ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: kenneth_k on November 23, 2010, 01:25:24 pm
-
Hello everyone.
Just talked to my surgeon today. We have decided to reoperate to try to fix the CSF leak once and for all.
I don't have the exact date yet but it should be soon.
It's a relief to go from "whats happening" mode to an actual plan. And folks here on this forum who has tried surgery for a CSF leak says its a walk in the park compared to the original surgery.
I have asked him to evaluate the MRI and my benign Cavum Septum Pellucidum Cyst to make sure it isn't the cause of the leak due to intermittent increased intracranial pressure. He promised to do so and I feel confident and trust him.
Best regards, Kenneth
-
Hi Kenneth
From one leaker to another, I hope your surgery is successful and fixes it once and for all.
There has been a lot of talk on this site about leaks lately and I have noticed that compared to others who have surgery mine was pretty extreme. I had a sub petrosectomy and blind sac closure, which has done the job very well, however I no longer have an ear canal, and most of my ear was cored out and stuffed with fat and bone wax. My surgery was only 4 hours and it was not so bad compared to the AN surgery. I look forward to hearing about your operation and wish you well.
jacqui
-
Kenneth
I notice your sig says you had taste issues. Do you still have taste issues?
I'm 7 weeks post-op and still can't taste anything sweet.
And I also have a leak as well. Will see my Doc on Dec 2nd.
-
Kenneth -
sorry to hear about the leak.
Have never had one myself, but as you say those who've been "patched up" report that it's not too bad.
I hope things go smoothly for you.
Best,
Jan
-
Hi Kenneth,
Sorry about the problems, but at least you have a sound plan, so that you can deal with this problem once and for all. I wish you the best of luck.
Marianna
-
Funnydream, my taste issue has been a lot worse. It took about 3 months to go from bad to bearable, and now it is only once in a while. It could actually be the CSF I experience now. Occasionally, a salty taste without eating or drinking anything.
Kenneth
-
Surgery date set.
7 december this year. I will be home for Christmas ;)
Kenneth
-
Best of luck fixing your leak...Hope you have a speedy recoup.You are a very brave man.
-
My prayers are w/ you!
-
I'm back ;D
Surgery was succesfull. The doctor found the site of the leakage and filled it with a muscle/fat graft from the stomach.
So now I'm even more a fathead that I was before.
This time I pray it will stay dry ;)
The next couple of weeks I will stay relaxed and avoid straining at all cost.
Best regards, Kenneth
-
Kenneth .....
So glad this surgery was successful ..... and as far as I know, you were never a fathead before, so ...... ;D ::) ;D
Also praying this fixes it once and for all ..... enough already!
Rest, rest, rest over the busy holiday season.
Clarice
-
Kenneth ~
I'm pleased to learn that the source of your CSF leak has been located and sealed via the fat graft. Like you, I hope this is a permanent solution. Congratulations!
Jim
-
Kenneth, let's hope this does it for you!!!
All the best.
staypoz
-
Hope the leak stop's brother! Man I know how that goes, getting a lumbar shunt in Jan to try and stop mine (4yrs) if that doesn't do the trick I'll be having the same surgery as you, which I wouldn't mine to stop this . Please keep us posted.
-
Great news Kenneth,
When I told my doc about my leak. He said "We should wait and make sure its not 'Pseudorhinorrhea'" Since my leak is so small its hard to even get a test tube sample. He said that long word means my nasal can get screw up from surgery. So I'm suppost to go back in 4 months.
I asked him about the taste issues. He said that it could be from the tube down the throat pressing on taste nerves. And lets wait and see on that too.
Kenneth, did you get the taste issue again?
-
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.
-
Kenneth,
So sorry you were leaking again, but hopefully they licked it once and for all!
Liz
-
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
-
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
-
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
-
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
-
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
-
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!
-
hi kenneth
so sorry to hear this.
have they given you the option of a shunt?
best
dan
-
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
-
Thanks for all your responses. They help.
Kenneth
-
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
-
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.
-
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
-
Good luck!
My prayers are with you.
Tim
-
Kenneth ~
Congratulations on securing a surgery date and, of course, I wish you the best of luck and hope (along with you) that your CSF leaks will finally be ended.
Jim
-
Kenneth....once again, good luck man....mega prayers being sent your way!
Jay
-
Good Luck Kenneth
I look forward to hearing about your version of this surgery and I hope it is as successful as mine has been. It will be a walk in the park compared to what you have been through so far.
Jacqui
-
Just got a letter from the hospital. They have to post-pone surgery for two days- hrmph.....
Well, at least I know that they haven't forgotten me :)
-
Just got a letter from the hospital. They have to post-pone surgery for two days- hrmph.....
Well, at least I know that they haven't forgotten me :)
How could anyone forget that smiling face :P
-
I have been reading these posts and I am very curious as to how you know if you have a CSF leak. Is is subtle or extreme???? How can you tell?
-
For some it is quite obvious. Clear watery liquid dripping constantly out of the nose or out of the incision.
For others it may be more subtle. A swelling at the incision. Dripping after straining or the sensation and taste of salty fluids running down the throat.
For the rare and unlucky, it may not be visible at all before you catch meningitis that may be recurrent. Thorough examination may then reveal a very small leak somewhere inside the skull.
Best regards, Kenneth
-
Para1,
I have had several craniotomies and was concerned about CSF leaks every time I had a runny nose. After my most recent surgery I discovered what the symptoms really are. It is not like a runny nose but as Kenneth said very watery and a constant drip coming from the nostril on the side of the surgery when you bend over. If you are swallowing it the taste is extremely salty, like if you ate a spoonful of salt. I also had a leak at the incision and it would make my shirt collar wet. Apparently headaches are another symptom but I never experienced them.
Hope this helps.
Tim
-
Fluid can also leak from your ear. Mine dripped from my ear and the ear was constantly moist until the leak was surgically repaired.
staypoz
-
Thanks....I have just been concerned because the back of my head, where my incision is, swells us and is mushy and I didn't know if there could be a possible leak. Thanks for giving me a description of the symptoms.