Hello,

My name is Terri, from TN. I just read your email regarding your sister.

First of all, I want 2 thank u 4 taking the time to do this research. I am over weight, and when my sibs looked ptc up, they thought that if I just lose the weight then I would b cured. It has taken a while 2 convince them that there is no cause or cure.

Second of all, let me tell u a bit about my self.

I was dx'd in Nov '06. By the time that I was dx'd, I had already lost my sight in my left eye. Hence the larger bold print that I am using.

I was given a vp shunt, (the one in the brain), it worked 4 a few mos, then I bgan losing sight in my right eye. The drs gave me an lp shunt, (the one in the back). That was May of last yr. Then bcause of my blindness, I had bumped my head so many times that the tube came through my scalp. It had 2 b removed in April of this yr. Then my spinal pressure was not up enough 2 get another shunt. I continued to lose my sight in my right eye. Then the pain set in. This past week, my pressure was finally up past 55, this qualified me 2 get my new shunt. It is now on my left side. This new one is supposed to b electronic and b able to shut off if the pressure goes 2 high up or down.

I also did the diamox, but could not take it. I stayed bed ridden. My dr said that it was almost equal 2 chemo, without the hair loss. My nuero said he preferred me not 2 take it so that I could stay out of bed.

So far, I am feeling LOTS better. B4 I almost like a drug addict, begging 4 someone to take the pain away.

Now, my pain is gone 4 the most part. I do have migraines. Bleach, my arthritis in my neck, ptc pain, ect can trigger it. Though I have one now, it is not as fierce as the ptc pain.

I also live in a small town. My dr is 3 hrs away.

I don't know what state you r in, but if u r in TN, let me know, and I will put u in touch with my dr. He doesn't have bed side manners, but knows his stuff 4 the most part.

Good luck and God bless,

terri mealer

Teresa Mealer
vision advocate
Prevent Blindness America


--- On Mon, 7/21/08, DaShaunda <dashaunda_h@...> wrote:

From: DaShaunda <dashaunda_h@...>
Subject: [ptc] Re: Hello all
To: ptc@yahoogroups.com
Date: Monday, July 21, 2008, 3:12 AM

Thank you for the response. She does see an opthamologist probably
once a month to check on her papalledema. ..right now she has it and
when she told her neuro he said to increase her lasix to 90mg a day.
He seems to be a quack but we live in a small town and there's no
other doctors - plus she's on state medical so she doesn't get much
coverage.
As far as Diamox goes she did take it in the beginning but it made
her sick. She also takes valium, percocet, and tramadol.
She's only had one LP - I've heard that this is a treatment that a
lot of patients use but they don't seem to want to do that here. The
one she did have seemed to help a lot.
We're looking into getting the shunt but again because of her medical
we have to wait until she's accepted which will be a few more
months. Can anyone tell me how the shunt works? Is it a good
improvement? She's very scared about having the surgery and wants to
know if it's worth it.

--- In ptc@yahoogroups. com, "Jennifer Stark" <jenniferstark1976@ ...>
wrote:
>
> --- In ptc@yahoogroups. com, "DaShaunda" <dashaunda_h@ > wrote:
> >
> > I found this website trying to found out more information about
> PTC.
> > My sister was diagnosed in November 2007 so we're pretty
unfamiliar
> > with the disease and it seems like the doctors are too. It just
> seems
> > odd to me that she can be so sick that she can't move from the
couch
> > and when she calls the doctor he says to up the water pills - it
> seems
> > that's his answer to everything (She's taking 80mg of Lasix...is
> that
> > normal?) Our family has a lot of unanswered questions and I'm
> hoping
> > to find some answers here...
> >
>
> Hello,
>
> First thing is I am glad that you found this group. Secondly
your
> sister needs to get to a doctor who knows about PTC. Is she seeing
a
> neuro Dr? Even if she is she needs another one. Did the Dr. mention
> Diamox, that is what a lot of us take and it is around 1000mgs a
day
> others also take things for pain if needed a lot of people do need
the
> pain meds. It can come and go some people have found relief with
> loosing weight and some it doesn;t do anything for. It is very very
> important that she had a dr who can fully understand the importance
of
> getting her fluid levels down. I am in by no way tring to scare you
> but this is a seriouse disease and with out proper treatment she
can
> loose part or all of her vision. She also needs to be followed by a
> opthamologist preferably a neuro opthamologist who can really check
> her vision and check her optic nerve to see if there is any
sweeling.
> It is important to understand that this disease effects people
> differently. For instance a lot of people have the migranes, I
however
> do not have them. Some have no vision problems and some have a lot.
> Ther is not enough info about this diseas but this is a great group
> and they are very helpfull here. Please feel free to write me with
any
> questions you have God bless
> Jennifer
>