Did balance get better w/radiation? Boston or Providence?

[staceycc]

Hi!

Just wondering if anyone can give me info on balance after radiation.  My father has a 2.2cm AN, just found out a few months ago.  However, his face has been paralyzed for 20 years.  Doctors thought he had Bell's Palsy...turns out it was this tumor all along 
He has gotten his hearing back after taking the steroids, however, his balance is pretty bad.  We are trying to choose between radiation and surgery.  If anyone had a similar situation can you give me any info on whether or not your balance improved after radiation?  Thank you for all of the helpful info on this site!!!! 
Also, if you checked out both boston and providence doctors.  We've seen McKenna and have an appt with Barker.

[krbonner]

There's actually several of us on here from the Boston area, some who've had surgery and some who've had radiation.  I'm personally pre-op with very few balance problems so I can't comment on your dad's specific condition. 

I am scheduled for surgery next week with McKenna/Barker.  From a pre-op perspective, I'm really happy with both of them.  They have years and years of experience with hundreds and hundreds of AN patients.  I knew I'd probably choose surgery pretty early in my diagnosis, so I don't have a lot of info about the radiation options in NE.  But I know many others here do.

Your father may be a good candidate for radiation.  Personally, I'd go ahead with a consult with Barker to get his take on it but don't feel like that locks you into surgery.  You can also talk with Dr. Jay Loeffler at MGH about radiation for ANs.  I did meet with him and found it helpful.

Good luck to you and your father.

Katie

[ppearl214]

Hi Stacy and welcome.

Katie is right as there are many of us here from the metro-Boston area (please take a peek at the "General Discussion" forum here, you will see posts from me re: upcoming local AN brunch in Worcester, as well as a free seminar at MGH/MEEI this weekend and would love to have you and your dad come along to either! )

I know of a few here that were treated by the MGH surgical team as Katie notes (including CrazyKat/Paul... he had a massive AN and had it surgically removed last year. Katie and I can tell you that by looking at him now, you'd have no clue he just had a massive AN!). The team at MGH is outstanding!

I had Cyberknife at Beth Israel. Great technology (use of Robotics/image guidance) in this new form of radio-surgery. Please keep in mind that radio-"surgery" is not the same as "radio-therapy", which is what many cancer patients endure.  3 great websites for this technology are:

www. accuray.com
http://bidmc.harvard.edu/display.asp?leaf_id=13361
http://www.cyberknifesupport.org/forum/

I know ellenvig (on this site) is going to Providence in 2 weeks for Gammaknife with Dr. Noren, one of the tops in his field in GK treatment of AN's.  Tuft's University also offers GK.

Proton is offered at MGH as well.

Novalis FSR (Fractionated stereotactic radiation) is offered at Brigham Womans (my neurosurgeon, Peter Black, is based there, so I check out their FSR)

All in all, it's all personal preference, so maybe some questions your dad should ask are these:

1.  Does he want to try non-invasive vs. invasive? (personal question... does he want the "booger" out of his head or can he handle the thought of the tumor dying in his head?)
2.  What are all potential side affects of each treatment option?
3.  Qualifications of treatment specialist?
4.  Recovery times involved?
5. Potential outcomes of each treatment?

As to your question about balance post radio-surgery, I can help with an answer.  Granted, I also have a Chiari I Malformation (a defect in the brainstem in which the cerebellum is slipping in a gap, which causes extremity weakness, such as weak legs), I can tell you that I am now 5 mos post treatment (OMG, this week! Where has time flown?) and my balance is a bit off, but getting better.  Typically, either Antivert (for vertigo) or low dose valium (2mg -- 2-3 times/day) will help the vestibular (hearing) nerve calm down, helping balance issues to relax.  Further info can be found on the link above for the Cyberknife patient support board (http://www.cyberknifesupport.org/forum/, then look in the "Brain" section/forum) as the dr's that volunteer there have answered this question to me, as well as others, inquiring about balance.  FYI, I use a cane permanently due to the Chiari I (I'm only 45 but tell everyone it's a fashion statement) and when I do walk without my cane, my balance since I started the low dose valium does seem better.

here's wishing you and your dad well.. he's lucky to have a daughter like you... and we are here to help if we can.

Be well and hang in there!
Phyllis

[john twoffer]

My right AN caused my leg to be off and it was hard to walk and I tended to fall, especially when entering a dark room. After fractionated stereotactic radiosurgery in 2000, all the balance problems went away over 6 months. They have never returned. But the tumor is getting larger and will probably need to be retreated. I wish I would have went with Gamma Knife the first time. I think CK is too new and not enough long term studies. John

[ppearl214]

My right AN caused my leg to be off and it was hard to walk and I tended to fall, especially when entering a dark room. After fractionated stereotactic radiosurgery in 2000, all the balance problems went away over 6 months. They have never returned. But the tumor is getting larger and will probably need to be retreated. I wish I would have went with Gamma Knife the first time. I think CK is too new and not enough long term studies. John

John, with respect..... CK has been around for over 10 years and yes, maybe not around as long as GK, prelim data does show that CK is just as viable as GK in many aspects, especially in regards to accuracy.  Both are extremely viable options and please note that CK was developed based on the same science/technology as GK but fractionated instead of a "one shot" deal. 

Thanks.
Phyl