ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Derek on April 23, 2008, 01:01:08 pm
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During my recent annual consultation with my neurosurgeon (in whom I have complete trust and who specialises in my prefered GK future treatment option) I mentioned that the Cyber Knife process was being introduced elsewhere in the UK in the near future and asked whether his organisation was considering eventually acquiring that system in preference to the Gamma Knife.
His unbiased response was that it was indeed intended to acquire Cyber Knife but that it would only be used for treatments to other parts of the body which could not be undertaken via the Gamma Knife and that he would NEVER use it for skull based radiosurgery such as the treatment of acoustic neuromas. His rationale was that whilst accepting that the rigid and fixed head frame used in the Gamma Knife procedure was perceived as somewhat inconvenient and uncomfortable when compared to the Cyber Knife, it nevertheless ensured 100% no risk of movement during the delicate radiosurgery operation in preference to the reliance on the Cyber Knife computer software to automatically adjust the equipment should any inadvertent moving of the head occur during the radiation procedure. In essence he was implying that however remote the risk may be of a malfunction occuring in the software, he was not personally prepared to put patients at any additional and unneccessary risk.
Whilst I have already opted for Gamma Knife treatment, if and when that becomes neccessary, I have to say that I considered his comments were worthy of note when evaluating the available stereotactic radiosurgery treatment options.
Regards
Derek
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hmmmmmmmm, interesting.
I am waiting to see the specialist here that does both CK and GK (the new Perfexion model). I vacillate between the 2 and am trying to learn the pros and cons of each. I am sure it would also depend on hearing and facial nerve.
Thank you for the input....any others out there?
Mary
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Hi Derek and thanks for sharing that. I'm rather intriqued by the dr's rationale..... I know you participate on the CK Patient support board... I'd be cuirous of Medbery and Spunberg's thoughts on your dr's reasoning for not to use CK on skull based tumors. Possibly toss it at them to get their thoughts on it..... I'm withholding mine on it.
Phyl
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Thanks Phyl for the idea. Derek, if you find out what those docs say, would you share it?
Thanks,
Mary
BTW...heading for a ANA support meeting today in Phoenix. That should be interesting. Take care!
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Mary / Phyl...
During my consultation I also asked the neuro' whether his organisation were considering acquiring the GK 'Perfexion' model. His response was that they would probably eventuallly opt for that model as a replacement of their current 'Model C' equipment particularly as the newer model was also suitable for radiosurgery of the spinal area. He did not believe that there was any distinct advantage of the 'Model C' v 'Perfexion' re the treatment of acoustic neuromas that would warrant immediate replacement.
I will endeavour to obtain a response from the doctors on the CKPSG board re the aspects relevant to my neuro' and his personal reasoning for not using CK on skull based tumours. I will post their response here albeit I am confident that Drs Medbery and Spunberg will have a counter argument fully supporting the use of CK!
Regards
Derek
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Derek,
as you noted, I know you post on the CPSG board and I'll be anxious to see how Medbery / Spunberg et al respond to the assertions of your neurosurgeon. However, I suspect it will go along the following lines
1) while I respect the fact you have a lot of confidence in your neurosurgeon, I would also say that while they may be "unbiased" they are also quite "uniformed" about how CK is designed to work. The comments are inaccurate on several levels. GK and CK both rely on software in programming their targeting. GK requires the headframe because it has no ability to verify position during treatment. CK verifys head / AN placement through active monitoring during the treatment process. If you move from where it thinks you should be it stops treatment. Hopefully your neurosurgeon will read the manual when the CK arrives since he/she doesn't apparently understand how it operates.
2) the GK perfexion version is irrelevant to the AN application discussion. It is Elektra's attempt to expand GK beyond a pure cranial application but falls far short of CK's ability/ flexibilty to treat tumors throughout the entire body.
Mark
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Hi Derek,
Curious. I had more or less the same information, and came to exactly the opposite conclusion. I very much liked the fact that the CK machine was capable of real time imaging, guiding the beam into position based on where my head actually was. It is like a guided missile, rather than a ballistic missile. I find it odd that would be interpreted as an additional risk, not an improvement.
I am a computer programmer, so I guess I have a tendency to like electronically controlled systems, robotics, and high tech solutions. None of the clinic evidence I have seen suggests to me that there is any problem with the targeting in CK.
Steve
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Hi all...
As requested I posted the relevant query to the doctors on the CKPSG board and Dr Medbery has provided the following verbatim response:
(quote) "He is correct. He is not fully confident but most of us are. We have a number of lines of evidence to prove we are right. We have compared results in patients treated on GK with those treated on CK (so we have both available) and they are identical. We have regular testing to show that targeting is correct. Also, a dirty secret is that patients treated with the GK are not rigidly immobilised. They can tilt their heads several degrees and that motion is not accounted for by the GK. GK'ers just assume it is not important. Software controls many things and the CK is not the only place where you put your life in the hands of a computer program." (unquote)
In noting that response and the comments of Mark and Steve it is worthy of mention that all three are understandibly proponents of the CK procedure re Dr Medbery being affiliated to CyberKnife and Mark and Steve having undergone CK treatment. The majority of posts on this forum in the ongoing CK v GK debate tend to suggest that the main reason why those who opt for CK over GK is down to the simple fact that CK does not require the fitting of a rigid head frame bolted to the skull.
In fairness to my neurosurgeon, who is an eminent and renowned professional and who has produced many research papers on the treatment of cranial based tumours and associated medical problems, his comments relevant to CK are his personal perceptions based upon his research. I am aware that his organisation replaced their previous GK equipment with the GK Model C in recent years and I feel certain that due consideration would have been given to installing the alternative CK at that time including full perusal of the 'manual'!. If my neuro's concerns are solely attributable to a perceived risk to his patients' welfare, however minimal that may be, then I think he is to be applauded for his stance which can only increase patients' confidence that they are in caring and capable hands at such a crucial decision making time.
From a personal perspective I would still opt for the GK procedure involving the rigid head frame and the static radiation process over the face mask and moving robotic arm procedure associated with CK.
The bottom line with this debate is the fundamerntal aspect that it is incumbent upon the individual to undertake maximum research and ultimately select a neurosurgeon in whom they have complete trust and a treatment option of their own choosing which they are comfortable with and which they are totally confident about.
Regards
Derek
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In noting that response and the comments of Mark and Steve it is worthy of mention that all three are understandibly proponents of the CK procedure re Dr Medbery being affiliated to CyberKnife and Mark and Steve having undergone CK treatment.
Hey Derek,
to elaborate on this comment, please know that Dr. Medbery is a good source for this question as he performs, both, GK and CK..... he has publically posted that they do more CK now than GK, but he has also been doing GK at his center for many years, so, to me, he can provide the best answer having performed both on a continual basis.... this is only FYI.
Phyl
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Hi Phyl...
I was aware that Dr Medbery specialised in GK and CK but there is little doubt that he favours the CK procedure. I read in a thread in the 'Brain' forum on the CKPSG board posted on 11 April under the heading 'Dr Medbery / Why do you prefer CK over GK' whereby the poster queried whether Dr Medbery had an 'in' with CyberKnife and the doctor responded confirming that he had....not sure what the 'in' refered to?
In order to avoid any ambiguity, I have the utmost respect for the professional advice that is regularly provided by Dr Medbery and in no way was my relevant post in this thread intended to imply that I was dismissive of his considered response with regard to the point on CK procedure raised by my neurosurgeon. They are both eminent professionals entitled to their respective opinions and as previously stated it is incumbent upon the individual to make up their own minds with regard to eventual treatment choice.
Regards
Derek
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Hey Derek,
Oh, no biggie! :) I knew you had some participation on the CK Patient Support board but didn't know if you had knowledge that he performs both.... again, it was FYI only in case you didn't know.....
Phyl
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Hi folks,
All very interesting feedback. I want to consider all perspectives.
I went to the AN support group meeting at Barrows Neurological Institute last night and one of their top neurosurgeons who preforms microsurgeries as well as GKs and CKs. This hospital is one of only 4 in US that has both CK & GK treatment options. He was saying that it is a more common now for people with tumors <3cm to get radiosurgery except in those who are on the young side - like 20 when surgery might be the better option. Since I am 59, I do not fit in that category! :DThe reason they don't tend to do it up to that size is because swelling is more of an issue at sizes above that. He said the 2 radiosurgeries function very similarily. The statistics for CK so far show better hearing preservation, however, since the statistics are not as extensive and do not have long term results, that is still a question. Also the doses would be fractionated perhaps lowering the chances of swelling.
He said the Gamma Knife Perfexion makes the treatment faster and they can now do procedures further down the spine. Both GK and CK, from what I understand are programmed. So software is involved. The CK has the robotic administration, the other the helmut thing (my words, not his... :D). The robot and software is able to adjust for any minor moving such as breathing. The mask is VERY snug having been fitted to the individual's face so moving is quite restricted. The GK head frame keeps the head rigid and is attached to the skull.
He also said with CK if you live here, you come in ahead for all the preliminary work, doctor, and mask fitting. You go home and the doctors do the treatment plan before your next visit. Then you come in 3 days in a row for treatment, about an hour (give or take for tumor size) each time.
Wth GK you come in at 5am get the preliminary stuff done the same day (because the head frame needs to be attached to do it). The doctors analyze the info while you wait with your headress, providing entertainment fo those with you (my words not his ;)). Then they do the procedure. It takes all morning and then you go home and you are done.
I get claustrophobia ONLY in REALLY small spaces (like an MRI) so I found out you can be medicated for that issue.
I have gotten feedback now from 3 physicians here at BNI and will have my official radiosurgery appointment with yet another physician there on May 5th when I can ask all my questions. FOR ME they all advised against surgery, but so far have not led me to one radiosurgery over another. I did talk with a leading neurosurgeon at the top hospital in India (no kidding). MY friend is from India and her brother is a top official with the hospital. I sent him my MRI and medical details. He also concurred in my case that surgery would not be a wise choice. They have both CK and GK at their hospital as well as the x-knife. He thought I should not do the watch and wait. He said almost the identical description of the guy who answered questions at the ANA meeting. He felt CK or GK were my best choices. Reading between the lines, I see a few advantages to each and a few disadvantages to each and the decision for me is fuzzy. I felt like CK in general it sounds like the reasons it might prevail is the latest and greatest (not their words - mine) in innovation BUT it hasn't been around as long as GK so the long term statistics just aren't there.
To sum up, what I think it sounds like, CK may be better technologically especially for people who have hearing to preserve. However you do not have the tried and true long term statistics of the GK so if you feel like that is a risk not worth taking, go GK, If you feel the statistics for CK have been around long enough and are showing great promise, you might want to consider it a good risk. Don't know if that makes sense but that is what I am thinking at present.
Still taking in as much info as possible about this topic,
Mary
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Mary, FAB-U-LOUS post and thank you for sharing in such detail! Great job! VERY insightful and I'm glad you had many questions answered! I can see that you are most definately becoming the best, well-informed patient that you can be... and once you (or Derek or anyone) makes their final decision, regardless of what it is.... we're cheering you on.
thanks again!
Phyl
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To sum up, what I think it sounds like, CK may be better technologically especially for people who have hearing to preserve. However you do not have the tried and true long term statistics of the GK so if you feel like that is a risk not worth taking, go GK, If you feel the statistics for CK have been around long enough and are showing great promise, you might want to consider it a good risk. Don't know if that makes sense but that is what I am thinking at present.
Hi Mary,
Like Phyl, I liked the summing up in your post. I wanted to share my view of the long term results question. It is a view shared by many patients and radiation oncologists, although not by all.
Cyberknife is a newer way of delivering focused radiation (aka radiosurgery). However, the effectiveness of focused radiation on controlling tumors is something shared by all the systems: LINAC, Trilogy, Novalis, GammaKnife, and Cyberknife included. The science of radiation treatment is all about the amount of radiation delivered precisely to the tumor, and the amount of "collateral" radiation hitting nearby tissue. If the radiation is on target, the delivery mechanism makes little difference in the results.
From that point of view, the most relevant long term results are those for focused radiation treatment in general, regardless of the machine used. In that sense, the whole body of radiosurgery results for treatment of ANs applies to all the machines, with relatively minor differences in some details between the various systems.
In my own mind, a statistic, such as one out of Pittsburgh on 15 year radiation treatment results, applies in general to radiation treatment, not just the specific machine they used. Others may view that differently, but from the radiation oncology point of view, zaps are zaps.
Steve
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Hi Phyl and Steve,
Thank you, Phyl. I am a trying. People on this site are great role models. It was so good to be in a meeting with many of us last night. It can feel quite lonely even with caring loved ones, because it is impossible to be in our shoes. I also got to meet Annette in person, who I met here on this web site. We were diagnosed same day, same Dr. isn't that a coincidence? !I really liked her and she is a superb person. I look forward to us cheering each other on.
Steve, GOOD point! I do remember now that the doctor said he expected the statisics will be much the same for long term results.
I never knew I could learn so much technical stuff in such a short time. ;D The ole brain hasn't disappeared after all!
Dizzy Dame,
Mary
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Further re the debate relevant to the perceived accuracy of the delivered radiation doze from CK, my consultant is fully understanding of all of the working and scientific principles but is personally not entirely satisfied that the CK software will automatically re-target the identified area following any inadvertent movement of the head with a 100% guarantee.
In furtherance of patient welfare it is his personal opinion that the GK procedure involving the fitting of the rigid head frame negates that unneccessary risk. He also favours delivering a single radiation doze of 13gy to the target area rather than fractionated lower gy dozes over a number of sessions which he claims is less effective and again increases the risk of not achieving 100% re-targetting.
From a personal perspective I was diagnosed with my AN at 58 years of age. I am now aged 64 and into my 7th year in the 'watch and wait' routine. As is common to us all, I have dealt with the initial shock of diagnosis and the immediate panic to devour every available scrap of information afforded from websites, published material and from medical professionals etc etc.
My advice to anyone considering any form of treatment is to first and formost take full stock of your personal situation. There are risks attached to any medical procedure relevant to the treatment of acoustic neuromas whether it be microsurgery or stereotactic radiosurgery. The risks of mortality and morbidity resulting from microsurgery are of course far greater than those associated with radiosurgery but nevertheless with radiosurgery there is still a failure rate of around 3% and about 1% chance of damage to the facial nerve. Why take that risk if it is unnecessary and by 'unneccessary' I mean that if you, as applicable to myself, are fortunate enough to be diagnosed with an acoustic neuroma that is of a size suitable to all types of treatment and your symptoms are not unduly severe then, acting upon professional medical advice and regular MRI scans, why not in the first instance closely monitor the situation via the medically accepted 'watch and wait' routine? Upon my initial diagnosis and prior to my research, my (then) micro neurosurgeon wanted to operate within weeks. Now into my 7th year, there has been no significant increase in the growth rate and my level of fitness and quality of life at 64 could not be better. Remember that irrespective of whatever treatment you eventually choose to have, realistically you will still have to undergo regular MRI scans for the rest of your life...just in case the bugger decides to re-visit.
Do give 'watch and wait' your full consideration and please think long and hard before making your ultimate decision to have iminent treatment...you may never require it!
Regards
Derek
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Further re the debate relevant to the perceived accuracy of the delivered radiation doze from CK, my consultant is fully understanding of all of the working and scientific principles but is personally not entirely satisfied that the CK software will automatically re-target the identified area following any inadvertent movement of the head with a 100% guarantee.
Derek, for kicks and giggles for the discussion.... .based on your notation above..... I had heard that the robotics would realign if there was slight head movement... I have noted this on the CK board and here..... one day during treatment, I wanted to test it out. I had a very minimal space to attempt to move my head.... so, I did. The robot stopped dead in its tracks, realigned and "zapped"..... so, I did it again..... again, it stopped dead in its track, realigned... and then zapped. I had heard about it, wanted to see if it was legit... and yes, it happened. I noted it to the CK Tech team after, they grinned and not said a word.
Phyl
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The bottom line with this debate is the fundamerntal aspect that it is incumbent upon the individual to undertake maximum research and ultimately select a neurosurgeon in whom they have complete trust and a treatment option of their own choosing which they are comfortable with and which they are totally confident about.
Derek -
I wanted to thank you for starting this subject; it's taught me a lot about both GK and CK. As someone who was offered the choice of surgery or GK, and chose surgery, I'd never heard of CK until I found this forum; so I've been reading the comments with great interest. It's been very educational for me and I'm certain it will be very helpful for those newbies trying to decide on treatment as well as those who are watching & waiting.
IMO, your quote (above) sums it all up - and it's so true for those who choose surgery also.
And, Phyl - as far as "toying" with the CK robot, all I can say is "troublemaker" LOL
I'm positive I would have done the same thing ;)
Jan
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(quote) Derek, for kicks and giggles for the discussion....etc... The robot stopped dead in its tracks, realigned and "zapped"..... so, I did it again..... again, it stopped dead in its track, realigned... and then zapped. etc...
Phyl (unquote)
Phyl...
Good grief girl... you like living life in the 'fast lane'...that must be on a par with bunjie jumping without a chord attached! Just to clarify the point though Phyl, whilst my neuro' does not dispute the fact that the CK robotic arm will stop and re-align as per the program, his concern is that there is no 100% guarantee that it will re-align exactly onto the target area which is also his concern with the fractionated procedure.
Jan...
Thanks for your positive comments and good to see that you are doing well as you approach your 1st anniversary post op.
Regards
Derek
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Do give 'watch and wait' your full consideration and please think long and hard before making your ultimate decision to have imminent treatment...you may never require it!
Derek, that is the most valuable point to come out of this GK/CK discussion. Option 3, if you will, seems to get lost in many of the discussions of treatment options on this forum. Your case is a great example of why it make sense to consider it, and how well it can work out.
Steve
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Good morning everyone! 8)
So many good points. I do agree that watch and wait should be seriously considered. My doctor put it squarely on my list of considerations. At first it was high on my list, but with my hearing function decreasing and balance worsening to the point I am running into walls, and occasional lip twitches, I decided my body was telling me something. When I go against my instinct I almost always seriously regret it. Every treatment has its risks and benefits. So does watch and wait. However, I would assume a high number of small tumors could safely be in the watch and wait mode. My Drs now seeing my changes in testing, agree treatment for me is advisable.
I do believe it is important for all of us to do our homework and research, including getting second, third and maybe fourth AN expert Dr. opinions. it has helped me immensely. Then each individual has to assess their research, personality, symptoms and Dr.s advice to make the decision they feel most comfortable with. There are side effects and complications of all options, even watch and wait, since there are no 100% guarantee with any of them. I feel you need to know which will make you feel you did your best choosing an option and it will be easier to accept the possible problems that can arise from that decision. Definitely have a Dr you trust.
I still haven't chosen between CK and GK but I am REALLY appreciating this informative dialog. It gives me a lot to think about and being a research oriented person anyway, I guess I should consider this a hay day! I hope to have all questions in hand when I meet with the radiosurgeon May 5th.
Dizzy Dame,
Mary
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..... one day during treatment, I wanted to test it out. I had a very minimal space to attempt to move my head.... so, I did. The robot stopped dead in its tracks, realigned and "zapped"..... so, I did it again..... again, it stopped dead in its track, realigned... and then zapped. I had heard about it, wanted to see if it was legit... and yes, it happened.
Wow, Phyl, you are, ummm, brave. It's good to know that the safeguards work though! I was just the opposite, trying to stay absolutely still. They were shooting at my brain after all!! The mask had me pretty well immobilized, but I even timed my swallowing between zaps just to eliminate that extra movement. Lucky I didn't gag! :D
I felt pretty confident in the CK electronics/image guidance system to align and realign itself. I think they specify sub-millimeter precision, so it should be able to lock onto the target within that range. Comparable to GK from what I understand. Of course there are multiple alignments with a fractionated treatment, but I don't see why any of them would necessarily be any better or worse than the first alignment.
It seems to me that most GK docs just don't like fractionated treatments in general. Quote from IRSA Radiosurgery Practice Guideline for Vestibular Schwannoma:
"There are no compelling radiobiological principles
supporting the use of Stereotactic Radiation Therapy over single session radiosurgery
for achieving an optimal therapeutic response for the
slowly proliferating, late-responding tissue of a
schwannoma."
IRSA (aka "GK Society") considers the 3-5 day CK treatment to be "Radiation Therapy", since it's not delivered as a single dose. Their statement seems to be at odds with what Stanford, Dr. Medbery, and others are seeing regarding the fractionated CK treatments, and hearing preservation, etc. I don't think either side can really prove its case, since they can't really run randomized trials. Makes it tough for the patient to sort things out when the docs don't agree. From my research, both systems had demonstrated similar outcomes, so it boiled down to patient comfort and CK won out on that front.
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Steve -
glad you picked up on Derek's watch and wait comment. I missed that the last time I checked this subject and it's a very important point. There are lots of patients who decide to watch and wait and it works well for them.
I guess I often overlook this option because it's not something I would have the patience to do. I commend those who can.
Jan
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I had Ck done at Phillycyberknife for an AN 3 weeks ago. In response to the movement of your head and related issues. I was, for some reason, jittery on the 3rd day of treatment. I had the same mask for 6 weeks of radiation treatments of my neck 10 years ago. I knew what to expect but I did move on the 3rd day. When the radiologist came in she said she had to make a few adjustments during the treatment that day which she didn't haveto do before. I told her I knew I wasn't totally still the entire time and thinking I really messed up today (damn). I am totally comfortable in the fact that nothing bad happened. The machine operates based on your skull position period. If you go to the cyberknife forum look under Stoli (2 posts) for my AN size and realted issues. I am just grateful that this system is available and would highly recommend it to anyone. I am 60 and did not want to wait and have other possible bad things happen over night like they did to me from one day being fine to the balance and fuzzy head feelings the next day. I maybe nuts but my balance issues are better and my head feels better. Good Luck to all, keep moving forward it will pass.
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In fairness to my neurosurgeon, who is an eminent and renowned professional and who has produced many research papers on the treatment of cranial based tumours and associated medical problems, his comments relevant to CK are his personal perceptions based upon his research. I am aware that his organisation replaced their previous GK equipment with the GK Model C in recent years and I feel certain that due consideration would have been given to installing the alternative CK at that time including full perusal of the 'manual'!. If my neuro's concerns are solely attributable to a perceived risk to his patients' welfare, however minimal that may be, then I think he is to be applauded for his stance which can only increase patients' confidence that they are in caring and capable hands at such a crucial decision making time.
Derek,
in my initial post I was certainly did not intend to infer anything about your neurosurgeon's professional knowledge , ability and patient focus and would profoundly aplogize if it came off that way. My point was simply that CK is a newer technology and while it is fine to give anything of that nature scrutiny, the question in my mind is whether he has had the opportunity to review the literature, actually see , work with a CK machine and interact with professional colleagues familiar with it. I probably didn't say that well and that is probably another good lesson in why I shouldn't try to multi task when I'm posting as I was that night :-[. If he's gone through those steps and still feels more comfortable with GK, then I think the way in which Dr. Medbery responded was the most appropriate, which was if he isn't confident then he should use what he feels will give his patients the best outcome. At the end of the day, as has been posted many times in the past, both GK and CK are essentially equivalents for the treatment of the AN with the difference being the headframe and ablility to fractionate.
Since your "wait and watch" reports have been so good so far, hopefully you'll never need to be treated anyway which would be the best outcome ;D
Mark
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Derek, for kicks and giggles for the discussion.... .based on your notation above..... I had heard that the robotics would realign if there was slight head movement... I have noted this on the CK board and here..... one day during treatment, I wanted to test it out. I had a very minimal space to attempt to move my head.... so, I did. The robot stopped dead in its tracks, realigned and "zapped"..... so, I did it again..... again, it stopped dead in its track, realigned... and then zapped. I had heard about it, wanted to see if it was legit... and yes, it happened. I noted it to the CK Tech team after, they grinned and not said a word.
Phyl
Phyl, you never told me that! A rather bold thing to have done I would say :o
The CK machine stopped three times during my first day of treatment and I know I didn't move since I was scared "stiff". It was the second generation machine placed at Stanford and I was the 4th person treated with it, so they told me that the problem was there was some nintendo and X-box games programs included and they forgot to delete them out before creating my program. Once they did that everything was fine and I felt OK although I occassionally have an urge to play video games now ;D
mark
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geesh, all! ::) Life is far too short... filled with risks... walking my dog in my pit-bull filled neighborhood, praying she doesn't become an "appetizer" for a local..... for me to go through marriage #2 (trust me, that was a HUGE risk in my book)... heck, I was already having my head zapped (a major risk, in of itself!) and a slight movement during CK to see if what I had heard about was true.... so, I did it! :) I'll blame the happy pill (Ativan) that made me feel like taking the risk...... heck, with ALL of my medical whoas.... I was willing to try it out.... of course, all in the name of science for my fellow AN'ers (pls note, I don't recommend you all try it if you have it done, but, for me, I did).
thanks for keeping the discussion respectable all! Great job!
TGIF!
Phyl
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In fairness to my neurosurgeon, who is an eminent and renowned professional and who has produced many research papers on the treatment of cranial based tumours and associated medical problems, his comments relevant to CK are his personal perceptions based upon his research. I am aware that his organisation replaced their previous GK equipment with the GK Model C in recent years and I feel certain that due consideration would have been given to installing the alternative CK at that time including full perusal of the 'manual'!. If my neuro's concerns are solely attributable to a perceived risk to his patients' welfare, however minimal that may be, then I think he is to be applauded for his stance which can only increase patients' confidence that they are in caring and capable hands at such a crucial decision making time.
Derek,
in my initial post I was certainly did not intend to infer anything about your neurosurgeon's professional knowledge , ability and patient focus and would profoundly aplogize if it came off that way. My point was simply that CK is a newer technology and while it is fine to give anything of that nature scrutiny, the question in my mind is whether he has had the opportunity to review the literature, actually see , work with a CK machine and interact with professional colleagues familiar with it. I probably didn't say that well and that is probably another good lesson in why I shouldn't try to multi task when I'm posting as I was that night :-[. If he's gone through those steps and still feels more comfortable with GK, then I think the way in which Dr. Medbery responded was the most appropriate, which was if he isn't confident then he should use what he feels will give his patients the best outcome. At the end of the day, as has been posted many times in the past, both GK and CK are essentially equivalents for the treatment of the AN with the difference being the headframe and ablility to fractionate.
Since your "wait and watch" reports have been so good so far, hopefully you'll never need to be treated anyway which would be the best outcome ;D
Mark
Mark...
The content of your post was, as always, totally inoffensive. It is in all of our interests to make ourselves fully aware of what the experts are currently thinking and to be able to fully and freely debate the relevant issues accordingly. With regard to my decision to 'watch and wait' it is my ambition to carry on in that routine for as long as is safely possible whilst always acting upon the advice of my consultant and subject to the results of my annual MRI scans thereby hopefully proving that there is an element of truth in the often held suggestion / myth that the growth rate of acoustic neuromas diminishes or stops with age.
Mary...
I note that you were diagnosed only within the past month and that you have virtually decided on early treatment intervention based primarily on your present symptoms of diminshed hearing; imbalance problems; occasional twitching etc. Please exercise an element of caution in your decision making process as I too had exactly the same symptoms upon diagnosis including constant moderate tinnitus. Unfortunately my hearing loss very rapidly became total on the affected side albeit nature has now compensated that aspect and it now causes me no problems whatsoever. However, the imbalance / twitching / tinnitus problems abated of their own accord within a few months and I am thankful that I did not rush into an unneccessary early treatment option. Yet more info for your consideration to add to your ever increasing list!
Regards
Derek
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Hi Derek, :)
Good point. Watch and Wait is very viable and it has worked well for you as well as many others. I think people definitely should remember that.
My chosen AN doctor at BNI first had that choice high on the list for me as I did. No one should prefer treatment when not necessary. Because I thought I had other problems, a year ago, I had seen an audiologist. Everything was fine except plugged ear feeling. I thought I had the symtoms because of the sinus infection. Suddenly in December I started getting dizzy, I am learning to deal with it through exercises, but my hearing was suddenly worsening.
I would like to try to save what I have. Also with the new twitches, it concerns me. After seeing last year results versus this year's, balance test results, and symptoms the situation was reassessed and it was agreed that treatment should be higher on my list. Two of the AN physicians who suggested I not wait (one was out of the country and one out of state) KNEW I would not be treated by them, and they both treated with microsurgery as well as GK and CK radiosurgeries. Also, my family is really supportive and relieved I made that choice having seen my go downhill fast. My husband, a scientific guy, has gone to all appointments, but didn't try to sway me by withholding his point of view until after I decided (which was frustrating for me at the time ;)) One specialist did want me to have microsurgery immediately. Guess what, that is all he does. Another microsurgeon here said I shouldn't do microsurgery, but radiosurgery instead. He sent business away from himself and knew I had an appointment with a radiosurgeon. I was very impressed.
I guess it seems like a fast decision to an outsider, but I am a research type, have contacted with 5 AN doctors and meet a sixth one on May 5th. He is the one who does both CK and GK so I will be really curious how he interprets all my various testings. I now have had 4 hearing tests within a year and a 5th one scheduled on May 3rd. If hearing is functionally gone, anyway and twitches subside with balance improvement, before I am treated, I will have no qualms about cancelling any future treatment.
I do have to say it means a lot to me, for you to reach out like you have. You have such a valid point and I appreciate you sharing it. Others would be wise to listen to your viewpoint. I also believe I have to listen to my gut, know myself and my personality. All choices have serious risks, so choices have to be made by the facts, what each person feels comfortable with, especially if they do end up suffering serious side effects. My personality is such that I would rather suffer side effects from addressing this aggressively (but not as aggressively as Phyl :D. I am going to be really still no matter what treatment). I am an artist so I am not a very conservative type. I will have to deal with side effects, if I suffer them, by saying I made the choice I thought was best at the time and not look back, realizing any choice could end up with the same results.
Woooo this got long. Sorry. I am so glad I found this site!!!!!!
Take care,
Mary