why did you choose surgery over gamma knife treatment?

[bern]

I was wondering why many of  you did surgery and not gamma knife radiation?  I did gamma knife and now I am not sure it was the right option.

[Tamara]

If you've already done gamma knife, don't beat yourself up over your decision.  How long ago was your treatment?  What is the state of your AN? 

I personally chose surgery because I wanted to know it was gone, and would be unlikely to recur.  I believe that this is the reason that most people choose surgery.

I went to a surgeon and to a cyberknife specialist who both said that either surgery or cyberknife were good options but that they felt that surgery would be slightly better for me.  I was expecting the surgeon to say that but not the cyberknife doctor.  But it made my decision easy.

I'm sure your decision was just as good!

Best wishes,
Tammy

[leapyrtwins]

Bern -

like Tammy said, don't second-guess yourself.  What is done, is done and GK is a good treatment choice.

I personally chose surgery because I wanted the tumor removed from my head and I didn't want to have radiation and have to monitor the "situation" to see if and when the tumor died.  I also wanted to know my side-effects and what I was going to have to deal with upfront - not wait to see what the radiation would "bring".  Basically radiation just wasn't something I knew I'd be comfortable with; so surgery was the right choice for me.

However, like radiation, surgery isn't for everyone.  Lots of patients choose radiation and are very happy with their choice.

Bottomline, treatment choice - if you're lucky enough to have a choice - is a highly personal decision and everyone has their reasons for making their particular choice.

Jan

[mk]

Bern,

from your previous posts it is pretty obvious that you've had a very rough time after your treatment. Some people browse through surgery or radiation with minimal side effects, and some have to deal with many serious issues. There is no way to predict this beforehand, as every individual responds and recovers differently.

There are various reasons why people may chose surgery, or radiation and it is a very personal choice. What I have learned from this forum is that usually people follow their "gut" feeling, and they have no regrets afterwards.

By the way, are you feeling any better now?

Marianna

[Charlotte Lady]

I chose the surgery because the surgeon AND neurosurgeon both had special interests in ANs.  They always work together as a team for AN surgery.   Maybe if I had been going to an "general" EENT and neurosurgeon, my choice might have been different.   

Donna from Charlotte

[kenneth_k]

Hi Bern.

I have chosen surgery, because I really need this thing to go away, eventhough it involves some risk. My surgery is in a week. I will tell You afterwards, if it was the right decision
If it was very important to me to preserve hearing, I probably would have chosen radiation.

Best regards, Kenneth

[bern]

I wanted the surgery but the doctors at Penn State in Hershey pushed the gamma knife treatment because they did not want to touch my face nerve.  When they told me the face could droop with surgery, I freaked out and did the gamma knife.

I am no better today. My hearing loss is worse, ringing enough for me to beg god for help, fullness in the face, vomiting, and now a chronic earache.

My doctors only focus on the brain tumor. The rest of my symptoms must be dealt with by other doctors in the hospital. I hate that. I want one doctor for all my needs. Esp. my anxiety disorder which has never been so bad as it is now.

Should I find another hospital. 

[mk]

Sorry that your problems are continuing.

All the symptoms you describe point to substantial swelling post-treatment. Have you had a follow up MRI to monitor the size of the AN? Have your doctors prescribed any steroids?
You really need to be proactive and demand answers from your doctors. If they are not willing to help you it may be time to switch doctors (easier said than done though, because you would need a specialized radiation oncologist who can help you out with this).

Marianna

 

[Syl]

Bern,

Like others have said, don't dwell on the what ifs. No one knows how our bodies will react post-treatment. We can never tell if the other options would've resulted any worse or any better. Unfortunately many AN drs don't know how to treat the side effects of treatment. We are left to search for answers elsewhere.

I had retrosig surgery in June 08. I have headaches, additional hearing loss, and am still dealing with the dizziness and balance issues. I choose to see the glass as half full and focus on dealing with these issues. They may get better or they may not.

You mention fullness in the face, but do you have facial weakness? Maybe steroids would help, like Marianna suggested. For the hearing loss, there are hearing aids. I know this doesn't resolve everything, but it's a start.

Please focus on your anxiety. That alone could affect how well your body heals.

Syl

[calimama]

Hi Bern,

This is probably the most commonly asked question on this forum. And i think it is safe to say that in the end the decision is different for everyone and as you are the one who deals with the treatment and outcome, you ultimately you need find comfort in what is right for you. I feel for you... this is not an easy task ...and for me, this was the hardest part of the entire experience.

When i first found out about my AN, the doctor who told me recommended surgery (he said something like "pay now or pay later"). I did a a lot of research following that and decided there was NO NO NO way i was having surgery (after the stories i read). I did not want to risk my face (or worse), or lose my hearing, or get my head cut open (the idea made me ill). However after meeting with a number or rad docs and two surgeons (including the one i ultimately with), i decided to have surgery. Much to my own surprise. Not because i "had to have it out", but...

- my tumor was med-large and pressing on my brainstem (a lot). i feared rads around so much brain/stem. And mine was on the border of what GK is recommended for. I was actually considering radiotherapy over 5 weeks (to save hearing).
- i wanted to have another baby and was told i should give it 6-12 months post rads to start trying (i am not getting any younger and didn't want to wait... the whole AN thing already through off my plans by months). I was also afraid that if i had rads and say 7 mo later got pregs and had bad swelling (of any already big tumor),  i would be in trouble. This was a big factor in my decision.
- i thought that it would be better to try surgery first and then radiate any that might be left (to save face) later, than try rads, have it not work and then have to have surgery after (i thought an even greater to risk to my face of that scenario, although i know from this site that is not necessarily the case).
- i was afraid that i might spend the rest of my life wondering when if the rads might catch up to me (i am 39). The surgeon i went with did emphasize this (cancer) risk and said he lost 2 patients to brain cancer following radiotherapy (which is a little different to GK). i thought that maybe it's better to know what you have when you wake up from surgery (however bad) than waiting and wondering what might happen. I am a bit of worrier already.
- i had a job that would allow me to take several months off work (partial salary) and a supportive family and hubbie. My parents,  hubbie, family doc. were all in favour of surgery. My mom is a retired nurse so i knew she would be there for me in the hospital and beyond.
- i found a surgeon i trusted and hoped that he would not be so aggressive so as to damage my face (permanently).

Anyway, this is my story. It was tough decision and the surgery and time since has been challenging at times, but i am doing great despite some issues and am happy with my decision. You cant know how will turn out til it happens. It is like russian roulette. But you gotta something, so try to find peace with your decision and be positive.

Good luck

Trish

[msmaggie]

Hi Bern,

This is such a hard decision to make for all of us.  I have gone completely to one and then the other.  I definitely did not want to have any kind of facial paralysis, but I also did not want side effects showing up after I had gone back to work.  Most of the drs. I saw recommended surgery, and eventually that is what I chose. My surgery is in 10 days.  I don't know how I will do, but I know I did my homework first and am going into this with a positive attitude.  I talked to my neurosurgeon and asked him if I was correct in thinking that with surgery you get most of the effects up front and with radiosurgery they come on down the line.  He agreed, but everyone reacts differently.  We have people who have such a wide range of stories.

It does sound like you need to find a dr. who will talk to you and work with you.  Our good wishes are with you as you try to make that happen!

Priscilla

[Dog Lover]

Hi Bern,

Like Trish, after doing a lot of research after finding out about my AN, I was positive that I was going to go to Mayo Clinic to have GK. On their website they make it sound so easy and symptom free. But, I did to go a surgeon here at the University of IA as my first appointment. I had a close friend of mine come with me who would take notes and not be afraid to ask any questions (her husband has 3 forms of cancer which they have been dealing with for the last several years and she is not afraid to ask any questions, which I needed).

When I told her that I fully intended to go have GK at Mayo she had reservations and asked me to think about it and get more information. I found out that the surgeon was very experienced in ANs and also that this Otolarangology Dept was rated 2nd in the nation, which gave me more confidence in what they had to say. He was very against GK or CK, and told me that if I had that I would have to have an MRI every year for the rest of my life to see if it was growing, and also because of the size and location of my AN, saving the hearing was a good possibility and that with GK a lot of the time the hearing deminishes after 5 yrs. He said I was young and they thought that it was best for me to have it gone. The one thing that got to me the most, I think, was that he said if it was someone in his family, he would choose to do nothing before choosing GK.

I went home, thought about it more and then scheduled the surgery. My friend and my family were all supportive and thought that I had made the right decision.

I hesitated putting all this in, because I don't want to offend anyone who chose any other treatment option. This is just MY experience and why I chose surgery over another option. Mainly, I felt I had an excellent, experienced dr. and valued his opinion. Don't get me wrong, his fellow told me that to keep in mind they are surgeons, and if I talked to a radiologist (or whatever you call the dr that does the GK) they might have a very different opinion. I just felt comfortable with them and with the decision I made.

That's the key, I think. You have to be comfortable with the decision that YOU make and what is right for YOU. We're all different. Yes, I still have some balance issues, not bad, I still get fatigued easily which frustrates the hell out of me because when I get so tired, then the balance issues rear their ugly head and the wonky headedness tends to come back. Temporarily, but it does.

And yes, I sometimes (briefly) wonder if I made the right decision...would GK have been easier and less to deal with? I don't know and I don't dwell on it. I made my decision and now will deal with any outcomes of my decision.

I do think that if you can find someone to talk to, to help you deal with the anxiety it may help you with everything else. Your state of mind can affect so much.....

Good luck and be at peace with the thought that you made your decision based on what you thought was best for you. There is just a stumbling block in the way right now. A bump in the road (we've all had them). Baby steps. Deal with that first and you may find that the other issues fall into place much easier.

Cathy

[leapyrtwins]

Bern -

I'm so sorry to hear about the problems you are having. 

You mention finding another doctor.  IMO if the doctor you are currently seeing isn't addressing your issues to your satisfaction, you should find one who will.  You may have to "shop around" for a little while, but in the end it will be worth it.  Having confidence in your doctor IMO is a necessity for any type of medical issue - especially an Acoustic Neuroma.

You might also want to look into counseling to help you with your anxiety.  I know counseling can be viewed as a stigma by many, but it can be very productive and helpful.

Please take the time to take care of yourself - it's very important.

Also don't hesitate to ask for our support; we're here for you.

Jan

[bern]

Thank you all for your positive stories.  Tomorrow I see my family doctor for my anxiety. I have made him my main doctor between visits with the neuro-surgeons.  I have another MRI in January. This will be my second since radiation.  The first post mri showed it was stable.  I will deal with these side effects and have my family doctor keep notes. 

I will let you all know what the mri results are in Jan.

[Dog Lover]

Bern,

I will let you all know what the mri results are in Jan.

I hope we hear from you before then!!! 

Cathy