I, for one, am one of those that has never had a shunt put in
for my PTC. I was diagnosed in January of 2007 and put on Diamox right from the
start. Over the course of the past 2 ½ years, as things have progressed with
migraines, vision problems, blackouts, etc. the only thing the neurologists
have done is altered my medications. In the beginning, I was on 300 mg of
Diamox a day, that’s it. Now, I’m on 1250 mg of Diamox and 400 mg
Topamax a day which doesn’t seem to be doing a thing for me. The
underlying problem? I live in such a “countrified” area that the
knowledge about PTC is non-existent. The doc that did the diagnosis is no
longer in this area, and the neurologists that are left in this area scratch
their head and only offer to adjust my medications and never decide to do any
research on PTC to find a way to help me. The closest neuro that has any kind
of experience with PTC is a 6 hour drive from me.
I have an appointment tomorrow with yet another neurologist
(this is the 6th one I’ve seen since my diagnosis) to see if
there is something different that can be done because these meds are really not
helping…
Jodi
Filling
From: ptc@yahoogroups.com [mailto:ptc@yahoogroups.com] On
Behalf Of softndark2 Sent: Wednesday, October 21, 2009 7:46 PM To: ptc@yahoogroups.com Subject: [ptc] Re: Shunt tubing
I am glad you are symptom free for right
now!!! (I hope all are feeling well) I had no idea
that they left the tubing in when they took out a bad shunt.
I would like to know if there is anyone that
has NEVER had a shunt put in for your PTC?
--- In ptc@yahoogroups.com, jwtooblsd blessed <jwtooblsd@...> wrote:
>
> Thank-you for the comments. My husband made a good point, that if I have
surgery then it may trigger my PTC and symptoms start up. Right now(Thank God)
I am symptom free with no shunt.
>
>
>
> --- On Wed, 10/21/09, mandasager@... mandasager@... wrote:
>
>
> From: mandasager@... mandasager@...
> Subject: Re: [ptc] Shunt tubing
> To: ptc@yahoogroups.com
> Date: Wednesday, October 21, 2009, 12:27 PM
>
>
>
>
>
>
> I feel for you. We are on our way to Dallas as we speak for another spinal
tap. My maculas are swelling and they don't know why. My new shunt is still in
place and I'm not having headaches. I have been battling pseudotumor since 1992
and I can't wait for the day they find a cure for this. I wish you the best :-)
> Sent via BlackBerry by AT&T
>
>
> From: jwtooblsd blessed jwtooblsd@yahoo. com>
> Date: Wed, 21 Oct 2009 10:19:37 -0700 (PDT)
> To: ptc@yahoogroups. com>
> Subject: Re: [ptc] Shunt tubing
>
>
>
>
>
>
>
>
> I can feel mine on occasions and it is a sharp feeling. I guess I don't
want anything that does not have to be there. I presently do not have a shunt,
but have a lot of scar tissue where the LP shunt was. I may just deal with it.
> Thanks
>
>
>
> --- On Wed, 10/21/09, mandasager@yahoo. com mandasager@yahoo. com>
wrote:
>
>
> From: mandasager@yahoo. com mandasager@yahoo. com>
> Subject: Re: [ptc] Shunt tubing
> To: ptc@yahoogroups. com
> Date: Wednesday, October 21, 2009, 12:04 PM
>
>
>
>
> A piece of tubing is still floating around in my body. On my last
revision, the tube was completely gone and they never did find it. I haven't
had any complications from it and that was in 1998.
> Sent via BlackBerry by AT&T
>
>
> From: jwtooblsd blessed jwtooblsd@yahoo. com>
> Date: Wed, 21 Oct 2009 09:31:21 -0700 (PDT)
> To: ptc@yahoogroups. com>
> Subject: [ptc] Shunt tubing
>
>
>
>
>
>
>
>
> Has anyone had a LP shunt removed, but the tubing was left in? I had a LP
shunt placed in 98, but was removed in 06 and the tubing was left in. I
recently went to a general surgeon to have it removed because sometimes I feel
it and can be painful. Using a local, she did an inoffice procedure to try and
remove it, by making an incision and pulling it out. She was able to get
some of it, but due to the age of it, it very brittle. So has anyone had
any complications?
> Janine/Tx
>
Has anyone had a LP shunt removed, but the tubing was left in? I had a LP shunt placed in 98, but was removed in 06 and the tubing was left in. I recently went...
A piece of tubing is still floating around in my body. On my last revision, the tube was completely gone and they never did find it. I haven't had any...
I can feel mine on occasions and it is a sharp feeling. I guess I don't want anything that does not have to be there. I presently do not have a shunt, but have...
I feel for you. We are on our way to Dallas as we speak for another spinal tap. My maculas are swelling and they don't know why. My new shunt is still in...
Thank-you for the comments. My husband made a good point, that if I have surgery then it may trigger my PTC and symptoms start up. Right now(Thank God) I am...
I am glad you are symptom free for right now!!! (I hope all are feeling well) I had no idea that they left the tubing in when they took out a bad shunt. I...
I, for one, am one of those that has never had a shunt put in for my PTC. I was diagnosed in January of 2007 and put on Diamox right from the start. Over the...
I'm so sorry to hear your delema of getting proper care where you are at. It sounds like you really need a shunt to me. Now that I have my VP shunt I am on...
I do agree that the 1 week of recovery would be well worth ridding my day of 9 pills. The very first neuro that put me on the Diamox said that the med was a...
Bless your heart! You need a shunt! I can not stand Diamox. Your symptoms don't get better and you have nasty side effects to go along with your misery. I...
I agree with Ocean that everyone with PTC is so different no one can base their treatment on "well if it works for so and so, it will work for me". I have 2...
Leslie, I am REALLY sorry to hear your sons are not doing well. Hang in there. It's hearbreaking to have to watch your child suffer. I wish I could do...
I I made a comment a few days ago, but I have been so sick with my PTC that I haven't read all the comments, and been able to comment. I live alone so it's...
I was told 4 years ago that I had a pituitary adenoma, now a new doctor at vanderbilt says it's an empty sella, she also thinks i may have PTC, due to constant...
the only test for PTC is a lumbar puncture to see how high the spinal fluid pressure is in your back. The eyes, blackouts, and other side effects are just...
I hate my LP shunt. I't uncomfortable all the time. When I wear pants, when I lay on my back, anytime I press hard against my waist I feel it. I'm very...
My daughter had a shunt revision in March of this year and the surgeon left part of the old shunt in. Two weeks later, she was in excrutiating pain and the...
I just had my second shunt placed last week (a VP this time). I had requested that they remove my faulty LP shunt, but the Nerosurgeon thought otherwise. So,...
Wow! It's really disheartening to hear so many issues with the shunts! I'm not the sufferer of PTC, but my best-friend is. She is allergic to sulfa, a main...
The majority of IH/PTC patients do not have shunts and are controlling their IH/PTC with medications (most commonly Diamox, Topamax and/or Lasix). Because...
My daughter’s problem with the shunts is that they kept failing on her or would become infected. She lost a shunt, on average, every 6 months. That was a...
Hello, I've never had a shunt placed - been diagnosed with PTC since early 2002 - have done the diamox, topomax, lasix etc - and any number of anti-seizure...
Well I did the dimox it did not work for me so i take 500 mil of Tompax and i have spinals every 3 to 4 months but after almost 3 years i have thrown in the...
HI Carol, I don't think you should feel like a quitter - you gave it your best and sometimes our bodies just don't respond the way we have in mind. I learned...
Also remember that your CSF pressure varies during the day, so a normal pressure does not rule out PTC, however an elevated pressure will confirm the ...
I implore all of you who may have had an abnormal MRV to seek an Interventional Neuro-radiologist to explore this further. We were told that our daughter's...
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