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Forum: Cerebrospinal Fluid (CSF) Leak 03-23-2009, 10:27 PM
Replies: 3
Views: 689
Posted By repeat leaker
Re

Is this a cisternogram or a myleogram? They are two different procedures? Or are they doing a mylo followed by a cisto?




For me getting mylos was never fun. I always had pressure in my...
Forum: Cerebrospinal Fluid (CSF) Leak 10-10-2007, 08:33 PM
Replies: 2
Views: 1,220
Posted By repeat leaker
Topamax

Hey everyone - been a long time.

Question for anyone here - anyone that has a diagnosed leak currently on or have been on Topamax?

I have been on 100mg twice a day along with Oxy twice a day...
Forum: Cerebrospinal Fluid (CSF) Leak 02-04-2007, 08:01 AM
Replies: 14
Views: 2,055
Posted By repeat leaker
So sorry to hear your story. My...

So sorry to hear your story.

My recommendation is to NOT have that dr. benefit at all from publishing your case. He is using you and clearly does not have much knowledge in this area.
CSF leaks...
Forum: Cerebrospinal Fluid (CSF) Leak 01-19-2007, 06:37 PM
Replies: 9
Views: 1,367
Posted By repeat leaker
Well my story this week is so pitiful it is...

Well my story this week is so pitiful it is actually funny. It truly shows the challenges with this condition.

On Tuesday I went to a pain clinic to try and figure out a way I could better manage...
Forum: Cerebrospinal Fluid (CSF) Leak 01-15-2007, 02:28 PM
Replies: 30
Views: 3,638
Posted By repeat leaker
Christy, Funny you should ask - I have an...

Christy,
Funny you should ask - I have an appointment tomorrow with a pain clinic. I have used Vicoden, doesn't do a ton for the headaches but does help my neck and back pain.

I will share any...
Forum: Cerebrospinal Fluid (CSF) Leak 01-11-2007, 09:11 AM
Replies: 7
Views: 1,162
Posted By repeat leaker
I have been having a lot of facial pain,...

I have been having a lot of facial pain, associated with neck pain and positional headache. I was curious to some insight into trigeminial neuralgia. What I have read said this is usually short...
Forum: Cerebrospinal Fluid (CSF) Leak 01-06-2007, 07:09 AM
Replies: 12
Views: 22,291
Posted By repeat leaker
CSF Leaks presenting Sinus related symptoms

Sorry for another post....I have lots of questions as I am grabbing at some straws since I have not been getting better.

Does anyone have any experience or know about CSF leaks causing symptoms...
Forum: Cerebrospinal Fluid (CSF) Leak 01-06-2007, 06:31 AM
Replies: 15
Views: 3,649
Posted By repeat leaker
Jim, How did you know the fluid out of your...

Jim,
How did you know the fluid out of your nose was CSF fluid? Sorry to be gross, but can you describe it, etc..?

Thank you and so sorry for all your health issues and hope you have a quick...
Forum: Cerebrospinal Fluid (CSF) Leak 01-04-2007, 09:06 AM
Replies: 12
Views: 5,384
Posted By repeat leaker
Thanks so much for the great ideas. I...

Thanks so much for the great ideas.

I recently had an MRI of my cervical area due to the left arm pain...I still don't have the official reports but wording from the doc was "slight narrowing". ...
Forum: Cerebrospinal Fluid (CSF) Leak 01-03-2007, 04:59 PM
Replies: 12
Views: 5,384
Posted By repeat leaker
Thanks for the replies. I have been struggling...

Thanks for the replies. I have been struggling lately and not sure why. About a month ago I had 2 high volume blood patches, 7 days apart. Since then I have still continued to have left arm pain,...
Forum: Cerebrospinal Fluid (CSF) Leak 01-02-2007, 05:26 PM
Replies: 12
Views: 5,384
Posted By repeat leaker
Cranial vs. Spinal CSF Leak

Does anyone know how to determine between a spinal CSF leak and a cranial CSF leak? What are the differences in diagnostic tests? Is it possible to have a spontaneous cranial CSF Leak?
Forum: Cerebrospinal Fluid (CSF) Leak 12-22-2006, 09:41 AM
Replies: 77
Sticky: Useful Websites
Views: 19,025
Posted By repeat leaker
Many on this forum have asked about blood patch...

Many on this forum have asked about blood patch efficacy. I found this article that I thought would be very helpful, and it was free to access so I thought I would share.

For those of us having...
Forum: Cerebrospinal Fluid (CSF) Leak 12-22-2006, 09:41 AM
Replies: 0
Views: 1,441
Posted By repeat leaker
Epidural Blood Patch Efficacy

Many on this forum have asked about blood patch efficacy. I found this article that I thought would be very helpful, and it was free to access so I thought I would share.

For those of us having...
Forum: Cerebrospinal Fluid (CSF) Leak 12-22-2006, 09:14 AM
Replies: 77
Sticky: Useful Websites
Views: 19,025
Posted By repeat leaker
Here is a website that will allow you to search...

Here is a website that will allow you to search the database of journal articles using many search criteria.

Many of the journals will let you view the abstract, others you need to pay to view the...
Forum: Cerebrospinal Fluid (CSF) Leak 12-19-2006, 09:32 AM
Replies: 10
Views: 1,776
Posted By repeat leaker
The theory of the connective tissue disorder is...

The theory of the connective tissue disorder is merely that - a theory. Dr. Schievink, in a published paper, and based on meeting with him, has indicated this is most likely the cause of my (and my...
Forum: Cerebrospinal Fluid (CSF) Leak 12-18-2006, 09:04 PM
Replies: 4
Views: 1,243
Posted By repeat leaker
Congratulations and best of luck on your...

Congratulations and best of luck on your recovery. Any tips?
Forum: Cerebrospinal Fluid (CSF) Leak 12-18-2006, 02:43 PM
Replies: 10
Views: 1,776
Posted By repeat leaker
I have always gotten "reverse headaches", which...

I have always gotten "reverse headaches", which are headaches that are intense upon lying down, even to the point of waking me up at night. When I get up the headache goes away. These headaches...
Forum: Cerebrospinal Fluid (CSF) Leak 12-18-2006, 10:45 AM
Replies: 10
Views: 1,776
Posted By repeat leaker
Yes, if I am not better by New Years I will make...

Yes, if I am not better by New Years I will make a trip to LA to see Dr. Schievink. I am hopeful that my patch is healed and I just need to force in fluids???..... I have been out to LA twice in...
Forum: Cerebrospinal Fluid (CSF) Leak 12-17-2006, 05:15 PM
Replies: 10
Views: 1,776
Posted By repeat leaker
Quick update - I just got back from 2 weeks in...

Quick update - I just got back from 2 weeks in Chicago. I am feeling ok, still having some headaches. Good news is I am also getting some headaches lying down now also. Just going to take it...
Forum: Cerebrospinal Fluid (CSF) Leak 12-11-2006, 09:05 PM
Replies: 10
Views: 1,776
Posted By repeat leaker
Repeat Leaker Update

Thought I would provide and update on my leaks:
I am in Chicago and had a multi site injection blood patch by Dr. Shaibani at Northwestern. I have never felt better after a patch until I had an MRI...
Forum: Cerebrospinal Fluid (CSF) Leak 12-03-2006, 10:21 AM
Replies: 21
Views: 2,580
Posted By repeat leaker
I thought I would provide a few thoughts... ...

I thought I would provide a few thoughts...

First, something that I think is being looked at more and more with leaks is not only the patching/glueing/surgery but also post procedure volume. Does...
Forum: Cerebrospinal Fluid (CSF) Leak 11-28-2006, 09:13 AM
Replies: 6
Views: 1,817
Posted By repeat leaker
Thanks all...I went to ER yesterday. Cat scan of...

Thanks all...I went to ER yesterday. Cat scan of back was normal, will have to have an MRI this week. My arm and back are both hurting pretty good, mobility in my neck is decreasing. Cant look...
Forum: Cerebrospinal Fluid (CSF) Leak 11-21-2006, 07:00 PM
Replies: 6
Views: 1,817
Posted By repeat leaker
Help with Potential Leak Symptoms

I am having left arm symptoms, not sure if it is associated with a leak. It is in my left arm, tingling and pain from elbow down, sometimes in the shoulder.

Having mild headaches, not to the...
Forum: Cerebrospinal Fluid (CSF) Leak 11-21-2006, 06:55 PM
Replies: 2
Views: 2,050
Posted By repeat leaker
Having almost a dozen blood patches I would say...

Having almost a dozen blood patches I would say you should know by now. When my patches have worked I have known almost instantly, in some cases I knew instantly but gave it a week just to make...
Forum: Cerebrospinal Fluid (CSF) Leak 11-03-2006, 10:14 PM
Replies: 16
Views: 5,359
Posted By repeat leaker
The doc at Northwestern is Dr. Ali Shaibani. ...

The doc at Northwestern is Dr. Ali Shaibani.

According to Janelle RN, Dr. Shaibani's nurse (312-695-4050) (fax: 312-695-4075) he personally diagnosis traumatic or spontaneous CSF leaks and...
Showing results 1 to 25 of 29

 

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