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.


    1 members found this post helpful.

  5. #5
    Join Date
    May. 28, 2013
    Location
    Bellingham, Washington
    Posts
    600

    Default

    Quote Originally Posted by thoroughlydaft View Post
    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.
    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.
    Bilbo - The mustang!
    "All we have to decide is what to do with the time that is given to us."



  6. #6

    Default

    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.



  7. #7
    Join Date
    May. 28, 2013
    Location
    Bellingham, Washington
    Posts
    600

    Default

    Where are those doctors located? I am on the west coast.
    Bilbo - The mustang!
    "All we have to decide is what to do with the time that is given to us."



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