CSF leak surgery

[Mark241]

I might be able to help you out alittle. I didnt really regain my taste fully for about 4 months. My Doc had said it would take awhile for those nerves to heal themselves, which they did. I'm still dealing with csf, but it really never affected my taste. Good luck to you.

[Lizard]

Kenneth,
So sorry you were leaking again, but hopefully they licked it once and for all!
Liz

[kenneth_k]

This is not fun

I found myself in a position were I was unable to recover psychologically. So I have started to see a psychologist to help me get over my apparent depression. And now - guess what - I'm leaking again......

I'm seeing my surgeons on 10th march where we will discuss options. If the leak hasn't stopped by then, they will re-operate - extended version

If anyone has ever had a subtotal petrosectomy with blind sac closure, please respond on sideeffects and if you are allowed to fly/swim once the wound is healed.

Needless to say, this has put me back several miles.

Best regards, Kenneth

[CHD63]

Oh Kenneth .....

This is so unfair!!!  You have every right to be depressed.  So glad you are seeing a psychologist to help you through the current set-back.

Hopefully someone on here can shed some light on the surgical procedure you mentioned ..... I did not have to deal with a CSF leak or leaks as you are.  Surely this time it will be fixed for good.

In the meantime, many thoughts and prayers for healing.

Clarice

[msmaggie]

My heart goes out to you.  My leak was persistent, but was finally resolved w/out surgery but not before I was hospitalized w/meningitis.  You cannot be faulted for being discouraged!  I will keep your situation in prayer. Hang in there!

Priscilla

[Cheryl R]

Kenneth.  I had the subtotal petrosectomy and recovery was just like AN surgery.       My surgery for the facial nueroma had been 2 weeks before it so was just starting to do better when th e leak occurred.      They feel mine was due to their use of a new colloidal implant inside to help hold things in place and it did not work well as 3 people had leaks so they went back to the previously used type.     Thre was no scarring going on which should have been at that long of a time post op.       My surgery was only 3 hrs and I was back to my room and not in ICU.        Other wise just back up on my own walking right away and tired and not hungry much.     The wonderful bandage again.  Am sure took a few pain pills. This was in April 2006.    Mine was Fri night and home on Mon.   I did not hear if there was a blind sac done.    I do know they took more fat from the abdomen so I have 2 scars which mystified an Ob-gyn dr when he saw it.      I supposedly have a very large eustacian tube on that side.       There was full feeling for quite a while.     Was not told of any restrictions on flying and have since then with no problem.        There is muscle over the ear drum opening and no ear drum.        I occ get a few second twinge of pain in the ear even yet but is not frequent.   I see no reason why you couldn't swim in time.    I don't but heard of no restrictions.
     Not fun to have to go thru more surgery but if will help would be worth it.         Good luck with this.        Cheryl R

[Jim Scott]

Kenneth ~

I'm so sorry to learn of your newly discovered CSF leak and your bout with depression, which is not unusual when one has to deal with myriad and continuing medical problems over a long period of time.  I'm pleased to see you're seeking help from a psychologist as well as planning the next - hopefully final - CSF-related surgery.  You have my sympathy and of course, my prayers for the CSF leakage to be permanently solved and that your depression will lift as you're able to resume your normal life.

Jim

[BostonBill]

Hi Kenneth, I am sorry to read about your ongoing battle. I will be undergoing retrosigmoid surgery this June. CSF leak is definetly near the top of my, hope to avoid wish list. I am very active and the possibilty of CSF I hope will be a big deterent in me trying too much too soon. What is the leading cause of CSF leaks? Is it mostly stress? Please stay positive. You will get this behind you!

[fav]

hi kenneth
so sorry to hear this.
have they given you the option of a shunt?
best
dan

[Suu]

Hi from me too Kenneth

I had a hard time with leaks (4 extra ops in 6 weeks until they literally filled the whole eustachian tube with fat as well as doing a fat flap behind my ear due to how many weak spots had been caused from the operations.

As for the huge bouts of anxiety, depression, and crying episodes? I went to my local family doctor and begged for Vallium.  I was monitored and rung at home (I live 1 and 1/2 hours away).  The thing that got me moving in the right direction was finding that I wasn't alone.  It's this site that I credit for me 'coming around' and seeing that all hope is never lost and what was happening to me was normal.

I feel for you mate.  Unload here as much as you can and we'll give you the shoulder that we give each other.

Best wishes,
Suu (from Down Under) xxoo

[kenneth_k]

Thanks for all your responses. They help.

Kenneth

[kiwi]

Hi Kenneth

I hope my rundown on the the Sub Total Petrosectomy and Blind Sac closure helped.  It was not so bad and I'm glad my surgeon did this proceedure on me as it fixed it once and for all with no real complications afterwards.  At the time I thought it was overkill but when I read all those who struggle with operation after operation shunts etc, I think you might be better off with this procedure.
Keep us updated and I hope you get some relief soon.

Jacqui

[Mark241]

Wow Ken, I can relate, I had mt LP shunt placed in January 2011, after 2 wound revisions. 2 weeks after, I started to leak from the AN incision site again. Had surgery again on Feb 8Th. The catheter from the shunt had moved from my stomach cavity to my liver, so It wasn't draining. They revised that, and also went back into the original AN incision 3rd time. They found that I had fistula that was draining out benign fluid, so they cut that out and placed fat into it. So far so good, but I have been there before. The shunt has worked though, I haven't had the taste of csf since they placed it, and I was relived that it wasn't' csf coming out of my head. I went back to Barrows for this surgery, I had let the Doctors at the University of NM try twice, didn't' feel confident in going back. I know your feelings, I have checked my pillow case, and towell after my showers, everyday for the past 4 years, I have also been to counselling not just for the leaks but for my NF2 issues also, I find that it has helped quite a bit. Feel free to contact me. 

[kenneth_k]

Surgery date is set. 4th of April. My surgeon actually cancelled his planned day off to fix my leak.

A subtotal petrosectomy with blind sac closure it will be.

Until then - breathe in - breathe out - breathe in - breathe out.

Wish me luck, Kenneth

[MNTim]

Good luck!
My prayers are with you.

Tim