I have a 13 year old with ptc and now was told her situation is worse. her meds are 1000 a day and she has ringing in her hear and headaches. Isnt this suppose...
Actually it made it alot worse for me. Those meds did nothing but make me feel worse and give me kidney stones. On a duller note, I have no better advice for...
the diamox helped me but not for about 8 weeks. Also, in the mean time I had spinal taps to help lower the pressure which helped substantially with the ear...
Erin, As an adult, this disorder is overwhelming...it is considered rare, only because little research has been done. Doctors don't know if the malfunction is...
Wow Rapha! You have given some great advice!! Thank's. I do believe the one thing that is hard but I have a habit of doing is feeling like I am in a prison....
Hello, My daughter was diagnosed at 16 and it was hell... she is now 24 and still suffers with it. I can tell you that she has gone as high as 4000 a day to...
Hi I was wondering on shunts my nero said that meds do not help and that I should have a series of spinal taps to see if i will narutaly reset my self i think...
I have a VP shunt (tube from head to stomach with a big hunking piece of crap sticking out the side lol). Don't recommend that. Some do. Personally, doesn't...
Hi, Well, I have the lp shunt, which goes from the lower back to the stomach. My NS wanted to give my the newest which is the valve/resouir under the skin on...
I have the vp shunt and have had no problems with it after 1 revision about 9 days after it was first put in. But now I may be having some problems with it not...
Hi there. I'm sorry you are having so much trouble. 2 of my sons, both have PTC. The oldest (16 y/o) has been the guinea pig- with a VP shunt (ventricle of...
Over the years I've read lots of posts about Diamox and pregnancy...well, someone is finally listening. If you have been pregnant since your diagnosis and...
I went online and did the survey I havent heard back from anyone at the foundation but I did complete the survey. I am currently pregnant and on diamox so they...
thanks to all for the information on your shunts it is help full and i need to know also if anyone has had the spinal tap were they drain you low a few times...
For those who feel like they can trick or treat... 10 Dangers of trick or treating with ptc 10. You get winded while knocking on doors 9. You ask neighbors to...
Someone in the PTC message baord I am on wrote this.... For those of you with PTC, you'll get it. For those of you without PTC, this is our world. MY LETTER TO...
What an awesome write!! That says it like it is. Jo Ann ... From: Kenyon Smith <worship@...> Date: Thursday, October 18, 2007 9:12 am Subject:...
jloomis1@...
Oct 18, 2007 11:06 pm
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I cried when I read this - this is my life. I spent the entire day today in bed with one of the worst headaches that I've had yet. I just had to quit my job...
Hello Everyone: I want to send my love to all of you. I, too, have been a PTC sufferer for two years going into three years. Actually, I think it has been...
Hello everyone, I hope you had a blessed weekend. I haven't written in a long time. I was wonderind, did anyone see Extreme homemakeover last night? I caught...
If you missed the episode and want to watch it you can catch it on abc.com. Go to the full episode link and follow the directions from there. It was a great...
You can also go to www.abettercommunity.com and access the links to the Chiari information groups. The family chosen for a new home as a genetic issue with...
Hello Joanne and Everyone with PTC: I just wanted to say hello. I pray that you are hanging tough. I sent out an email almost two weeks ago concerning my walk...
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