Third Blood Patch Not Helping

[adventurer53]

So here I am, three and a half months later, three blood patches later and many weeks of laying flat. It is labled a spontaneous leak and we cant do an mri or myelogram- spinal cord stimulator and damaged Dura. I see my Neurologist this Tuesday at Mayo. I'm at my wits end and am afraid he will tell me the hole sealed and your nerves are so damaged that they just keep firing. I had this happen a couple years ago and that's what they said. It did end up getting a lot better. It only flared when I was under a lot of stress. Can anyone else relate and what did they do for you???

[selmaS]

Hi adventurer53.....I am so sorry you are still dealing with this.....I can not recall if you had EDS ruled out and what type of dura patch you might have...I know the patch can be an issue with continued leaks.
I know we have had other members in the past with continued issues and it was related to the dura patch and they had EDS that was not DX'd.

[blc1971]

I'm a 44-year-old male who had a lumbar puncture in the ER a few months ago. I had the typical headache afterwards and went back to the ER a week later for a blood patch. For over three months following the blood patch, the headaches continued. They were particularly painful mid-day for some reason, and it was extremely painful when I coughed, sneezed, or bent over. I went to several doctors, all of whom said there was no sign that spinal fluid was still leaking. They wanted to run test after test, which I didn't do, and at least one of them thought I was crazy, I'm sure. Well, I'm happy to report that -- FINALLY! -- after three months, my headaches are disappearing. I still feel them from time to time, but the pain is very faint and much less frequent. It seems my body is finally healing. I had a difficult time finding any information about my condition and my doctors didn't know what to think either, so I wanted to share my story. I hope it helps someone else out there.

[selmaS]

I had issues with my voice b4 surgery...not since....goodness I have no idea

  Do u mean a stent? u have stim....so I am confused...and not sure how much more u could leak if u have been leaking and the blood patch is not helping....my concern is that it could be the patch failed and until they go in they will not know and u can continue to leak and feel poorly as a result.

Have u tried a Diff Chiari Dr to get a diff opinion? Even if u just send copies of ur past and current MRI's and some history and get a consult ....a diff view may help.

[adventurer53]

Thanks for your comments. I too have had a drain in and had ten days done for that. The first hole healed and the one to put the drain in didn't. It did however in time heal. Selma I still haven't talked to a doctor about Ehlers-Danlos  but I should be able to bring it up with my Neurologist this Tuesday. What I have been having is strictly a blood patch (from my blood) put directly into the area they believe the leak is coming from. A few years ago we got to the point of almost taking the stim out but we did the drain instead. Now that doctor is saying that I should not have him remove it because he's afraid of multiple leaks as it's coming out. He's also unsure if he could put if back in and give me the good coverage I have now for nerve pain in the legs and feet. No easy answers to this spontaneous leak. Today I am transitioning to upright and symptoms are coming back. Anyone els have a hoarse voice along with the other symptoms? I get that too and when I lay down my voice clears.

[selmaS]

  Hi...may I ask what type of dura patch did they use on u?

And did they rule out Ehlers -Danlos?


A blood patch will not work if the hole is too large....or if the patch is failing....

It may be worth it to remove the stimulator to know for sure....???

[linnielou232]

I can tell you a little of my experience because I had a problem with leaks also.  After my 2nd surgery which didn't work either I went into ICU and they put a drain in my lower lumbar and drained my spinal fluid out for 10 days and I layed on a 45 angle at this time to keep the fluid off the patch   Then they turned it off to see if it would seal.  Sad to say it didn't and I had to go in and have a 4th surgery and at this time he used muslin patch over the dura patch.  It was a long road, but this worked.  I don't want to scare you any, but this was my experience.  Maybe they could try the drain on you before having to have another surgery.  I have you in my prayers.  I know how discouraging this can be.  Please keep us updated.
Linda :)