Post-Treatment > Balance Issues

Vertigo and inability to work

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laurienurse12:
Hi
I am a new member who was diagnosed in October with an acoustic neuroma. I have had a total of three cyberknife treatments. Vertigo and tinnitus are making it impossible for me to work. I am a busy, well WAS RN, however, there are times that I feel as if I am walking on cotton if that makes sense! Has anyone else had the cyberknife treatments and if so, how long was it before your symptoms subsided? I love nursing and want to work however, even housework is difficult at times. I am frustrated and searching for hope!
Thanks all!

donjehle:
Hi laurienurse12!

I also work in a hospital and struggle with balance issues.  I, too, wonder how long I will be able to continue working.  My acoustic neuroma was diagnosed in November, one month after yours.  However, it is small, and my neurosurgeon is recommending a watch an observation approach.  So, I have not had Cyber Knife (or any treatment yet).  And yet, I still struggle with my equilibrium which is not the best thing in a clinical setting.  There have been a couple of times when I have had to reach out and touch another hospital employee to keep from falling.

What my neurosurgeon recommended to me was to have vestibular therapy (which is a little different from regular balance therapy offered by most physical therapists).  I just had my first vestibular therapy session last Friday so I cannot give you a report yet on any success.  While I was being tested, I fell four times (fortunately, I was in a harness with safety ropes and did not hurt myself). My vestibular therapist said that she believed she could help me to gain at least 90% of my balance back (for my age group) in a month's time.

So, if that is true, rather than to stop working, I would recommend that you explore a vestibular therapist in your area.  At least that is what I am doing, and I am hopeful it will restore most of my balance back.

Best wishes,
Don

marlaterry:
Good morning,   
My partner or complete removal of the tumor was diagnosed with a 10mm AN and had 1 Gama knife treatment Aug 2020.  No problems until 6 months post treatment, his doctor says he is in the 1% that has these complications. nausea, vertigo, balance problems, inability to exercise when his heart rate goes up, he feels like he will pass out. Uses walking sticks for balance, exhaustion. Disabled and unable to work.  There are days when he doesn't eat at all and is down for the day. He has delt with this for over a year, massive steroids were tried as well as Physical therapy, neither were helpful.  We were referred to the U of W and underwent a day of testing. surgery is recommended, labyrinthectomy on the treated ear to disable/destroy any competing source of balance from that ear and let the other normal side take over, he will lose all hearing in that ear, hopefully he will regain a normal balance and elevate the other symptoms.  The other option is to remove the tumor.

My question to you is why 3 Gama treatments?  Is anyone else experience similar problems post cyber/Gama knife treatments?

donjehle:
Hi mariaterry!

First of all, I am so sorry for the experience of your partner after his gamma knife treatment.  But thank you for posting it because I think it is helpful for the ANA community to understand the different experiences of those who have gone through treatment, even if they are in the 1%.

In terms of your question (and laurienurse12 can answer it more completely), but from her post, it looks like she had 3 cyber knife treatments, not gamma knife.  As I understand it (and I'm a new member so I may not understand everything correctly), cyber knife can have multiple treatments (which is called "fractionated") whereas gamma knife is generally one treatment.  I think the latest version of gamma knife (the Icon) can do fractionated treatments as well, but that's another story and not what gamma knife has traditionally done.  The theory behind multiple treatments is that cyber knife can use less radiation per treatment so that there would be less side effects from the radiation.  But I understand that there is debate about that among the specialists.  Some say it helps; others say there is no difference between one treatment at full strength and multiple treatments at lesser strength.  Is multiple treatments under cyber knife better than a single treatment using gamma knife?  I don't know if there is clear evidence either way.

But, in terms of your question, laurienurse12 had 3 treatments because she underwent cyber knife, and your partner had one treatment because he underwent gamma knife.  At least, that is how I understand it.

I hope your partner's future goes well!
Don

MariettaJoker:
Seems like everyone’s recovery is very different. I had translab surgery on 11/30/21 and was only in the hospital for 3 days. On the day after I got home and every day since, I’ve walked 4 miles. No balance issues.

Now the bad news, I have likely permanent facial and eye paralysis on my right side. I just had eye surgery a week ago to fix my eye (weight in upper and graph on lower). Honestly, that recovery has been more impactful for me than the AN recovery! I still have to determine if I’ll pursue facial surgery to correct my droopy face.

My only advice is to keep walking through the challenges and don’t camp out and let yourself get depressed. It’s a journey for sure. We all wish we weren’t part of the club, but look around and you’ll see there are worse clubs to be part of!

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