Author Topic: what to expect?  (Read 4236 times)

Meska

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what to expect?
« on: May 16, 2005, 02:51:37 pm »
   I would like to say Thanks to all of you here in this forum.   I live in a rural part of Maine, and there are not any support groups for AN's that Im aware of, So  thanks for being here!
  I have recently had my 3.2 +cm tumor removed surgicaly ( aprox 3 weeks ago)  I didn't have any of the classic symptoms of an AN and was very lucky it was discovered before something really tramatic happened.  After I was diagnoised, I started getting a few bizzare symptoms.  Now I have left facial palsy, and total loss of hearing.  My head feels like half of it is missing, but is also very itchy. 
  I am wondering how long it takes for the palsy to lessen.  Right now, we are using EStim, with little response.. Ok, no response, but I was able to feel the current some today.   
  I am also wondering what some of the symptoms of a csf  leak woud be like.  I have recently (2-3 days) been experiencing a post nasal drip which tastes awful!   Has it been too long after the surgery to experience such a thing? I dont get much support from my doctor or his office staff so I would apperciate any input that could be offered at this time.  It is allergy season here in Maine, and I dont want to just be worried, or do nothing if it could be serious.

heyyouconnie

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Re: what to expect?
« Reply #1 on: May 17, 2005, 10:59:13 am »
I am glad you are thru with the surgery. Waiting to have it is the worse. I had mine removed Mar 1 and didn't have any symptoms but I went into the doc for my alergies and mentioned to him my loss in hearing. My scar area was very itchy too and nothing was wrong, but you might have the doc check you for an infection. Better safe than sorry. You should have that nose drip checked out too. I don't know the length of time it takes to heal that so I would ask. And if you think that doc don't give enough support, demand some time and answers. You went thru an awful surgery and they should give you as much support as you need! My doc said I could call him for any question any time, and your's should too.

My face is droopy on my right side and I have lost the hearing too. I have to remember this when we sit down for dinner at a restaurant. If I sit beside hubby with the bad ear, I can't hardly hear him. I have bad dry eye too. But I just keep using my eye drops and hoping it will pass one day.

I wish I could have been more help, but I know you needed a little pat on the back for support after all this. I do too. It's hard, but every day past is another day closer to total recovery.

Rex

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Re: what to expect?
« Reply #2 on: May 17, 2005, 03:33:37 pm »
I had a CSF leak while I was in the hospital.  One of the symptoms I had was that when I tipped my head forward fluid would drip out of my nose.  I also felt drips in the back of my throat which had a funny taste.  The fluid leaking from my nose or spit coughed up from the back of my throat had a slight pink tinge.   CSF is normallly clear, but some blood gets into the CSF durng surgery so the color changes.  I'm not sure how long after surgery it takes for the CSF to return to its normal color.

3 weeks post-op is definitely not too long after surgery to have a CSF leak and it is possible (although rarer) to experience one months later.  When I was recovering I was told to avoid blowing my nose or lifting heavy object (anything over 10 lbs) for 4 weeks after surgery to reduce the risk of CSF.  Even seven months post-op its part of the std list of questions my surgeon asks me during follow-up exams.

Bottom line, the other person who replied to your message is right...you need to get it checked out right away.


Pembo

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Re: what to expect?
« Reply #3 on: May 17, 2005, 05:55:06 pm »
I had a 4 cm AN removed last June and I still have facial paralysis. Given it is better but it can take up to a year or more to recover. I was told that movement would start occuring at 3-4 months and sure enough I saw a twitch at 4 months. I also used the E-stim with no results. I was able to feel it but it did nothing for movement. Be aware this is a controversial treatment.

My head also was numb and that took a bit of time also. Do a search on the facial/cranial nerves to learn more about their size and location. Also ask your doctors which nerves were involved with your tumor.

The hearing loss is a tough one to learn to cope with but you do adjust. I went from perfect hearing to total single sided deafness at surgery as well.

Please have that nasal drip checked out.

Take care and feel free to email me if you'd like to talk off the boards.

Barb
4 cm AN, 6/3/04
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Static

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Re: what to expect?
« Reply #4 on: May 18, 2005, 05:00:57 pm »
Get checked for the CSF leak.  I had one 4 months after my surgery and it was the same thing as someone else mentioned.  When I leaned forward, clear liquid would drip out of my nose on the side I had the surgery.  I also had a metallic/salty taste in my mouth.  Good luck!
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right