Author Topic: Radiation Vs Surgery  (Read 2265 times)

Mary

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Radiation Vs Surgery
« on: November 26, 2005, 08:28:58 am »
This is one major topic that people have great opinions on.   I want to explain why I chose surgery over radiation for my mother.

When we found out my mother had the tumor she was 80 years old.  It was 3.5 cm then.    We saw a neurosurgen first.   He was one of the best so everyone told us.   He suggested surgery to be the best option.   We discussed gamma knife too.   He told us the surgery would take 8 to 10 hours.   My fear was mom having a stroke and becoming a vegtable in a nursing home because of her age.   Mom was totally affraid of surgery even though she has been thru 4 in her life time already.   So our option was to wait.   At an estimated growth of 1 to 2 mm a year we figured that she had another 5 to 10 years of life.   This all happened in January of 05.

Over the summer, mom was showing signs that things were getting worse.   Her short term memory was getting shorter and her balance was getting worse.   I asked her doctor to get another MRI just to see what was going on with the tumor.   In 9 months (this was in September 0f 05) the tumor grew 7 mm.   Something needed to be done because I knew the next thing that the tumor was going to affect was her ability to swallow.   Which it had already affected some.

I started to investigate Cyber Knife only because mom was so affraid of surgery.   I went to Kansas City and met with Dr. Rosenberg( the neurosurgen ) and Dr. Shaefer (who was the radiologits).   Dr. Rosenberg was very nice and wanted to do CK.   Dr. Shaefer wanted to do FSR.   That didn't set well with me because they had different opinions.   I contacted Dr. Medberry in OKC and mom and I went to see him.   He felt he could help with CK so we scheduled the appointment with him the following Thursday to have the tumor radiated.   My friends on the ANAWAY site were very concerned about radiating mom's tumor.   They kept telling me to contact the House for there opinion.   Monday I did.   

Dr. Friedmen was very upset that they wanted to radiate a very large AN which he said he wasn't sure if it was an AN or not because my description of mom's symptons.   I had 6 MRI pictures of mom's tumor which I emailed to him.   He called me back and said it was an AN tumor and she had crystallized cysts with in the tumor.   He also said if we had radiated the tumor the cysts would have swelled and we could have killed her.

He told me that Dr. Hitselberger would be calling me.   When he did he told me he has done over 6000 AN removels and the surgery would take about 4.5 to 5 hours.   He said they would take very good care of my mother.   So I cancelled our appointment with OKC and scheduled an appiontment with the House.   We had 3 weeks to get ready.   I took mom twice a week to PT, to build her strength.   When we were on the plane, mom thought we were only going to LA to talk to the doctors.   She had no intentions of having the surgery.

Now here's my opinion.....The House Ear Institute cares about the patient.   There are 4 main doctors that remove the tumors.   They work in pairs mostly.   Dr. Freidman made the opening for Dr. Hitselberger.   Dr. Hitselberger removed all of the tumor.   Dr Hitselberger did 2 AN removels that day and mom's was second.   With the team style they are not standing on ther feet for hours.   When Dr.Hitselberger was done with the removal, Dr.Friedman came back in to re-attach the facial nerve and close up.   Originally they were going in to debulk the tumor.   Dr. hitselberger was a 75 year old man with very steady hands.   I checked!!!!!   He has removed over 6000 AN tumors and he and Dr. House developed the translad procedure along with some of the instruments they use.   Before the translab approach they went thru the skull and the mortality rate was 40%.   Now it's less than 1%.

While I was there I met approx. 10 people from the US and 1 from Chilli.   They all have different size tumors from 8mm to mom's size of 4.5 cm.  Two had small problems which were corrected.   Everyone went home fine and very happy.   Three were in there for the second or third time and they had originally had the first surgery somewhere else.

If I ever developed an acoustic neuroma I would go straight to the House.   It would not matter to me what size it was.   I am not affraid of surgery and I would trust the House with my life (not to mention my QUALITY of life).   I never felt like mom was a statistic to them.


Are they perfect?   Of course not.   They're human and we make mistakes.   But I figured by having done that many AN removels, they have seen all and they know how the take care of any problems the may arrise.   They have seem the scar tissue that radiation causes which makes there removal job harder.   Are they opposed to radiation?   NO!!!!   They are opposed to radiation on large AN tumors.

Both doctors have called me since mom and I have been home.   They both gave me their emails and I promised to let them know of mom's progress.   That's just one way of many they have showed me they really care about their patients.   I also saw many other ways not just with us but with the other AN patients in the hospital.   

Everyone have a wonderful Holiday Season.

Mark

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Re: Radiation Vs Surgery
« Reply #1 on: November 27, 2005, 08:20:11 pm »
Mary,

Thanks for sharing your story on how you made a decision for surgery for your mom's AN. I can only imagine how difficult it was to consider that option given her age and prior surgical history. I'm glad to hear she came through the operation OK and you're satisfied with the outcome. Her initial size of 3.5 cm certainly put her on the extreme  edge of what radiosurgery has treated to begin with and the sudden increase to almost 4.5 would have made surgery a necessary choice from my standpoint. I know Dr. Rosenberg has been using CK's improved targeting and accuracy capabilities to expand what has been considered the traditional limit in size for other machines. He has claimed some very good initial results, but there is not a lot of data at this point. While AN's do not grow in a linear fashion , they do average about 2mm per year as you noted. 7mm is the equivalent of a 3 year spurt which is dramatic and would certainly be a concern. Did the Doctors at HEI do a biopsy, just in case?

I did have a couple of other questions from your post.

Who is this ANAWAY group? You certainly seemed to put a lot of trust in their opinions and I would be curious to see what is said there. It appears to be a yahoo group but when I clicked on it it came back as nonexistent. If you have a link could you send to me, I would appreciate it.

In reading your comments about the visit to Dr Rosenberg / Shaefer it seems to me that terminology confusion came into play . CK is a machine, like GK is a machine. FSR is a protocol which means the dose is delivered in fractions as opposed to a single treatment. CK is a machine that can perform either single dose or Fractionated (FSR) treatment plans. I'm pretty sure they had the same opinion but were focused on different aspects. It's unfortunate that you  left the visit feeling otherwise.

I think virtually all neurosurgeons who also use radiosurgery don't utilize it very much above on AN's above 3 cm . That is not an opinion unique to HEI. As some of the machine technology such as CK evolves  that limit may change but at this point I think the 3 cm size is pretty standard. I was intriqued by your comment that HEI is not against radiosurgery. I am curious as to what leads you to feel that way. They do not practice it so it would involve sending business away. Their web site clearly dismisses it with very poor documentation. Every interview or panel discussion I have read from any of their doctors provides misinformation or what I would term a back handed acknowledgement of it. I've never heard of any patient going there for a consult being pushed to do radiosurgery. If something has changed in their view of radiosurgery I would value your feedback as to why and change my opinion. I certainly acknowledge and recognize their world class experience and expertise in surgical removal, but, to this point, not as source of unbiased or even accurate information on both options. I think HEI is a great place to contact after you've decided to have surgery or want to understand that option better.

Again, thanks for your excellent post on your experience and best wishes for your mom's continued recovery

Mark







CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Mary

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Re: Radiation Vs Surgery
« Reply #2 on: November 29, 2005, 02:53:21 pm »
Mark,
I sorry I was wrong.   This terminology get confusing at times.   Dr. Shaffer did not want to do FSR.   He suggested IMRT.

Mary

russ

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Re: Radiation Vs Surgery
« Reply #3 on: November 29, 2005, 07:01:33 pm »
 Hi Mary!
   We are pleased you made it to ANAWAY! Thanks for sharing your Mom's story. Thanks to your proper Tx choice given all the technical information, common sense has ruled the day!
   Russ