Post-Treatment > Balance Issues

Balance Issues Post Radiation: severe, moderate, light or none?

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Freelander:
While I have yet to have any intervention, I am getting second opinions.   A well known surgeon recently told me that balance issues post radiation are worse than with microsurgery.   Based on age and a couple of other health matters, I have been leaning toward radiation, yet, physical activity is the heart of my quality of life, and balance is essential.   If you have had gamma knife, cyber kinife, proton therapy or any other radiation to treat your AN, what was your balance before treatment and after?  And importantly, would you do it over again based on your post treatment?  Are you happy or disappointed with your post treatment level of physical activity?

notaclone13:
Freelander, you and I are about in the same boat.  I am in my mid 60s and found out I have an  (8mm X 3mm) AN (rt side) a couple of weeks ago.  I still have good hearing in the ear,  but tinnitus.  I saw a specialist with a considerable amount of experience in both surgical and Cyberknife treatment of AN.  He strongly recommended Cyberknife and fairly soon while the tumor is small. He has been treating ANs with Cyberknife for some time and indicated that he has seen few cases of bad side effects.  Next week I will be seeing a neurosurgeon at a major medical center in our city to get another opinion. He may recommend GammaKnife since there is one available at the Medical Center. Like you, I am concerned with balance issues.  I have just retired and would like to maintain an active life style.  I have had issues with vertigo in the past (unrelated to the AN) and I don't want to have to deal with that again. I'd be very grateful if those that have had Cyberknife or GammaKnife treatment would comment on their experience with balance issues post treatment.

angielina:
Had Gamma Knife  at Toronto Western in Toronto , Ontario, Canada at the end of August,2017.
Extenuating circumstances had my balance off to begin with (polio, hip replacement, knee replacement) In 2014 diagnosed with an acoustic neuroma - 1 cm in my left ear. In watch and wait until 2017 when growth was toward the brain stem. Before gamma, I often used a cane because of my balance. Immediately after gamma, I used the cane all the time and often used a walker in large open spaces. Now, six months later my balance is better but still not great. I use the cane often.  The gamma was easy in comparison to the other things I have experienced and truly a learning experience for me.(retired teacher!) The exhaustion I experienced was probably the most difficult for me as I try not to let anything slow me down. The purpose of the gamma was to stop tumor growth and will have a follow up mri in April.( Later than normal as we spend the winter in Florida.) Hopefully there will be good news.

BradL:
I had GK in Dec 2013 at age 65.  Prior to treatment hearing in my AN ear was already very poor and  I experienced moderate balance issues.  The right side of my face would get numb as would the right edge of my tongue.  These symptoms continued for approximately 8 months following treatment.   By that point my balance was much better and the other issues except hearing loss started to moderate.  My AN has reduced in size from 16 mm to 11 mm since treatment. So far I consider my GK treatment to be a success.  No regrets.

Mlamb:
Hi there. My situation is unique but I will share my experience with you. I have a trigeminal schwannoma. I had surgery 3 years ago because it was 3 cm and I was 38 years old. My tumor was located in the Meckel’s cave, cavernous sinus area and a small portion extended onto the brainstem. Dr. Sisti removed only the portion on the brainstem and left a large residual measuring about 2.5 cm. I started following this residual tumor at NYU under the care of Dd. Golfinos and Dr. Kondziolka. One year1/2 Post surgery this tumor continued to grow and I decided to treat it with gamma knife with Dr. Kondziolka as I was told a second surgery was sure to leave me with greater deficits I had no Post treatment at Post Gamma Knife and my tumor was stable at 1 year follow up. At 17 months Post gamma I started having tingling and burning sensation so yo the lower portion of my face and teeth and tongue. This was all new. I asked for an MRI and all of a sudden my tumor has had a huge growth spurt that Dr. K thinks is not due to swelling. Now I am almost at 2 Year Mark and my tumor measured about 3.8 cm and 2nd surgery is inevitable. I am having surgery with Dr. Sen who is considered the best for this type of complicated cavernous sinus skul base surgery. My tumor has back in the brainstem it’s now causing brainstem distortion and swelling - resulting in double vision and dizzy spells. The dizziness is mostly when I go from sitting to standing and only last about 1 minute but it is still very scary. For that minut I feel like I can’t see in front of me everything is off. I am 41 now and everything I’ve done has been with the best doctors and nothing has worked. If you can watch and wait I would. Maybe try holistic treatments during this waiting period. Most doctors who recommend gamma say that in the small chance that it doesn’t work having had gamma knife does not complicate a subsequent surgery. That is not true. All the surgeon I have met now or spoke with said that the scar tissue caused by the radiation does complicate things and that tumors usually are more sticky and the nerves can’t handle much more manipulation so damage to them is a bit greater if a possibility. I am hoping for the best but of course I am terrified. But from what I hear and from my initial gamma knife experience small tumors have pretty good outcomes with gamma- most people do really well. Mine was on the larger side but everyone at NYU has been really supportive. I’m not sure where you live but I would also recommend seeing Dr. Lunsford at UPMC and Dr.Gardner at UPMC. Stay well and good luck on this journey.

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