Questions regarding CSF leak,meningitis and treatment options

[Diwas]

My wife had surgery to remove a large sized Acoustic neuroma tumor from the left side of her brain on 03/09/07.  The surgery and post surgical stay at the hospital lasted 4 days even when the surgery itself took close to 15 hours.

She was doing fine for the most part except for her slight left face paralysis, difficulty sleeping at night and some loss of taste.  She was at a point where she could walk without little assistance.

What we did not realize as symptoms for CSF leakage when she had clear liquid drip off her left nose. The neurosurgical PA discounted this as an allergical reaction to pollen when we complained to him a couple of weeks ago when she was back at the clinic for post op to remove the staples off her incision.

The CSF leak eventually lead to high fever.  My wife had remembered that there might be a chance of urine infection after the surgery so she had the PA start her on anti-biotics the earlier part of last week.  However, 2 nights after that, she ran a high fever and vomitted several times. She was rushed to the ER upon consultation with the neurosurgical clinic and after performing test on her lumbar fluid, it was determined that she had a bacterail meningitis.

Right now, she is being treated with anti-biotics for the meningitis and they have a lumbar drain in her to drain the CSF fluid and regulate the pressure on her brain.  The last 2 nights in the ICU have been progressively better.

I would like to be a little more educated on the treatment options. 

Her neurosurgeon is recommending that the leak in the inner covering of her incision should try to seal itself with the help of the lumbar drain. If this does not help, then another surgery might be needed to go in re-pack that area to prevent future leaks.  The meningitis should be treatable and be removed from her system in the next few days. Her CSF looks pretty clear on the holding container of the lumbar drain.

All any past experiences, recommendation would be greatly appreciated. Thank you.

Smrity and Diwas

[ppearl214]

Hello Smrity and Diwas and welcome.

I am so sorry to hear what is going on with your wife. I do know that some here ran into the same issue (one of the most recent that comes to mind is Gennysmom, who also had a CSF leak and had to also endure a lumbar drain).  I hope she logs on soon to help share her encounter and all that happened... as well as others here that may have run into this.  If you also check the "Microsurgical" forum, you may find info there as well as this forum (Post-Treatment). Some info may also be available in our "Archives" here.....

I did not have microsurgery so I cannot share from that standpoint, but know we are here to help in any way we can. Please hang in there and please tell your wife that we are cheering her on to a speedy recovery.

Again, welcome.
Phyl

[TP]

Hi Diwas:

I had my AN removed June 5, 2006. It was a 9 hour surgery.  Was in ICU for 4 days, 1 day regular hospital room. About 10 days after my surgery I started having a leak from my incision (lots of drainage). I visited my Dr's office and he put 3 or 4 stiches in my incision (no novacane - ouch) and unfortunately it didn't help. A couple of days later I went back into the hospital for a CSF leak repair, while in the hospital I developed meningitis. They put me on antibiotics and kept me in the hospital for 6 days. They inserted a pic line and I was sent home and administered home antibiotics 3 times a day for about 2 hours each time (6 hours total a day) for 10 days.  During that time of my recovery was not fun. After completing my antibiotics I felt better but my head started to leak again. I went back to visit my Dr where he gave me 5 new stiches (no novacane - big time ouch) and a few days later went back into the hospital to place a lumbar drain in my lower back. Two days later my head still was leaking and they did another CSF leak repair (this surgery is simple and not painful). This time it worked and I went home after 8 days. My last day in the hospital they placed a gold weight in my eye lid to help close the lid. I slept in an upright position for about 1.5 months (not fun).

I've had no problems with my head or incision with the exception of a few headaches in the evening and they usually occur due to me working too much. I have left side facial paralysis and double vision. My face has improved slightly and I am very anxious to get my double vision fixed sometime this summer. My neurosurgeon would like me to wait at least until my year anniversay of my surgery in case my double vision improves. 

I will pray for you and your wife. I know this is a tough time but sounds like the Dr's are doing everything. I suggest you ask lots of questions but if your wifes head is leaking it sounds like she needs a repair. Keep in mind they removed bone and that is a tough incision to fixed so if they have to repair it hopefully it will work the first time.

Stay strong, have faith and it will get better!

[jcinma]

Diwas-
I had surgery in Feb. 2005 for a 3cm AN. I was home for less than 24 hours when I noticed clear fluid from my nose.  I was back in the hospital with a lumbar drain and heavy duty antibiotics to prevent meningitis for almost a week but I am grateful to say the drain was successful. I was also told that if the drain didn't work I would have to have additonal surgery.  I hope the drain is successful so your wife can go home to continue with the healing process. Wishing you and your wife the very best,
Jane

[Jill Marie]

Hello,

I'm of no help as far as the AN CSF leak is concerned but perhaps I can help you help your wife with the bacterial meningitis.  Our youngest son contracted it while in Iraq and he was flown to Germany while unconscious.  The Military flew us to Germany also.  It sounds like your wife's meningitis was caught earlier than our sons so perhaps she won't have the same issues.  He was very light sensitive the first few days and things tasted really odd to him, considering your wife has tastes issues now from the AN it may not affect her.  The biggest thing was the headaches, they tried several medications before they found one that worked, some made it worse so our son quite asking for medication.  When we got there I told them to find something that would work, we also covered the window in his room to keep out the sunlight and we put a cool cloth over his forehead and a mask over his eyes.  That's when he finally was able to sleep, all of this of course was after he regained consciousness.  Two months later he returned to Iraq, he is now in NC attending another military school and is doing fine.  Goodluck to you and your wife, Jill Marie

[Timjk]

The only thing I can do is relay what as done or me to correct my CSF leak.
They put in a shunt tube into my brain which goes into the fluid "pool" in the center of the brain. The tube runs under the skin across the left side of my head,behind my ear,down my neck,under the collarbone into my belly cavity. It drains off excess fluid.
The spinal drain is something I have no knowledge about. I DO know the shunt tube corrected my problems. Hope it is a help..

          Tim Kimball

[Gennysmom]

Hi Diwas...I had surgery 7/5/06, and went back in 2 weeks later for a CSF leak.  I caught it early because I knew what the signs were, it was dripping from my nose as well.  I went in on a Wednesday and had a lumbar drain put in, it worked itself out by Friday, so had another put in and had them put a stitch in to hold the drain from working out.  Stayed in till the following Wednesday.  I can tell you one thing....most nurses do not know how to work a lumbar drain properly, I ended up with my mom staying there 24/7 and adjusting my drain in the proper intervals....my CSF pressure changed constantly (not even from shifting positions)  and I think when she took it over and told the nurses to blow off made my ability to seal the leak without surgery was successful.  They had already scheduled me for a repacking, and I proved them wrong.  I didn't end up with meningitis, and was on an antibiotic drip the whole time I was there.  Please feel free to contact me if you have any CSF questions....I have not had any leakage issues since. 

[Diwas]

Thank you all for your responses.

Smrity will be transferred to the general ward when a private room becomes available. She was up walking to the bathroom starting last night but along with that, her headaches and nausea also increased.  Her doctor thought that she is also getting sensitive to the narcotic medication so she is only taking pill form of tyrenol for headaches.  She is taking other pain and nausea medication intravenously.  The culture results on her spinal fluid will be in tomorrow and the doctors might change her anti-biotics again.

Her neurosurgeon mentioned that they would remove the lumbar drain on Wednesday and check for CSF leak.  There might still be a decision to be made if surgery is needed to repack the area they thing is leaked in the first place.

Today has been a tough day for Smrity. She has vomited a few times and has eaten very little.  We have been sort of coaxing her to eat as much as we can.

I am paying very much attention to the amount being drained through the lumbar drain and I am asking questions more often. I have found that there is a lot of communication gap between the doctors and nurses at times.

Along with all this, our county's health dept called to have our 9 month old son on some anti-biotic since he has not had his 4th dose of influenza B shot.  Thankfully the grandparents are taking care of our son at this time.

Smrity and Diwas

[TP]

Hi Diwas, looks like she is doing better since she is able to get up and move around a little. You didn't mention the size of her tumor, length of her surgery and if she has any other side effects with the exception of slight facial paralysis. Since she is throwing up and her surgery was over a month ago it  could be side effects from the narcotics or antibiotics. I was fortunate that I didn't take any pain pills until my last surgery for a CSF leak and the pain pills were for the pain in my arms from the IVs not from pain in my head. I found that tylenol or aspirin did the job to help with any head aches. When I was on the antibiotics for meningitis I did not feel well at all and didn't have much of an appatite or energy level. I lost about 20 lbs during that time.

It will get better, stay strong and we will be praying for you and Smrity.

[Gennysmom]

Glad to hear she is up...I had the same problem, I puked most of the time I was in for the leak....my surgeon said that can be from an air bubble that gets in there....I had to have a CAT scan because they were a little worried that I couldn't keep anything down, but everything looked fine....it took 4 days, but someone finally suggested I try keeping down Boost or Ensure....and that did the trick for me.  I could keep that down.  I was very weak by the time I left and it took a couple of weeks to undo the damage done by not eating for a week.  I had head pain too, from the leak, and as soon as I got home it went away.  Hint....drive her home very slowly and carefully...a reduced CSF pressure is not fun to ride with in the car. 

I will be thinking of her and crossing my fingers that she can hold her fluid.  Also, the day after I came home I had another nose drip, and I thought it was leaking again, but it turned out to be my autonomic nervous system making my nose run...it can get all messed up from how they had to mess with the nerves.  I had to go up and the Doc made me sit with my head between my knees for 15 minutes....I got up with the worst headache in my life and it took them 20 minutes to get me some Vicodin to chew...I started going into shock the pain was so bad, so I started carrying around Percocet every where I go in case that happens again...I still carry it now.  So keep some close at hand for a period of time, waiting 20 minutes nearly killed me. 

[Diwas]

Smrity is back at home from the hospital. She was discharged on Friday. The car ride from the hospital was very hard on her. She vomited and had headaches all through out the 30 min ride to home.  She is taking pain medication around the clock to manage her pain at this time. I am administering the anti-biotic for her through her IV line.

The recovery will be much longer this time around.  She still gets unbearable headaches once in a while. She is see a PT also to help her regain strength on her left hand and feet.

Her neurosurgeon will be seeing her this Thursday.

Our hope is that the lumbar drain helped to re-seal the location of the CSF leak.  She is very exhausted from the last stay in the hospital.

Diwas

[Diwas]

Smrity had a seizure on Tuesday morning and needed to rushed back to the hospital.  Initially the neurosurgical team thought it was due to the air pockets that formed in her brain after the lumbar drain was put in to contain her CSF leak.  The ENT surgeon had recommended surgically packing the area where he thought the original leak was and both him and her neurosurgeon had recommended that to us. She was being readied for surgery today but the CT scan that was done yesterday( Thursday ) revealed some blood clot on her veinous system on the top part of her brain.  She had another CT scan done with dye and that gave them a better idea of what was happening.  She was put on heparin soon after that and the surgery was canceled.

We are all stressed and emotionally drained with this new complication.  Her neurosurgeon has attributed this to her seizure not the air mass as previously thought. She is responding very well to all cognitive neurological tests.  Her heparin levels are at therapeutic levels at this time. The current plan for treatment is to change her meds to oral thinner while keeping her blood levels the same.  Then doing a CT scan and making the decision on if she can go home.  The clot might take weeks to clear out.  The surgery has been put off for the time being.

Is this something people in the forum have experienced? Any insights into what other things we should worry about? What questions we should be asking the surgical teams?

Thanks

Diwas

[Gennysmom]

Diwas,

So sorry to hear about the complications Smrity is having!  I did not have any seizures, but as I said they thought I had an air bubble, and now to find out that can trigger a seizure is interesting.  Did Smrity get Heparin when she was in the hospital after the original surgery?  They poked my tummy with it every day and the bruises stayed there for a month or more...They gave it to me so a DVT (deep vein thrombosis) would not happen...I'm sure you guys are just exhausted, especially since all this extra stuff wears you out....being at home is much more theraputic.  Hopefully the Heparin will help, and she has no further complications.  Please keep us updated!!!  Tell her to hang in there, and get lots of rest.  No need to push this, just let her body heal. 

[nancyann]

Hey Gennysmom:  Isn't it funny - I forgot all about getting Heparin injections until you mentioned it !!!  Yes, the bruised look stayed quite awhile...
I never had the CSF leak, etc.  sounds like an awful time,  but eventually it ALL goes away, doesn't it...... even my facial paralysis, it's still there on the outside but I don't feel it on the inside...

[Diwas]

Smrity developed CSF leak on Saturday.  Her neurosurgeon has recommended doing the surgery to "re-pack" the area of CSF leak on Friday. She is in anti-biotics for now and staying in the hospital. They are also running tests to see if her blood tests positive for any of the genetic markers. They will turn off the heparin prior to the surgery and turn it back on few hours after the surgery.

She was taking the heparin shots while she was in the the hospital.  The doctors think that the clots might have formed due to infection/inflamation in the brain when she had the meningitis.

She is now mentally prepared for this second surgery. The ENT surgeon will be doing this surgery.  He will repack the area with fat tissues from her belly. She has a contrast CT scan scheduled for tomorrow.

Has anyone in the forum have had this kind of surgery done due to CSF leak? Was a lumbar drain also put in as part of this kind of surgery?

Diwas