Surgeries updates on Lacey.......

[lacey7]

Hi everyone,
I think my daughter did an update on my June 26th surgery, but I need to add a few more important things that happened!
I had my surgery on Thurs., June 26th, and spent 2 nights in intensive care.  Things went pretty normal, and I came home 6 days later.  I was home for 3 days, and all of a sudden I felt a stream of liquid start dripping out of my nose.  I had just bent over for a second to pick something up.
I called the doctor's office and someone called me back.  They asked me if it tasted salty, but I couldn't really taste it.  I did feel something dripping in the back of my throat!  An hour later the doctor called me back, and it started dripping again out of my nose, and yes, it did taste salty.
They said to come back to the ER right away.  I was so scared.  They tested me in the ER, and yes, it was spinal fluid.  They scheduled surgery AGAIN for 7am the next morning.  DANG. 
I had surgery again, and the doctor repacked the area very tightly.  In fact, since I wouldn't be using my left ear anymore, he closed that area off completely.
Afterwards, the doctor said that I hadn't done anything wrong to make it start leaking.  He said my "u station tube" (spelling?) was 4 to 5 times bigger than he had ever seen in his career.  That's what made it leak.  He was surprised that it took that long after surgery to start leaking.  He put in a spinal drain, and I had to lay flat on my back for 6 days in ICU.  I have fibromyalgia, so it was so hard to lay like that.  My doctor is wonderful, tho, (Dr. LaRoure from Michigan Ear), so he got me a special bed ordered, and he gave me Dilaudid (sp?) for a pain drip.  That helped me handle the pain some.  I was in the hospital for 8 days this time.
Anyone had to go thru this surgery 2 times in 9 days b/c of this problem???
He had to reopen my stomach to repair this again, and now I have two rowes of stitches behind my ear.
I know it could have been much worse. 
He also had to take out my balance nerve, b/c the tumor was wrapped around it.  How many balance nerves do we have in our brain?
I wonder how that will affect me in the future??
He did get all of the tumor the first surgery..........but he said he never could have saved my hearing.  The tumor was wrapped around the middle ear, also.
I'm just so thankful that this nightmare is over.
I would really appreciate any comments, or similar experiences anyone had.
Thanks so much for caring.
Sorry I couldn't have gotten on sooner.  Got home on Sunday from the hospital.  I feel so weak now.
Hope everyone else is doing ok.
Lacey

[sgerrard]

Wow, Lacey, you went through the ringer!

I have heard about these CSF leaks, they don't happen that often, but when they do, they can be a bit of an ER thing. Fortunately they are usually able to get them under control and fixed up again. Flat on your back for 6 days in ICU does not sound like fun at all.

Loss of the balance nerve on one side is quite common, and though it can be somewhat bumpy for a while, you will be able to adapt to using the remaining balance nerve on the other side. Hearing loss? Well that is why they call it an acoustic neuroma in the first place.

I'm glad you are home at last. I think you should sleep for a month if you can; that was a lot to go through, and you are entitled to take some time to recover from it all. Please take care, and get well at a nice easy pace.

Steve

[rosalie]

Lacey,
Wow! You've had quite an experience with the hospital lately. Even though I had a fairly easy time with my surgery I can't imagine having to go through it twice in 9 days. Especially the stomach! That bothered me more than the head incision. I hope your recovery goes smoothly from now on. Kick your feet up and let your daughter and other family wait on you. You deserve it!

Rosalie

[Omaschwannoma]

Rosalie,

Thanks for updating us all and I am very glad you are home now recurperating.  You have been through much and more with the CSF leak, but very glad they were able to solve this problem.  Now all you have to do is re-learn your balance (as if it's that easy) and vestibular rehab will be a wonderful help for you in gaining back your balance.  Those of us that have gone through this have worked hard with the exercises and I'm sure you will be too, not painful, but challenging.  Now is the time to rest up for a few weeks so take those power naps during the day, be patient with yourself as you are healing and so is your brain.  It is trying to compensate and relearn what has been taken away and will cause you big-time fatigue, this is normal.  I'm happy you are now on the road to a full recovery and glad you are healthy once again! 

[Melissa778]

So good to see you posting Lacey.  Sorry to hear that you had a bit of a rocky road......my thoughts are with you.  Take it easy and rest.  Do your balance exercises too.....they helped me alot in the beginning.

Melissa

[Debbi]

Lacey-

What a horrific ride!  I can't imagine spending six days flat on your back in ICU.  Hopefully it is all a smooth ride from here.  I second Steve, get as much rest as you can and listen to your body.  Keep us updated when you can, but mostly just get well.

Debbi

[Cheryl R]

Lacey, I am sorry to hear that you had the CSF leak and your experience sounds close to mine.     My faciial neuroma and nerve graft was March 23rd,2006 and my leak started April 5th.     This was evening so I called them and they said I could wait till the next day since had no fever or headache.   We are 2 1/2 hrs away from Univ of Iowa.        They put me on bedrest when I got there for 24hrs and it continued so had surgery  the 7th.         This one was only a 3 hr surgery.           I also was told about having a large eustachian tube and then put lots of fat in it.   They made a whole new abdominal incision to get the fat.      They also took out my ear drum and put muscle across it.    I read later it was caled subtotal  petruectomy ( I need to check the spelling as doesn't look right)         They did not do the lumbar drain and was then fine.    I was weak longer too since we had just had 2 surgeries but recovered fine soon and was back to work in 2 months.
I was in the hospital till Mon after the leak surgery being Fri.                           I was later told that they had been trying a new colloidal implant and 3 people ended up with leaks.   it was called Durepair.  They went back to their more expensive one.  
The incision did look a mess after the 2 nd surgery but it did heal in time ok.                You will feel better in time.  That drain bedrest would have been hard to tolerate esp with your other health issues.  
Each side has 2 balance nerves-the superior and the inferior.     They are severed with surgery and the body then compensates on the other side.    If they are left and not severed then most people end up worse off as the brain does not adjust and are even more dizzy.
Give your self another week or and you will be doing better and then a few more weeks to really improve.
     Thiis last was ii April 2006 and I will always remember how in mid July then we went to Michigan to visit our daughter who lives in Lansing and went up thru Traverse City and then to Mackinac Island and spent the whole day on Mackinac Island.    There you walk alot and I survived.    I did need a nap when we got back to the motel that eve.            I would love to go back.  
     Take it easy.    It will go better for you in time.      I know it isn't fun when having to go thru more than one surgery.                 I was so worried for a while as it seemed like I had strange tastes then too for some time and that got better finally too.         I was so scared if the leak could restart but it did not!                      My inner ear was achy off and on too but that got better too.
    Feel free to ask any questions you ever come up with!                  I wish you well!
                                                   Cheryl R
                                        
    

[Syl]

Lacey,

So glad to hear from you! Yeah, you've been through alot. Sending good vibes your way.

About the balance nerve, I thought it was a given that it was removed with surgery. I know mine is out in some hospital body part cemetery or landfill. What do they do with those parts, anyway?

Rest up and keep us posted.

Syl

[Jim Scott]

Lacey:

Thanks for posting your chronicle, even though the CSF leak and resulting hospitalization wasn't a pleasant experience for you.  You really must have an extraordinarily large eustachian tube!  CSF leaks are one of the risks of surgery but fortunately, you survived it, including the 6 days in ICU.  The best part for you is that it's behind you and you're on the road to recovery. 

Now that you're home, follow everyone's advice and rest as much as possible so your body can heal.  You've certainly earned it.

Jim

[wendysig]

Lacey,
I am so sorry to hear what a horrible experience you have had.  CSF leaks sound like scary experiences  and one that I truly hope not to have myself (my surgery is scheduled for next Friday).  It sounds like you've really been through the wringer as Steve said and I hope you will concentrate on getting better and let your family pamper you as much as they can.  You deserve it!  Try to take it easy and take baby steps on your road to recovery -- ope its smoother from this point on.  You'll be in my thoughts.

Wendy

[leapyrtwins]

Lacey -

sorry to hear of your additional issues, but I'm glad you're home to stay 

From what I understand, CSF leaks just happen - it's not something that you either cause or don't cause.  And it seems like we've had our fair share of them on the forum lately, so maybe you just wanted to feel like one of the crowd 

Your body will adapt to the loss of the balance nerve.  It might take a little time, but keep the faith.

Many thanks to your daughter for being your scribe and keeping us updated.  She did a great job!

Get some rest,

Jan