new symptom- dizziness

[sarahinPA]

hello all,
hope everyone is feeling healthy..ive been feeling more dizzy lately than ever before. i am 6 months post GK at UPMC and was just wondering if this increased dizziness is normal for my progress. I get my 6 month MRI on wednesday and hope to talk to my Dr. soon after that.

my dizziness comes and goes but when its there it makes me feel car sick..anyone else experience this after GK? i didnt have issues with this before GK.


thank you!

[epodjn]

Could you have something else going on like an inner ear infection? Just a thought. But sometimes I think I blame too many things on my AN when it's just normal stuff going on.

[Nancy Drew]

Hi!

I had GK 10/2008.  Balance test normal and no post GK hearing loss.  Diagnosed in May with fibromyalgia.  Can't take any of the meds for it because of interaction with other meds.  About two months ago started having some balance issues....falling (but not often), more so problems with dizziness and walking like a drunk and hitting door jams.  Was thinking maybe the fibro might be causing balance issues.  Fibro doc and PCP wouldn't even try to guess about the balance issues since I have an AN, and they want me to see my AN doc.  I guess this post is a bit premature since I am seeing my AN doc today.  Perhaps he will order a balance test.  However, my main question is to anyone out there who has fibromyalgia....can it cause balance issues?  I would sure hate to take steroids for AN if it really is the fibro.  I, too, don't want to blame everything on the AN.

Nancy

[Nancy Drew]

I got the results of my balance test two days ago.  In Jan. my balance nerve was compromised 5%.  Normail is 0-20%.  Now my balance nerve is compromised 71%.  For now my AN doc wants to take the conservative route of wait and see what happens.  If the symptoms get to the point where they are affecting the quality of my life, he suggested injecting gentamicin to kill the nerve.  Then the nonAN nerve would take over and should correct the balance issues.  However, he said this injection could possibly cause permanent hearing loss in the AN ear.  I didn't have any balance problems before GK so this is sort of a shock.  My hearing was good before GK, and I didn't lose any hearing after GK.  My doc said if any issues are going to come up after GK, they usually hit around 6-8 months.  I am right on target.  I really don't understand what is going on, and it would be nice if someone would chirp in with more info.  I probably need to get back with my doctor for more clarification.  I wasn't expecting this outcome.

Sarah, how did your MRI turn out?  Do you have any answers about the dizziness?

Nancy

[kahekili]

Aloha:
All of this is all new to me.  No "dizziness" at present...but definite equilibrium problem.  Walking with a cane for stability. Had GKnife procedure in May of 09.  Symptoms with equilibrium and tinnitus(sp?) seem to be getting worse.  Doctors in Hawaii say nothing significant to happen within the next two years?!?  Yikes.  Thinking about The House Ear Institute in Los Angeles.  Any suggestions?

Soooo happy to find this site for support.  All of you will help to keep my sanity as I proceed thru all of this.

Mahalo.

[Jim Scott]

Aloha, Kahekili ~

Unfortunately, I don't have any suggestions for your increasing dizziness and tinnitus except to agree with your idea of consulting the House Ear Institute in Los Angeles, California for an evaluation.  I did want to take this opportunity to welcome you to the forums and let you know that we're here to support you however we can.  I hope you can find some relief for your tinnitus and balance issues, soon.

Jim

[kahekili]

Thank you Jim.  Trying to get my medical referrals to the docs at The House Ear Institute for an appointment asap.  Need a second opinion which I now know should have been my first step in the first place!  Do you now of anyone that has lost their sense of taste?  Strange and again...very frustrating.

[mk]

Hello and welcome to the forum, although I am sorry you had to find us under these circumstances.

Unless I missed other posts, could you provide us with more information on the size of your AN? From what you mentioned you had GK a few months ago. Did you have the symptoms you are describing prior to GK, or did they appear afterwards? It is very likely that you are experiencing some swelling, which is very common during the first 6 months post radiation. Have you had a follow up MRI yet? If not you certainly should. If there is swelling, this may explain your intense symptoms - sometimes a course of steroids helps.
The sense of taste is due to the trigeminal nerve being affected. It may have been irritated from the radiation, or affected directly by the AN.

I think it would be a good idea to contact your radiation oncologist right away to consult with him/her. In any case, I don't think it is advisable to rush into surgery at such short interval after radiation, unless there are serious swelling problems, causing hydrocephalus etc. This is extremely rare. It can be a very rough ride for the first few months, but things usually do get better. I would advise you to read Francesco's story (fbarbera).

Best regards,
Marianna

[Jim Scott]

Do you know of anyone that has lost their sense of taste?  Strange and again...very frustrating.

Yes, I lost my sense of taste in the year leading up to my AN diagnosis.  Because all food tasted like cardboard, I practically stopped eating - and lost over 30 (unwanted) pounds.  It seems that, as it grows, the AN can impact the 7th cranial nerve that can affect our sense of taste.  The good news is that almost immediately after my de-bulking surgery - the neurosurgeon cut the tumor down to half it's original size, relieving the pressure on the 7th nerve - my sense of taste returned.  In the 3 years since, I've managed to keep most of the excess weight I had lost, off.   

I trust my experience, while guaranteeing nothing, of course, is encouraging to you, kahekili. 

Jim

[kahekili]

Thank you all for your suggestions and support.  It really sucks to have no taste...especially with all the great food here in the islands!  I see that most on this site have gone thru the surgical procedure.  Anyone out there willing to talk about GK and the after effects, progress...or lack of?

Sorry to be a bother but at last I can finally talk to someone and get some answers!

"E ola ia oe...long life to you."

Kahekili on Maui.

[cin605]

I didn' have gk i had surgery but i can assure you you are no bother to anyone here....we love all and any posts!

[Patti UT]

Sarahina,
  I had surgery but am dealing with #2. In research as what to do with this one, I met with a radio oncologist.  He said that anywhere from aobut 3-6 months after treatment is when the tumor can start to swell.  The swelling causes it to press the balance nerve and can cause the balance problems you are experiencing.  He said that if there is lots of swelling they need to put you on steroids  for a little while to reduce the swelling.  remember, there is more that just the balance nerve in there getting squashed by the swelling tumor. 
  I would highly recommend you go back to your doc for this asap.  I would assume they would probably do an MRI to check the swelling as well as the steroids.   You posted end of June, hopefullu you have already done this.  Also, you should read the radiation section of this forum. You will get lots of good info there.

Good Luck

patti UT