Vertigo and inability to work

[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!

[donjehle]

Those are great comments, MariettaJoker! 

Thank you for sharing them!
Don

[cmclane28]

I was diagnosed with a small left side vestibular schwannoma in July of 2021. I was having random vertigo attacks, mostly after having even just a little bit of alcohol. I also had diminished hearing and tinnitus on that side.

I had what they called stereotactic radiation in August 2021. I asked about the name of it and they would only say that it wasn't gamma knife or Cyber knife but it's the same type of technology. Anyway, I only had 1 treatment. A few hours after the procedure I experienced sudden severe vertigo again and it took me a day or two until I was really able to sit up normally. I was out of work for the entire week. After that week I was generally good except I have had balance issues ever since. The only way I can describe it is like my head is a fishbowl where it constantly feels like my head is swaying on a ship or something. At this point it's just my new normal, so I'm pretty used to it. It's not severe enough to cause me nausea thank God but it's a hassle trying to walk around sometimes, like if I'm walking with my head down looking at my phone or when I'm in a dark environment. I'm pretty good while sitting still at my desk or when watching TV but I have that "swimmy head" feeling whenever I'm up moving. It's definitely worse when I'm tired or if I haven't had enough water. I noticed about a month ago that the hearing on my left side is also now totally gone, so that has made it difficult to hear, especially in noisy environments.

I went to an ENT a few days ago and now have an appointment to see which type of hearing aid I may qualify for next week. I'm really looking forward to that. I'm also scheduled to go see a vestibular therapist next month and I'm hoping they will have a therapy plan that will help me with my balance issues.

Anyway, I hope you get better soon. I'm glad this forum is available to help us all share our experiences. It's so good not feeling alone going through all this.

[davebanninga]

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

Hi Don,


Since you are also in W&W with balance issues I'm curious if you experience the same I do regarding balance/dizziness.

Do you also get a dizzy attack if you go from a standing position to laying down on your AN side, for me everything starts spinning for a few seconds and I really need to adjust

or for a better example  whilst standing/ sitting trying to touch my shoulder with my AN side ear, so tilting it side way also gives me the same feeling, do you recognise this?


As for dizziness/ balance do you experience something off with your eyes? For me it feels one eye tries to correct for something  i get a slight dull feeling of pressure behind one eye and lightheaded, not extremely worrying but definitely not a nice experience it comes and goes, usually worse when iam busy or when driving.

I've found out covering one eye improves my feeling of dizziness at that moment

The dizziness can be scary at times because that's actually one thing I found affecting my whole mood.

[donjehle]

Hi davebanninga!

I don't remember struggling with the same balance issues which you mention.  However, that does not mean that what you described is not significant for you.  Acoustic neuromas can affect us in so many different way.  I had problems going down the aisles of a grocery store.  The vast amount of visual information coming to me overwhelmed me, and I had to hold on tight to the grocery cart to keep from falling to my left or to my right.  I know, the grocery cart has wheels and is not the most stable thing to hold on to when you feel like you are going to fall.  There are videos on YouTube of people who simply went up and down aisles in grocery stores which seemed to help me somewhat.  I could watch them from my chair, but when I became dizzy, I knew I was safe sitting in my chair.

I also struggled when lighting was dim.  Often patients in the hospital had their lighting in their rooms down low to sleep better.  But it was a challenge for me not to become dizzy.  For therapy, I often exercised with my eyes closed to re-learn how to move my arms and legs in the dark without falling.

And then there were simple balance struggles, like standing on one leg and removing my pants from the other leg.  Something as simple as taking off my pants to go to bed became a challenge each night and would take a long time to accomplish it.

The good news is that, with the help of an excellent vestibular therapist, I no longer need my cane to walk around.  I don't currently have a fear of falling.  And I am no longer dizzy, except when I become extremely tired.  And if I start to become a little dizzy, I repeat my vestibular therapy exercises for a couple of days, and then life becomes normal once again.

Vestibular therapy really changed my life.  I cannot say that it works for everyone.  Some others have not had the success I have had with it.  But I had kept my job (when I was fearful of losing it), and I eventually took another position which was an advancement.

I wish you the best success in dealing with your vertigo and balance issues!
Don

[mwatto]

Laurie I have read that diazepam helps vertigo. 'Diazepam is effective in treating vertigo, acute episodes in particular. It depresses all levels of the central nervous system (CNS), including the limbic system and the reticular formation, possibly by increasing the activity of GABA.'