Apt Monday, advice please.

[Alison]

Hi,
I've got my first apt with the surgeon/radiologist on Monday. I think I know what to ask about the surgery options but am confused about radiotherapy and radiosurgery treatments. Obviously won't know till I meet with the docs what they'll recommend as appropriate for my tumour position.( MRI 14mm x 10mm x 8mm IAC and into CPA).

I've read conflicting articles about why single dose/multiple dose ie GK CK FSR are better/ worse. I wonder why multiple dose can be up to 30 sessions ( FSR) when treartment can be done in one GK. Is FSR "safer" with less possible swelling etc? I would have to travel on a bus 90 mins each way to the centre for six weeks 5 days a week if I went for FSR and wonder if that would be difficult with side effects of treatment. I think my local centre prefers FSR for their radio treatment (I'm in the Uk).

Also as my major symptom is balance issues (feel like I'm drunk and bounce when walking, like I may fall over) and tinnitus, would radio treatments only help with that if the tumour shrank?

Many thanks for any opinions.

Alison

[MDemisay]

Alison,

Thank you for asking for help. That is the first step in your recovery process....The second step is setting up at least 3 interviews (more if you feel uncomfortable) as someone who has interviewed way too much I can certainly tell you that 14 is too much! Once you are comfortable with the # of your interviews, list the options you will receive on a sepate sheet of paper. Best advice go with your gut!

You can receive free opinions if you send your reports and scans to House Ear Instute in LA ( Dr. Freidman) and to UPMC (Dr. Kondzuilka) they both consulted with me for free and would consult with you as well. In 2004, I was deciding whether to have surgery or not (obviously, I was scared to have surgery again as I had a protracted first surgery in 1974). unfortunately, I wasn't as lucky as you are now, I didn't have the support of the ANA forum to advise me, hence the protracted search on my own in 2004.

I came back to the forum in 2012, with a regrowth of my AN, and I must say that they saved me from a maddening experience. The second time around, I got 3 opinions on the Gamma Knife procedure and I even visited Dr. Kondzuilka personally this time before settling and going with my gut with Dr. Michael Sisti. Still, I owe a lot to my friends here on the forum who supported me throughout!


I encourage you to come back and explore the other areas of the the forum like the Physicians section where you can ask specific questions about the Docs that you may be familiar with.

Once again there are many caring people that you have found here on the forum, welcome to "our family" here you will receive tremendous support.

Ask questions, I assure you that while we are not doctors, we can point you in the right direction!

Mike
An additional way you can receive support is by joining an ANA support group meeting sponsored locally.

[Jim Scott]

Hi,
I've got my first apt with the surgeon/radiologist on Monday. I think I know what to ask about the surgery options but am confused about radiotherapy and radiosurgery treatments. Obviously won't know till I meet with the docs what they'll recommend as appropriate for my tumour position.( MRI 14mm x 10mm x 8mm IAC and into CPA).

I've read conflicting articles about why single dose/multiple dose ie GK CK FSR are better/ worse. I wonder why multiple dose can be up to 30 sessions ( FSR) when treartment can be done in one GK. Is FSR "safer" with less possible swelling etc? I would have to travel on a bus 90 mins each way to the centre for six weeks 5 days a week if I went for FSR and wonder if that would be difficult with side effects of treatment. I think my local centre prefers FSR for their radio treatment (I'm in the Uk).

Also as my major symptom is balance issues (feel like I'm drunk and bounce when walking, like I may fall over) and tinnitus, would radio treatments only help with that if the tumour shrank?

Many thanks for any opinions.

Alison ~

As an AN patient that underwent FSR following surgical debulking of a 4.5 cm tumor, I can tell you that the fractionated approach is intended to minimize damage to surrounding brain tissue and give the brain time to 'recuperate' after each session.  I received a total of 27 Gy over 26 separate 'sessions' and had absolutely no issues.  I drove to and from each FSR appointment - a total of 62 miles each day (weekends off).  Subsequent MRI scans indicated tumor necrosis (cell death) and the beginnings of shrinkage.  That was in 2006.  I'm doing great today and my next MRI isn't scheduled for another year. 

Radiation - no matter what type - may affect your sense of balance for awhile but that should resolve itself in time.  A few months following the radiation, the tumor usually swells a bit and that can give you some problems.  However, a short regimen of doctor-prescribed steroids should alleviate most of the issues associated with tumor swelling. 

I trust that other members who have undergone other forms of radiation treatment for their AN will respond to your questions with more information.

Jim

[Alison]

Thanks Mike but I'm in the UK and cannot get to the US for treatment. We can't access info about docs like you can in the US, unfortunately.

Thanks to Jim also. You are an inspiration.

I have read that if you have balance issues before treatment, they won't be resolved by radiotherapy, so you're stuck with them. Is that incorrect? (I know surgery doesn't necessarily resolve them either). Also has anyone had nausea/sickness after fractional treatment that has made their journey home difficult, I'd be travelling by public transport if FSR is an option?

thanks,

Alison

[PaulW]

I had single session Cyberknife and had mild balance problems before treatment, as well as moderate hearing loss and mild tinnitus
I am happy to say my balance, tinnitus and hearing have all improved and are back to normal levels.

So things can get better, that has been my experience anyway.

[Alison]

Hi Paul,

thanks so much for your reply. It is encouraging to know your balance problems improved. I'm currently reading through your previous posts and am learning so much! You are an amazing font of information. Thanks for sharing it all on this site. I'm amazed you had to travel from Oz to Germany to find a CK machine though. I live in the UK and I'm not sure what machine my local centre in Bristol has. I hope I may be a candidate for Radio now. I hope to find out on Monday.

Best wishes,
Alison