Author Topic: Balance Issues Post Radiation: severe, moderate, light or none?  (Read 3905 times)

Freelander

  • Jr. Member
  • **
  • Posts: 52
Balance Issues Post Radiation: severe, moderate, light or none?
« on: February 02, 2018, 11:11:35 am »
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

  • Sr. Member
  • ****
  • Posts: 275
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #1 on: February 02, 2018, 04:03:16 pm »
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

  • New Member
  • *
  • Posts: 3
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #2 on: February 02, 2018, 04:07:29 pm »
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

  • New Member
  • *
  • Posts: 6
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #3 on: February 02, 2018, 11:29:18 pm »
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

  • New Member
  • *
  • Posts: 33
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #4 on: February 03, 2018, 09:17:04 am »
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.

Freelander

  • Jr. Member
  • **
  • Posts: 52
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #5 on: February 03, 2018, 08:00:55 pm »
Mlamb thank you for sharing your very complex story, your ongoing balance issues are heartbreaking and I hope someday they diminish.   I am having a second opinion in NYC with Dr. Kondziolka next week to talk about radiation, and will post his response to my questions regarding post radiation balance issues here.   Your suggested docs at UPMC have also been on my list.   May I ask if you also had a chance to meet them before choosing NYU?  Is that why you suggested them?

Notaclone13, good call.  My AN started out at 6 mm 2.5 years ago, and is now 12 mm.   Yes, I too would love to hear more stories about post GK, CK, or proton radiation balance issues from other AN warriors. 

Good to hear from BradL.   I am curious about the length of time (8 months) it took for your balance issues to get much better.   Is that considered a normal amount of time?   May I ask where you went for treatment and who your main doctor was?

Hope to hear from others and enjoy that Florida sunshine angielina! 

BradL

  • New Member
  • *
  • Posts: 6
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #6 on: February 03, 2018, 10:44:46 pm »
8 months is not unusual for symptoms to get better.  I think the process can take even more time.  In addition to a numb face I had a wonky head and would sometimes lurch a bit from side to side when trying to walk a straight line.  All of that is now completely behind me.  Some how the body compensates.  I think visual input compensates for damage to the balance nerve.

I had GK at Providence Gamma Knife Center in Portland, Oregon.  Of course, it is not a high volume center for treatment of ANs.  But I received great care from Dr Harold  Kim and Dr Matthew Solhjem.

If you are interested in CK or GK you might want to consult with Dr. Steven Chang at Stanford. I did not go there.   But he has a great reputation and is highly experienced. .

Mlamb

  • New Member
  • *
  • Posts: 33
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #7 on: February 04, 2018, 07:09:20 am »
I mention UPMC because Dr. Lunsford trained Dr. Kondziolka so perhaps he is a just bit better- however, Dr. K has an incredible reputation, it’s just nobody can really predict how your tumor will react. All the doctors that I have spoken to who have viewed my scans say it is highly unusual for these tumors to react this  way. I thought I’d mention Dr. Gardner because he does a lot of minimally invasive approaches and is probably the best at them. He’s has great outcomes. I’m not sure if your tumor is a good fit for minimally invasive but he said mine would be perfect for an approach coming through the crease of the eye. Being that this is my third time trying to attack this tumor, I don’t feel comfortable doing something that is fairly new. I would also consider sending your scans to Dr. Chang at Stanford. He does phone consults and has not only a great reputation but he is honest. He told me for my case I am in good hands with Dr. K and he didn’t see an advantage to traveling to CA. BEST of luck to you. I think you will like Dr. Kondziolka he does a ton of these and truly most people do really well.

Freelander

  • Jr. Member
  • **
  • Posts: 52
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #8 on: February 12, 2018, 04:13:39 pm »
As referred in an earlier post, I finally met with Dr. K.  For me, that experience reinforced the benefit of an in person meeting when talking about any medical issue.   He did refute the notion that microsurgery may be statistically better for preserving one's balance than radiation.  There just aren't enough definitive studies about the pros and cons, and likely that it will be many more years, since only 3000 AN cases turn up on average every year.  If one has a growing tumor, his advice is to treat, since tumor growth can further stretch an already stretched nerve, and likely exacerbate balance and hearing issues.  When I mentioned that my lifestyle includes extensive physical activity, he said that was a good thing, and can only help with neutralizing additional pre and post balance issues.   Yet, no guarantee.   He  thinks GK is better than CK, yet in the right hands both are equally effective. Then again, one can not over emphasize that we are all different, and how a treatment effects one of us may not be the same for the other.   It seems the best we can do pre treatment is to read credible studies and clinical investigations,  engage with others who have AN, such as on this ANA site, meet with and ask questions from licensed medical experts, and know your disease and personal symptoms very well.   Stay optimistic whatever your chosen path.
 

kkc

  • New Member
  • *
  • Posts: 15
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #9 on: February 12, 2018, 07:15:11 pm »
Hi there,

I had GK two years ago for an AN approximately 1.5 x 1.5 x 2.0 -- at age 60.  I had slight balance issues beforehand.  Following GK (and I cannot remember how soon afterward or for how long) I experienced some crazy balance issues when I attempted to walk in the dark.  I was staggering & almost fell.  Never noticed it during the day.  It resolved itself and I would say I now have very slightly worse balance compared to pre GK.  I sometimes can't walk a perfectly straight like and cannot balance on one foot for over 45 seconds.  I don't think I could pass a roadside sobriety test, haha. 

I just hired a personal trainer & he said my balance is pretty typical for the folks he sees my age.  I enjoy walking and hiking and Pilates - so I do work on balance in those activities.  I have tried riding a bike since GK but it took a lot of concentration.  No falling, though!  I truly believe that if I worked more on my balance I would improve.  That's one reason I hired the personal trainer.  I think I could've benefitted from some physical therapy for balance but my dr didn't think I needed it.

One last thought - there's a very active and large Facebook group simply called Acoustic Neuroma - which might be a good place to ask your question.  I find it a supportive and encouraging group without a lot of drama. 

Best Wishes,
Kay














KeepSmiling

  • Full Member
  • ***
  • Posts: 118
  • details about patient written by wife.
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #10 on: February 16, 2018, 02:55:51 pm »
In the case of my husband, he was an avid bicyclist before Proton Therapy and had no balance issues prior to Proton Therapy or during the 6 weeks of proton therapy. After Proton Therapy he had no balance issues. 
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

GP9

  • New Member
  • *
  • Posts: 10
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #11 on: March 17, 2018, 01:14:26 am »
My balance is not the same, and I had GK about 8 years ago. It is worse at night, which is when I work, but even so, it is not too severe.

ampeep

  • Jr. Member
  • **
  • Posts: 91
Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Reply #12 on: March 24, 2018, 10:09:42 pm »
I had GK about 4 yrs ago; couldn't hear very well out of my right ear & occasionally had some balance issues.  About 6 months after the treatment, my hearing disappeared completely & I had a lot more dizziness.  This lasted for 4 months, then slowly my hearing came back enabling me to localize sounds, but recognition was very low.  The dizziness also subsided at the same time.
8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

 


anything