ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Glupson on April 07, 2015, 04:00:03 am
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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 ;D
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 8)
My questions are – are there any long-term statistics of GK outcomes, testimonials ten years after the treatment?
Gloria
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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
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Thank you NYL.
I am 50, good health 8)
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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
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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!
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The GK is scheduled next week 8)
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.
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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.
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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.
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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 8)
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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).
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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!
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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 8)
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. ;D
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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 8)
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. ;D
Not sure that I would be happy with Hulk super powers if it comes inevitably with his look and size :-\ ;D
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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 8)
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. ;D
Not sure that I would be happy with Hulk super powers if it comes inevitably with his look and size :-\ ;D
My son would think it's awesome. Of course he's 7, but he might have a point.
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Hi, it's Hulk here :-\ ;D
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 8)
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 8) 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?
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Funny story. I'd originally been scheduled for GK in Dec 2012 but got word that my three doctors had a scheduling conflict so I was rescheduled for Jan 2013. After that I referred to my doctors as Dr Howard, Dr Fine and Dr Howard.
https://www.youtube.com/watch?v=53KcqITIPlA
Anyway, at one point I joked to a friend of mine that I was going to mark the side of my head so the Drs would know where the AN was. I wasn't serious, of course, but weeks later I'm sitting on the gurney waiting for the head frame when the nurse comes in and hands me a marker and asks me to mark the side of my head where the AN was. I laughed so hard I had to explain why it was so funny.
The silence of the GK machine was a welcome relief from the MRI machine. So silent that I wondered if GK was just a scam. They charge $60,000 and put you in a machine that doesn't do anything. (Just kidding.)
Your hellboy marks on your forehead will take a few weeks to subside. During that time you will be compelled to touch them and look at them in the mirror. I was. I even took a photo of them.
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The best placebo effect ever ;D
Today, I am just a little bit nervous about symptoms which are present all the time :-\
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I am also 50 and underwent Cyberknife, which I believe is very similar to gammaknife. My procedure was done 5 years ago and due to the recent passing of a neighbor from brain cancer I went back for a follow up MRI. I had not had an MRI for a couple years because all symptoms were stable and I didn't feel there was any need to expose myself to radiation. I am amazed and excited to say that five years post treatment my tumor has shown more shrinkage. I myself am VERY pleased with the results of undergoing this procedure vs. surgery. No side affects for me and the results and recovery were non eventful. I hadn't even considered sharing my information until I participated in the Brain Cancer Awareness walk just a week ago and met a 25 year old who recently underwent the surgery. After visiting with this family who was told that was their only option I want to make sure others know they need to do RESEARCH. I also was told that surgery was my only option, was scheduled for the next day when thankfully my husband contacted someone who game me this other option. I don't know this 25 year olds statistics but can tell you the outcome after surgery was not one I would want. It has only been a couple months since her surgery so I hope with therapy that she regains a normal life, however, her facial muscles are not what they use to be, her eyesight is not good in one eye and even her personality has been effected. Please let me know if you have any other specific questions.
GOOD LUCK!
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Hi CrystalV and welcome to this forum .....
Just a point of clarification for other possibly new patients reading here ..... MRIs contain no radiation, CT scans are the ones that use x-rays. MRI stands for magnetic resonance imaging and use magnets to create the images. See: http://www.fda.gov/Radiation-EmittingProducts/RadiationEmittingProductsandProcedures/MedicalImaging/ucm200086.htm
Clarice
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Hi everyone,
Here I am for an update, almost two months after my GK treatment.
During the first week, I had some bad headaches, mostly due to headframe. Other thing that worried me – the left side of my gingiva was swollen, inflamed, it was almost impossible to brush my teeth. And the left side of my face was numb. I talked to my surgeon, who explained me that it was a strong immediate reaction to the radiation, and he sent me the drug prescription for cortisone. But finally, I didn't need it, the problems just disappeared. Cool :)
Till today, I have my symptoms few times a day – it is a tingle on the left side of my mouth and tongue – not more, not less than before the GK procedure. So far so good 8)
Have to wait 4 months more for my first MRI.
In the meantime, life goes on...
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Hi Glupson - Yes, my first symptom after GK last July was numbness in my tongue and side of face. It still comes and goes.
Even though you'll feel pretty normal for the most part, don't forget that your body has gone through a medical procedure that will affect you for quite some time. You'll likely have days of fatigue here and there and some wacky symptoms will come and go.
Congrats on making it through!
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Hi Glupson - Yes, my first symptom after GK last July was numbness in my tongue and side of face. It still comes and goes.
Even though you'll feel pretty normal for the most part, don't forget that your body has gone through a medical procedure that will affect you for quite some time. You'll likely have days of fatigue here and there and some wacky symptoms will come and go.
Congrats on making it through!
Thanks for your answer, and the friendy warning that it is not over! Being aware of it helps not to be dissapointed, if symptoms come back or get worse.
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GK was an easy decision for.me. Surgery has a long recovery, and I don't get sick days, nor regular unemployment. Radiation would have been every day for a month, and I travel, so can't come over lunch hour, as was suggested.
There were no side effects, except for further hearing damage. I was somewhat having balance problems for a couple of days.
My hospital stay was 0600-1300 hrs. It was done at Colombia Presbyterian by Dr. Sistine. He's a goofball, as is Dr. Isaacson. This made things almost fun. The nurses are nice too. The only fly in the ointment is Dr. Sisti's receptionist. When I have to make appointments for MRI scans, she is a little *****y.