New Issues?

[terisandler]

I know this is a question for my doctor but I won't be able to ask his nurse anything until Monday, so here goes....  I had CK a year ago and 3 follow up MRIs.  Last fall I experienced some dizziness and vestibular issues but they were manageable and eventually let up.  I am noticing that my balance issue (which has been ongoing) has now gotten to the point where I am stumbling over my own feet, having some more difficulty on uneven ground, and even some difficulty on stairs.  I have fallen 2x walking my little 12 lb Shih Tzu, both times when he was pulling on his leash and I somehow stepped off the sidewalk onto grass.  I also have noticed some numbness on the AN side of my face.


My most recent MRI was last month and the radiologist declares that the AN is stable.  My radiation oncologist parroted that finding and added that there is some shading that indicates necrosis.  I plan to call on Monday but I am pretty certain he will repeat the latest MRI conclusion that my AN is stable.  If that is the case, I will contact the neurotologist. I have not been following the balance therapists' exercise plan and figure that may be part of the issue but stumbling was never an issue prior to dx and treatment...


So, just looking for some post toastie feedback about this.  I am actually beginning to wonder whether or not the stumbling is  actually related or a new symptom for another neurological issue.  Thanks guys!

[Ruthie Mac]

I would guess that the stumbling is probably related and not to worry about other issues.
It took my 'stumbling' and balance issues to finally convince my Doctors to order an MRI to discover the AN in the first place. Even then they weren't convinced because I still had good hearing. So they sent me to the top Neurologists at Mass General Hospital in Boston to make sure that the balance issues weren't caused by anything else. After extensive testing, they concluded there was no other cause, so it must be the AN...duh! thank god for this forum and everyone's descriptions of their balance challenges or I might have been more worried.
I'm 6 months post radiation and trying to stick with a consistent PT regimen- my therapist says she sees progress although I'm still wonky a lot. The good news is: the vestibular nerve is resilient.
Hopefully your balance issues will be short-lived and just one more pesty symptom of the AN on its way OUT!
But I do think the PT exercises help...
Ruthie

[Echo]

Hi Teri,

My immediate guess was some possible swelling until I read further and see that the AN is stable.  I would suspect and hope your balance issues are related to the AN and not some new neurological problem.  How's your vision - any ocular motor issues? 

Let us know what your Dr. has to say.

Cathie.

[terisandler]

I sincerely doubt the radiation oncologist know much about ANs.  I spoke to his nurse and described the various issues.  She called back after talking with him and said my symptoms don't have anything to do with the treatment I received.  But that did not answer the question I asked - could they have anything to do with the AN?  His recommendation today - monitor the symptoms and call my PCP.

When I saw the doc after my MRI last month I asked him about other symptoms and was given the same non answer.  I will wait a week or so and then contact the neurotologist for his opinion.  To be continued.....

[theshawn65]

Well I'm no doctor, but I thought any form of FSR still had the chance to cause temp or long term side effects of various types and degrees that can be related to the radiation hitting good tissue or damaging nerves? If you had balance issues before treatment the CK may have helped stop tumor growth but didn't address balance issues. Each tumor grows differently and yours  may be more balance nerve entwined?

The CK Radiation if a tad off could have damaged the balance nerve, which may or could be mitigated by balance therapy regime that helps not only train your brain to not need the affected balance nerve on that side, but also helps the damaged balance nerve recover? This is where balance therapy helps and I would advise adhering to your balance therapists recommended regime. Seems it could only help imo.

I don't know I'm just throwing thoughts out there. God speed hope you find out soon.