Balance Expectations after Gamma Knife vs. Translab

[UpstateNY]

I was diagnosed with an AN that is 12mm x 6mm x 6mm in size, so have been exploring both microsurgery and radiosurgery options.  My age is 50.  To be honest, both scare me and I have a very difficult time deciding.  My current symptoms include a nearly complete loss of hearing in my AN ear (it is near the cochlea), imbalance (lightheadedness or jittery environment) when moving, and tinnitus.  Although there are many risks with both procedures, my main concern is what can be expected from a balance perspective with each treatment?  I am considering Gamma Knife for radiosurgery or Translab for microsurgery.

I realize everyone is different, but did anyone have similar symptoms and sized AN to start out with who can describe their results during the tumor dying process for Gamma Knife or post surgery for Translab?  Although the physicians say that most patients don't have additional symptoms after Gamma Knife (UPMC and NYU) and most patients are back to work in 6-8 weeks after Translab (USC and House), my understanding is that the symptoms can also increase after Gamma Knife and the recovery from Translab can be much longer.

Since my AN is relatively small, my VNG test showed that I have only lost 20% of my balance on the AN side at this time.

Any help would be appreciated.

Thanks.

[ANGuy]

You will loose the other 80% of the balance function in that ear with either treatment.  If you choose observation, you will likely loose balance function in that ear as well, over time.  Forget preserving the balance function in that ear and start weighing other considerations.

The good news is, you don't need the balance function in that ear for a normal life.  You will get sick from time to time as the balance function deteriorates, but then your brain will compensate and you will feel normal again.  This will happen less and less and the function declines and approaches 0%.  If you get surgery, it will all go away in while you are under the knife.  The more you have left before surgery, the more you will loose from the surgery.

[UpstateNY]

ANGuy,

It is my understanding with Gamma Knife that the vestibular nerve may receive further pressure and/ or irritation during the tumor dying process due to swelling, which is why some have no side effects and others do.  Does this not mean the vestibular nerve will remain functional minus the amount that the nerve has been compromised?  Or is this incorrect?

My dilemma is whether I can tolerate the side effects from Gamma Knife better than a complete reset of my balance through translab. 

Thanks

[arizonajack]

It is my understanding with Gamma Knife that the vestibular nerve may receive further pressure and/ or irritation during the tumor dying process due to swelling, which is why some have no side effects and others do.  Does this not mean the vestibular nerve will remain functional minus the amount that the nerve has been compromised?  Or is this incorrect?

It's incorrect. The vestibular nerve is already damaged beyond repair.

Click on my link below and you'll read my story. Almost the same size, shape, location of the AN. Similar balance issues before GK. Balance resolved within less than a year after GK.

With a small tumor like ours, the swelling after GK is minimal. My last note in my story provides the size progression of my AN.

The following post GK images (not mine) will give you an idea of the progression of an AN of similar size and shape:

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

My dilemma is whether I can tolerate the side effects from Gamma Knife better than a complete reset of my balance through translab. 

Neither the surgery nor the GK resets the balance. The balance is reset by several functions that combine to compensate for the loss of the balance function of one ear. Those functions include the other ear, the eyes, the brain, and the rest of the body. They all work together to compensate regardless of the nature of the treatment. Vestibular therapy is highly recommended. I had it and so have others on this forum.

My post GK recovery was boring with minimal side effects other than being SSD for which I wear hearing aids.

Naturally, YMMV and there's never any guarantees, but I think many of us will agree that you appear to be a good candidate for one shot or fractionated radiation.

[ANGuy]

ANGuy,

It is my understanding with Gamma Knife that the vestibular nerve may receive further pressure and/ or irritation during the tumor dying process due to swelling, which is why some have no side effects and others do.  Does this not mean the vestibular nerve will remain functional minus the amount that the nerve has been compromised?  Or is this incorrect?

My dilemma is whether I can tolerate the side effects from Gamma Knife better than a complete reset of my balance through translab. 

Thanks

There are advantages, and disadvantages, of either treatment option, or watch and wait, AKA observation.  There are risks of positive and negative outcomes for all three approaches.  If there is one single factor that I would not include in my decision making, it would be balance function.

I am relatively young and very healthy.  My balance function is pretty much gone in my AN ear and my tumor is small.  Since I am not about to cut open my perfectly good head and risk death or paralysis from surgery, and I am not about to risk malignancy or re-occurrence and dramatically complicated follow-up surgery from radiation, and my tumor has not increased in size, I have chosen WW. 

I suggest you spend a few weeks or months learning about the different approaches to all of this, and consider worst case scenarios and how they might change your life, and decide what is going to be best for you.

[mcrue]

ANGuy,

You have a way with words. I like it. 

[ANGuy]

ANGuy,

You have a way with words. I like it. 

 

[alabamajane]

Arizonajack has given you very good info and a look into his personal journey with radiation and vestibular therapy afterwards. There are many therapies available to help after treatment.
In my opinion, the brain pretty much takes care of "fixing " any resulting balance issues that may occur with some time, even without vestibular therapy.

The main thing to remember about any treatment or non-treatment (observation) is that this is your decision ONLY to make with due diligence research and medically framed advice from at least one Dr (which none of us are). Only YOU will be left to deal with the consequences of treatment ( if any long term)  or waiting to see if anything happens to change your situation ( I.e. growth which would rule  out a certain type of treatment or an increase in symptoms).

It is a hard, agonizing decision we have all had to make. But this is one time that it is up to the patient to decide what is best for them. There are no guarantees with this tumor, but there is well educated advice you can receive from Drs you consult with. Consult with several mentioned on this forum for excellent advice and go from there.
Best of luck to you. It will get easier to come to your decision.
Jane

[areles]

my son will be having translab, and so far we've not heard anything about 'forget balance on that side'.  is that a thing?  hearing, yes, we've already written that off, but i wasn't aware of the inevitability of permament balance loss.  it won't really make a difference in our decision regarding how to approach, but as my son is prepared to lose his hearing permanently, but not his balance, and hopes to eventually surf again at some point - even if in the distant future - after surgery, i'd like to hear more about this.  (i realize he may never have surfed again anyway, but if it's just a given that he won't be able to, that's a bug i'd like to plant so he can get used to the idea, and i'd also like to have some baseline knowledge in order to ask intelligent questions as we consult.)

any information you can provide would be very much appreciated. 

You will loose the other 80% of the balance function in that ear with either treatment.  If you choose observation, you will likely loose balance function in that ear as well, over time.  Forget preserving the balance function in that ear and start weighing other considerations.

The good news is, you don't need the balance function in that ear for a normal life.  You will get sick from time to time as the balance function deteriorates, but then your brain will compensate and you will feel normal again.  This will happen less and less and the function declines and approaches 0%.  If you get surgery, it will all go away in while you are under the knife.  The more you have left before surgery, the more you will loose from the surgery.

[mcrue]

It is my understanding in regards to microsurgery that the surgeon in most cases will usually cut the balance nerve so the body has a clear signal to compensate balance with the balance nerve on the other side.

My pre-treatment test already indicate my balance nerve is more than 96% destroyed by my acoustic neuroma, so the good news for me is that my body has already compensated to the other side.
I never had any balance issues to begin with, and likely never will if I were to elect microsurgery or radiation treatment as my balance nerve is already destroyed.
You can have testing to figure out where your balance nerve function is at prior to treatment, which may indicate to some degree how easy your recovery will be post treatment.

With respect  to radiation, it is my understanding that for the most part the symptoms that exists prior to treatment are the symptoms that will exists post radiation; however, I have ready a lot of people struggle with low energy and fatigue afterwards.

[THBKS]

anguy, arizonajack
that was some great info.

Don't know what my balance% was before surgery, at that time didn't realize there was a %.
but I felt (dizzy, lightheaded) of balance all the time.
like feeling drunk, don't know I was actually staggering just felt like I was.

after 30+ years still (dizzy, lightheaded) and feel like I'm off balance.
but I can climb ladder etc. and it seems as I adapt or adjust to what I'm doing.

So the way you describe it makes sense I guess my body is making up for what I'm missing.

If I can find my medical records, will see if they noted a %.