ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: mcrue on April 16, 2016, 10:59:53 pm
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The American Hearing Research Foundation claims: "If surgery is eventually required, surgical complications in this situation, such as severe facial nerve weakness, are nearly 100%. This occurs because the facial nerve often becomes “fused” to the tumor after the gamma knife procedure. Like surgery, hearing loss is common after gamma knife surgery."
http://american-hearing.org/disorders/acoustic-neuroma/#affect
Dr. Schwartz indicated to me that the risk of microsurgery under his hands post-GK was closer to 15%.
Who is correct?
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I suspect both are correct. The American Hearing Research Foundation provides overall statistics from their sample dataset, whereas Dr. Schwartz provided his results (or those from the House). This is why it is so important to look at the results for the facility being considered as opposed to just general statistics.
The same goes for other risks. You will see that there is an x% risk of death on the operating table when the surgical approach is taken. However, if one looks at the results for the facility their procedure is being performed, they will find the number to be quite different. This is what I had done prior to my surgery at the House and found for similar sized tumors "all" patients were released to a hotel or their home after surgery/hospital stay...which means this risk is 0% (or very close to it) for that facility. BTW, the 0% also included the need for any inpatient rehabilitation.
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Dr Schwartz is certainly an excellent world renowned surgeon. I believe he has only lost one patient in his career, and that was several weeks post-op from an untreated blood clot. Nobody has ever "died on the table" with him; however, I am aware of the 1 in 500 statistic that Dr. Chang puts out (compared to 1 in 20,000 who may get cancer from radiaiton). I would go to the House Clinic if I ever needed the surgery.
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I think its funny that everybody talks about losing your facial nerve after failed radiation, but rarely do we hear about the risks of losing your facial nerve after failed surgery!
The risks I believe are similar and around 30% not 100%
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I think the literature on facial nerve damage that is irreversible after GK was around 5%.
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I've heard from Stanford and Hopkins that surgery after radiation often makes surgery more difficult since it changes the tumor and may make it "stickier". Hopefully we can agree on this topic.
In my opinion. statistics with acoustic neuromas are misleading. There are so many factors and limited patients.
Furthermore, the main study suggested facial nerve " weakness". It doesnt say the severity or duration? They don't appear to differentiate between a bell palsey grade 1 from a total resection.
I would expect weekness after radiation to be greater than 15%.
It appears House is the premier facility, however, I wouldn't put much faith on the statistics. There is too much interpretation.
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From the research I did prior to having Gamma Knife, and the specialists I spoke with, the risks of facial nerve damage were definitely higher with surgery than radiation when choosing an initial treatment. In my personal case I was told that for every 1cm in size I faced a 10% risk of facial nerve damage with surgery but a less than 3% risk with radiation. My AN was 1.8cm when diagnosed and 2.4cm when treated 1 year later.
We all know from this forum that many things play into the risk of facial nerve damage - the size of your AN, the location, the skill and experience of your surgeon. When I was truly struggling with which treatment to have, I asked a neurosurgeon about the risk of facial nerve damage if surgery were required after Gamma Knife. He asked me why I was worrying so much about a second treatment when I hadn't even had the first. When I considered my age at the time (58) and the high success rate of Gamma Knife, it put things in perspective for me. I choose to focus on what treatment made the most sense and felt the most comfortable at this current time of my life. Looking down the road at a second treatment that may never be required was only making things more complicated than they needed to be.
Cathie
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thank you Cathie, your points make good sense to me.
I just had CK treatment on 19 April in Munich Germany by Dr Muacevic. I was told that the effect of radiation treatment mostly show up at about 4-6 months. have anyone seen immediate facial nerve damage post radiation treatment or mostly few month later? can we do something to prevent before it happens?
Kai-Jia
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KaiJiaH,
It's my understanding that facial nerve damage rarely if ever occurs with radiation when it is the initial treatment. That's one of the big benefits of having radiation. I was told that I may experience facial nerve weakness, but paralysis would not be an issue. I did not experience any facial issues, but I did develop the dry eye problem. Interestingly the numbness and tingling that I had been experiencing on my tongue and lip pre treatment, went completely away within 3-4 months post treatment and has not returned.
Side effects from the radiation usually start to show up around 6 months post treatment. This is because the AN is reacting to the radiation and swelling. As the swelling subsides so do the side effects in the majority of people. One thing to note is that the side effects and swelling can come and go over the course of 2 to 3 years. Radiation is not a quick fix, so it's good to prepare for a few ups and downs along the way, just in case.
Cathie
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I don't think it is a trivial issue to not worry about facial nerve damage regardless of treatment. A severed nerve has terrible downstream effects that severely effect quality of life in a very bad way. The fix is a nerve graft, which is yet another serious surgery and takes quite awhile to restore even limited function. My doctors thought the facial nerve was involved, which really directed me to GK. I wanted nothing to do with surgery because of the risk, and because after all, it is still a major surgery. My think was if I got stabilization forever, or for at least ten years, by then, treatment of these things will have advanced by an order of magnitude.
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Thank you Cathie for answering my question and BLW to share your points.
Do you know why it takes months to have AN react the radiotherapy treatment and swell? Is it possible the AN swell in few days or immediately after the treatment? I experience block or full ear and declining hearing feeling from the first day after the treatment . It comes and goes. If I rub and massage around ear, it seems help. It gets worse if I am tired.
Is it possible caused bu swelling?
KJ
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The idea of radiation is to give it just enough to stop the tumour from growing.
Radiation does affect things straight away, which is why there can be effects almost straight after radiation. The swelling is believed to be caused by the cell as it dies being unable to control the amount of water within it.. So the individual cells get bigger!