Questions regarding CSF leak,meningitis and treatment options

[Cheryl R]

Hello.    Yes unfortunately I did have this surgery just a year ago this month.     It came 2 weeks after my translab for a facial neuroma.        I did not then have to have a lumbar drain.    They went in and did the surgery which took much less time than the previous surgery.    They put the fat in and also removed the eardrum and put muscle over the area.        it was done on Fri night and I was not in ICU this time and home on Mon.             Felt afterwards like I had from the translab and recovered well.                      They think my leak was from a new product the hospital had started using to hold things in place in there but it didn't work well and 3 people ended up with leaks.    They then went back to the previous more expensive product.           
Not fun to have to go thru 2 surgeries.                                 Cheryl R

[TP]

Hi Diwas:

I had two CSF leak repair surgeries. I had the lumbar drain put in prior to the second CSF leak repair surgery. The CSF surgery is not that bad and in my particular case recovery was quick. They did not use any fat tissues (wish I had that option) to pack back the leak, I believe they used some type of mesh and packed my head real tight.

Also, when I had mennigitis I know I had heparin shocks everytime they administered my antibiotics. In addition, when I was sent home with a pic line, I self administered two separate antibiotics three times a day and had to insert a heparin shot in my pic line prior to each antibiotic. I recall my home health care nurse who taught me how to administer the antibiotics that it was real important I never forgot the heparin shots. I recovered nicely from the menigitis which was not fun!

If your Dr recommends to sleep with her head in an upright position, I strongly recommend it. It is not real comfortable but I do think in the long run it helped. I propped pillows up around me and slept in a big chair for about a month.

I sure hope her surgery goes well this Friday. Our prayers are with you!

[Diwas]

Smrity had a successful surgery to re-pack the area that was leaking CSF fluid.  The ENT surgeon took belly fat from her c-section incision and packet the exposed air cells on the left side of her head. Another incision was made on the back of the left ear.  The first night after the surgery was very painful for her. After 3 more nights in the hospital she was allowed to go home. She is now on oral blood thinner medication for treatment of her clots.

She is visiting the hematology clinic every week to check on her clotting factor.  She is going back to the neurosurgeon this week for a regular checkup and has appts. with the neurology doctor in a couple of weeks.

Being home and and being in a familiar surrounding has helped her on the recovery process.

Thank you all for your prayers and support.

Diwas

[Gennysmom]

So glad to hear that!  This is a life altering event on it's own, and to deal with all the extra complications is exhausting!  Please keep letting us know how she's doing...I hope she can finally now get on the regular road to recovery....it does get better, albeit slowly.  I had the leak, but just the drain (not the second surgery), I'm amazingly 10 months out, and I was just thinking how good I feel even compared to 4 months ago...she'll get there soon as well!!!!

[MCLARKE46319]

My daughter Meagan had 2 CSF leaks and then had two additonal surgeries to go in and repair where the leak sprang from.  Her tumor was the size of a tangerine.  Her initial surgery lasted 13 hrs. She was is ICU for a month while all of this was going on.  They put a lumbar drain in but eventually because it kept leaking put in a shunt going from her back around to her stomach.  That seemed to do the trick.  While she was in there she also had pneumonia, a blood clot which she had a little screen put in her leg so that if the clot travelled it would not go to her heart or lungs, meningitis and was on two really strong antibiotics that made her itch like crazy.  She couldn't swallow and they put in a peg tube.  This all happened Jan 3rd until she came home in February.  She is starting back to work tomorrow even though her face is still paralyzed and she has eye issues.  What I'm trying to say is that it does get better.  While you are going through this you think that it will never end.  It gets very discouraging but there is a light at the end of the tunnel.  Hang in there and come to this site often because it really helps to read what everyone is going through.

[Diwas]

I am updating Smrity's status on this same thread.

Smrity is recovering well at home. Since getting back from the hospital from the last surgery to pack the area of CSF leak, she has been slowly recovering and getting strength back.  She is only taking a blood thinner and seizure medication for now.  She is controlling her diet to keep her cumidin?? ( clotting levels ) constant between 2 and 3.  her neurosurgeon was satisfied with her recovery when we saw her the last time. She has had several weekly visits from her occupational therapist and physical therapist. Nowadays she walks on the treadmill for 14 mins.  Her balance is not the greatest but she walks around the house on her own.  She did lose hearing on the side of the AN.

Besides the neurosurgeon, she is also being seen by an neurologist to look into her seizure situation.  Her appointment is next Tuesday.  She is also being seen by a hematology doctor for any blood abnormality.  There is a venogram being setup next month to look at the clot. She still has the left facial paralysis but hopefully with time, this will go away.



Diwas and Smrity.

[mykey]

Hi.  This is mykey's wifey, Lisa.  Well, we've been through alot since his translab surgery 1 month ago.  Surgery went well, then right before we went home a week later we noticed a wetness around his incision area.  It proved to be a CSF leak and they put in a EVD drain at the top of his head (lumbar drain won't work with mykey because he has bad arthritis in his lower back.)  The drain stopped the leak at the incision site and was sent home 8 days later.  He was recovering well at home, but a week later he began having headaches...after 2 days he got one that would not go away and was very severe.  He started getting the shakes and vomiting, so our neurosurgeon told us to come into the ER to check it out.  We were concerned that it was menengitis, but that has since tested negative.

The CT scan showed alot of air on the brain, which was a direct result of an inner CSF leak and causing the headaches.  They said it was coming in through his eustachion tube, so that afternoon they did another surgery.  They went back in through the original incision, removed his ear drum (he wasn't using it anyway) and stitched up his eustachion tube.  They removed all of the original packing and repacked it with more fat.  He has another EVD drain in the top of his head.  A subsequent CT scan showed all air was gone!  However, 4 days later the incision continues to leak CSF fluid...they have put in at least 7 additional stitches in his incision to tighten it up, and dermabond (superglue) as well.  Let's hope this does it and it stops!!!  If so, they will make sure it stays dry for a few days, then raise the drain and remove it when they are confident the leak is stopped.  Let's hope that we are on our way!!

As I understand it, CSF leaks are not uncommon, and most resolve themselves with the addition of the drain.  My husband's case is making his ENT and Neurosurgeon scratch their heads a bit, but they are confident it will stop.  This is a process that must work itself out...its disappointing to both of us, but you must be patient and take each day and find the progress.  I know that the 2nd surgery to repack was necessary and it worked to remove the air, which did allieviate his pain. 

Another point - Thank God for grandparents!!  Mine were here for 3.5 weeks, then the day they went home (a 10 hour drive) was the day he went back in to the hospital.  They rested for 4 days and returned yesterday.  It's such a comfort knowing my 10 year old son is fine and cared for and his routine is not too messed up!  (Unlike mine!)

So please, you guys hang in there...it will work out.  I keep telling myself this everyday and right now as I type this in my husband's ICU room. 

Lisa
   

[mykey]

Oops, sorry, I must have missed the 2nd page of this thread when I replied...glad to hear all is well and she is back home!   Take it easy.

Lisa

[TP]

MyKey, I am so sorry to hear about your husband. I too had two CSF leaks, additional stiches on two separate occasions, a lumbar drain as well as menigitis (spelled wrong) and a home pic line for 12 days. I was very fortunate not to have any headaches.

If your Dr has not already recommended this, have your husband sleep sitting up for several months. At first it is difficult because you are so tired and want to lay flat but place several pillows around him and over time he can gradually lower his head. It seems this helps with the healing process.

I totally agree with you about grandparents. I am so thankful this happened to me while was my daughter was older. My mom died a few years ago and we miss her greatly. She was a life saver to me and my family helping out when my husband was ill many years ago right after the birth of our daughter.