Post Gamma Knife Question

[Dave56]

Hi, I am fairly new to the AN world. I have a question about post gamma knife surgery from folks who've had had it that can share their experiences.

If I choose gamma knife as my choice of treatment, and assuming the tumor begins to shrink as a result of the radiation, will my hearing and balance be restored to pre AN levels?

Thank you!

[gary.s]

Hi Dave56,

I am not a doctor, but my understanding and personal experience is that you do not regain hearing and balance to the way it was prior to the tumor. Stopping the symptoms from getting worse is the goal with radiosurgery or traditional surgery. Some doctors say they can save your hearing from getting worse with radiosurgery, that is not the case with me and others I have communicated with. My hearing went from bad to worse and now almost total deafness in my AN ear. Sorry for the bad news, hopefully others will add their comments and experiences to your question. Best of luck,

Gary

[Dave56]

Hello Gary,

Thank you for your reply. I really appreciate it.

I have my 6 month check next week at NYU so I will  be finding out if my AN has stayed the same or if it grew.

[Dave56]

Hi folks,

I had my Gamma Knife procedure on 3/29/21 at NYU/Langone. From what the doctor told me he felt the procedure went well. My recovery went well and for the most part I was back to normal life and activities after a few days.

So now I am coming up on 3 months post gamma and it appears my symptoms haven worsened a bit. My balance has degraded somewhat and the hearing in my left ear has degraded somewhat too. Also, on the left side of my face I've had a couple episodes of face and eye drooping but it clears up after a couple of minutes. The face and eye drooping never occurred prior to the Gamma. Also, my tinnitus has worsened a bit too.

Is 3 months about the typical time that the tumor begins to swell as a result of the radiation? I've been chalking up these degraded symptoms to swelling, not 'real' tumor growth.

I guess I'm just looking for some insight from folks who went through the Gamma Knife to see if their post Gamma symptoms worsened and then eventually improved as the swelling went down.

My follow-up at NYU isn't until October 10th so I'm just trying to keep the stress level and worry down to a minimum, which hasn't been easy.

This is a great forum and very informative. Thank you for all of the valuable information.     

 Sincerely, Dave







L

[bfoley]

Hi Dave -

Sorry but not surprised by increase in symptoms post GK.  I had GK at Mayo Rochester, and they do not even do a 6 month f/u as they expect the tumor to swell as it dies.  I did notice an increase in symptoms (balance/dizziness and tinnitus) about the 2.5 month mark.  I never had facial involvement so I am no help there.  I was SSD in the span of 4 months, went from 96 % hearing to no serviceable, it grew that fast.  Many on the forum were placed on steroids if their symptoms became worse.  Mayo does not usually do that, they expect it.  They only follow up after a year.  Mine had definitely shrunk at the year mark.  This July will be the 2 year mark.

I walk around 5 miles a day (and try to do some of in on challenging surfaces) and do my vestibular exercises.  Yoga and core work for balance as well.  By doing these I think my balance is decent - not to the no tumor level but I can do most activities (with more concentration).  That's why we are so tired by the end of the day!!

Everyone has different goals when they chose treatments.  Mine was at least to maintain where I was at time of treatment, which I have done (and possibly improved the balance).

With facial involvement,  I would call to see if they want to put you on steroids.

Wishing you the best - please keep us up to date.

Cheers!  Bonnie

[Dave56]

Bonnie, thank you so much for your response and sharing your experiences.

From the 2.5 month mark when you noticed your symptoms increasing did they continue to get worse or do you feel they stabilized or started to improve at some point?

That's interesting you mention being so tired at the end of the day. I have experienced that myself. It's all of the extra focus and concentration that just normal activities take now. Even though my symptoms have degraded somewhat I am staying pretty active like yourself. I walk 5 miles a day up and down pretty big hills, I do planks and other core exercises. I still play golf every week and can still ride a bike. I'm going to keep doing these things and try to stay upbeat and keep a positive attitude.

I will be sure to post updates from time to time, especially once I return to NYU in October for my 6 month follow-up.

Thanks again and I wish you well with your 2 year mark coming up.

 

[mamugel]

I had GK in February of 2019. At the 4 month mark I developed hydrocephalus. (caught early and extremely rare) and had a VP shunt placed. My tumor had not grown but was probably emitting a protein that affected how my CSF was draining. Since that time I have had a slow but steady recovery. At 2 years and 4 months post GK I am doing quite well.  I perform my vestibular therapy exercises daily, ride a stationary bike, light weight lifting and gentle yoga. My hearing has diminished but I have adjusted very well. It seems that my tumor was a difficult one but I also had a remarkable response to treatment with shrinkage from 2.1 to 1.4. My neuro surgeon was very impressed as we had been hoping for no growth at this point. I really felt so much more like my old self at the 2 year mark. (It is good to be back.) This journey is arduous but the people on this forum and the entire ANA have helped me to cope and adjust.

[bfoley]

Hi Dave -

About your question back - I think at some point (3-6 months) it stabilized and around 7-9 months it started going back to what it had been prior to surgery.  I never stopped working on it. And I feel I am better in the balance area now than before surgery.

Thanks for your wishes!  And please do keep us up to date with your progress!

Bonnie