Re: 40yrs.post Harrington rods-HELP

[Guest guest]

Hi Alma,

Hi and welcome to the group, though I'm sorry you have to be here, and

to hear that you're in pain. You said that there are no specialists in

Alaska. What type of specialists have you tried to see? If you

haven't tried already, is there anyone who can at least try to help you

with pain management to make things a little more bearable, while you

perhaps try to find a way to see a spinal specialist? I am unfamiliar

with any specialists in Alaska, but I surely hope that another member

is able to speak up and offer more substantial help. Please know that

you aren't alone in all of this.

>

> Hi! I am 57yrs. ,on total disability,have Medicare+Medicaid,almost

all of my spine is degenerated,40*curve on top,and in horrible pain,

PLUS Ilive in Alaska which has no specialist can anyone help.

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

[Guest guest]

Hi and welcome --

I can really identify and empathize with you on several levels. I am

the same age as you and also have had severe Harrington rod problems.

I am glad these did not occur when I lived in Fairbanks many years

ago -- no doubt I would have been in the same boat as you are now. If

only we knew more about any resources you might have up there. Where

in Alaska do you live? Could you travel to Seattle if necessary? I

know you must be anxious to get, at the very least, a diagnosis of

what is wrong. Since it's been 40 years, you are probably not even in

touch with your original surgeon or someone who might refer you.

I can only echo 's post and assure you that you are not alone.

I believe there must at least be pain specialists in Alaska. I

remember reading posts at the Pumpsters group from a man who had

had a pain pump installed in Alaska. When he needed follow-up surgery,

however, he almost did not get it in time because his surgeon was out

moose hunting.

Have you checked the Scoliosis Research Society listing to see if

there is anyone within a reasonable distance who could at least

evaluate the situation and advise you on how to you might proceed?

You might also try posting at other scoliosis/flatback syndrome

groups, or at the National Scoliosis Foundation forums.

I know you must be feeling very frustrated and very much at a loss as

you try to cope with your spinal situation on your own. If nothing

else, I hope you will continue to post at this group and let us know

how you are doing. If you do find the kind of specialized medical help

you need -- and I hope very much that you will -- you will be able to

provide help to others who may post in the future from Alaska. We have

been through this with respect to members in other places, such as

Canada and the U.K., and eventually we did find out about doctors in

those places who could help. I only wish we had more to offer you

right now.

Best,

>

> Hi! I am 57yrs. ,on total disability,have Medicare+Medicaid,almost

all of my spine is degenerated,40*curve on top,and in horrible pain,

PLUS Ilive in Alaska which has no specialist can anyone help.

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>