Surgery v. Radiation

[Evan]

Folks:

I am new here (as I was just diagnosed last week with a 1.6cm x 1cm x .5 cm Right sided AN).  I have little or no hearing loss and no other real symptoms.  I met with my ENT today and now I have to start going to consults.  I just saw an abstract in the Journal Neurosurgery from July 06 which compared results for small tumors such as mine, for both Cyberknife and Microsurgery.  The conclusion in that limited study (with no long term follow up to date) was that for small tumors and with little symptoms, radation may present the best choice.  Obviously surgeons (I am in NY) are going to suggest surgery and the people out in Stanford are going to recommend radiiation.  I would like to know what anyone who had to consider these options did to make their final choice.

Thanks.  Evan

[IAHeel]

Evan,

My wife had translab at House. We looked very closely at both options and both are reasaonable, if you are in the best hands. Drs Friedman and Schwartz were very knowledgable about the resesarch and trade-offs with both options. As Schwartz noted, much of the decision boils down to what kind of person you are. If you have major reservations about the idea of having brain surgery, that might lead you to radiosurgery. If, on the other hand, if you want a sense of final resolution, and not having to deal with the follow up forever, that might lead you in another direction. Now, before all the advocates of either approach descend on me, this is a bit of an oversimplification, but it's not too far off.

Go to Medline and read the research, keeping in mind that microsurgery results vary a lot based on being in the best hands. Read House's site and their research. If you would like to speak with my wife, let me know.

Good luck,

Fred

[Obita]

Hi Evan and welcome:

My AN was borderline for radiation so I had surgery.  At the time I was almost happy that the decision was made for me.  Plus, the pressure in my head was overwhelming.  I just couldn't imagine any more pressure from the AN swelling after radiation.  But, I miss my hearing. 

Like Fred said, what it boils down to is, do you want it gone or still in there dying off.  Neither treatment is flawless.  There are two new people on here that found out they have re-growth many years after surgery.

Good luck to you, Kathy

[Evan]

Thanks for your responses so far.  Without knowing more to date, I think translab is out for me since I do not have any real hearing loss to date, and translab does result in total hearing loss from that ear.  I also think a potential problem is this:  House does surgery (and not radiation).  The New York docs, for the most part, also do surgery and not radiation.  If I send my films to Stanford, I would think they would lean towards Radiation.  I am essentially symptomless (no heardaches, no hearing loss, no dizziness) and so the thought of surgery is a bit scary.  Of course if the consensus with the doctors say that this is the way to go, then that is the way to go.  On the one hand?....on the other hand?.......ok...I will stop now.

Evan

[IAHeel]

Evan,

House does do radiosurgery. I know that Friedman, Brackmann and Schwartz are all trained on it. Middle Fossa is a more challenging surgery, but you do have a chance of hearing preservation with it. You are right in that each professional has their view and their interepration of the research. And, the research is sometimes hard to digest. We found Marc Schwartz at House was very evenhanded and extremely patient in discussing the research.

Fred

[nancyann]

Well Evan, you are indeed in a predicament...
                I went with surgery, having mucho tinnitus & decreased hearing... + a friend who is a neurologist recommending the surgery....
                I didn't have a computer at the time, didn't know about this forum....
                My personnal story is that I had a full 2 cm AN, went with the surgery...  Now have facial paralysis, etc., etc.....
                The doctors I chose were VERY experienced in AN surgery, post op I've met people who had it done with the same surgeons & NO complications...

                 What should you do?  Many people have the surgery, get the 'bugger' out, & no major problems.
                Unfortunately I have MAJOR PROBLEMS dealing with the facial paralysis & all that goes with it.
                 Would I have been 'fine' with radiation?  Who knows...
                 Each tumor is different, the placement,  the facial nerve's condition pre op.....
                 The surgeons really can't guarentee no complications; I was told a '5%' chance of facial paralysis,
                  so there you go.

                 Look closely at the different posts on this forum ....
                 Take your time (something I didn't do at all), then make your decision.
               
                 I wish you all the best....    Nancy

[Evan]

Bruce:

You mentioned fun, didn't you?  You know its funny.  If you asked me a month ago, what I would do if someone told me I had some type of brain tumor, I would probably tell you I would all apart.  When the doctor told me on Thursday, it was hard to digest and then I almost passed out.  Now that I am over it, and have done an extensive amount of research on line and off, I am looking at it, not as fun, but as a challenge and unfortunately, one more "small" hurdle in life.  It makes you realize how strong we as human beings are, and what we can endure.  I am reading the posts of many others with more complications, and I have seen very close friends suffer from horrible diseases.  I feel that I am fortunate, in life, in health, in sickness, and now here, having people like you and others take an interest in someone they do not know.  Conditions such as this do not have to be defeating to us.  They can be upsetting at times, troubling, disabling, but they can also become empowering, as long as we are proactive and take control of our lives.  Sorry for the soapbox.

Evan

[Evan]

Bruce:

I am curious.  You have a small to  moderate sized acoustic neuroma.  You are certainly not old.  Why did your doctor think that watching and waiting was the best course of treatment for you?

[Larry]

Evan,

There are 3 options avaliable for you.

1. surgery - and there are a few types around
2. radiation - gamma v's cyber
3. do nothing

I had middle fossa surgery 4 years ago and my an returned about 1.5 years ago. it is currently around 2cm.

My surgeon now will not go near middle fossa surgery due to the post op complications and the inability to get all the tumour out if it is in a tricky spot. He either does trans lab or watch and wait.

There is a school of thought now that says to not touch the an's unless they grow and / or are near the brain stem and / or causing issues.

I am in watch and wait and if I have to, with have radiation treatment on it. I will not go near the surgeons knife again if I can help it. My complications - headaches - have been chronic for 4 years now and they are purely a result of the surgery.

At the end of the day, it comes down to personal choice - a lot of posters just want the thing removed and thats fine too. If you are comfortable with it in your head (that is, not causing you any issues) then monitot it. Have regular MRI's. If things change, then look to do something.

cheers


Laz

[Evan]

Laz:

Thanks for your informative post.  Have you been reading about the new "school of thought" concerning no surgery?, and if so where?  As I stated in an earlier post, some recent studies have favored radiation vs. microsurgery.  Luckily I do not have to make my decision so quickly.  thanks again for your response.


Evan

[macintosh]

Just wanted to chime in that while Stanford has a superb track record in radiosurgery, so does Johns Hopkins, and it's a lot closer to New York. They do surgery and radiosurgery. And as Fred said, if you keep reading on medline or pubmed.gov, you will find a number of recent studies that say the same thing as the one you cited from the Journal of Neurosurgery. Full disclosure--I had radiosurgery six weeks ago, no side effects so far, back to work the next day.

Mac

[ppearl214]

Hi evan and welcome.

As I tried to become the best "educated" patient I could be, I checked into all radio-surgery options (with the guidance of my brain neurosurgeon at Brigham/Woman's, who actually told me she didn't want to "cut" and go have radio-surgery done based on the size of my AN) as the metro Boston/NE area offers all forms of radiation for AN's.

I checked into Proton but could not find enough data to support its efficacy. Cost was also extreme.

Novalis/FSR... they did option me for a 30-day dose and knocked it down to 5-day dose option for me.  In researching FSR/Novalis, Novalis publically notes their accuracy of 2mm.  My personal attitude was if they are going to zap my brain, I want the best accuracy I could have (I know many here that had FSR and are doing great, so don't let my personal comments affect that)

I checked into CK and GK as both are also offered locally. Both offer same accuracy of approx. .87mm-.89mm.  GK of one dose, or CK (usually 3-day but mine was 5-day dose).  Both were extremely viable choices for me.. and I chose CK based on more fractionated dose (vs. one dose) to help with surrounding normal brain structures and comfort of face mask.  Again, just my personal choice and it has worked for me.

I am now 11 mos post CK, I have 100% of my hearing for what it was at time of treatment and MRI's are showing the radiation is on track for tumor death (necrosis).

So, for me, I chose CK but I have faith in you to become the best, educated patient you can be. I have faith in you, to do as you are, in reasearching all options.  If radio-surgery is what you seek, I also recommend looking at the CK Patient support board (http://www.cyberknifesupport.org/forum/), but don't be fooled as the dr's there answer questions regarding all forms of radio-surgery, some practice GK and CK and volunteer their time to answer our questions.

Hang in there... and regardless of what you decide, I have the utmost faith in you to choose what is best for you.

Phyl

[okiesandy]

Evan,

Phy gave you the link to the best source of information you will find. The Cyberknfe Patient Support site.

My story is: First sign of my AN was loss of balance and three days (yes, I did say 3 days) later I lost total hearing. Two weeks later diagnosed with a 1.0 cm x .7 x.7.  I decided to take my time. Neurotologist was pushing for local surgery. I did not even consider radiation at that time because I contacted HEI and was impressed with the experience. They also told me radiation was a big no-no.

Six months later I had my 2nd MRI and they found a cyst in the middle of it. Also had grown to 1.2 cm and changed shape. I scheduled surgery for Nov 9th 2005 with Dr. Brackmann at HEI. Due to insurance dragging feet and us just saying to heck with it we will go with cash price and worry later, the surgery was postponed. Then someone on this site emailed me and said as long as I lived in OKC why did I not check with Dr. Clinton Medbery. I went to the Cyberknife site and ask a couple of questions then email him personally. He is a radiation oncologist, and medical oncologist and listed as one of the top 100 doctors in the US and has been for 7 years. I submitted my MRI to him and the were presented to a board of specialists. All said I was a candidate for radiation or surgery.

Next I went to a Neurosurgeon who does  Surgery, Gamma Knife and Cyberknife. She said any way was fine. When I ask her if it she had my exact AN what would she do. She said radiation in a heart beat. Facial paralysis is almost non exhistant. No dry eye and no lost work time. However, do what I was comfortable. Wow, big change from the two neurotologist and consult with HEI. I ask about malignant transformation that I was warned about. She said there are about 6 known cases of AN's turning to cancer and it is divided 50/50 among surgery and radiation. Then I ask about regrowth. She said there is a less than 1% difference in regrowth between surgery and radiation and the gap is closing fast. In her opinion surgery may soon be a thing of the past for smaller AN's.

I had CK Jan 2006. The AN had grown to 1.4 cm in 9 months. Treatment was great. Those who followed my story know I went to lunch and shopping after the first two treatments and to celebrate on the 3rd and finial day went to the casino.

My AN was very close to the facial nerve and I had numbness before treatment. Now a year later that is about 99% gone. Some small balance issues. I am back to riding my horses and just painted our library with 12 foot ceilings on a very tall ladder. As time goes by, symptoms grow less. At my one year MRI the tumor is 1.1 cm x .5 and has necrosis in the center. I did not have hearing before the treatment and don't now. I did choose fractionated over on dose CK. I was allowed to chose. I understand hearing preservation is truly great with this. I am in contact with three other people that had CK here and all have retained hearing if they had it before. One is the husband of a co-worker He changed his mind about radiation after an appointment with my neurosurgeon. He went on a cruise two weeks after treatment and did very well. He worked half days while undergoing treatment.

You will find both doctors who post on the Ck site will not try to make you one of their patients. If you email Dr. Medbery personally he will answer. He was in France when I kept emailing him with pre-treatment questions.

Good luck with what ever treatment you chose. I can only speak from my experience. I was scared to death of the surgery and am now very glad I was. Love that insurance company. Thank God they messed up.

Sandy

[Evan]

I just want to thank all of you for all of your kind words, advice, personal experiences etc.  Today, I contacted via email, Dr. Adler at Stanford, Dr. Sisti at Columbia (he does both Radiosurgery and microsurgery) and the team at John's Hopkins.  These doctors are amazing.  Dr. Adler called me back personally on my cell phone and we had a wonderful 10 minute conversation.  I understand that he has a vested interest in using his Cyberknife, but he is a doctor, and I have to believe he does care about the outcomes.  Dr. Sisti wrote me back personally discussing both microsurgery and radiation since he does both and tomorrow I am going to make an appointment with him.  Johns Hopkins also emailed me back immediately. 

For all of you who have considered both, from the research I have done, it does not look like there are significant differences in outcomes between radiation and microsurgery.  Of course a lot depends on the size of the tumor, symptoms, and location, but whatever studies are out there are pretty even between the two.  I know we would all love for doctors to tell us that radiation is the best, but that may not always be the case.  I do think however, that with any relatively new procedure (radiation vs. surgery), the people who have been doing resections will lean towards that.  But it is tough to dispute whatever studies are out there at this time.

The only question that remains is what happens in 20, 30 or 40 years.  Since I am 53, I will take my shot at 40 years right now.  Anyway, I thought I would share this information with you, especially with regard to the manner in which these doctors have responded.  I am truly astounded.

Evan

[jimmy r]

 Here are the results of my research. I had my first tumor removed 20 years ago by Dr House. I thought it was all removed but apparently a small cell remained. A very rare occurence. The only complication from the surgery was loss of hearing which I knew about going in. I was back to work in a month.  The first few days of recovery from surgery were miserable but i felt fortunate to have had such good care and a quick recovery. The loss of hearing has been a nuicance but not a huge deal.

 I discovered in december that my current tumor is 2.8 cm. It was 3 cm 20 years ago when i had it removed.  I consulted with a local surgeon and he found i have no neurological symptons at this time. he discussed in detail both radiation and surgery options. He is considered the best neurosurgeon in my town. he said that he would not do the surgery and wanted me to see someone who has more experince, expecially experience with a reoccurence. My tumor is at the high end of acceptable size for radiation so he reommended against it. he said if it was smaller,  radiation should seriously be considered. He recomended i talk with a Dr Sisti in New York, at columbia I think. He went into detail about both radation and surgery options. He saif if it were smaller, he would strongly recomend radation. But not with my size.

I then talked with Dr Shwartz at House. He is the radiation specialiist at HEI. He too went into details about he pros and cons of radiatioin. In conclusion he too recomended surgery. Finally,i talked to Dr Brackmann who also reommended surgery.

So i am scheduled for sugery in April with Brackmann, Shwartz and Stefan. As far as radiation is concerned, I think that at 2.8 there is a greater risk of complications.and the risk of cancer. my research shows if it grows back, surgery will be more difficult. Yes I am dreading surgey. To preserve my facial nerves, they may leave part of the tumor so i will still not be done. The plan is to watch it and then consider radiation down the road.