http://health.groups.yahoo.com/group/ptc/ This is a mailing list for those who suffer from PTC. Family members, friends and loved ones are not only welcome but encourag Tue, 17 Nov 2009 02:45:06 GMT Dee http://health.groups.yahoo.com/group/ptc/message/28656 http://health.groups.yahoo.com/group/ptc/message/28656 HELLO ALL AM IN NEED OF INFORMATION ON SHUNTS. AM IN MY SECOND ROUND OF THIS TERRIBLE DISEASE. AM TO THE PT WHERE MY NEUROGLIST WANTS TO SEND ME TO A NEURO Fri, 13 Nov 2009 13:22:48 GMT Kenyon Smith http://health.groups.yahoo.com/group/ptc/message/28655 http://health.groups.yahoo.com/group/ptc/message/28655 My heart and prayers go out to you Beth. I also pray for all of you suffering from this cruel illness. Love, Ken ... Beth, I may not be in Maine or even close Fri, 13 Nov 2009 01:45:38 GMT jwtooblsd blessed http://health.groups.yahoo.com/group/ptc/message/28654 http://health.groups.yahoo.com/group/ptc/message/28654 Beth, I may not be in Maine or even close to where you are, but you are in my prayers and I hope that this will be the FINAL revision. Janine/Texas ... From: Wed, 11 Nov 2009 15:15:00 GMT chdblwinnr@... http://health.groups.yahoo.com/group/ptc/message/28653 http://health.groups.yahoo.com/group/ptc/message/28653 Hey Beth, Long time no hear. I am so sorry that things are not going well for you. If there is anything I can do for you please let me know. You can email me Wed, 11 Nov 2009 01:32:54 GMT bbailey1804924 http://health.groups.yahoo.com/group/ptc/message/28652 http://health.groups.yahoo.com/group/ptc/message/28652 Hello everyone- Hope all is well with everybody. It has been a while since I have posted on here. I had a vp shunt revision done on January 20th 2009. In Thu, 05 Nov 2009 13:29:07 GMT Kenyon Smith http://health.groups.yahoo.com/group/ptc/message/28651 http://health.groups.yahoo.com/group/ptc/message/28651 Hiya ptc family, I ran across a devotion for today that is helpful to any of us ptc'ers who are spiritual; Here's the link: Thu, 29 Oct 2009 12:06:26 GMT starrieangel03 http://health.groups.yahoo.com/group/ptc/message/28650 http://health.groups.yahoo.com/group/ptc/message/28650 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 Thu, 29 Oct 2009 04:47:27 GMT jwtooblsd blessed http://health.groups.yahoo.com/group/ptc/message/28649 http://health.groups.yahoo.com/group/ptc/message/28649 I am taking Lamictal for seizures and my neuro said it is a good med, even in the long run. I also am on diamox, lasix and a eyedrop to help keep fluid out of Thu, 29 Oct 2009 03:58:10 GMT SherylRB@... http://health.groups.yahoo.com/group/ptc/message/28648 http://health.groups.yahoo.com/group/ptc/message/28648 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 Thu, 29 Oct 2009 03:45:35 GMT Daniel Mcneill http://health.groups.yahoo.com/group/ptc/message/28647 http://health.groups.yahoo.com/group/ptc/message/28647 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 Thu, 29 Oct 2009 02:49:49 GMT Carol Goodness http://health.groups.yahoo.com/group/ptc/message/28646 http://health.groups.yahoo.com/group/ptc/message/28646 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 Wed, 28 Oct 2009 23:26:54 GMT Daniel Mcneill http://health.groups.yahoo.com/group/ptc/message/28645 http://health.groups.yahoo.com/group/ptc/message/28645 Hello, I took depacote as one of the anti-seizure meds - lost a ton of hair and had tremors so bad I could barely hold a fork to eat. The side affects of both Wed, 28 Oct 2009 23:17:15 GMT Daniel Mcneill http://health.groups.yahoo.com/group/ptc/message/28644 http://health.groups.yahoo.com/group/ptc/message/28644 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 Tue, 27 Oct 2009 16:02:18 GMT SherylRB@... http://health.groups.yahoo.com/group/ptc/message/28643 http://health.groups.yahoo.com/group/ptc/message/28643 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 Tue, 27 Oct 2009 11:38:00 GMT shgray76103 http://health.groups.yahoo.com/group/ptc/message/28642 http://health.groups.yahoo.com/group/ptc/message/28642 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