Next step after blook patches and spinal cord drain

[adventurer53]

To: Help with continued CSF Leak!!!
I have had four blood patches, one fibrin glue patch and a spinal fluid drain in for five days in the hospital since Feb. 2011. I just had the last blood patch done yesterday at the drain site, as we believe that is where I am now leaking from. Can anyone here tell me what you had done when these things didn't work? They are talking about surgical repair of the site, but finding the site is hard as I can't have an MRI because I have a spinal cord stimulator in, and the Dr's are thinking maybe I have thin dura and any holes will be hard to seal, even the needle from the repair. I have a lot of scar tissue from surgeries inside the spinal cord for my tethered cord. The neuro-radiologist mentioned doing a puncture behind the ear into the cord to insert dye to find the leak. That might be the next step. For now I have to stay flat for three days here in the motel before I can travel home (six hours). I really trust the team of doctors here at Mayo that are working on this, they do say it is a complicated case.
I'd appreciate any helpful information or ideas. God is still in control of my life and I know He will be with me through this journey!

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Sorry to hear about your prolonged hospital course. CSF leaks can be quite frustrating for the reason you mentioned – identifying the leak. If you cannot have an MRI, you may benefit from a CT myelogram.

Many times, several blood patches may be required. Reports suggest that up to 4-6 may be necessary. If you are not responding to the blood patches, surgical repair is usually effective.

Do you know why you have the CSF leak? Was there a surgery performed on your back, have you had head injury, have you had a lumbar puncture (i.e., a spinal tap)? These may guide the workup and localizing the source of the leak.

Thank you for using the forum, I hope you find this information useful, good luck.

[adventurer53]

Thank you for your helpful ideas. My leak started after a CT/myelogram, but not until about five days later when I had rotator cuff surgery. It presented when I came out of that surgery. CT showed a pseudomeningocle at the site of the puncture. That is the first site that they treated with three blood patches and fibrin glue. Now we think that site healed, but we now treated the drain site with a blood patch. Symptoms have returned. The Dr.'s, understandably, don't want to put more holes in that dura, as I have also had problems with two other leaks after surgery near the cord.
Symptoms are positional - I can wake up in the morning thinking I'm just fine, but then when I'm up for about an hour, the head, ear ringing,numbness on left side of face, etc. kick in.
This has been going on for ten weeks now. I've had an MRI of my head done with special precautions due to my stimulator. It showed mild brain sag. The neurologist agreed it appears to be a CSF leak. My surgeon is trying everything before a surgical repair because of the amount of surgery I've had inside and outside the cord in this area. The nerves have ad-heard to the dura and damage could occur as well as it could cause more leaking because of the needle to do the repair. Now we have the complication of which site is it leaking from? There's also hardware in that area from two complicated eight hour fusions last August and Sept. - the first one failed, cage collapsed and hardware came dislodged. I just want to get batter so I can enjoy some activities and get back in shape - all this started a year ago with a bad trip and fall at work - I'm a teacher- and was responding to an emergency when I tripped on the leg of a table and took a belly flop across the floor. I already had multiple spinal cord surgeries, but this shifted the vertebrae, tore the shoulder, etc. Sorry for the rambling. Have you heard about doing the puncture in the neck, then the contrast drains down and they can find the leak? That may be my next step.