ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Greg M on June 12, 2009, 12:29:14 pm
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Hello everyone, I have a date with the Gammaknife machine on June 17th. It's not the most ideal date but beggars can't be choosers. The insurance came through, I am blessed for that. I am thankful for all the info and companionship you all have given to me over the last 5 months. This was the most difficult decision of my life, well the naming of my son was a bit more difficult. I am looking forward to move on with my life, and accept my future as it is. What will be, will be, what is, is. To all of you who are in the decision process, it is a process. Be patient with your self, go deep on this one and what ever feels right, know that it is all you really can do. Go with your gut and believe in yourself that you can beat this thing because you CAN. My thoughts and prayers are with everyone. Peace through love Greg
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June 17 is going to come fast! I believe you'll be happy with your decision, I know I am with mine. I was all set to have surgery,date and all, then I found out about GK. The surgery recovery time was something I agonized over, but with GK, I was back to work within a couple of days.
Good Luck to you, and let us know how it goes.
Lisa
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Congratulations on the date, Greg. Did you put it on the AN Calendar, yet?
I'm glad the insurance company came through; I know from personal experience that AN treatment - of any kind - isn't cheap.
I'm confident things will work out for you and that you will move on with your life just fine. I can also tell you that "going with your gut" is actually a very good way of making important decisions; it's worked for lots of us.
Please make sure you come back to the forum and give us an update on your procedure.
And now you've aroused my curiosity, what did you name your son?
Jan
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Thanks Lisa & Jan, it is coming up fast. I just found out about the insurance on Thursday. I have yet to put it on the calender, not sure on how to do that. So after having this thing zapped, am I a brain tumor survivor?? Sounds a little weird to me.
I am nervous about going in, with hardly no symptoms as of today. It makes the whole process of getting treatment harder, but I do want to stop it in its tracks so treatment and the GK makes sense to me.
I was planning to work the next day, I am wondering if that is such a good idea?? I am a baker so I have to be at work at 5am, it's not high production or stressful work place but I wonder if I should take a few days off?? any suggestions?
Naming our son was a difficult decision, here is the out come- Dimitri Kanyon Menkiena
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Hi, Greg ~
Congratulations on conquering the insurance dragon and having a firm date for your GK. I took the liberty of posting the date on our AN Treatment Calendar: http://my.calendars.net/an_treatments/d17/06/2009?authenticate=&display=M&style=B (http://my.calendars.net/an_treatments/d17/06/2009?authenticate=&display=M&style=B). I didn't have any details so feel free to edit as you wish.
I would advise taking the following day (or two) off from your bakery job, more as a caution than anything. Better to be off than come in, not be up to the work, and having to leave, possibly setting back your recovery and probably inconveniencing your co-workers to some extent. Everyone reacts to their radiation treatment just a little bit differently. You won't really know your reaction until it happens, so I suggest taking the conservative approach.
Your son's name is fine, a nice mix of ethnicity. As you know, Dimitri is Greek in origin and coupled with an equally unusual middle name, he'll do well with it, I'm sure. Of course, if he's like most kids, around age 14 he'll just want to be called by a nickname, but at least you started him off with a solid first and middle name. :)
Jim
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Glad to hear you have been able to arrange treatment, Greg. I am curious, is this through the Oregon Health Plan, and are you going to the GK center in Portland?
I was fine immediately after radiation treatment, but I think sometimes people need a day or two - perhaps more often after GK since it is all in one day. I didn't really feel anything until a couple of months later, when a little something came along.
Steve
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Hello Greg,
I am so happy for you ,first that you made a decision and second, that the insurance came through for you! You have great support in your wife and your adorable Dimitri. Such a very well behaved little boy! May you have a very successful turnout to your Gammaknife experience on the 17th. I hope your journey will be a blessing to you and your family, and may you go forward and prosper. Thinking of you and sending you prayers,
Jackie
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Thanks Jim, Steve and Jackie for your thoughts and prayers. I am going to take the week off of work, it would be a good break and i can just chill out after wards.
Yes the insurance is OHP and I'm having it done at the GK center in Portland. Dr.Bader is the radiologist and Dr. Wayson is the neurosurgeon.
Is there anything I could do to help with swelling besides steroids (herbs or what not)?? That's of course if there is any swelling!! Blessings Greg
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Hi Greg,
I'm glad you have a date and it is a lucky date, it is my son's 18th birthday. Good luck and best wishes. By the way, I have heard very good things about the Gammaknife treatment, after all it has been around since the 1960's and has come a long way. It will be good. Please let us know how you are doing.
Vivian
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Greg,
good luck, I am sure you will do fine.
On the issue of swelling, of course no one really knows if there is anything that can be done to prevent it. I didn't take any steroids, other than one shot IV right after my treatment. I took a daily dose of curcumin, a natural antiinflammatory. I am not so much the natural herb/supplement person, but I thought it wouldn't hurt. I didn't have any swelling as evidenced by my subsequent MRIs, but of course there is no way to know if the curcumin actually played a role.
I also saw your question about taking the day after treatment off, I would say definately yes. You will be physically exhausted after a very long day, and you certainly need to give some time to your body to recover. I would say take it easy for a few days, try to rest as much as you can, even if it is taking 10 minutes off work to relax.
My best wishes for a successful outome.
Marianna
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Hi Greg,
I am glad to hear you are taking some time off after the procedure. Like Marianna, I was only given one dose of steroids immediately after treatment. 4 months after treatment I experienced some vertigo, and Dr. Noren prescribed a steroid. I was told to get the prescription filled, but not to take them unless the vertigo became severe. My pharmacist told me that one you start taking them, you have to be weened off, as there can be a lot of side effects. I never did take them, and the vertigo episodes only lasted a short time.
Lisa
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So glad your insurance came though. Taking at least a couple of days off after GK is a good thing. I had my GK in Dec 2006, have done very well since, and have never regretted my choice. My prayers are that you will have the same experience.
Grace
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Thank you Vivian, Marianna, Lisa,Grace and everyone on this forum I have yet to talk to. Thank you for all the wonderful thoughts and prayers. I will keep ya up to date on how things went and are going. Blessings to everyone. Greg
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Greg,
Your big day is tomorrow and special prayers are going out for you for a super successful Gk treatment and a speedy recovery with no side effects! We'll be anxiously awaiting news!! Take good care....
Jackie
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Well everything went well and i feel pretty much normal. I took a nap when I got home, feeling good enough to hang with the 3 yr old! I went in at 7am and was finished at 10:30am. Went by really quick, the head frame was tight! It felt good on the AN side though, kinda like acupuncture but X10. They said it took 6 positions to completely fill the tumor. I was the only patient of the day so I felt like I had the place to myself and I had every body's attention. My family was there (my wife Amber and son Dimitri). Dimitri brought a lot of light. Now it's a waiting game, have MRI's was in a while and live life. Every day a new day, say your blessings and give thanks. I pray any side effects will be none or minimal. It does feel quite good that I can start to put this thing behind me, but as we all know having an Acoustic Neuroma, our lives are changed in some way for ever. I pray everyone here well in there journey, for that it is. I will keep ya updated on any changes, for I might have some ?'s. If any one is thinking about getting the Gammaknife treatment I would be happy to talk to you about my experience. Thanks again for everything. Peace through Love Greg
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Greg .....
Did not get in here before your big day, but glad to hear all went well. Not having had any GK or CK experience, I can only say I pray all goes equally well for you in the days ahead as it did today.
Clarice
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Greg,
I just caught this post. This is GREAT news that you came to a decision and that are able to be not too far from home- for treatment.
I am so pleased you are at peace with this.
If anything comes up do not hesitate to PM us Oregonians… we can be there for support.
HUGS,
DHM
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Glad to hear you got it done, Greg. You are a postie now. Resume living. :)
Hello to well behaved Dimitri, and your wife Amber too. Come to the next Portland ANA meeting in September, and tell your story like the seasoned veteran you will be.
Steve
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Hello Greg,
Congratulations on making it through to the other side. Glad you and Amber and Dimitri can get back to living your lives again!!! Hope you see no more issues!!!
Blessings always,
Jackie
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Hi Greg,
I was thinking about you on my way to work this morning. Glad you posted an udpate and that things went o.k. I wish you success.
Vivian
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Hi Greg! I`m glad that you GK experience has gone well. Sounds like your on your way to a nice recovery. My AN is approx. same size as yours. I`m W+W for as long as I can feel good with having no change in AN size. If I was to do anything it would probably be the same as what youv`e done. I`m interested in your experiences and sure that you will be fine. Prayers are with you, Best wishes, Mickey
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Congratulations Greg! Isn't it great to have the experience behind you? I hope you continue to feel good & don't push yourself too hard too fast.
Lisa
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Greg ~
Thanks for your positive and affirmative update. I'm very pleased to learn that it was a relatively trouble-free GK experience and that you're ready and eager to get on with your life and put the AN experience behind you, while realizing that it is always going to be a part of your life in some measure. I wish you clean MRI scans and a great life as you and your family move forward. :)
Jim
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Hi Greg,
I just found your post as well. I'm glad it's over and that you're doing well. I hope and pray for no side effects either.
Keri
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Greg,
Congrats on getting it done! I hope you are still feeling well.
I am on the fence between GK & CK, so it's great for me to hear about your experience. My thanks for your updates!
Good luck and keep us posted!
Beth
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Just read of your GK experience. Sounds a lot like mine. I am so glad for you. Keep us posted.
Grace
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Hi everyone, I haven't been on in a while. Thanks everybody for all the positive vibes! For those of you who I have talked to through P.S., feel free to write me with any more ?'s.
Well i am feeling good, with only an increase in tinnitus. Thankfully so far it is bearable. I do feel a tad bit of pressure back there once in a while. Other than that I feel the same as when I went in. My hearing seems the same, I am counting my blessings day by day, that's the only thing for me to do.
So my neurosurgeon is retiring, which is great for him and I'm happy for him. I'm now thinking what I should do. I'm only 6 wks out of treatment and I have to see a new neurosurgeon. They transferred my file to the doctor under my recent surgeon. He has GK experience as he worked along side my doctor(I don't know how much). I kinda wish he was there during my treatment so he knows exactly how things went down. So my question is can any neurosurgeon qualified in treating AN's look at MRI's and determined if it is a successful or not? I mean even if they did not do the treatment? Another ? is can a neurosurgeon who does not do GK's be a good candidate to read my MRi's in the future and determined whats what? (the doc that i am thinking about does AN surgery just not Gk's)
Well thanks for your time, blessings Greg
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Hi Greg,
Sounds like it is going well, all things considered.
As for changing doctors, I think during the first year or so, having someone who is familiar with the typical course for radiation patients is important. Otherwise swelling might be taken ass a sign of growth, causing unnecessary alarm. Once the tumor is stabilized, any doctor familiar with ANs should be able to determine if it is still stable or has started up again. Having a doctor familiar with swelling issues would also help if it rises to a level needing temporary steroid treatment. Based on the two you mention, I would go with the one who worked with your original doctor, at least for a while, unless he seems too green.
I hope it works out.
Steve
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Hi Greg,
I am glad that everything is going well. Don't worry about the odd pressure/fullness etc., I found that everything went away after a few months and even tinnitus has been reduced to nothing.
I agree with Steve that it is important to have a radiation oncologist who is familiar with how these tumors are supposed to behave after radiation, knows when steroid treatment might be needed etc. A simple neurosurgeon who is not familiar with stereotactic radiosurgery may not know all the intricacies.
Having said this, my experience is that the most important thing is to keep your own control of everything. Unless you have a doctor that you can absolutely trust, I would never listen blindly to what each doctor says, because they may have very different opinions. I did this initially and the different opinions drove me crazy. So keep track of all your MRI reports measurements etc, read your own MRI images if possible, and ask as many questions as you can.
Wishes for continued wellness
Marianna
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Greg ~
For what it's worth, I agree with Steve...stay with your current doctor's successor - for at least a year or so.
My neurosurgeon got antsy when he saw my remaining AN swell a bit, 6 months after completion of my my FSR. Even though I had no symptoms, he ordered yet another MRI for 3 months later. That MRI showed that the swelling had subsided and all was well, except for my large co-pay on the 'extra' MRI scan. I'm now on an annual basis for MRI scans.
I believe that a competent neurosurgeon who has had at least some experience with acoustic neuromas would be qualified to read an MRI report and view the images with a comfortable degree of reliable expertise.
Jim