ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: kiwi on April 20, 2010, 05:38:10 pm
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Hello
I have been told today I am going back to hospital for surgery to fix my CSF leak. This is a major setback for me as it is 5 weeks ago I had the original surgery. For those who have had this surgery my questions are....
- Have any of you had surgery for the CSF leak so long after your original surgery?
- Is this surgery just as bad as the original surgery, ie will I get back to where I am now quicker than after the original AN surgery?
I am now seeing this past 5 weeks as a complete waste of time, and I am really angry now. My ENT specialist that I saw today in my hometown couldn't answer any of my questions, so I am a bit unsure of what to expect. Feels a bit like groundhog day...
Jacqui
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Jacqui, I am sorry to hear of more surgery but then you should be fixed and fine. I was 2 weeks past when had my leak. I wasn't happy about more surgery but I did not end up with menigitis, which was more of a concern to me. Surgery was much shorter and went back to my room and no ICU. I had been there for a day ahead as they had me on bed rest to see if the leak would stop. I did have the tired part for a while but since I was only 2 weeks was still in the recovery phase anyway. So in my opinion will not be as hard afterwards. Good luck and will be thinking of you!
Cheryl R
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I had my leak diagnosed & repaired one week post. it was a 4 hr surgery; original was 12. I didn't have to stay on vent, but I had a lumbar drain for 5 days in hosp. That was very painful (headache). I know that exasperated feeling of facing a 2nd brain surgery when you thought yoy were done getting your head opened up. It was traumatic for me. Good luck. You are in my thoughts :)
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I also had a CSF leak repaired 10 days post op, it was planned as an outpatient procedure, but had a terrible spinal headache and had to take an ambulance ride to the hospital. My surgery was about 6 hrs and they performed a mastoid obliteration, where they basically peeled my ear forward and went in through the mastoid bone to "patch" the leak. I was in the hospital for four days and until the headaches subsided, because I could not sit or stand at all, I was laid out!
This was a very scary time and the last place I wanted to be was the hospital AGAIN. At least this time I had a single room. I'm not sure what type of surgery your Doctor is planning to perform to patch the leak as there are multiple places you can be leaking from. Mine was dripping down the back of my throat and when leaning forward it would come out my nose. This surgery was no where close to the first one and I don't think it would set you back much. You are a champion AN postie and this will be nothing!
Good luck and try to be positive, you will finally be all patched up and you can continue recovering. I you do have to stay at the hospital for any amount of time I would look into getting them to give you physical therapy. This will help to keep you moving forward.
Not sure why your Doctor couldn't answer any questions, but I would give the neurosurgeon a call. You should not have any unanswered questions.
Good luck with the surgery and you will do just fine, now worries! Piece of cake :D
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My leak surgery was only 3 hrs and was a subtotal petruectomy (sp?) They went back in thru my translab incision. No bad headaches post op just kind of occ achy but taken care of by pain pill. Put more fat in the eustachian tube and also removed my ear drum and now have muscle over the ear drum area. Can't remember what else they told me was done but was bone related.
I have my operative report somewhere. Need to read it again.
To also add, I have never had those extensive balance tests done either. Each dr has their own way of what they do.
Cheryl R
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I am so sorry about your CSF leak. I had my brain turmor removed in early June 2006 (9 hour surgery, hospitalized 5 days), about 3 weeks later I had my 1st CSF leak surgery. It was difficult for me as I was in the hospital for 7 days and got menigitis. The surgery was fine but I got sick. I went home with a pic line and had to adminster antibiotics 3 times a day for 2 hours (total of 6 hours a day). Well my head leaked some more so in July (I can't remember dates) I had another CSF leak surgery, this time they did a lumbar drain first but then realized I needed another surgery. This one worked!! I stayed in the hospital 8 days this time and on my last day in the hospital they did the minor surgery on my eye and placed the gold weight in my eye lid. My next surgery was about 15 months later to correct my double vision and a few months later I had my gold eye weight removed.
I hope your CSF is successful. Please make sure you check your temperature several times daily and get plenty of rest. It is hard and we can relate. It is not fair that we have to go back in and have another surgery but once it is corrected you will start feeling better. God bless you!
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Hi, I know what you feel. I had 4 different surgeries for leaks. Also 2 lumbar drains. I am back to normal, no leaks. They were by far easier than the main surgery.
Karen
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Thanks for your replies
I have has a CSF leak now for over 2 weeks, and just waiting to have a date for surgery confirmed. I just have to sit here with a tissue stuck up my nose constantly.
My experience with an AN is completely different compared to most people on this site......different country, different healthcare. I go where Im told and see who Im told. I dont even know if I had a neurosurgeon when I had surgery....probably who knows. I cannot call my ENT surgeon as I can never get hold of him as he is so busy and I live 5 hours away from him so can't just drop in and see him. My ENT in my hometown said they will get me into hospital at some stage and I might see my surgeon then. Most likely in theatre before they knock me out!
So as you can see things work differently here in New Zealand and there isn't a lot we can do about it.
Jacqui
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Jacqui,
I'm sorry you are having a tough time with the Dr's and I'm surprised they're waiting to do surgery due to the risk of meningitis, I guess that's just how your healthcare system functions and that can be frustrating. Don't worry, just lay low, try to stay home and take care until you can get the surgery you need.
Let us know how everything goes,
Liz
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Dear Jacqui, I am so sorry to hear this, as if you haven't been through enough :'(. Hearing about your healthcare system there makes me grateful that I live here in the U.S.
You are in my thoughts everyday, in fact I am going to wear the scarf and it will keep me focused on you. Please keep us posted about your surgery as soon as you know.
Thoughts and prayers coming your way. Sue
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Jacqui, because you have a CSF leak, please make sure you stay away from anyone that may be sick or away from germs as much as you can. Like I mentioned earlier, if you start to feel ill or get a temperature, please call your neuro or whatever dr you have to call. I would also, rest as much as you can. God bless you please keep us informed.
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Well I finally have the call up for surgery which will be the 11th May.
So by the time I have surgery I would have had a CSF leak for 5 of the 7 weeks since my main surgery, what a joke. I had a bit of a scare last night as I got a terrible headache and of course was scared I had meningitis so I rushed myself to the emergency dept and had to explain why I was there just because I had a headache. Anyway after several hours of waiting, throwing up and a blood test I was all clear and sent home.
Sometimes it would be nice to go to sleep and wake up next year when its all over!
Jacqui
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Jacqui,
I'm so happy you finally have your date for surgery! It will be such a relief when this is all over and the leak is fixed. I wonder if you had a spinal headache, because those can be so very painful. It basically lays you out? I did also throw up from the headaches as well. Again, hold tight for the next couple weeks. Try to stay home and keep an eye on your condition, its great that you are being so cautious.
And can you wake me up when its next year too :D
Hang in there,
Liz
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Hi Jacqui,
I was glad to see your post. You have been in my thoughts and prayers. It's good to finally have a surgery date, it must be so hard to wait so long, I can't imagine. I hope the headaches will stay at bay. I am wearing the scarf in your honor. Good luck with your surgery! Sue
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Thanks Sue
The scarf is truly magic and it will definately comfort you that dreaded night before your op. You will be fine and it will be all over before you know it and you will be well on your way to a trouble free recovery and life with an intruder in your head.
I am really bummed at having to have surgery so long after my initial surgery, life is just starting to resemble some kind of order for me and this is a major blow to my already fragile emotional state. Three steps forward and two steps back. We all just have to keep on keepin' on.....thats life with an AN.
Jacqui
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Jacqui,
Sorry to hear about your CFS leak. I can only imagine how scary it is just waiting with it. I had to have a second surgery 10 days out from the original one. I had a lumbar drain put in while in the hospital and was immobile for about 5 days. I was released and thought everything was fine, but 5 days later developed a massive blood clot. This has been a big setback, and I feel could have been avoided. I had no clue at the time how much of an issue it can be. So please be careful and bring it to your nurse's attention if you are immobile for any length of time.
Best of luck to you, my thoughts and prayers will be with you.
Tom
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Hi Jacqui,
Here’s the short of my story:
It's been 10 months since my AN surgery. I have had 5 surgeries to try and stop the leak. Now they are looking at doing a Craniotomy...to try stopping the leak from inside of the skull.
Is anyone familiar with this procedure?
Blessings
Derick
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Derek, A craniotomy would be what we had done with regular AN surgery. Surgical work inside the skull but not into the gray matter of the brain. Was your previous leak surgeries just done the outside of the incision area. My leak surgery at 2 weeks was going back by opening my incision and into the previous surgical area and putting more fat and other materials they used to plug it all. They also did some work on the bone area that has lots
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Sorry that this post got hit before I finished it. The bony area with the air pockets was also redid. My reason for the leak even was that the type of product used to help hold things in place was a new cheaper product that did not do what it should. 3 people had leaks with it. So is similar to a major AN surgery but not as major. Some recovery but not as bad. But yes the poor skull is opened up. I am surprised this was not done before if what was done for you previously is like I think.
So not fun to have to go thru but should take care of the problem! I wish you well!
Cheryl R
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Derrick you poor thing, I'm sorry you have had so many surgeries for your leak. I really hope they manage to fix my leak the first time. I am really getting nervous about the amount of fluid coming out of my nose now, not just a drip anymore, pretty much a trickle. One week to go, not looking forward to it but I cant live with this free flow out my nasal cavity.
I thought a craniotomy is what we all go through if we have AN surgery? When are they performing this procedure on you again Derek?
Jacqui
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Thanks Cheryl & Jacqui,
I just posted my thread & you can read my journey so far. Topic: "CSF Leak for 7 months - 5 surgeries failed, still leaking…"
Jacqui, I'll be praying your surgery goes well.
Blessings,
Derick
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My thoughts are prayers will be with you.
Best Wishes,
Pat
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Hello everyone ;D I am a new member and this is my first post. I had my AN surgery on July 23, 2010. I had a successful removal of the entire 1.4 cm tumor and no damage to my facial nerve. That was my major concern. However, the same day I was discharged from the hospital, I noticed a clear fluid leaking from my right nostril. Being a nurse, I recognized right away what this was. I hoped it would stop by my 2 week follow up with my surgeon, but it did not. This all occurred this past Monday. I am scheduled for a second surgery to fix the leak this coming Tuesday, August 17th. I was so upset and discouraged. I did allot of internet research regarding csf leaks, and I found the most accurate and helpful information right here in this forum. I have read everyones stories about their experience, and it has helped to set me more at ease. There is so much wonderful information and inspiration in the stories you all share here. I wanted to say "thanks" to all of you, and I will continue to be an active part of this forum from this point forward.
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I also want to welcome you to the forum, and please do not hesitate to come to us for anything, we are here to show our compassion toward and share our experiences with others who are going through their AN journey. CSF surgery is nothing compared to the AN removal. Do you know how the surgeon will go in to repair? I have a completely seperate incision directly behind my ear....just curious as it seems like there are multiple approaches to this sugery.
I second Donnalyn's questions...
Take care and hang in there, you will be feeling better in no time :)
Liz