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Covering My Basis!   Message List  
Reply | Forward Message #181 of 2028 |
Re: [hydrocephalus] Covering My Basis!

Hi  Miss Comment
Your in my prayers as a mom of an 8yr...she has her shunt since 6mos we know the run around with ssi....I first was turned down due to she is not sick enough or is not downs....the sec time the did say she is disabled but her dad(who was on disablity) made too much say the least I have not gone to round three.....

Miss Comment <kcwonka@...> wrote:

  Ok first things first... i'm 25/f/Wisconsin. I was Diagonosed with
Hydrocephalus in August of 1998, I have had 9 brain surgeries,
ranging from everything of a continuous revisions surgically, to
implanting the Codman Programmable shunt, to Having the shunt break
in April of 2000 and I got a Staph infection resulting from that,
stayed in the hospital for 2 weeks, and thus had Grand Rapid Fire
Siezure during the surgery to implant a second shunt on the left hand
side, providing me with LACK of Speech, Mobility affected and Short
Term Memory affected.

  I Now have a Service Dog to help with my balance, and also if i
have a siezure. I have since been Diagonosed with Arnold Chiari
Malformation, and Focal Epilepsi, i also suffer from RLS which is
Restless Leg Syndrome, and from Asthma.

I have been dealing with continuous headaches, which have just been
decided upon by my internal medicine dr, that they are NOT migraines,
but there seems to be a shunt related problem. I have a continous
headache, that varies in Severity at times.

I also was in a Head on Motor Vehicle Accident on Dec 26,01 that
resulted in damaging my Left shunt, thus MY NS Implanted a New
Codeman Programmable shunt on the Right hand side, leaving the one on
the left un touched due to We didn't want to repeat the rapid fire
siezure.

  Right Now i am in the Process of getting a Much desired 2nd Opinion
since my NS is out of options, I will be attending the Medical
College of Wisconsin, for research upon either of Peds NS or an
Adult, but it was recommeded a  Peds because they handle the most
shunts.

My Most Recent shunt O gram was done 2 weeks ago, and the Results
came back "INCONCLUSIVE" thus he can't tell if my shunt is working
correctly or not, what i do know is that it took 4 needle pricks with
2 types of needles before they could aspirate any fluid, this Of
course was not in the Report <<rolls eyes>> lol, THus MY NS is going
to talk to the Radiologist.

He also Suggested I have AN MRI done on my Neck because of Frequent
Neck Spasms on Along the tracks of the shunts.

   IF anyone has any ideas here... Im listening...

  Also I work Part time as a Grocery store Clerk, and go to the
University FUll TIMe, but I have Taken off the Spring and SUmmer
Semesters to gain my life back.

   I am Considering applying for SSI, though the idea that
i'm "disabled" is alittle unnerving, yet i'm never gonna catch up to
the bills of what my insurance doesn't cover if i don't...

   That's it for now....

   Live,laugh,love

   MISS COMMENT




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Tue May 6, 2003 3:10 am

datsmykid2
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Forward
Message #181 of 2028 |
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Ok first things first... i'm 25/f/Wisconsin. I was Diagonosed with Hydrocephalus in August of 1998, I have had 9 brain surgeries, ranging from everything of a...
Miss Comment
kcwonka
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May 5, 2003
4:54 pm

Hi Miss CommentYour in my prayers as a mom of an 8yr...she has her shunt since 6mos we know the run around with ssi....I first was turned down due to she is...
debbie mcmillen
datsmykid2
Offline Send Email
May 6, 2003
3:10 am
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