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Old 05-21-2010, 12:59 AM #1
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Theta Z Theta Z is offline
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Join Date: Apr 2010
Location: GulfCoastSouth .... April 2014 rudely displanted to the cold wet windy gloomy NW coast.
Posts: 675
10 yr Member
Default Heterotopic Ossification: post-TBI/SCI

Hello, All, in the Neurotalk.com forums,

I have in the past recent weeks been called-upon to put into action my best, former-excellent-Researcher-capabilities, to 'ferret-out' the best possible specialists to evaluate and direct course of possible treatment for severe TBI survivor (broken neck) x 20 years, who has only recently been direly diagnosed with extensive, progressed heterotopic ossification. We are at a loss for any knowledgeable physicians in this region; most respond: "I've never heard of that." When, in fact, it is supposedly fairly common complication in traumatic brain injury (TBI) and/or spinal cord injury (SCI)--- as well as in hip replacement; and in amputation.

Does anyone, any family have any experience or knowledge of "H.O."?
If so, we most welcome your communiques and information sharing here.

Sincerely,
Theta Z
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50s Babyboomer; 2008 high-impact rear-ended/totalled-MVC, closed-head injury->pcs ... "Still dealing with it."
1993, Fell on black ice; first closed-head injury; life-altering. // 2014 Now dealing with Peripheral Neuropathy, tremors, shakiness, vestibular disorder, akithesia, anhedonia, yada yada, likely thanks to rx meds // 2014: uprooted to the cold wet gray NW coast, trying to find a way back home ... where it's blue sky and warm!
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Each and every day I am better and better. I affirm and give thanks that it is so. // 2014-This was still true for me last year, I truly felt this a year ago. Unfortunately it holds no meaning for me now. Odd, it was the Theta mantra for years. Change change change.
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Old 05-28-2010, 05:51 AM #2
gabbycakes gabbycakes is offline
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gabbycakes gabbycakes is offline
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Default This is my understanding....

[QUOTE=Theta Z;656634]Hello, All, in the Neurotalk.com forums,

I have in the past recent weeks been called-upon to put into action my best, former-excellent-Researcher-capabilities, to 'ferret-out' the best possible specialists to evaluate and direct course of possible treatment for severe TBI survivor (broken neck) x 20 years, who has only recently been direly diagnosed with extensive, progressed heterotopic ossification. We are at a loss for any knowledgeable physicians in this region; most respond: "I've never heard of that." When, in fact, it is supposedly fairly common complication in traumatic brain injury (TBI) and/or spinal cord injury (SCI)--- as well as in hip replacement; and in amputation.

Does anyone, any family have any experience or knowledge of "H.O."?
If so, we most welcome your communiques and information sharing here.

Sincerely,
Theta Z

Dear Theta,

I had a very serious inquiry to my elbow. I had to have many surgeries just to save my arm. During the many surgeries I did develope HO, which from my understanding is bone that grows when a serious inquiry is healing. It can also be a very big negative and in my case it was hindering my range of motion because it was growing out of control along with scar tissue that was growing out of control.
My orthopedic surgeon who just did elbow sugery is the doctor who took care of it. I had to have 2 contracture release, which is removing of the excess scar tissue so I could get my range of motion back. I also have much titanium in my arm which I am sure did not help the situation. I don't think they really touch the HO because the scar tissue was hindering me more. Again, I think a ortho. dr. is the one who would take care of this. You mentioned you live in the gulf area. I have heard of a very good orthopedic group in Alabama. I truly don't know the name or even the area. Put if you google HO doctors it might come up...

If you are willing to travel I can refer you to the Hospital for Special Surgery in NYC. www.hss.edu. I would go on there web site it is an amazing ortho. facility rated the best in the country. They are very willing to help anyone even if you just ask for a referral for your area. I am about 2 hours from the facility but they are the only ones that could help me and today my arm is not perfect and I did get RSD but at least they did save my arm and I would say I have 80% functioning but not a lot of endurance, but I'll take it...
gabbycakes
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