Decompression anyone?

[Archer]

Hey all,
My situation is this.  2002 I had an AN removed from right side, retrosimoid approach, so am now SSD with some small balance issues.  10 year followup MRI shows another bug on the left at 7 X 7 X 10 in September of 2011 so i am officially NF2.  Next MRI of spine and head on 12-5-11 shows AN at 7 x 8 x 13.  I am not sure if there can be that much margin of error in measurement or if has actually grown that much or if it is a comination of both.  Anyway, I am on W&W at Mayo and have been talking with Dr. Brackmann at House in the meantime.  Last conversation with Dr. Brackmann he saied he would not attempt to remove this AN as it is too much risk for my only good ear.  We discussed decompression to relieve some of the symptoms as an alternative to any radiation type of treatment.  I am looking at this as a stop gap for a few years if the AN keeps growing and assume I could opt for radiation later if needed.  My hearing is functional now but I notice some loss that hasn't been documented yet with a hearing test.  I also have been noticing some vertigo over this past year.

Has anyone had decompression surgery and what was the outcome.  I appreciate any info anyone could share.

Thanks,
Rich

[Raven]

I had it done on my right side, 8 days after they removed the one on the left side. This was a little  more then 4 years ago and so far so good. My DR. would not remove mine either because of the risk. Balance is really bad, everything in the background looks like it's bouncing when I walk, not as bad if I'm able to hold onto something. Hearing has been pretty good, no loss since then and of course non stop ringing in both ears. I only get annual MRIs now as the AN has not grown since I was diagnosed 4 1/2 years ago. I'm not aware of anyone else here on the forum that has had it done..............feel free to ask anything you want.

John

[Archer]

Thanks for the response John.  One Q about the balance.  Do you feel the imbalance is due all to the AN you had removed or is it partially due to the decompression as well.  I have had the imbalance since my surgery in 2002 but am quite used to it now.  I was hoping it wouldn't get worse if I had the decompression done.  Any thoughts?

BTW, Congrats on the no growth.  That's awesome.

[Raven]

Rich,

Since my surgeries were only 8 days apart I didn't have enough time to tell.  A few days before my first surgery I ask my Dr. what my balance would be like when it was all said and done, his exact words were "things in the background will appear to be bouncing"........sure enough he was correct. Walking down the street or in a mall, Home Depot, where ever, If I see someone I think I know, I have to stop so I can focus on them. I made the right decsion by doing the decompression because it has bought me some extra time before I have to do something with the remaining AN, extra time meaning being able to hear. I also asked my DR. how much extra time do I have, his response was, "there is no way of knowing", hopefully I can remain stable, so far so good. People are pretty impressed with my twin scars....LOL

Good luck in what ever you decide and please keep us posted

John

[nftwoed]

Archer;

  Not 100% sure, but wasn't the MCF decompression surgery developed by Dr. Jacklar, now at Stanford? Dr. B would know. We email frequently.
  Maybe you could email or write him ( Jacklar )?
  The MRI margin isn't wide as MR has an inherit error factor of plus or minus 2 mm.
  If you want to be able to hear in some years to come, MCF decompression seems a good option.
  Otherwise, the logical outcome of untreated NF-2 ANs is bilateral deafness. 

[Archer]

Thanks for the replys all.  I just got back from House and had a long talk with Dr. Brackmann.   Seems like Decompression is my future somewhere down the road.   MRIs show 3 mm growth in three months so that is rapid.  Hearing test shows no loss over those months though so we opted to wait for one more MRI.  Probably have an appointment card from Mayo when we arrive home.  Time will tell.  Still W & W for now.

Thanks again,
Archer


BTW, I saw Mindy at House on the 6th.  I recognized her from her Avatar.  I introduced myself and we talked a bit before being called to exam rooms.  She was in good spirits but was nervous, rightfully so, about her surgery coming the next day.  Hope all is well with her today.

[nftwoed]

Hi Archer;

  This is just personal opinion as I'm a Mayo pt. but, if you are in the area of HEI, they, whether Dr. B, F, H or Schwartz cannot be beat and MCF decompression with no additional hearing loss is a logical step.
  My feeling, again personal, is Mayo may watch and wait you until you are deaf.
  It just seems one should be able to recommend Mayo as well as HEI, but, a decompression was discussed in my case and not done. No reason was given. Then GK was discussed and not done. Again, no reason given.
  And I'm pretty well angry going from well servicable hearing, to no hearing in just a few years of them doing nothing but talk. The Neurotologist had to be corrected by the Neurosurgeon and the Neurotologist had to telephone Dr. Jacklar re, MCF decompression while I was sitting there in the exam room with him. It felt like the blind leading the blind. Neither Dr. had many years AN experience and still don't like Dr. Brackmann.

[Cheryl R]

I will add that I know a NF2 pt who is not on here who lost her hearing very soon after the decompression surgery at HEI.   She says she will never go back there again.                  So no guarantees can be found even with the best.       I have met this gal at the AN symposium 3 times.
                                                         Cheryl R

[nftwoed]

Hi;

  I was given odds of losing hearing at < 1% for the decompression surgery.
  Basically, they just start cutting away the top part of the IAC. The tumor is not touched.
  Apparently the person's auditory nerve had grown so fragile, the compression before surgery was holding it together?
  So, Cheryl, is the person now totally deaf?
  Question: Have you ever heard of a person's ( NF-2 ) AN to shrink and hearing to improve on it's own? Seems our body produces some pretty unexplainable sympathetic actions sometimes.
  I think if the auditory nerve is unbroken and there is a blood supply, though word discrimination may slip to 0%, some auditory input will remain.
  I hope you are well and enjoying Iowa's 'no Winter'. 

[Archer]

Thanks again everyone.  I have been stewing about this for a while.  After my visit with Dr. Brackmann at HEI two weeks ago it seems I can sense some change in my symptoms.  Maybe it is all in my head  but the Tinnitus is not the same continuous pitch anymore,  It fluctuates now.  Also my word discrimination (proper term?) seems to be slipping in a noisy situation.  In any case, I have to agree with you NFtwoed, decompression while there is something left to keep is the correct action.  So I am scheduled at HEI/St. Vincent to decompress late next month.  Hopefully, if insurance approves, I can have the stud for the BAHA put in at the same time. 

I can't believe I have to do this all again.  I guess this one won't be as involved as last time as they won't remove the AN but they will still be inside my head again.  Can't be much difference.

I am more at ease now that the decision is made but still not much good at work.  Can't seem to focus on anything as much as I should.  But if all goes well I should be back up to par in a couple months or so.

So NFtwoed, am I understanding you correct, that you had the decompression done.  If so, what was the outcome?  I looked back at many of your posts but didn't see specifics.  Maybe I missed something to. 

[Cheryl R]

Yes she is totally deaf.      Lip reads pretty good and signs with her family.       So one just has to know of always that small chance of a procedure not working.
No I have never had heard of the tumor shrinking and hearing improving.      Who knows,maybe it is possible.
                                                                               Cheryl R

[Raven]

Archer,

Just to make you aware of my experience after decompression............Two weeks after the decompression I went back to get the staples out of both sides, I was completely deaf. My right side had inner ear fluid in it, Dr. said it will go away on it's own, come back in a month. Went back a month later and was still deaf, ear still filled with fluid. Dr. stuck a needle thru my ear drum (most pain I have ever been in) and sucked out the fluid............I had instant hearing. Those 6 weeks of being deaf really sucked, it was over the holidays to boot. One good thing about having the surgeries done a week apart, I only had to recover one time.

My tumor has not grown, or shrunk, did the decompression have anything to do with it, who knows.

As NF2ers, what are our options, W &W is like doing nothing..........radiation ?

John

[Archer]

John,
That must have been very depressing while you were deaf.  Espescially when the decompression was not supposed to affect hearing.  I know there are risks as Cheryl says but you are right in asking as NF2ers what are the options.  Removal odds are poor, Radiation odds are not great, W&W as you say is do nothing.  Decompression, while it has some risks, I feel is the best shot I have at hearing preservation, at least for a time.  If it keeps growing I will have another decision to make some time in the future.  If not, I may be hearing wedding bells at my granddaughter's wedding some day.  Not too soon, she is only 6 months.  You gotta set a goal!   

I'm glad the draining, as painful as it was, worked and you have your hearing back.

[mindyandy]

Hi Archer. I have to say horray for you for such a positive attitude. Decisions are difficult to make especially in this situation.


Mindy