advertisement
Reply
 
Thread Tools Display Modes
Old 02-01-2011, 06:01 PM #1
LuckyPeter LuckyPeter is offline
Junior Member
 
Join Date: Feb 2011
Posts: 7
10 yr Member
LuckyPeter LuckyPeter is offline
Junior Member
 
Join Date: Feb 2011
Posts: 7
10 yr Member
Smile My Story

Yes, I consider myself gosh darn lucky!

After bugging my FP about massive headaches slightly more than 2 1/2 years ago - he said, well, if you don't improve over Christmas come and see me and we'll get you an MRI. My pressure was so low that the Dura was peeling off from the inside from the skull and of course bleeding... He gives me a call and says "I don't want to alarm you, BUT, I've already called the ER and they are waiting for you - how fast can you get there?" A month later I was deemed well enough to leave - meaning they didn't know what in the heck to do with me - I had HUGE blood patches up and down my back - it looked like a war zone! Weeks went by and I kept on feeling worse and worse. We got wind of a guy in CA and started the process of getting documents together for him to do a desk top review. Then our neurologist did a referral up to Duke Univ. The neurologist up there said - I can't help you BUT - there is a lady in this other department that specializes in this exact thing. WHOA!!! Did she ever specialize... caring, compassionate, she used a small amount of dye to exactly map the location of the leaks. In my case, she could only close 28 leaks that first day - it took five hours. We were both exhausted. I've been on her table a total of 12 times in the past 18 months. Some of those have been to just to check pressure lately.

I never thought I would say this because it's been a living HELL the past 23 months. Yes, I am luckyPeter - I am alive - some day I'll get to see grandchildren -- I am disabled - but I manage -- I live in constant pain - but it is controlled by medication.

Pls let me know if you would like names and contact info...
LuckyPeter is offline   Reply With QuoteReply With Quote

advertisement
Old 02-20-2011, 12:15 AM #2
chiarichic chiarichic is offline
Junior Member
 
Join Date: Feb 2010
Posts: 33
10 yr Member
chiarichic chiarichic is offline
Junior Member
 
Join Date: Feb 2010
Posts: 33
10 yr Member
Default Your Story

Lucky,

Thanks for the great positive story...so many of us are here because we need encouragement and hope... and I found some in your post!!
And I am so thrilled that you found a doc who listened!!

chiarichic
chiarichic is offline   Reply With QuoteReply With Quote
Old 11-06-2011, 02:52 PM #3
sparkle sparkle is offline
New Member
 
Join Date: Nov 2011
Posts: 2
10 yr Member
sparkle sparkle is offline
New Member
 
Join Date: Nov 2011
Posts: 2
10 yr Member
Red face I also have bleeding in the brain

Quote:
Originally Posted by LuckyPeter View Post
Yes, I consider myself gosh darn lucky!

After bugging my FP about massive headaches slightly more than 2 1/2 years ago - he said, well, if you don't improve over Christmas come and see me and we'll get you an MRI. My pressure was so low that the Dura was peeling off from the inside from the skull and of course bleeding... He gives me a call and says "I don't want to alarm you, BUT, I've already called the ER and they are waiting for you - how fast can you get there?" A month later I was deemed well enough to leave - meaning they didn't know what in the heck to do with me - I had HUGE blood patches up and down my back - it looked like a war zone! Weeks went by and I kept on feeling worse and worse. We got wind of a guy in CA and started the process of getting documents together for him to do a desk top review. Then our neurologist did a referral up to Duke Univ. The neurologist up there said - I can't help you BUT - there is a lady in this other department that specializes in this exact thing. WHOA!!! Did she ever specialize... caring, compassionate, she used a small amount of dye to exactly map the location of the leaks. In my case, she could only close 28 leaks that first day - it took five hours. We were both exhausted. I've been on her table a total of 12 times in the past 18 months. Some of those have been to just to check pressure lately.

I never thought I would say this because it's been a living HELL the past 23 months. Yes, I am luckyPeter - I am alive - some day I'll get to see grandchildren -- I am disabled - but I manage -- I live in constant pain - but it is controlled by medication.

Pls let me know if you would like names and contact info...
Thank you for your post! How are you now? I also have bleeding, so I need to seal these leaks in order to be able to be upright at all. Was Dr. Gray able to seal all of your leaks? Thanks
sparkle is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
New here :)...my story GypsyQueen Peripheral Neuropathy 11 09-25-2010 06:49 AM
EMG tell me your story. Dejibo Multiple Sclerosis 6 05-26-2010 11:18 PM
Social Security News: Powerful TV Story On Backlogs (VIDEO Story) Stitcher Parkinson's Disease 1 07-14-2008 10:55 AM


All times are GMT -5. The time now is 06:14 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.