FSR in Alabama

[Romans828]

Does anyone know of a facility that provides FSR in Alabama? If not, where is closest facility? I'm scheduled for GK treatment, but the more I research FSR, the more I think that it's the way to go. Would appreciate any input along this line and as regards to insurance coverage of FSR ( I have BCBS ).

I was sold on GK until I met with the nurse of the neurosurgeon at UAB after my initial meeting. She came in at the end to go over some of the more mundane aspects of the treatment. In the process, she stated that I would eventually lose all my hearing. Since I still have good hearing in the affected ear, this bothered me. However, the more I research, the percentages seem to back up what she said.

Maybe I'm just getting 'cold feet', but I'm not ready to give up my hearing without due diligence. In addition, my AN is ~5mm, so I feel that I've got time to wait and see.

[macintosh]

You might want to contact Drs. Mattox and Olson at Emory. I talked to the staff nurse there before I had treatment a month ago for a small (7mm) AN. Emory does both FSR and one shot, and she said that for an AN as small as mine, they would probably recommend one shot. I had mine done (one shot) at Shands (University of Florida) a month ago. Hearing is about the same as it was going in--less than normal, but usable.

Good luck,

Mac

[Dealy]

I guess this depends which type of FSR you are referring too. The type of FSR that uses the LINAC is at Johns Hopkins in Baltimore Maryland or FSR is used in Providence Rhode Island by a Dr. Noren. I used FSR in Baltimore. I read  material that GK is too much-one shot on the hearing nerve-this is why I opted for FSR. Cyberkinife seems to have also a good track record on hearing preservation. I am not sure-but sometimes I believe it is dependent on the protocol used by the particular institution. Check out their track record first before proceeding. I can bet that if others in the institution have lost hearing-so will you. Check out their protocol most of all. That is how many RADS are administered etc. Thanks-Ron

[Romans828]

Thanks for the input. I've canceled my GK treatment and am exploring Cyber Knife treatment at Wellstar Kennestone in Marietta and also with Dr. Swaid in Birmingham. The latter is still on the drawing board, but it has gotten state approval. I spoke with his office yesterday and they said that it is slated to open at the end of this year.

If anyone has experience with either, please comment.

[Mark]

Romans,

The data for FSR treatment is still short term ( studies range from 2-7 years from my research), but the preliminary results are that staging the treatments appears to be less toxic to the cranial nerves than one dose. GK, at one dose,  is generally in the 60-65% range of maintaining pre-treatment hearing whereas FSR (my research is with CK, not other machines) is around 75%. Basic theory is that treatment over three days allows the healthy DNA of the cranial nerves to recover while the abnormal DNA of the tumor is unable to. Of the FSR capable machines, only CK matches GK's accuracy. Other machines, particularly those that resort to very low doses over 20-30 days, have lesser accuracy and more radiation is delivered to surrounding tissue.

mark

[ppearl214]

Thanks for the input. I've canceled my GK treatment and am exploring Cyber Knife treatment at Wellstar Kennestone in Marietta and also with Dr. Swaid in Birmingham. The latter is still on the drawing board, but it has gotten state approval. I spoke with his office yesterday and they said that it is slated to open at the end of this year.

If anyone has experience with either, please comment.

Hi Romans,

My sister alerted me to CK at Kennestone Hospital and if you opt for treatment there, you are in great hands... also, Emory is a leader in AN treatments in the Atlanta area.  Either way, you can't go wrong.....

Phyl

[Romans828]

Do different institutions create their own dosages for a particular treatment option or is there a protocol that all institutions follow? I ask because the nurse at my consultation was very emphatic that I would lose all hearing in the affected ear with GK although I currently have good hearing. But from what I've read elsewhere, and Mark's reply supports this, is that GK maintains pre-treatment hearing in ~ 60% of cases.

I thought that the nurse was perhaps trying to be pessimistic or give me a worse case scenario, but when I questioned her, she stated that I indeed would lose all hearing. It would just be a matter of time. That leads me to believe that their dosage must be greater than is used elsewhere. Are there other factors, other than dosage, that could account for this?

Sorry to ramble. I'm still disappointed with my GK consultation at UAB. Not their fault, it's just that what they told me didn't mesh with my research and expectations.

[1wareagle]

Roman828

I too went to doctors at the UAB for my second opinion. My AN was 3.2cm and with all I had read it was too big for CK or Gamma. I waited 2 weeks for the doctors office to call me back after my visit and when I finally got a call back from his nurse he wanted to do a 5 step radiation treatment on me. That's when I got my 3rd opinion at LA and decided to go there. Dr. Brackmann, in LA,  told me right off the bat that my AN was too big for radiation and I needed to have the translab approach to remove this tumor. I felt that he knew more about it. He didn't have to take 2 weeks to figure it out. So I ended up in LA.

Good luck finding the right doctors!
Ellis

[ppearl214]

Hi Romans,

In follow up to your questions and Bruce's reply (hi Bruce!  ), I can tell you that I am now just over 10 mos post-Cyberknife and had my hearing test a few weeks ago. I am at 100% hearing retention for what my hearing was at the time of treatment.  So, I do fall into that high percentage of those that keep their hearing at the same level pre-treatment.

Different locations have different protocols for the amt of radiation that is used.  For me, I had a 5-dose treatment of CK, whereby, most I know that had CK had approx 3 days... yet, I have also heard of 1 day CK.  So, in meeting with any radio-surgery treatment team, please ask them about the amount of radiation used, how many doses (days) they choose and why do they recommend the protocol for use on you.  When I asked my team about it, esp. when I knew in advance that most CK treatments were at 3 days (18-21Gy), they advised me about preservation of the surrounding normal tissues and better hearing preservation.  I did challenge them on this but did opt for the 5 day (since I was not aware of anyone else that had it for 5 days), but now, in heinsight, I'm thrilled that I did the 5 day.  For me, to have hearing retention as I do... minimal side affects and life has certainly moved on... and, at 10 mos, we can see on my MRI's that the "booger" is definately dying.... I never question my decision... and neither should you.

Hope this helps.
Phyl

[ppearl214]

Phyl...

Thanks for the follow up. I knew some smart person would provide those radiation numbers. Your case is a great example of how hearing can be preserved via radiotheraphy. 

Bruce

I owe you some kind of drink on my next trip to Atlanta... and forthcoming soon!   Stay tuned!