CK in 5 or Proton in 1 - How much hearing is worth trying to save?

[ColorLady]

Finally making a move on my 1.5 AN after 7 years waiting. My chosen options are:

1. Five shots of CK at Beth Israel  with a mesh mask

2. One single shot of Proton Beam at MGH with no mask BUT with 3 ball point pen tip sized metal plugs permanently imbedded in my skull to guide the machine and a bite mold to stabilize my head

Don't get me wrong. I'm grateful to even have options. But here is my dilemma. Besides not loving having to have a surgeon install the 3 plugs in my head, I was surprised to be told that a single shot was recommended because my "hearing at this point is no longer worth saving". I do have some hearing in my AN ear that goes a long way to helping my non-AN ear. At what point is hearing considered too far gone to be worth saving? Isn't there a universally used scale to rate hearing and a scale number that is a breaking point? Does anyone know anything about that?

This is a tough choice and any input at all will be appreciated. Thanks.

[ppearl214]

Hey ColorLady!   

I've sent you PM/email as well.

Ok, for Proton at MGH..... site user here named "tsl" (Theresa)... I'm sorry you missed her at the brunch. She had Proton at MGH late last year (but I don't think 1-dose but multiple).  As for CK at BI.... well, you and I have discussed  and have shared my experiences. I'm not aware of others here that have gone to BI for an CK, but, there is a site user, "Sheryl" who's husband has his meningioma regrowth done at BI in Oct 07. 

In the wings... you know how to find me... and lordy, I hope you make the next ANA mtg and brunch... you have been missed!

Phyl

[HeadCase2]

Hi ColorLady,
  I had a couple of surgeons tell me that with anything above a 50 db loss, hearing may not be preserved.  And in my case with a 70db loss, they were right, I lost hearing on the AN side when the AN was surgically removed.  The threshold could be a bit different for Radiosurgery.  But in my opinion any hearing at all is worth saving.  Even with a 70db loss on the AN side, it still helped me determine what directions sounds came from.  Good luck with your treatment.
Regards,
  Rob

[Sheryl]

Hi ColorLady - As Phyl mentioned, my husband had a different type of benign tumor called a meningioma.  It was removed surgically in May of 2004, and he did very well until November of 2006 when it decided to make another appearance.  Another surgery was recommended by most physicians we consulted with (and believe me we went to many).   Even though he tolerated the surgery well, he did not want another.  So we started checking out radiosurgery.  We spend our winters in Florida and went to a CK facility there.  When he got back to Massachusetts (Cape Cod) for the summer we interviewed many and were most impressed with the Beth Israel CyberKnife group.  On 10/1/07, he underwent CK and did very well - I can't say enough for the staff and procedure. 

One fly in the ointment (and it doesn't happen to everyone) is the swelling that occurred around Xmas (2-1/2 months after CK).  He was prescribed Decadron and didn't do well with it - all kinds of problems until he was weaned off.  The good news is that he's had three MRI's since the CK and they show the tumor HAS NOT grown at all.  This was a tumor that was growing at least 0.5 to 1 mm a month prior to CK - so we are very pleased with that. 

Now that we are back up north, he will be seen by the Beth Israel group on June 9th with another MRI and we are anxiously awaiting that.

Sorry I couldn't have been more helpful from an AN standpoint.  I can tell you that I also have a benign tumor on the 9th cranial nerve (as opposed to the 8th) and am in a "wait and watch" mode for the past 6-1/2 years with hardly any change.  I have already decided if and when the time comes that it will be CK treatment and I would not hesitate to use the Beth Israel.

Good Luck - I know how frustrating all this can be.
Sheryl

[MaryBKAriz]

Hi,

I know with me I have some hearing also in my AN ear. However, in that ear the sounds are so distorted I do not recognize words. I cannot tell where sounds are coming from. My word recognition is around 20% time before last. I think that they want word recognition to be at 50%, if I am correct. Because of that I have just switched fro 3 days to one day of CK next week when I get treated. (I just learned this news yesterday).

Good luck,

Mary

[sgerrard]

My left side hearing after treatment is an average of 55 db down, and is 60-75 db down at 2000 Hz and higher frequencies. My word recognition, however, is still at 76%. With a hearing aid, I am back to within 20 db, including fairly high frequency, and good word recognition, above 90%. I don't have to say "what" all the time.

As Mary suggested, word recognition level is really the key. A hearing aid can boost up the signal, but it can't do anything about the distortion, except make it louder. If you have word recognition around 50% or better, I think modern hearing aids do a very good job of making the hearing useful again.

I would be inclined to stick with Cyberknife, just in case the hearing turned out to be usable.

Steve

[ColorLady]

I haven't figured out how to respond to a single member so I will just thank all of you for your input. I'm leaning to Cyberknife at Beth Israel.

[tsl]

Hi ColorLady,
Last Nov I had Proton Beam treatment at Mass. General.  I can tell you about my experience.  I was also told that my hearing in my AN ear was not worth saving and that the single shot treatment plan would  be done.  The radiation oncologist told me that I would eventually lose all my hearing and my tinnitus would get louder.  Re the hearing loss, the neurosurgeon wasn't as definite and said "maybe, maybe not."  I don't think my hearing has diminished since my treatment, but if it's going to be a gradual loss I may not notice it.  My hearing wasn't that great to begin with.

I did have the single shot treatment.  The implanting of the three metal beads was no big thing.  The neurosurgeion just gave a local injection for the sites.  Then he implanted the beads.  If I had to rate the pain involved for the whole procedure on a scale of 1-10, there was so little discomfort that it wouldn't even make the scale.  So, don't let this aspect of the treatment dissuade you.

I found that everyone I came in contact with was wonderful and more than willing to answer my questions. I'd be happy to answer any questions you may have about the actual treatment. 

It's a difficult decision deciding on which treatment plan.  Some times there are pros and cons to having options.

Take care,
Theresa

[fbarbera]

One idea would be to consult with an audiologist and ask for his/her thoughts on this issue.  If you look around this board, folks with SSD often describe the frustration of not knowing where sounds are coming from -- for that reason, it is possible that even a little hearing in your AN ear might improve your quality of life.  But that needs to be balanced against the word recognition issue.  Again, it might be worth consulting with an audiologist who is familiar with these issues and can tell you in more detail what the alternatives will mean for your quality of life.  Personally, I wanted to get through treatment with as little permanent loss/damage as possible.  I had CK and my hearing has remained stable since treatment, and I am extremely grateful for that.  If there is a chance of preserving useful hearing, why not? The only reason I can think of is if the hearing in that ear actually makes your life worse.

Best wishes,
Francesco

[ppearl214]

well, dear colorlady.....

Rumor has it you were recently treated with CK.... and I'm tickled that you are doing ok thus far.  As one that has been there supporting so many others, know we are here to help you out as well. I'm cheering you on.... you know it!

xo
Phyl

[sgerrard]

Hi Donna (saw your name in your other post today),

Glad to see you back from CK and feeling good about it. Now for the six month MRI wait, and the Verizon guy saying "can you hear me now?"

Steve