Agent Orange and SB info, and TSC questions

[Guest guest]

Tethered Spinal Cord SyndromeHi,

This is a longish two part message. The first deals with the Agent Orange and

SB program, the second with concerns about my son. I have learned a lot lurking

on this list, and am hoping that some one can help point us in the right

direction.

First the SB/Agent Orange information. The monthly stipend for " children " of

Viet Nam vets that are classified as level 3 is $1500/month plus 100% coverage

of all SB related medical costs, including such things as Tylenol, catheters,

incontinence supplies, travel to and from MD, prescriptions, even psych care for

diagnosis such as depression related to coping with the SB and its

complications.

All branches of the service are covered, the only requirement is that the

qualifying veteran served " in-country " at any point between 1961 and 1972. It

is presumed that any vet that served there in those years was exposed.

There is a listing of the related diagnosis on the VA website

http://www.va.gov/hac/forbeneficiaries/spina/spina.asp

SB occulta will qualify IF you have one or more of the " approved " diagnosis,

which are very common to anyone with any form of SB. Also if you are the child

of a female vet with a birth defect - and this does not have to be SB, but can

be most any birth defect, there is another similar program that has much the

same benefits. Most people don't seem to be aware of this on as it hasn't

gotten the publicity the program for SB did.

We have been receiving benefits for my son, now 21, since the program began in

1997.

Now on to my concerns about Ben. He was able to walk full time until just a few

years ago, but was determined to be level 3 due to his bowel and bladder

function. He is now a full time wc user due to his pain, poor balance, and

deterioration of function in his legs. He is no longer even able to stand

without support. He is still able to walk a little, but it is more of a lurch,

and is very difficults for him. He has always had bowel and bladder issues, but

they have worsened as well. His previous bowel program no longer is working for

him. He has had two obstructions in past year, followed by explosive problems

lasting several days. (Sorry to be graphic - but I'm sure some of you get the

idea). He is now complaining of upper body symptoms, " bugs " crawling under his

skin, intermittent hand tremors, and neck pain.

We are trying to find someone that can help keep this from progressing further,

and hope to find something to help with the pain, however at this time the

neurosurgeon says its all due to his scoliosis, and is an orthopedic issue, but

the ortho guys say it is not from the scolosis as his curve is " only 48

degrees " , so is from his teathering and the large syrinx he has developed, then

of course the neurosurgeon says he has had " too many deteatherings " (5) and

cannot have any more. His symptoms are the same as before his last three

deteatherings, but worsening. He has appointments with new MDs at the Mayo

clinic scheduled next month.

Something has got be be able to be done. He wants to be able to finish his

education, and get out on his own, but at this point his medical issues won't

allow him to do this. Does anyone have some advice? Watching him deteriorate

like this is real tough. He has always been so independent. Any advice or

suggestion will be welcome.

Thanks,

Diane