Post Gamma Knife vertigo and mouth issues still

[T-Bone]

Hi Everyone,
I am new to the site and it has been a great source of information. It is nice to know I am not alone. I underwent Gamma Knife back in June 2007 for my acoustin neuroma (1.5 right side). About three months after, I began to have the mouth troubles: Dry mouth, mouth feels numb like novalcane trying to wear off and my tounge feels like I burnt it on really hot coffee all the time. Plus some foods do not taste right. Also my right eye and lips on the right side twitch a lot. My right eye no longer makes any tears. Also, I still have problems with my vertigo. The vertigo is worse certain times of the month and when the weather is hot (which is alot here in Florida). Of course my hearing loss remains the same. I have read comments about some having problems similar to me but they had surgery for their AN. I guess Gamma Knife affects alot of things too. So far my doctors have not been able to tell me if this is temporary or permanent or why my vertigo is worse some times over others.  I just had my second 6 month MRI four days ago. I am lucky and thankful that things are not worse. Alot of people have it much worse than me. My heart really goes out to you all. I would like to know if anyone else who has had Gamma Knife is experiencing these things too and if you have any helpful tips. Thanks!

[ppearl214]

Hi TBone and welcome. Good to see you here and participating on the forums...

I know that some that had radio-treatment have endured some kind of post-treatment facial issues... ie: the facial nerve may have taken a slight hit of radiation during the process. In my case, I can share that mine did as well (I had Cyberknife, not GK).  Approx 4 months post CK, I began to run into dry eye and some saliva production (lack thereof) issues. My dentist followed me for the saliva issue... my optomitrist for the dry eye.  I believe its not unheard of so please hang in there.

As for the vertigo, there are many here that offer up remedies to help the cause. Please check the "Balance" forum here as there have been discussions of vestibular therapies, Rx therapies, etc.

Again, welcome!
Phyl

[T-Bone]

Thank you! I will definitely check it out. I think to some degree my body is learning to adjust. I can finally ride my horse again without feeling like I am going to fall off. Who knows maybe one day I can walk in high heels again :-)

[ppearl214]

It is definately trying to adjust to the changes.... if you are approx 10 mos post treatment, it's not usual for things to crop up (usually, anywhere from 3-15 mos post radio-treatment).  I know of some that showed immediate signs, some down the road .... and some, really, not much of any sign of side affects.  "Individual results may vary" and that is what we need to keep in mind.  In doing our research, we should try to find out things that may crop up... and if they do... at least we're not so surprised if they do. Now, not to say to "anticipate" them, but at least we're not so alarmed by them, ya know what I mean?

High heels... haven't been able to wear them in ages... I wish....... hoping some of the threads on Balance/Vestibular issues helps the cause.  Horse riding.... look for OkieSandy on this site.... like you .. and me... another horse nut!

Again, welcome,
Phyl

[T-Bone]

I will look for her too- that is great! I am defintely a horse nut. Actually I am what you call a starving horse owner. I have a Palomino Quarter Horse. I have had him for 15 years now. I really do think riding has helped my body adjust some. It does require balance. So that is one form of vestibular therepy. I am going to check out some of the other treatments too on this site that has helped others. My neurosurgeon may be sending me to another doctor to inject medication into my ear to kill the damaged vestibular nerve and then the good side is suppose to learn to take over for both sides. I would like to know if anyone has had that done and what the outcome was for them. He wants to wait a full year from GK first which will be in June this year.

[tony]

Sorry to but in here
if you really have "tear issues" then there maybe real risks to
your eyesight - eyes burn and swell bigtime when the tears fail
there are a "manual" tears and a nightime lube that you can buy and manually
put in yourself - have a check with your doc
- and he can advise if its a good idea
the term "better safe than sorry " comes to mind ?
Best regards
Tony

[T-Bone]

Thanks Tony. I did buy some stuff called Lacri Lube. I agree- better safe than sorry. I have big eyes too so I need all the help I can get! 

[tdworkin]

I'm chiming in to comiserate with T-Bone about the 'novacained feeling' tongue issue. I hadn't heard anybody else having this one before so, while I offer my sincere apologies for sounding uncaring about your suffering, I am glad to hear I'm not the only one. (Sometimes, I wonder WHAT"S NEXT? and IS IT ONLY ME? and the latest, AM I GOING CRAZY? So, here's what I can relate-

I am 6 months post cyberknifetreatment on the west coast. I was getting jolts or stabs of pain from my tumor side ear through my face for a good while. Just chalked it up to the tumor having its tantrums while (hopefully) dying. I talked to the west coast folks who suggested upping my ibuprofen. I honestly don't know if that does anything or not. I have BIG stuffy head feeling, noises bother me like mad, and know my hearning on that side is diminishing. (Huh?)
But, there are always new things surprising me- and the latest is my tongue. (My crew of cheerleaders and supporters and I  start to joke about what could possibly happen next!) After two weeks of having a tongue feel like I was coming out of the dentist's chair or burned on something, I went to my local east coast neurologist. I filled him in on my CK info and he told me most lilkely it was the trigeminal nerve reacting to the swelling. There's this tiny triangle of nerves up there in the ol' brain that decide a lot for each side of the face. Chances are- the radiation/swelling is the culprit. I am now taking neurontin, increasing the doses under his supervision and hoping for it to STOP.   It's been over 4 weeks.
Of course I just had an ap't with him this morning and said the jolts I was getting through the  jaw (another part of the fallout)have decreased but that tongue thing is still there. Of course, like the sick kid turning up happy and fever free when you walk into the pediatrician's office, my face was "good" until I got home. Then,  my lower lip went numb and  it spread under to my chin and the bottom of my jaw. I took my night dose of neurontin early.
So, for you, my condolences at having to go thought this part of recovery and a suggestion to speak to your neurologist.

Hang in there!

[T-Bone]

HI Tdworkin- thanks for helping me to see that it is not all in my head and I am not crazy. It really threw me for a loop when it all forst started. Good news, I hope, is that I just saw my neurologist and radiation oncologist Wednesday and they said all this will reverse. It may take awhile but they said it will return to normal. I hope they are right. The vertigo may be with me for a long time. They said after two years whatever I have is probably the best it is going to get. My hearing loss remains the same-some days that full feeling is worse than others and ringing worse than other days. But at least I am still functioning- and glad to be independant. You hang in there too!

[Sue]

Oh yeah, I've had most of those sensations going on for me as well.  Actually, one of the symptoms I mentioned to my ENT when we were trying to find out what was going on.  Well, I was trying, I don't know what he was doing!  Anyway, I told him I had a "funny taste" in my mouth.  My symptoms were subtle then and I had a hard time expressing them fully to my doctor, I guess.  He said, "Well, I don't know what that is."  Sometimes I get a mild metallic taste, but it doesn't last long.  My facial nerve is involved with my AN, and it just is not happy I guess.  I have facial numbness which extends to my mouth and tongue also.  I have the burnt tongue thing going on, and I totally agree with the "novacane" sensation...Very weird and annoying.  I lately have experienced the "cobweb" feeling...like a cobweb has brushed against your face, or lips, or  chin - where I have the numbness.  I'm brushing off cobwebs that aren't there.  Nothing wrong with me!   I fully expect this to continue the rest of my life.  Then I can be pleasantly surprised if it goes away.  It's been a bit difficult coming to terms with these symptoms that are hanging on.  I am getting better at blocking them out. It takes time, I guess.  I am eternally grateful that it isn't worse.  I have had a bit of vertigo, but not much.  I don't think I have eye issues, at least none that bother me greatly.   I do hope that your symptoms subside over time and that you will be feeling better soon.

Sue in Vancouver USA

[T-Bone]

Hi Sue,

I have had that sensation too where you feel like there is a cob web on your face! On my right side (AN side) or I thought it was one of my hairs brushing up against my face- but... nothing there. I hope that is the nerves trying to repair and come back to life. Too bad the wierd sense of taste hasn't caused me to lose any weight- I wouldn't mind losing about 20 Lbs. Oh well.

[Sue]

Just yesterday I was surfing the 'net and came across another website explaining AN's and they had a great illustration of the AN and there was the facial nerve right next to it, and the tumor (Gawd, I hate that word!) is shoved up right next to the nerve in that tiny space and smushing it.  Now there's a good medical term.  Smushed nerves.  At least that's what it looks like.

http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm

Sue in Vancouver USA

[Betsy]

Hi T-Bone,

I too have weird sensations on my tongue (teeth, cheek, chin, etc) and vertigo, in fact it's what finally got me to the hospital and a diagnosis of AN.  Now, my doctors theory is that my vertigo is caused by another condition called migraine related vertigo.  Most of my nervey tingling/numbness happens when I'm getting, experiencing, or recovering from a vertigo attack.  However, it only happens on the AN side.  My own theory is that the vertigo probably is migraine related, and that the migraine "seeks out" the weakness caused by the AN resulting in atypical migraine symptoms.  At least the headaches aren't painful anymore.

So far, I've tried a handful of migraine suppressing medications without any luck.  I just filled a rx for Topamax, an anti-seizure medication that is supposed to be an effective migraine preventative.  Maybe this will be the one that works.

By the way, when I was about 5 months post-radiation, I started having big-time balance issues in addition to the vertigo.  I was considering having my AN side injected with genemycin to kill the vestibular nerve too.  I was reluctant because I still have fairly decent hearing in my AN ear.  Luckily I was referred to a physical therapist who introduced me to vestibular therapy.  It took some time, but it worked.  The unsteadiness hasn't totally gone, but it's manageable.  I have a feeling riding a horse is good therapy too, and a lot more fun.

Keep talking with your doctors until you find something that works...as Phyl put it "individual results may vary"!

Betsy

[T-Bone]

Hi Sue and Betsy,

I haven't been on in awhile. THanks for the information and Betsy- I have had a long history of migrains but it seems like I do not get them too much anymore unless it is the vertigo instead. That totally makes sense! Especially due to the "time of the month" it seems worse. That is when I use to get the most migrains. Thanks again guys!

[mk]

I just wanted to point out that the symptoms that you describe (novocaine sensation, tongue feeling like it has been burnt, dry eye) can happen even to people that haven't received any treatment. Actually this is how I was diagnosed with my AN, since I didn't have any other symptoms like hearing loss, vertigo etc. As someone else correctly pointed out, it is because of the AN affecting the trigeminal nerve. This nerve has 3 branches, and depending on which part of it is affected you may be feeling all these sensations. The dry eye is due to loss in corneal sensation. The eye is still able to produce tears, however it does not receive the correct signals from the cornea to do so. Eye drops are the answer to this.

In your case, since this happened after GK, there may be someminor damange to the nerve from the radiation (usually these are transient), or the effect is due to some swelling.

As I mentioned already, I have had this feeling for a year now, I still have it post GK and I expect to have it for the foreseeble future. However I consider this to be a minor nuisance, compared to all the major other side effects that people encounter.

Marianna