I have not written on this blog for three years! I changed to my own website, but finally closed it down as I never had time to blog. I am now "in my jammies" again and not working so here I am!
Merry Christmas! Hope you all had a great day with family and friends. We have a six (and a half) month old granddaughter this Christmas and it is a real kick watching as she discovers everything in her world. She has 4 older sisters and an older brother. It is really cool to see how much they love her. Fun Christmas! And I am pooped out so will post more tomorrow or the next day!
Happy Birthday Jesus!
posted by ...jus me at 10:28 PM
2 Comments:
Hi, I am writing this response to you because of the blogging you did 3 years ago about ptc. I really need someone to talk to who has dealt with this. I was diaganosed with ptc in 2000. meds didnt work for me so they put a lumbar shunt in. This shunt worked until 2005 and then had to be replaced. They replaced the lumbar shunt in August, 2005 and then had to replace again in Nov., 2005. By Jan, 2006 the shunt was not working again. They replaced that one with a brain shunt. It has worked great since, until a few weeks ago. Then I found out that the life expectancy of the shunt was only 5 years or so. Now they are talking about replacing this one. Does anyone know if there is another solution. When they put my brain shunt in I traded the headaches for seizures. The seizures are easier to live with than the headaches but I cant help but wonder what will happen if they have to go back in the brain again. I have to have another lp, (of course after havidng so many of these, they just get more painful) because this is the only way they can prove for sure that my shunt is failing. I am very frustrated and also scared. I am having memory issues as well. Does anyone have any advise? If you can help me in any way I would appreciate it.
Anonymous, I am so sorry that you are having such a hard time with PTC. I'm afraid I am not too much help. I have been very lucky and the diamox helps me. I am only taking one per day now and it is handling it nicely. I have heard alot of stories similar to yours though. My doctor told me that weight loss is the only thing that is supposed to alleviate it entirely.
I am not sure when you wrote this comment. I would be happy to email you as I can relate to some of what you are going through. Don't know how much help I can be but if you need someone to talk to, then I am here. You can email me at grammytofive@yahoo.com. Hang in there. Hope to hear from you soon.
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