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  • "Gamma Knife" medical treatment info wanted.

    A long shot here.

    The last 20 months have been an extremly difficult time for us and we are needing first hand information regarding "Gamma Knife" for my wife who has a bening brain tumour "Acoustic Neuroma." The surgeon wants to operate soon but we are looking for this option of "Gamma Knife" which is only available in New South Wales. The side effects of surgery for this particular operation can be significant.

    In particular we are looking for anyone who has had this form of treatment and has had good outcome.

    We have tried many sources for info and we need as much as we can get to make this decision. We are running low on time to make this decision so while not a motorcyle topic we are trying everything/ where we can.

    We know of support groups and have been in contact so we have this under control, we have only found one person though who has had the Gamma Knife and even with this there were many side effects.

    Due to the nature of this if you are a Troll it would be appreciated to go elsewhere for your enjoyment.

  • #2
    Hey mate , no info on the knife sorry.

    If you don't mind me asking , how close to the stem is it , and how large is it atm? Would debulking buy some time whilst you can get some decent info/financial loading organised??
    Might be better than risking some of the physiological effects that may result with surgery at present...

    Good bloody luck to you and your wife.
    Sventek, being a predominantly lazy fuck can you please purchase some for me, bring me the stuff, create something I want after you think of it for me then clean my house, wash my car, dog, bike breathe for me.

    Comment


    • #3
      Thanks Recon
      At this point it is small and the surgeon sais we have the best chance of preserving hearing if we have surgery before Christmas. The Macquarrie University can also use the Gamma Knife at this size however a smal pecentage turn malignant.

      At present Medicare and HBF wont assist us with Gamma knife however medicare is considering this treatment and may offer some support.
      Last edited by Graelin; 25-08-2012, 02:48 PM.

      Comment


      • #4
        Ah , ok then.

        Count me in if you chase a few extra clams in the future to get it done.
        Sventek, being a predominantly lazy fuck can you please purchase some for me, bring me the stuff, create something I want after you think of it for me then clean my house, wash my car, dog, bike breathe for me.

        Comment


        • #5
          I'll ask around and see if anyone knows anything.
          "He who joyfully marches to music rank and file, has already earned my contempt. He has been given a large brain by mistake, since for him the spinal cord would surely suffice." Albert Einstein

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          • #6
            I take it you've been to gamma knife.com and googled the hell out of the subject?
            Oh, and fuck cancer.

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            • #7
              Yes thanks Desmo we have also googled Cyber Knife only available overseas. We have been to the support group and I came away quite depresed from what I saw there.

              Facial paralysis
              Hearing loss
              ballance problems
              Swallowing
              Bad headaches
              are some of the main issues from surgery.


              So I feel that maybe the worst case scenarios go there. Can we find people who had good results some where? This is what we are hoping for and Mrs Lin mentioned may be we can set up a facebook page this morning, so I thought I will try here.

              We have a good surgeon Mrs Lin is a nurse and works on the same floor as him so if we go that way we are confident in him.

              Mrs Lin is scared of the surgery and we have had one contact so far who's had the Gamma knife but after 5 mths still some days cant get out of bed, has double vision and deaf in one ear. We had hoped for beter than that.

              We just have to know that what ever we decide we did our best to educate ourselves.

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              • #8
                You may have already tried this but if you haven't then some case studies or overall studies should show success rates or rates of side effects. Search in the "scholar" section of google and you get official journal articles and case studies. http://www.google.com.au/schhp?hl=en

                Hope that helps, and all the best to Mrs Lin and good luck to you both.

                Oh, and fuck cancer.
                ^^WHS

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                • #9
                  Sorry, I've never heard of this before! Hope you find the information you're looking for Graelin!
                  Dulcius Ex Asperis

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                  • #10
                    That is very helpfully
                    Thanks Slice

                    Originally posted by Slice View Post
                    You may have already tried this but if you haven't then some case studies or overall studies should show success rates or rates of side effects. Search in the "scholar" section of google and you get official journal articles and case studies. http://www.google.com.au/schhp?hl=en

                    Hope that helps, and all the best to Mrs Lin and good luck to you both.


                    ^^WHS

                    Comment


                    • #11
                      Sorry to hear that you and Mrs Lin are having to go through this decision process, my best wishes to both of you.

                      All I can add is prepare for the worst, hope for the best and faith in your surgeon is half the battle.

                      My wife had a life changing surgery 18 months ago and we were given the figures of 5% chance of dying on the table and 2% chance of dying from complications within the next few months, weighed up against 100% chance of deteriorating health for the rest of her life she decided that she had enough faith in the surgeon to leave it in his hands.

                      What are her alternatives?
                      Do you remember the good old days before the internet?

                      when arguments were only entered into by the physically or intellectually able.

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                      • #12
                        I really don't know what to say [MENTION=10159]Graelin[/MENTION] other than you obviously have our very best wishes for a favourable outcome.

                        We had a little scare recently with a suspected brain tumour followed by suspected thyroid cancer.

                        Both turned out to be negative but I do know what you are going through.

                        As Filbert said, what are the options?

                        Stay strong for Mrs Lin and trust the surgeons opinion, I suspect he would be better informed than anybody on here despite best intentions.

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                        • #13
                          Crap.

                          I'll tone down the trolldom, you and Mrs Lin have my sympathies (for the little they're worth) to be going through this, and I hope the early grab and treatment keep side effects down to a minimum.

                          Good luck in your hunt for the optimal procedure.
                          "Once upon a time we would obey in public, but in private we would be cynical; today, we announce cynicism, but in private we obey."

                          Comment


                          • #14
                            Hi Graelin,

                            I'm sorry to hear about your wife. Hopefully all will go well for her, and the whole situation will become a distant memory.

                            It sounds like it's a less common surgery in Australia, but it seems that it's fairly common in other countries such as the USA, and is described as one of the safer options. Unfortunately, as you're discovering, it's safe in relative terms when it's a matter of dealing with high doses of radiation and delicate brain tissue. The potential side-effects you've had listed sound like they're worst-case scenarios. Although, I can understand why they would list such scenarios, so that you can weigh all of the potential risks of the surgery.

                            Understanding Radiosurgery
                            Gamma Knife® Surgery

                            The top link has a little bit more information about the type of surgery. It's called Stereotactic Radiosurgery. The link explains that the name Gamma Knife is a registered trademark, so you might do well to broaden your searches with "Stereotactic Radiosurgery" if you haven't already.

                            Gamma Knife surgery is
                            “stereotactic radiosurgery”

                            • Radiosurgery is the delivery of a single, large dose of radiation to a specific target in the brain with surgical precision. The radiation will react on a molecular level with the cancer cells and stop their reproduction, which kills the cancer.
                            • Stereotactic refers to precise positioning in three-dimensional space. In Gamma Knife surgery, this means a 3-D reference frame is attached to the patient’s head during the procedure.

                              The stereotactic frame:
                            • provides a 3-D reference which can be seen on the imaging equipment to provide exact coordinates for the target
                            • totally immobilizes the patient’s head to ensure pinpoint accuracy when targeting and delivering radiation - it’s similar to placing a camera on a tripod rather than trying to hold it steady with just your hands
                            It might be possible for you to get in touch with patients from other countries. As for the links above, they're from the IRSA site: IRSA - RadioSurgery Association Macquarie University Hospital is obviously listed as one of the locations.

                            Otherwise, there are some web based discussions on the treatment outcomes, like here: Stereotactic Radiosurgery - NEED YOUR HELP - Discussion - Lung Cancer Survivors Support Community - Inspire However, being an internet discussion board with complete strangers, it's hard to be certain these people aren't being paid to advertise the type of treatment. That being said, it might pay to contact one of the cancer support charity groups. Even if they can't put you in contact with someone who's gone through the same thing, they may be able to point you in the right direction and, with any luck, they'll have less bias than someone with a financial interest in the matter.

                            Hopefully some of that is of some use.

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                            • #15
                              Worst case scenarios are just like success stories.....

                              They help weigh up the risks of the options but have absolutely zero influence over the outcome.....

                              I have a reliable Ducati and a Honda that never starts to back up my theory
                              Do you remember the good old days before the internet?

                              when arguments were only entered into by the physically or intellectually able.

                              Comment

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