At what point does something have to be decided?

[bethtretrault]

Janey-I was told (maybe just my case) that because I have had vertigo and been dizzy on occasion that radio surgery would not be a good option. I did not ask why but would think it might be because of swelling of the tumor which might make those symptoms worse. That is why I went with conventional surgery. Plus-it takes the thing out. Surgery is scheduled for November but I don't think I will change my mind.

[Echo]

I had a similar experience where I had to decide between surgery or GK, not an easy decision.  Cyber knife was not available for me so at least that decision was made.  I did a substantial amount of research into my options and created a Pro/Con list of the risks I faced with each treatment and the effect that both treatments would have on my quality of life.  In the end, I decided on GK and for me it was the perfect choice. 

Please don't let the fear of the pins on the head frame sway your decision process.  I've heard of some people being temporarily sedated while the frame is attached and in my case I was just given local freezing first and then the frame was attached while I was awake and sitting in a chair. My biggest complaint was that I couldn't wear my glasses when the frame was on, and eating was a bit awkward. The advantage of a one day treatment outweighed the discomfort of wearing the frame for a few hours.   I can tell you that some people experience a massive headache after the frame is removed and others walk away without any issue.  I was one of those who experienced the headache, but again, you are in the hospital and they take immediate care of you.  My headache hit before the last pin was removed and the frame taken off.  I was immediately given an anti nausea drug and a pain med, both through an IV line, a cool cloth for my forehead and I fell asleep for about an hour.  After that hour, I was woken up and taken home headache free!!! No further pain meds required and no steroids. 

Do your research and follow your gut feeling, you'll make the choice that's right for you!

Cathie

[MG]

Thank you Keithmac, NYLady, & Janey.
 
  I have an appointment to see a radiation specialist who does Linac Scapel in Gainesville. I think it is more like Gamma Knife. I will see what he has to say and then of course do more research on other methods. Did you have any side effects from Gamma NYLady? I just want to get everyones take on their experience. I appreciate all of your help! 

Thanks again,
MG

[NYLady]

Hi MG...

I had my GK procedure approximately one year ago...Prior to undergoing treatment my surgeon, Dr. John Golfinos, advised me that my existing balance difficulty could worsen somewhat after treatment.  Also, because of the location in the cochlea, hearing could deteriorate.  I have posted my radiation experience if you wish to review it, but to make a long story short, I had absolutely NO side affects directly after treatment.  The head frame was a non-issue, because it was painless.  (They give you good stuff both intravenously and with a lollypop) and frankly when the doctor applied the head frame, I was barely able to tell he was doing anything.  Just felt him back there and the sensation he was touching my head....no pressure, no pain, no headache.  When it was over, he took it off, and no problem.  For the next three to four months, I felt fantastic.  No wonky head, no balance issues, just some tinnitus which I also had prior to treatment.  Hearing was about the same, but it was very poor prior to treatment.  At that three month point in time, symptoms began to manifest themselves in that my balance became compromised, and my hearing began to deteriorate.  At the nine month period, I was given a prescription for vestibular therapy, which I am currently undergoing, with what appears to be a positive effect.  It is slow and you have to stick with it and do the exercises correctly, but it does work.  I have great therapists who are encouraging of realistic goals.  I do not expect to be perfect MG, but better than I was and it looks like I will get there.  My useful hearing in my AN ear is about gone.  I hear sound, but cannot make out words.  Thanks to the information on this forum, I enquired about and was fitted with Phonak BiCros hearing aids.  Absolutely the BEST thing I have done so far.  My "hearing" now is better than it has been in  the past few years.  Albeit I am actually only hearing out the better ear because of the way the Bicros works, and that ear is compromised as well, but it truly has changed my life.  I am more a part of things again and life is good MG.  Tinnitus is so slight, maybe because I am hearing more sound, not sure, but this too has become a non-issue.  GK was a great choice for me MG because of my age (74) and the fact that I wanted it done and over with.  Surgery scared the stuffing out of me, and as it turned out, it was not was recommended for me anyway.  I am a proactive lady and felt I just had to do something rather than wait any longer for my small tumor (7mm) to grow larger and cause more problems, so I went ahead, and I am glad I did.  I believe if we do all we reasonably can with hearing assistance, vestibular treatment and whatever other means are available to us, apply ourselves in the most positive way and just keep on keeping on, we will realize the best outcome for us.  For some it is surgery, for others radiation, and for the lucky few observation.  Follow your gut MG......still the best barometer for our choices in life.  Wishing you the best.

NYL

[nursepam]

I am a new member, my name is Pam. (I am a Nurse but I am clueless!) I was diagnosed with an Acoustic Neuroma in April 2014. I had Stereostatic Radiation in August 2014 with no change in the size of 10mm. I have been W n W since. I have many balance issues, have had several falls, I have moderate hearing loss in my right ear, with pressure and constant Tinnitus. I also have vertigo and do not do well in a dark room or well on an uneven surface.

I was recently told that my most recent MRI in May 2015 the Tumor has grown outside of the ear canal into the brain more, it is now 12mm x 7mm x 6mm. I am told that since I had Radiation it is too dangerous to operate since the radiation causes scarred tissue to surround the nerves. I would most likely have facial nerve paralysis, lose all of my hearing in that ear, etc.

Just this past July 4th I had facial paralysis on the right side briefly and suddenly for the first time. I went to the ER to rule out a stroke, but thinking it was most likely the tumor-it was. The surgeons said this was to be expected due to tumor location and Radiation and wants to continue to  W n W.  I am so frustrated and feel like I made the wrong decision. I guess I should have had the surgery first.

[feline]

You may want to get a second opinion

[alabamajane]

Pam,
Welcome and so sorry you are frustrated and having increased symptoms. I did not have radiation, but had surgery in 2011, so can't give any advice on the radiation side. Although I do believe you can still have surgery after radiation,,,under some circumstances. A second or even third opinion ,,, I think is a prudent suggestion.

I hope  some others will reply to you. However, I suggest you start your own post with a question in subject line such as "Has anyone had  surgery after radiation?",,  you will get more answers to your situation I believe if you start your own post. This one is older and not really specific enough to your concerns.  Many folks may not return to it and see your new concerns. Just  a suggestion.

Will be watching to see others suggestions,, try not to fret too much. I have read on here that swelling after radiation is common ( hence change in size of tumor) and new symptoms can occur from that so perhaps that is one reason your Dr wants to wait a little longer,, I don't know, just guessing,,

Prayers and best wishes for some recovery soon,,
Jane

[SueLL]

Pam - How long and severe was the facial paralysis?  Since my GK surgery I have periodic numbness in my cheek and tongue on the AN side.  Lately the numbness goes all the way up to under my eye.  I don't necessarily use the muscles in that area, so I don't know whether I'd categorize it as paralysis.  It feels like I am recovering from a dental Novocain shot.  Sometimes this happens once a week; sometimes it is every day for a week.  I notice it is worse when my ear is very full, often with a weather change or lack of adequate sleep.   

I guess one question to ask is how close the tumor is to the brain.  Since radiation takes years to stabilize the AN, it may be working. 

[Gearbox123]

Hi Janey,  I understand what you must be going through,  these decisions can drive you mad. My tumor is a true vestibular schawanoma. It was 4 mm last year and I  just found out that it was Closer to 5 mm. MRI center faxed last years report over to my Neurosurgeon.  Opps!  I always been told that it's more about the location and symptoms?  I am 48 with balance issues and was told from 3 yrs ago that my tumor was in a bad location and surgery would be a better option.  I also have a condition call dystonia which is  a movement disorder,  so I would have to be extra careful thinking  about moving from W and W. I am consulting with my Neurosurgeon on Wed about Gamma Knife. I am with you on the stress issue, but I think the data is showing great results on the radiation side of treatment of the smaller size A.N, but do your Homework. Whatever I decided for now I will feel comfortable that I made the right choice.  I will say a prayer for you that you feel comfortable in the choice that you make and there is no confusion. 

[MG]

NYLady,
 Thanks for your post. I appreciate you reaching out to me as I and others are so confused on what is the right thing to do. I will review your radiation expereince and others.
Good luck with your therapy and I hope your balance improves. Take good care.

MG 

[Janey]

Hi Gearbox 123
Thank you for you resonse.  I wish you success in your course of treatment as well!

[nursepam]

Seull, Hi Sorry for the delay on my reply! I have since had several episodes of this facial numbness or paralysis. It starts with my eye twitching and the corner of my mouth drawing up each time it is the same always on the side of the AN, similar to a stroke. It is very quick goes away almost as quickly as it comes. Although, the other day it happened over and over over a period of ten minutes or so. The  surgeon feels it is just the AN pressing on the facial nerve. It is very scary. There is no pattern, I was laughing once, driving another time...

[nursepam]

Jane,

Sorry to you as well for the delay in my reply! Yes I have heard that there is swelling after Radiation that can be up to a year. I agree, and I thought I should get another opinion regarding the surgery. The Radiation Oncologist and the Neurosurgeon both agreed I should remain in the wait and watch status despite the tumor growth and the new symptom of facial numbness! It is frustrating. I am scheduled for another MRI on Friday of this week. I will post the results of that. My balance is still off, my hearing loss and tinnitus have remained the same.

Oh and I agree I need to post a separate comment for people that have had surgery after Radiation, that would be very helpful for me.

Thank you,

Pam

[nursepam]

I just received the results of my MRI from August. There was no change in Tumor size which is great. I am however having more and more episodes of facial paralysis. I am unable to laugh out loud without triggering an episode. I had six in one day, three just yesterday. I am able to capture them on my cell phone now. My entire right side of my face is distorted... it looks horrible! I hate it. I see the Neurosurgeon on Friday. I am sure this will not change his thoughts that removing the Tumor post Radiation is too dangerous, but I need to know at what point if ever,  there be a decision to remove the Tumor. I can't live like this! The research I have found is clear the sooner the facial nerve paralysis is addressed the less likely of long term effects and atrophy.

[alabamajane]

Pam,
If I was you, I would get a copy of the MRI and send out to House Clinic in Los Angeles. They may be a good resource for a second opinion about removal vs w & w,,, I agree that I could not sit around and watch my face contort hoping it gets better without more explanation. I feel so badly for you!

I'm not a Dr. But Drs don't always know how hard this journey is for us and they are not the ones experiencing the symptoms and side effects! Their lack of concern and empathy can be MOST frustrating.

I do hope you find some relief and answers Friday. Please let us know.
Prayers and thoughts,
Jane