|Subject: Hello Everyone Wed Nov 14, 2012 10:11 pm|| |
Hello Everyone, I am so glad I found this site!! Just being able to talk to people who understand & know what it feels like having IH is going to be so helpful to me. I wish I had looked for support sooner but you know how it is the emotional, painful, angry, debilitating, depressing, one good day then the next 3 days you pay for it, poker face, changing of meds, side effects, extreme fatigue, roller coaster train?! I will share with you how my life has changed since June 2010. I have survived Trigeminal Neuralgia, Chiari Malformation Type 1, (4 crainiotomies) Sheath Fenestration surgery in both eyes (losing my sight because of IH) to many lumbar punctures to count. Due to the IH I have been on every medication from A-Z, my pain is so intense I am on Dilauted & it just takes the edge off! I am getting a lumbar shunt next Tuesday the 20th. My Dr. calls me the "rare bird" because he has never had a patient with all 3, the TN, Chiari & IH. So naturally with my luck there is a part of me that has this wall up of defense. I guess you could say that is always ready for the other shoe to drop, or waiting for a curve ball. It was my 1 year wedding anniversary when I was diagnosed with TN. I am praying so hard this shunt will give me relief from this monster in my head.
|Subject: Re: Hello Everyone Thu Nov 15, 2012 10:26 pm|| |
Hugs! I hope you find relief and feel well soon!
|Subject: Re: Hello Everyone Fri Nov 16, 2012 6:41 am|| |
Hello DJBrown and
Looking forward to hearing more about your story.
I had my lp shunt installed November 1st of last year. It was a great idea for me, hope the shunt works out well for you too. It has been an ongoing thing with mine, we are still trying to dial it in for the best results. I have a programmable valve with an antisiphon guard. The initial adjustment was too low, so it was raised. We have lowered it a few times and each time I do get to feeling better. so you hang in there.
Boy, having TN is no fun. I have PHN (Post Herpetic Neuralgia), which is TN's little brother. What do the docs think caused your TN?
|Subject: Re: Hello Everyone Fri Nov 16, 2012 5:24 pm|| |
Hello and welcome to the group, we are glad you found us too!
You certainly have been through the mill, but from your post you come across as very determined and a fighter to boot. I had the LP shunt to begin with, and had mine for 5 years, in that time I had no symptoms at all and it saved me from losing the rest of my sight, as I have tunnel vision and no depth perception due to the IIH. I had it revised because I was having mobility problems because of it, which is rare, I was just in that category. That aside I don't regret it because it worked, and I was able to return to work afterwards, so there is a great chance it will work for you too. I'll have my fingers crossed for you.
|Subject: Re: Hello Everyone Fri Nov 16, 2012 10:16 pm|| |
Welcome to the group! I have IIH and Chiari Malformation along w/ other random diagnoses, so I completely understand. I've had my lumbar shunt since 2002 and it's made a HUGE difference, although I'm surprised they're doing the lumbar w/ your Chiari I developed mine after shunt placement). I've had a few revisions, but it did save my vision. And, I've been able to maintain full time employment, even with the surgeries. I'm not saying it's been easy, but it's definitely a better quality of life than without it. I will definitely be keeping my fingers crossed for you..please keep us posted on your progress and let us know if you have any questions or concerns.
|Subject: Re: Hello Everyone || |
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