[little*rhino]

Because of the condition I have, I am experiencing extreme pain inflammation and weakness of the ligament structure that supports the head and neck. What that translates to is an increasingly limited range of use of my arms and right now I am typing this with speech to text software.

I am seekinghelp with two things... one being any information that anyone can give me regarding treatment for this area... but the other being any information or links to sites meant for people with physical disabilities who are seeking alternatives and or adaptations to everyday life.

For example I have not been able to sleep on a flat bedfor several years... I currently have adapted my sleeping space with layers of memory foam that have been folded and tailored to hold my spine properly as best I can while I sleep. I very much would love to find a better and more"normal" method by which to do this... but no one seems to know how to find someone with expertise on making such custom adaptations

Now with this recent loss of function I am struggling to find ways to adapt to many tasks... I need more things on bad days, but even on good days I need to be thinking about prevention and making it easier on me

If anyone can tell me what type of expert or company or site I can go to to try to find the things I might need I would be very grateful

Thanks

[ECHOES]

little*rhino

The Christopher and Dana Reeve Foundation site or this site: http://www.spineuniverse.com/anatomy...e-anatomy-neck might be helpful.

I hope this helps!

[madisgram]

i had a similar problem and was a candidate for spinal fusion. saw a neurologist. the surgery changed my life for the absolute better. i too used memory foam for years but still was miserable with pain. later numbness, cause spinal fluid was being pinched off. encourage you to consider this avenue. if you have a good surgeon...too many ppl don't research a good doctor and end up scaring everybody...you will be the new and improved you. very limited recovery time...about 6 weeks i couldn't drive but was mobile after about 2 weeks, just careful. vocational rehabilitation would fund your operation. see other place you posted for my post re this. if u have questions feel free to pm me.

[little*rhino]

i am in canada... i have had an OT choose my ergo desk/keyboard setup.. and i have dragon naturally speaking - that is software that allows me to talk and the computer will type for me. It does ok with basic text but it can't do the more complex code stuff i need to write and it is horribly clumsy at performing other tasks that you might use a mouse to do.

i am afraid to name the condition because it is rare... and i am afraid my ex might find me here because of that. Maybe that is stupid but he is so abusive... i dare not risk it.

it is a connective tissue problem though... and that combined with various major injuries have lead to multiple issues. Right now they don't know exactly why my neck is doing this or what to do to address it. Chronic damage, inflamation and pain are all part and parcel.

there is another member here who had a spinal fusion that has left her unable to walk properly and has really created many big problems... she hasn't been able to work since and is in pain. Fusions carry a 50% success rate even with a good surgeon.

either way though... i am not a candidate for a fusion. The connective tissue problem would simply reoccur and then i'd be back to where i began but with tissue that had been compromised.

in essense... i am waaaaaaaaaaaaay to elastic. Nothing stays where it should, everything moves and often tears. A fusion would stabilize one thing, and then the structures above or below would go as a result.

thank you so much for your input!!!

[madisgram]

Originally Posted by little*rhino

i am afraid to name the condition because it is rare... and i am afraid my ex might find me here because of that. Maybe that is stupid but he is so abusive... i dare not risk it. i'm so sorry he is not supportive towards you.

it is a connective tissue problem though... and that combined with various major injuries have lead to multiple issues. Right now they don't know exactly why my neck is doing this or what to do to address it. Chronic damage, inflamation and pain are all part and parcel.

there is another member here who had a spinal fusion that has left her unable to walk properly and has really created many big problems... she hasn't been able to work since and is in pain. Fusions carry a 50% success rate even with a good surgeon. i'm curious where you found that statistic. have several friends, a son, a cousin, an uncle and myself with excellent results. realize this procedure won't help you but also concerned re what you quoted for results of this procedure. in my case it was c3-c8 so was an involved procedure with other factors too.no complications for any of us. perhaps in the US maybe results are better? idk.
just checked multiple medical sites, rate in US about 90-98% effective-success.

either way though... i am not a candidate for a fusion. The connective tissue problem would simply reoccur and then i'd be back to where i began but with tissue that had been compromised.

in essense... i am waaaaaaaaaaaaay to elastic. Nothing stays where it should, everything moves and often tears. A fusion would stabilize one thing, and then the structures above or below would go as a result.

thank you so much for your input!!!

so sorry this won't help. thanks for the clarification. have you checked out on google any possible medical solutions to your problem? http://www.mayoclinic.com figure you have but just a thought. wish i could help more. sorry