I just wanted to thank everyone for all the information...it is much appreciated and I will pass this info on to her.  She needs all the help she can get.  She's the single mother of 2 young boys age 2 and 4.  At only 25 years old and having this disease that makes her so sick on some days that she can't leave the couch she feels like her life is over.  She's unable to do anything and it's very frustrating and depressing for her.  That brings up another question...she is not able to work does anyone know about receiving disability for this disease?

As far as the doctors in this area - we searched the next closest town which is about 2 hours away and none there will accept medicaid.  We live in Oregon and may have to travel to Portland it sounds like...that's about 5 hours north of us. 

--- On Mon, 7/21/08, TERESA MEALER <tamealer@...> wrote:

From: TERESA MEALER <tamealer@...>
Subject: Re: [ptc] Re: Hello all
To: ptc@yahoogroups.com
Date: Monday, July 21, 2008, 8:24 AM

Does that mean like my optic nerves have scar tissue on them, and they will never heal? Teresa Mealer vision advocate Prevent Blindness America --- On Mon, 7/21/08, Gina Waters <enformer@comcast. net> wrote: From: Gina Waters <enformer@comcast. net> Subject: Re: [ptc] Re: Hello all To: ptc@yahoogroups. com Date: Monday, July 21, 2008, 9:15 AM atrophy is when something is damaged. In my case.. part of my optic nerve is damaged with no chance of repair.   ----- Original Message ----- From: TERESA MEALER To: ptc@yahoogroups. com Sent: Monday, July 21, 2008 8:27 AM Subject: Re: [ptc] Re: Hello all                What is atrophy??   Teresa Mealer vision advocate Prevent Blindness America --- On Mon, 7/21/08, Gina Waters <enformer@comcast. net> wrote: From: Gina Waters <enformer@comcast. net> Subject: Re: [ptc] Re: Hello all To: ptc@yahoogroups. com Date: Monday, July 21, 2008, 7:09 AM Hi,   After going thru agony for 6 years I finally got a vp shunt put in around late April of this year. I can tell you it is a wonderful thing. I will say, though, its different for everybody. There are different kinds of shunts and different placements. Theres a VP and an LP shunt. I believe the VP is more common. It goes from your head down into your stomach or chest cavity. Its a big drain to put it simply. It takes the fluid buildup from inside your head and passes it down to wherever the end of the drain is. To be honest, nothing is foolproof. I had the thing placed in April and havent had another headache since then and my eyes have gotten better until the last week or so. It happens, as I'm told. More then likely adjustments or revisions will need to be made.   Like your sister, I am on state medical assistance. But I had the surgery done when I didn't have any insurance. And thery picked up the tab for me. In my honest opinion, having the shunt is well worth it. I don't know where I would be right now if I didnt get it done. It was so bad, I had to quit my job. I've had numerous LPs done. I think about 8 or 9 of them. It helped for a few days but the pain and everything always came right back. Even with this shunt, I still take 1500 mgs of Diamox every day. This is because of my eyes. In one of my eyes I have a lot of atrophy on my optic nerve. So I guess its a matter of time before I lose sight in that eye.   After the surgery is hard. It took me about a month to recover completely. Of course I had problems with the incision they did on my stomach, so I'm not sure how long the average recovery time is. I honestly didn't even think of a shunt until I was hospitalized for 2 weeks because I had a severe headache that they couldn't get rid of. I, too, changed neuros right after I had the surgery. The one I was going to for 6 years wouldn't even consider doing a shunt. But I would tell your sister to get it done if she can. Because its well worth it. Good Luck.       ----- Original Message ----- From: DaShaunda To: ptc@yahoogroups. com Sent: Monday, July 21, 2008 4:12 AM Subject: [ptc] Re: Hello all 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 >