Author Topic: Help, Is this normal? - What have you found to resolve these problems?  (Read 3036 times)

libertycredit

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I had an AN in April of 2004 removed via surgery, it was very large.
I lost 100% of my left hearing, still can not tear up out of my right eye, feel dizzy, and especially "knocked out" in the mornings (every morning). I have major memory problems and am basically unable to function very well... Are these symptoms of someone who had this type of surgery 2 years ago? ---- What type of pain medicine is found to be the best? -- Are non specialist doctors simply "blind" to the symtoms that we express to them and weary about prescribing drugs?

I tried percoset for the first time in 18 months last week, I felt normal for the first time since my surgery and plan to go BEG my doctor for a monthly prescription to allow me to function. Am I alone in my symptoms, or is this a common listing?

Thank you for any advise.

-Carmen

penguin

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Hi, Carmen,

  I had my surgery in Jan, 2004 , left side 6cm+ , also had left side facial paralysis. I stayed in hospital for five weeks due to different complications and uncontrollable pain, by the time I left, I had three other surgeries beside the brain surgery. During my hospital stay, the doctors tried all kinds of pain medication none of them worked, I am in pain constantly. However, ever since I left hospital, I never had any pain again, what a relief! So my suggestion is that stay away from hospital ( living hell to me ), change your enviorment might also ease your pain ( in my case, I went home the pain was gone ). Regarding the balance issue you have , there are no easy solution, you might have to do phyisical theraphy for a few months. In my case, I had PT for about half year, Now, I am almost back to normal. I guess the most important thing is don't give up hope, time will heal everything for you eventually. Good luck in your recovery.                                         
« Last Edit: May 01, 2006, 02:49:30 am by penguin »

Janet

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Carmen,

Sorry to hear about your rough time.

 Many people have expressed memory problems on this site. Type in "memory" in the search box on this site to get some comments on the topic.

What kind of pain are you having?  If it is headache, I think you would have better care from a headache neurologist  Percocet is a narcotic and might not be the best option. If it is eye pain, then an opthamologist might have a solution for you, like puntal plugs.

I think what we have in common is it takes some work to get these problems worked out and specialists are a good start.
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

nannettesea

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Carmen, I'm 9 months post-op, constantly dizzy, trying to figure out if it's AN-related or something else, Klonopin is something I'm trying--makes you happy and helps dizziness but is addictive if you take too much.

Persistence and finding the right doctor to keep working with you is very important.  My surgeon is great, but also now working with a top dizzy doc in Chicago who is proving to be remarkable.  Trying many different meds, including one for migraine, to try and find other possible problems.

Memory, well, that is definitely affected due to my dizziness problems and inability to focus/concentrate.  Surgeons are often not sympathetic to these issues--if they did a "good" surgery many just stop there....
Nan

1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

themis1982

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Carmen,

I also had a large tumor removed in Jan. 2005. I had facial paralysis that is slowly coming back with the help of my physical therapist. It's funny that I read this post today, because I asked her THIS MORNING when my eye would tear up again. She said that is very unpredictable, it's different for everyone. I am about the 1 1/2 year mark and I don't have any tearing in my eye yet. You probably don't have anything to worry about. I know it can be super frustrating, but just wait it out.

Congrats on the 2 year!

~Becky

Pembo

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My surgery was in June 2004 for a 4 cm AN. I had complete facial paralysis. Things started to move after 4 months but the progress has been slow. I've seen the most progress in the last 6 months or so. (that's 18 months post surgery).

My eye waters sometimes but not regularly. I recently got a punctual plug and don't need to use my lacrilube as often.

As for memory problems, read this http://www.theblackriver.net/wobbler/wobblercognitive.html.  I had to print it to read it but it described a lot of my problems.  I've noticed that my memory is better but not as good as it used to be. I've forgotten my phone number! I write a lot more notes than I used to.

Hang in there! The first year, year and a half were really tough. Things seem to be better now.........
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006