CSF leak and lumbar drains

[hedgieboy]

My husband had CM surgery on 3/10/14.  He developed a CSF leak on 3/18/14.  Admitted on 3/19/14 and lumbar drain placed on 3/21/14.  He is to have the drain for 3 days and possibly will have it pulled if symptoms subside.  Do they usually repeat the MRI?  Can the MRI show the area of leakage?  How long does it take for the pocket of fluid that is outside the duraplasty to reabsorb?  What is the  most common reason for the duraplasty to leak?  He has a bovine patch and titanium plate.  Why do the CSF leaks return?  Did you use a hospital bed when you came home?

Would you have the surgery again?

Thanks!

[adventurer53]

Oh my! He has been through so much! I get frequent spinal fluid leaks and have had a drain in but there are many other serious complications here with the infection! Praying for wisdom for both of you and the doctors! Sometimes it helps just a little to know that others care.

[selmaS]

  Hi....IMHO I would look into what type of dura patch was used and see about replacing it...as this all can be rejection of the patch.

Shunts can fail and lead to numerous surgeries....b4 I would try either type of shunt, I would look into if it is an issue with the patch.

I have seen this happen b4 when the patient had EDS and was not DX'd b4 surgery...and I strongly believe from all I have seen the others go thru that the dura patch or ne foreign matter that is places like a shunt can cause the body to reject it and the issues continue even after one is placed....again JMHO and I am not a medical professional.

[hedgieboy]

Thanks for your responses.  The saga continues. After leak #2 and overstitching and discharged home on antibiotics....he developed bad headaches and the "bulge" on his neck was larger than ever! Red and nasty and he had a low grade temp. In ER had spinal tap and CT scan. WBCs in CSF, glucose and a little protein. Diagnosis, CSF leak and bacterial meningitis.  Waited two days for culture results and antibiotic coverage.  Then a lumbar drain placed. Draining 20 cc every 203 hours. Tolerating it well...but not a significant change in bulge and still looks so "angry".  Dr. in today. Will keep drain in until Monday and offered one of four things to be done on Wednesday of next week.  1. VP shunt, 2. Temporary LP shunt for 2- 3months, 3.  Biweekly LPs in office or 4. Return to surgery. The NS is very much against a return to surgery - too many risks of "undoing" what was already done - which he has not had any chiari headaches since surgery.  So, we were sold on the LP shunt. Then the Inf. Dz. Dr. came in and was more a proponent of the surgery - due to the risk of infection.  However he did agree that the LP shunt has less infection risk than the VP shunt.  I just want this to be over and our life back..... this was not to be this way!!  7 weeks post-op and almost two weeks of those have been in the hospital (three different admissions). Any suggestions???  They think he has IICP..... are there other causes of IICP that should be ruled out before placing a shunt?

Thanks!

[selmaS]

  Hi....I would suggest u chat with zygy2 and socerro as they both dealt with these issues....and not all CSF leaks have adverse effects....as some the leak may be slow and steady so no typical headache and nausea or vomiting.....so  do not assume since he is not having symptoms....

I would call ur Drs office and ask what they suggest  or prefer he does to help with this situation,,, as far as how long it can go on...again I have to defer to zygy2...as hers went on a good long time....it will depend on the Drs...as a leak can seal by itself....and that is the preferred option...next is a blood patch and if that does not solve it, surgery to try and locate and stitch close the leak....but since they are so difficult to find, the blood patch should help.

Keep us posted on how he progresses....

[AKC_75]

I can't help with your other concerns but I have shunts and had a spinal fluid leak after a surgery to repair the shunt. And another time, had surgery cause the shunt was clogging up This is what I know (grant it my case was a bit diff).....

When it was just clogging up, my surgery was not considered an emergency so, it was several days later....however, I was told to sleep with head elevated & if I started to have projectile vomiting, go to ER ASAP.
When I had spinal fluid coming out from incision site, it was an emergency and I was in surgery the following morning!!!

So, my advice is get to your Dr ASAP and in the meantime, keep head elevated.
Hydration is not a problem...spinal fluid is not the same as the fluid that hydrates a person. When I was leaking, the Dr told my mom that you make approx 1 cup of spinal fluid per day and you continue to do so regardless of leak or no leak.

[hedgieboy]

  Continuation of my original post:
My husband ended up having the lumbar drain for 5 days and was in the hospital for 7 days. He had greater than 300 WBC in his CSF at discharge but his cultures ( 7days after discharge) showed no growth of bacteria - so no meningitis  :).  He came home and was doing really well. He was on steroids and pain meds.  The fluid in his neck around the incision would "shift" but did not get larger.  Stitches were still in. He went back a week after discharge to have the stitches removed (now 1 day shy of a month post-op). The insertion sites of the stitches were very red - reaction from stitches being in too long. Incision looked great. All healed. I thought the bulge in his neck looked a little bigger, but no symptoms from pre-chiari or from the fluid in his neck and back of his head.  The stitches were removed and the next day he had a drop and then another from the incision....on the way back to the dr. office, he turned his head and the fluid started pouring out of the small hole in the incision.  It was confirmed to be CSF. We were hoping that it was the fluid under the skin and next to the skull from the first leak - his "bulge" went down significantly while there was active leaking. But that is not known.  Once the PA  re-stitched the area of the leak and a few inches above and below, then it stopped leaking. But, by the time he got home, the bulge was back, no leaking from incision and no headaches.  The bulge is a little bigger today. It is quite large overall, but he does not have any symptoms and does not have a headache. His demeanor is sort of "flat" but he is frustrated that this keeps happening.  

He sees his surgeon in two weeks (an original appt.). Our frustration is that we don't know when "enough is enough" since he is currently asymptomatic.   They want us to watch it and call immed. if it leaks or he gets any symptoms of concern.  Does this sound right?  I do not want him to have unnecessary surgery or a shunt if not needed, but this CSF is not reabsorbing and I get worried that it can't be ok to have this in your tissue. Your tissue is not meant to have CSF in it!  

Any suggestions would be most appreciated.  We are in Pittsburgh, PA and are lucky to have been able to choose between two Drs. who perform the surgery. (one is supposedly world-renown).   At what point do we get a second opinion?  What is the longest anyone has gone with an unresolved, asymtomatic CSF leak until intervention was done?  Should he be laying flat and drinking lots of fluids. The PA did not say that... but seems it would help.

thanks!

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DH is going thru this post op as I know a leak is not pleasant...especially on top of this surgery.

As far as repeating the MRI that is up to the individual Dr and if he feels it is needed.....and it also depends on how ur DH is doing,

An MRI does not always show  a CSF  leak....

We are all different as to how long it takes for the fluid to reabsorb....
And can also depend on y the leak occurs...

A failed patch can be the result of a weak patch, an infection or rejection of the patch....If ur DH has ehlers-danlos and was not DX'd prior to surgery that could explain rejection or infection to a patch made of nething other then his own tissues....

A  leak can return if it is not completely patched, or the patch fails at a different location....or the patient is rejecting the current patch.

I did not use a hospital bed, but I did use a recliner...it worked great for me....

  Yes....my surgery was almost 5 yrs ago and I have seen improvement each yr since surgery.....

  Having other related conditions can cause some to think surgery failed as they are not aware of these other underlying conditions....so, if one continues to experience symptoms they should look into what else may be going on, and not always assume it is just the Chiari at work.

Keep us posted on how ur DH is progressing <3