Author Topic: Did your balance issues clear up after translab?....After gamma knife?  (Read 26438 times)

arizonajack

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When the hearing is gone and there's no reason to save the nerve, I've heard from one source that severing the nerve results in the other side taking up the slack and eliminates the balance issues. Another source says this is not so and the balance issues never really go away.

Gamma knife, on the other hand, doesn't address balance.

Experiences, anybody?
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

TJ

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #1 on: November 12, 2012, 08:05:10 pm »
arizonajack,

I did not have GammaKnife but I did have CyberKnife.  The way the doctor explained it to me is that both GK and CK the hope is to stop the growth of the tumor.  Which means of course the tumor is still there and whatever pressure it is putting on the nerve will remain.  So if you have balance issues you most likely will have them after radiation.  In my case I still have balance issues, but the doctor hopes with additional training it can get better.

TJ

leapyrtwins

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #2 on: November 13, 2012, 03:59:12 pm »
When the balance nerve in one ear canal is destroyed, the balance nerve in the other ear canal "takes over" and the body adapts.

I had retrosigmoid, and my balance is almost normal.  I say "almost" because I find it's still compromised when I'm very fatigued, walk a long, long distance, or walk in the dark.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

mk

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #3 on: November 13, 2012, 09:52:59 pm »
My balance nerve obviously had been destroyed long before my GK and surgery. At the time of my VNG testing I was told that I had 90% weakness, even though I never experienced balance problems. Even the ENT upon doing the standard tests had said that my balance "looks pretty darn good". In slow growing tumors the nerve may deteriorate very slowly, in which case the other side compensates fully, without the patient ever realizing it. In these cases cutting the nerve after surgery does not make a difference.

People who usually experience severe problems after surgery are the ones who have a fully functioning nerve, and all of a sudden find themselves with only one working side. This obviously is a shock to the body, and it may take quite a long time to compensate. Vestibular therapy is often needed.
The same people are the ones experiencing problems after radiation. In this case it may be even more complicated, because you may end up with a partially functioning nerve, which is sending wrong signals to the brain. A partially functioning nerve may also be a problem in hearing preservation surgery, like middle fossa, which does not sever the nerve.

Have you had a VNG test? It is quite long, but it is the only way to tell what is the current status of your vestibular nerve.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Kathleen_Mc

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #4 on: November 14, 2012, 01:05:34 am »
I wouldn't fully agree with this theory, I myself didn't have a balance issue pre-op, although the nerve was compromised already, I came out of surgery with a balance issue, the nerve having been severed. Although my balance is greatly improved over the years it remains an issue, one that gets rapidly when I have any sinus issue (compromising the other side).
Just my two cents
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

PamJ

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #5 on: November 14, 2012, 09:11:03 am »
I didn't have a balance issue pre translab but after op was I was all over the place, 18 months on and I'm nearly back to normal but do have to remember not to turn too quickly and when I get tired my balances tends to suffer a little.
March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

lrobie

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #6 on: November 14, 2012, 12:44:06 pm »
Arizonajack,

It sounds like you are referring to the "hearing nerve" in your first sentence and it being severed.  However, it is the "vestibular nerve" that is cut during surgery.  If you have translab, the hearing nerve is also cut.   Although, there may be some balance issues with the hearing nerve being cut, I don't believe the hearing nerve on the opposite side helps to compensate for your balance (if this is what you were referring to).  In addition, once your vestibular nerve is cut, initially your brain shuts down the other side to make the two sides more similar.  Over the months after removal of an AN, the nerve cells in the vestibular area of the brain slowly develop a steady activity on their own and there is a slow return of information from the vestibular system.  This helps to improve your balance.  Some people have already had this occur prior to surgery without them even noticing it.  I had occasional bouts of wonkiness prior to surgery.  After surgery and currently, I have wonkiness all the time.  There has been some improvement.  Most likely, I'm one of the ones who will have to wait a little longer for some relief of this wonkihead feeling.

I hope that answers your question.  I can't answer about the part about gamma knife. 

Lisa 
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

arizonajack

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #7 on: November 15, 2012, 08:43:43 pm »
Lisa - I was referring to the vestibular nerve.

Marianna - I had the VNG in June. 88% right unilateral caloric weakness. A unilateral weakness greater than 25% is considered significant. 42% left directional preponderance. A left directional preponderance greater than 20-30% is considered significant.

And for all of you, thanks for your comments.

It's a small statistical sample :-) but the consensus seem to be that balance is an issue after surgery and after radiation. Pretty much what I suspected.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

mk

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #8 on: November 17, 2012, 08:56:55 pm »
Just a quick clarification. The vestibular and hearing nerves are actually one nerve, the vestibulocochlear nerve (cranial nerve 8 - I hope I spelled this correctly), with two branches, the vestibular and the cochlear. Usually ANs grow on the vestibular branch, but during translab both branches are severed.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

arizonajack

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #9 on: November 18, 2012, 01:11:55 pm »
Just a quick clarification. The vestibular and hearing nerves are actually one nerve, the vestibulocochlear nerve (cranial nerve 8 - I hope I spelled this correctly), with two branches, the vestibular and the cochlear. Usually ANs grow on the vestibular branch, but during translab both branches are severed.

Marianna

It's true that the 8th cranial nerve branches into the vestibular and cochlear nerves.

But the photos and drawings I see online depict ANs growing on the nerve before the branching, which seems to explain why many AN victims have balance and hearing issues (like me).

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

lrobie

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #10 on: November 20, 2012, 10:32:53 am »
But somehow you can have your vestibular nerve cut and it not affect your hearing.  So when they branch out, they must become their own nerve.  Not sure, just trying to make sense of it.   ???

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

arizonajack

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #11 on: November 20, 2012, 11:28:29 am »
But somehow you can have your vestibular nerve cut and it not affect your hearing.  So when they branch out, they must become their own nerve.  Not sure, just trying to make sense of it.   ???

Lisa

I'm also trying to make sense of it.

The following diagram gives you an idea of the location of the branching into two.

http://antranik.org/wp-content/uploads/2011/11/vestibulocochlear-nerve-vestibular-cochlear-semicircular-canals-ganglia.jpg

And here's many diagrams that typically show the location of the tumor being in an area before the branching.

https://www.google.com/search?num=10&hl=en&site=&tbm=isch&source=hp&biw=879&bih=565&q=8th+cranial+nerve&oq=8th+cra&gs_l=img.1.0.0j0i5j0i24l8.1570.2846.0.5522.7.7.0.0.0.0.120.715.4j3.7.0...0.0...1ac.1.OgTRNF46HuY#hl=en&tbo=d&tbm=isch&sa=1&q=acoustic+neuroma&oq=acoustic+neuroma&gs_l=img.3..0l9j0i5.253433.255991.2.256176.16.12.0.4.4.0.207.1504.4j7j1.12.0...0.0...1c.1.0tSXFCfzlcw&bav=on.2,or.r_gc.r_pw.r_qf.&fp=5f6d326197fe595d&bpcl=38625945&biw=879&bih=565

That appears to explain why AN victims have both hearing loss and balance issues but doesn't explain a lot of other things.

It's really all beyond me and I'm just guessing.

While I was looking for diagrams I came across an article that has three case studies. Number 1 and 3 are examples both ends of the spectrum.  1 where hearing was preserved and 2 where a total loss of hearing occurred.

http://www.neurosurgery.uthscsa.edu/display_patients.php?ps_id=33&pg=

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

james e

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #12 on: November 29, 2012, 10:26:04 am »
I had mild wonky-ness for a short period of time. Then I had a stroke in April 2009 caused by a FPO. Got the hole in my heart repaired, and the wonkies went away. I thought maybe I was having TIAs prior to my stroke, caused by the hole in my heart, causing the wonky-ness. Six months later, I had a massive attack of vertigo and that led to the discovery on my AN.

I had a translab in March 2010, and the wonkies have never gone away. I had therapy, and it was of little benefit. It never goes away, but I am used to it. It is kind of like your hair turning gray, wearing glasses...stuff just happens.

If your good side is supposed to take over, mine never did. Just like individual recoveries, we all just have different experiences.

James

stoneaxe

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #13 on: March 20, 2013, 08:47:28 pm »
Sorry I'm late to this conversation. I've had both radiosurgery and surgery. After proton beam in early 2004 I had bad balance problems for 4 years. I did manage to get reasonably close to normal ( http://www.anausa.org/smf/index.php?topic=8379.0 ) but I still had bad days occasionally.
I had trans lab surgery in 2009. My balance at that point was pretty good going in so it's not an exact comparison but after surgery I have never had a real bad day like I could after radiosurgery. Still wonky if I don't get on the water but not spinning and falling at least. I would occasionally be afraid of driving pre-surgery, never since. The way it's been explained to me is that there is still some potential for residual signals to travel on the vestibular nerve after radiosurgery. Because of these "short circuits" your body has a harder time of finding the new normal...a moving target.
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

arizonajack

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Re: Did your balance issues clear up after translab?....After gamma knife?
« Reply #14 on: March 21, 2013, 09:07:51 am »
When I started this thread last November I had just had two consults. One with a neurosurgeon at House who recommended translab and said he would sever the nerve and my good side would take up the slack pretty quick. The other consult was with a neurosurgeon in Phoenix who is on a team that does surgery and radiation and said that balance issues continue either way.

I had Gamma Knife in January and by that time I was already experiencing a little improvement in balance. I'd had balance issues for a year and I guess there was some natural compensation.

I don't feel any different post GK. I had some vestibular therapy and learned some exercises that challenge my balance. With minimal effort my balance issues have become just a minor annoyance and I expect that's the best I can hope for.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0