Still Dizzy

[margielyn]

My husband had successful AN surgery about 4 years ago. They indicated that they got the entire tumor. Each year he gets an Mri and there is still nothing there. However, every once in a while he gets very dizzy, fatigued, and almost feels like he did just weeks after the surgery. He also has ringing in his ear, but of course he had this even before being diagnosed with AN. He says, however, it seems worse. He is completely deaf in that ear after the operation, but we knew that would be the outcome of the surgery. Has anyone continued to have symptoms such as the ones experienced by my Husband several years after surgery?

[anan88]

Don't worry, really! My surgery plus Gamma knife were over 6 years ago now, and I still get symptoms. My last MRI in Feb. was fine - tumour still tiny (originally 3cms) and not growing. Permanent tinnitus, balance still wonky when I'm stressed or tired, headaches, can't think straight, deaf on that side etc. but otherwise, fine! If you're still worried, explain to your GP. Sometimes you just need the reassurance.

[margielyn in reply to anan88]

Thank you so much for your response. He'll be happy to know that he's not the only one.

[Kristyll]

I still have tinnitus, balance problems with my deafness thirty years post op

[margielyn in reply to Kristyll]

Thank you so much for replying. He'll be happy to hear he's not the only one!

[margielyn in reply to Kristyll]

Thank you!

[JackSunseri04 in reply to Kristyll]

Did you have surgery?

I have 3.5cm and deciding between surgery or Proton Radiation as an option.

What is your opinion. Do you know of any other options available?

Having you been getting MRI once a year for the past 30 years?

Did any tumor grow back.

Do you still have fatique or balance isues?

Do you have Headaches.

Thanks,

Jack

[e-mail]

Phone-916-652-0649

[day52]

Hi I am 11years post an...I also get fatigue but sometimes think at 65yrs its my age and trying to do too much lol...i sometimes find myself side stepping but most of the time i manage very well.... i get a tight feeling down tge lefthandside of my neck and sharpe stabbing pain in my head and over the recovery time so far few odd things happen , sometimes i have fleeting thoughts about possible regrowth but mostly in ok...just have a stern word with myself and positivity returns

[margielyn in reply to day52]

Thanks so much!

[JackSunseri04 in reply to day52]

Do you still get MRI every year.

I guess you had surgery?

Are you still fatiqued?

I have a 3.2cm AN deciding on surgery or Proton Radiation Therapy.

Do you have an opinion and do you know of any other options.

I will greatly appreciate your thoughts.

Thanking you in advance.

Thank you,

Jack

[e-mail]

The word email is in my email address

Or call me at 916-652-0649

[drdeanbellavia]

Yes, almost everyone who has had their inner ear compromised by an AN and operated on has dizziness/imbalance problems. Seventeen years later my balance still goes out of wack. I control it with monthly exercises that reset my cerebellum, which helps me to regain my balance. See the post "How I used Brain Exercises to Regain my Balance" to help resolve your dizziness/balance problems.

[Choke]

I am over 6 years post op now and continue to have disabling dizziness and tinnitus. I went through months of vestibular and physical therapy to try to resolve it but after about a year my doctors determined that I, unfortunately, was one of the 5% of people who do not recover. The worst thing that I have experienced is pain in my neck like they had broken something. I was in surgery for 7 hours and my wife was told that due to my size and weight they had to hold my head in place the entire time. When I woke in ICU and for my entire stay in the hospital all I could feel was horrible pain in my neck. Not anywhere where they had to cut my skull open. They did a CT and xrays and said there was no damage but to this day it is as bad as it was when I woke in the ICU. At this point, I live with the dizziness but am no longer able to drive or work. When I am walking outside I usually fall due to the dizziness. In public people look at me like I'm drunk. Having to go from a $70K/yr job to SSDI of about $1500 a month has ruined my life and my relationships with my family and friends. I haven't given up, but it's been tempting for a long time now.

I hope your husband, or anyone else for that matter, is not as bad as I am.

[drdeanbellavia in reply to Choke]

It sounds like your neck developed a severe "trigger point" while in surgery for hours. You might be able to resolve your problem by getting "The Trigger Point Therapy Workbook THIRD EDITION" at Amazon (get the PDF download version; cheap). Just follow the pain charts and instructions on how to "crush"/massage that/those trigger points; it's amazing how effective it is. I sometimes get your kind of pain, but the TP therapy resolves it.

As far as your dizziness is concerned, you can do cerebellum resetting exercises; go to: thebioengineeringco.com/ind...

Nothing can be done about your tinnitus.

[6625]

Hi had operation to debulk my tumour 2 years ago it now measures 10mm it was 28mm before .I to lost my hearing and ha e really bad dry eye .Yes I do get tired quite often.i got scans every 6 months but now they have just put me down to one a year.im just praying that it doesn't start to grow again

[drdeanbellavia in reply to 6625]

I had severe dry eye for years (which can be very painful, especially when landing in an airplane), but not in the past four years because I use Systane Gel Drops before retiring and when awakening. It is the only thing that works for me, but I use it every day (put it with your tooth-brush so you don't forget). It takes about 10 minutes to absorb, so don't use it before driving.

[6625 in reply to drdeanbellavia]

Thanks i will have to try them did your doctor prescribe them

[drdeanbellavia in reply to 6625]

Yes, my ophthalmologist prescribed them, but whether he did or not, it works.