Reply
 
Thread Tools Display Modes
Old 01-15-2020, 11:32 AM #1
mully024 mully024 is offline
Newly Joined
 
Join Date: Jan 2020
Posts: 1
mully024 mully024 is offline
Newly Joined
 
Join Date: Jan 2020
Posts: 1
Default Officially diagnosed with a CSF leak yesterday, looking for insight

o I was officially diagnosed with a leak yesterday. I had suspected it based off my symptoms (which I have been dealing with for 10 years and had seen 60+ doctors for), but I had never heard of CSF leak until about 4 months ago. I reached out to Dr. S at Cedar and he referred me to someone local here in Boston. They did a special sequence full spinal MRI and found the extradural pooling pretty clearly spanning 6 ‘segments’ in the upper thoracic/cervicothoracic junction.

I am honestly a bit in shock, wasn’t really expecting them to find it right off the bat. They think it is a ‘slow steady leak’ based off my symptoms and other imaging. I was presented with a couple options and I was hoping to get some insights from people who have gone through this.

Option 1: Do a patch in that general area and see what happens. However, they think the leak is in the front of the spine and because of this not super confident a general patch will be curative. I am terrified of getting the patch as you can’t be under, they want me awake to let them know when I start feeling significant pressure as this is how they gauge when to stop. I’d like to hear more about peoples experience with the patch?

Option 2: Do a digital subtraction myelogram, to hopefully pinpoint the exact source of the leak (though not guaranteed). This would allow them to get the needle as close as possible to the leak site which they said would greatly increase the success rate. It would also be necessary if they determine surgery is required per the NS. My concern with this are multiple...its under general anesthesia, they need to stop the breathing in order to do, I’ve never had a lumbar puncture and am worried about the after effects and creating another hole, and I am concerned about long term side effects from the injection dye… So I wanted to see if anyone has had this done?

Thank you in advance.
mully024 is offline   Reply With QuoteReply With Quote
Reply

Tags
csf, diagnosed, effects, leak, patch

Thread Tools
Display Modes

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
Just diagnosed Yesterday Aviator1 Myasthenia Gravis 4 02-14-2016 07:03 PM
Diagnosed yesterday Grace1 Parkinson's Disease 10 11-01-2015 08:30 PM
HELP! Scared...Surgery today diagnosed yesterday rhibbing New Member Introductions 15 09-25-2009 02:38 PM
diagnosed yesterday sinic New Member Introductions 7 06-21-2009 10:44 PM


All times are GMT -5. The time now is 07:58 AM.

Powered by vBulletin • Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2020 DragonByte Technologies Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2020 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.