Shaped Beam Surgery--Jefferson Hospital, Philly

[keepingthefaith]

Hi all,

I haven't logged on in awhile as I have been literally watching and waiting.  My hearing has deteriorated a little more--I went to Mayo Clinic in Jacksonvill, FL--and the AN Dr. there said Yes, it is a big decision of "what to do, what to do."

Because my symptoms have gotten a small bit worse, I am seriously considering having radiation.  I have a tentative appointment later this month in Philly with Dr. Andrews to discuss the Novalis Shaped Beam surgery option.  Just wondering whether anyone has had this.  If so, did you have at Jefferson?  If not,where did you have and how did it go?

I just attended my local AN support group in Ft. Lauderdale--a wonderful group of caring fellow ANers.  Unfortunately there seems to be more with problems after radiation/surgery than before treatment. This may be the case perhaps because when it is a success story one may tend to go on with their life, grateful that their treatment worked for them.  That said, I am leaning towards having radiation and just wondering if anyone had positive results from the shaped beam or similiar fractionated radiation.

[leapyrtwins]

Keeping -

I didn't have radiation, so I can't give you my experience with it, but I did want to address your thoughts on "more problems" after radiation/surgery than before treatment.

I definitely agree with your point that a lot of AN patients who have "success" stories never return to the Forum on a long-term basis after treatment to update those of us who continue to participate.  However, there are still a lot of us oldies around who have had "success" stories. 

Prior to my surgery (retrosigmoid) my only symptom was diminished hearing and a feeling of fullness in my left (AN) ear and a balance issue that I didn't even notice; it came to light when my neurotologist tested me.  Post op I had my "issues" but the only permanent one is SSD - which while definitely different from the diminished hearing I used to have - has been resolved to my satisfaction with a BAHA implant.

Others on the Forum may not seem as "lucky" as I am, but trust me - even those with lasting problems, are leading full lives.  So IMO, "success" is a fairly subjective word.  While some have had bigger "issues" than others, I don't think anyone here could be truly called a "non-success" story.  And truth be told, I consider those who have been through much, much more than I have and come out with a positive attitude to be a bigger "success" than I'll ever be. 

I'm confident that with the exception of those watching and waiting who never experience enough growth to cause big problems/symptoms, if we all chose to do nothing about our ANs it wouldn't be a good situation.  The "success" stories would be fairly non-existent.

Regardless of whether you choose radiation or surgery, it's a wise decision to go from watching and waiting to taking action when you start to experience an increase in symptoms - like your deteriorating hearing.  Making your treatment decision is sometimes the hardest part of your AN journey, but I am confident you will made the choice that is best for you.  Trust me, you'll get through this 

Best,

Jan

[sgerrard]

Does CK count? I would say my experience with CK has overall been a good one. There are several others who have had good outcomes with the various kinds of radiation treatment. Tumbleweed is another CK one; Nancy Drew with GK; and it seems like there is someone who did Novalis, maybe even at Jefferson. You could try a search for some of those posts.

Steve

[ppearl214]

CK counts, Steve!

Hi Keeping,

Ok, Novalis is typically used in "fractionated" rounds, to help protect the surrounding structures from being "hit" with a larger amt of radiation (unlike GK, which is typically done in one dose/day with a larger "hit" of radiation at one time).  Now, the thing about Novalis is this... it's "total accuracy".  Novalis publically touts that its "total accuracy" is approx 2mm.  Now, in researching GK and CK, the "total accuracy" is between 0.85mm-0.89mm (for both CK and GK), so you need to keep that in mind. CK and GK have a better "total accuracy" and IMO, if you are going to do radiation, you want to make sure that the "total accuracy" is there.

Just my 2 cents... take it with a grain o' salt.

Hang in there.... please continue to ask questions... you are doing great!
Phyl

[jwick]

Hello,

I have decided to go with the Novalis FSR treatments.  28 treatments overall.  I hope I have made the right decision.  Preservation of hearing, as I have not lost any so far is my goal.  I am worried about the long term effects as I am only 33 yrs old, but the long odds of saving hearing with surgery are pretty ominous as well.  I am having my treatment at UNMC/Clarkson in Omaha, NE.  I am going to attend the first Support Group meeting in Lincoln, NE on July 25.  My main concern is my balance.  I am just having episodic moments where I feel really weird and then it is goes away.  I am hoping radiation stops the AN from growing and the problems will just stay minor or go away.   

Good luck to you and I will keep you posted on my progress through my treatments,
 
                                                                                                        Jeff

[jerseyboy]

Dr. Andrews is very highly regarded.  I may be selecting him also.
Jeff