Difficult decision - GK ?

[Glupson]

Hello,

This is my first message here. I've already red a lot of your testimonials, this is really a very valuable source of information, thank you all for that!

I am French-speaking person, so please – excuse my English 

On february 2015, I had my 19mm trigeminal schwannoma diagnosed. As it is very uncommon, I can't find as much information as for the AN, so I am here, on the AN forum.

Those days, I have to decide what to do – w&w is not my way to deal with problems, so I'm thinking about the surgery of Gamma Knife. I am aware of surgery risks, from the haemorrhage, hematoma, loss of neuropsychic functions, etc. But the risks of GK seem different and more difficult to evaluate.

I am afraid of taking the wrong decision, based on short-term advantages – no craniotomy, no anaesthesia, only one day in hospital – and just postpone the problem, or live with the fear of Georges come-back. Yes, the mine is named Georges 

My questions are – are there any long-term statistics of GK outcomes, testimonials ten years after the treatment?

Gloria

[NYLady]

Hello Gloria...

Welcome.  Your English is just fine.

One thing you have not mentioned is your age.  This is also a factor in decision making, especially in the case of Gamma Knife.  I had GK about 9 months ago.  In my case, I am at the higher end of the age scale 70+, so for me, it was the way I preferred to go with my small AN.  As you know, there are risks with each procedure, W & W, surgery and GK.  There are records of good GK outcomes for about 20-30 years.  Again, if that is your main concern, I would also look into the results in those time frames for the other two methods of treatment.  The decision is a confusing, and difficult time, but once it is made, you will proceed with confidence.  Educate yourself and follow your gut. 

Best to you,
NYL
 

[Glupson]

Thank you NYL.

I am 50,  good health 

[ewhitese]

Hello Gloria,

I too had a small AN and chose GK surgery upon diagnosis.  I was experiencing symptoms and realized I was in a growth phase of the tumor.  I am curtain my tumor existed for some time looking back at unexplained symptoms over the years.  I was 54 years old when I chose surgery.  I feel that I made the right choice.  GK surgery comes with it's own side effects that come gradually over time about 2 years, so we are postponing post operative effects rather than immediately as in removal surgery.  I think removal will be a shorter span of time for recovery, but it may involve complete loss of the nerve effected, such as permanent balance nerve or hearing or facial.  Each surgery option comes with its own list of  positives and negatives.

I do not know what my long term prognosis is, my 2 year anniversary will be this summer in August.  I chose GK surgery right away, I would possibly have been able to postpone that decision and be in better shape today if I had stayed on watch and wait.  I found that symptoms began to make work difficult at 4 months post op.  I found I could not meet the demands of my job at 6 months and finally gave in and retired 10 months post op.  Today I am at a better place than I was at 10 months post op.  How can you predict the out come, I don't think anyone has that figured out.  If I had been able to stay on watch and wait for 4 years I would have postponed surgery until after full retirement eligibility.  I am fortunate that I had reached a point in my career that early retirement was available to me and am not financially devastated.

If you can maintain and have minimal or no symptoms now it may be watch and wait is a good alternative.   My question would be which nerves are effected by Georges and what symptoms are you experiencing.  My tumor is attached to the hearing nerve and I have been able to retain some of my hearing.  I have not been evaluated by the audiologist in the past 6 months but I feel that my hearing is getting a little better.  And it could be I am getting used to the hearing loss and not missing it as much as when it went away.  During the past year and a half I had lots of balance issues and vertigo, those issues are going away.  My tumor has not shrunk but is not getting any larger.  I do not regret making the decision on GK surgery timing and feel I was becoming symptomatic and needed to resolve those issues.  I do not regret the type of surgery, I believe GK has allowed me to retain most of my normal function and the hearing loss is annoying but I can live with that.  My outcomes are my own and I have not seen two that are the same.

Before opting for GK too soon I would have a frank conversation with the doctors involved.  What nerve is directly involved how will it effect the nerves around it?  Where in the skull is the tumor located (some small tumors generate big symptoms in tight places).  What are the options in treatment and how complicated will it be to recover?  Is my tumor growing and how fast?  Be sure to find a doctor team that is experienced and specialize in GK surgery if that is your choice.  Make sure they are respected in the AN community. What is my financial situation can I be secure if I have to leave work as a result of this?  There are many more questions that will follow when you begin to find information and answer questions that lead to more questions.  Ask often and as many people as you can.

My thought process was very emotional and not very scientific, I will admit I have found more information after GK than I did before surgery.  All that being said I would not change my choice to go ahead with GK surgery when I did.  I have no regrets and believe I made the right choice at the right time for my set of circumstances.  Being comfortable with your decision is important and each person must come to that understanding in their own way.  AN also known as Schwannoma is a slow growing process and time is on your side seeing that the tumor is 19mm.  So give yourself enough time to make sure you have made the right choice for yourself.

You are in our prayers
Ed

[Glupson]

Thank you Ed for your advices.
Your own experience is very interesting and I am happy to see that you are going fine now, after some quite difficult time. Hope that you enjoy your early retirement.

On my side, I don't think about leaving my work. My social insurance cover up to 2 years of medical leave, with almost no financial loss. I hope re-work quickly after the GK procedure, and maybe take some time on medical leave during those tough periods that usually come after few months.

I have very light and acceptable symptoms – just some numbness on one side of the face, few times a day. But, the location of the schwannoma – on the trigeminal nerve, near the cavernous sinus – makes that no specialist I saw till now considered the w&w option for me. I simply have to do something, now.

I saw three experts, in two renowned university hospitals – one specialized in surgery, other in GK. Based on what I learned, I made my decision – it will be GK. And very soon!

So, other post-GK testimonials are still very interesting for me. It helps me to apprehend what is coming and what I have to go through.

Thanks to all for your time and support!

[Glupson]

The GK is scheduled next week 

I would be very grateful if you can share your post-GK experiences - when have you returned to your work, when could you drive, run, swim... ?

Thanks in advance for your help!
G.

[arizonajack]

Hi Glupson,

You can read my GK story by clicking on the link at the bottom of this post.

It's been 27 months and, so far, it has worked out well for me.

[Kat From Indiana]

I had GK on a Friday and went back to work on Monday.  Now 10 months later I have not missed any days of work due to GK however I have had bad headaches. I have always had bad headaches.  I am now working a 28 hour a week job, where before I was working a 45+hour a week job.  I don't have as much energy as I would like.  Best of luck with your journey.  Follow your instincts an then don't look back. 

[Glupson]

Kat, Jack,
Thanks for your answers and all this interesting information.

I'm kind of geting nervous about my future GK    but I'll be ok, for sure 

[Meleka]

I worked at a Gamma Knife center for many years and I saw excellent results from patients of all ages.  The main thing to remember is the tumor is not being 'removed' but the growth will be stopped and rendered inert the day of treatment.  Sometimes on a 6 mos. MRI follow up it can appear as if the tumor has grown but that is called 'bloom' and then it begins to shrink.  The symptoms should diminish over a period of time and any useful hearing should be preserved (75% chance). 

[darkorchid12]

Hi,

I am in the middle of the process with Cyberknife.  I have now had two treatments done with one more tomorrow.  So far I did get a tremendous  headache last night but today, so far I am okay no pain. In discussion with doctors headache could have occurred to a variety of factors including the ever present stress.  So time will tell. After tomorrow's tx I will be heading home (driving 7 hours).. Truthfully I can hardly wait to get home!

In six months I will need an mri and once yearly after that just to check on tumor's status.  This method seems to be the best method for me.

I also have a trigeminal schwannoma.

\Best of luck!

[arizonajack]

Kat, Jack,
Thanks for your answers and all this interesting information.

I'm kind of geting nervous about my future GK    but I'll be ok, for sure 

On the plus side there's always the chance that you'll be the one to develop super powers from the radiation. Hasn't happened to the rest of us, but you never know. 

[Glupson]

Kat, Jack,
Thanks for your answers and all this interesting information.

I'm kind of geting nervous about my future GK    but I'll be ok, for sure 

On the plus side there's always the chance that you'll be the one to develop super powers from the radiation. Hasn't happened to the rest of us, but you never know. 

Not sure that I would be happy with Hulk super powers if it comes inevitably with his look and size   

[ANGuy]

Kat, Jack,
Thanks for your answers and all this interesting information.

I'm kind of geting nervous about my future GK    but I'll be ok, for sure 

On the plus side there's always the chance that you'll be the one to develop super powers from the radiation. Hasn't happened to the rest of us, but you never know. 

Not sure that I would be happy with Hulk super powers if it comes inevitably with his look and size   

My son would think it's awesome.  Of course he's 7, but he might have a point.

[Glupson]

Hi, it's Hulk here 

Just did it yesterday - tough day!

People there - in CHUV, Lausanne University hospital - are great, really. Everything happens smoothly, is well organised, a real example of a Swiss clock. Interesting fact - at least 50% of staff are non-Swiss, but Swissness is kind of contagious 

The procedure took 1 hour exactly, listening music and being scared of a result (and what if they miss-calculated, and what if they just forgot me here, alone, for hours... hey, somebody there? no? ok... ). Well, they did not - they came to set me free from the GK machine, my headframe, and they let me go home. See you in 6 months.

The titanium headframe made me suffer. Not during the procedure, but after, when it was removed! The pain took about 5-6 hours to calm down enough to let me sleep.

This morning - I feel quite good, relaxed, with two Hellboy-like scars on my front  as a souvenir of headframe.

My symptoms are reinforced today - the numbness on the left side of my face, mouth and tongue. Is it usual?