ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Kathleen5306 on June 30, 2008, 01:41:36 pm
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I will be one of the few that has failed CyberKnife treatment. I was treated with CyberKnife in October of 2002 for an acoustic neuroma measuring 19mm x 9mm x 8mm. Going into the treatment my hearing was within normal limits for both ears and throughout all the testing frequencies. My speech discrimination scores were excellent for both ears. My acoustic neuroma was discovered during an MRI follow up for brain surgery done in 1996 to remove a colloid cyst that was obstructing the flow of cerebral spinal fluid into my right ventricle. I had no symptoms and just knew I had the AN because of my previous health issues. From 1996 until 2002, I monitored the AN and saw it's slow growth.
By 2002, the AN had grown to the 19x9x8 size and I elected to undergo CK treatment at Stanford to preserve my perfect hearing and to preserve my facial nerve. I know that it is much better to get treatment before the symptoms are irreversible. Immediately after the three days of CyberKnife treatment, I experienced complications that required hospitalization. I had extreme dizziness, numbness on the entire right side of my body, headache and difficulty with speech. Extensive testing was done over a one week hospitalization at Stanford and no cause was determined for this reaction. Decadron controlled the symptoms, but we never determined the cause. Within six weeks of the CyberKnife treatment, I experienced severe hearing loss in my right ear with the inability to understand speech at any volume level. Six years later I remain deaf in my right ear with loud tinnitus constantly. Immediately I became one of the rare cases who went from perfect hearing to total deafness.
Over the last few months, the ringing was getting louder and I now began experiencing facial numbness. I returned for an MRI June 19, 2008. It shows that my acoustic neuroma has grown from the original measurement of 19x9x8 to 20x13x14. So, the goal of stopping the tumor growth has not been met, either. I become one of the rare cases that fail on both the hearing preservation front and the tumor growth front. I am now left with the horrible dilema of what to do after this failure? Do I undergo another dose of radiation if it has already failed once? Isn't doing the same thing over and expecting a different result the definition of insanity? How many patients have been treated more than once with CyberKnife? What is their outcome? Also, since I had some kind of a reaction to the radiation that most people do not have, that needs to be considered before a second round is started. How many other patients experience these negative side effects from CyberKnife? How successful are surgical resections once the growth has already been treated with radiation? Since I am already experiencing loss of feeling in the face, will I lose my ability to move my facial muscles? What is the long term outcome if I choose to do nothing?
I am waiting for from my CK team and other doctors to answer all of these questions. In the meantime, I am lost feeling I will undergo brain surgery or treatment for the third time. Talk about a bad case of nerves!
If there is anyone out there that has any experience with this, will you share your experience and your decisions and your outcome?
Kathleen
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Kathleen -
I have absolutely no experience with CK (had retrosigmoid myself) but wanted to say I'm sorry to hear that radiation didn't work for you.
Best of luck in making a treatment decision. I'm hopeful your doctors will be able to point you in the right direction whether that's more radiation or surgery. Please know that we'll be here to support you no matter which direction you head.
Please keep us posted.
Jan
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Thanks, Jan. I am feeling really lost and alone right now and appreciate any and all of the support that comes from this group. Thanks for your kind words.
Kathleen
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Kathleen~
I, too, cannot offer you any words of wisdom since I had a translab, but just wanted you to know that we are here for you to support you in any way that we can.
K
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How many patients have been treated more than once with CyberKnife? What is their outcome?
How many other patients experience these negative side effects from CyberKnife?
How successful are surgical resections once the growth has already been treated with radiation?
Since I am already experiencing loss of feeling in the face, will I lose my ability to move my facial muscles?
What is the long term outcome if I choose to do nothing?
I am sorry to hear about your failed CK treatment. I will take a shot at answering some of your questions as best I can:
A fair number of CK patients go through a bout or two of heavy swelling, with problematic symptoms. However, most recover from those. CK does fail occasionally; the failure rate at Stanford is about 1 out of 100. I can assure you that the doctors there would love to know why it happens - but they don't, at least not yet. The dramatic loss of hearing I don't know, but I don't think that is common either. Maybe your previous condition had something to do with it?
There have been some cases of double treatment with CK. Not a large number, but I think that the cases reported seemed to be successful. I think there are discussions of it on the Cyberknife forum. Having said that, I'm not sure I would pick CK again, given your past experience with it.
Surgery after failed radiation is a lot more successful than some surgeons would have you believe. The risk of facial nerve damage goes up some, due to the additional scar tissue and "stickiness." There was one report where facial nerve issues occurred in about 20% of the cases in the study, which is higher than the normal rate, but still well below half. Since you have already lost the hearing, that won't be an issue.
If the AN continues to grow, you will have to do something sooner or later. If it starts pressing on the brainstem too much, the consequences can get pretty serious. It wouldn't surprise me, though, if one of your doctors suggests waiting 6 months for another MRI, to confirm growth, before deciding on doing surgery.
If you are feeling lost and alone, you have come to the right place. We like hanging out here and discussing all sorts of things, from real AN problems to what color hat you would want if someone were to offer to knit one for you. ;)
Steve
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Steve
First things first...I am most definitely a red hat wearer. Easy to spot on our ski slopes of Colorado!
Thank you so much for taking the time to share your thoughts and knowledge. As we all know, it can be overwhelming to try to sort through the medical options and choices we have to make when diagnosed with an Acoustic Neuroma. It feels even more so when you have to go through it a second time. I have been learning a lot and really, really appreciate the support I have found in this forum. So glad I found my way here. Have a great day.
Kathleen
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Hi, Kathleen:
Welcome to the site and the forum. I regret that a re-growth has driven you here but trust this can be handled successfully. However, you certainly have cause for anxiety. I hope we can help reduce it a bit.
I'm so glad Steve was able to offer you some useful information on CK. Although our membership spans every possible AN treatment, many of us underwent surgery and are relatively clueless on the specifics of the various radiation treatments. I did undergo FSR but had the utmost (and well-founded) confidence in my radiation oncology doctor so I never delved too deep into the minutia of that specific treatment, except that it did not generate any symptoms and was apparently quite effective.
I look forward to reading more posts from you in the future and anticipate that this unhappy AN re-growth situation can be resolved with minimal complications and angst. We'll try to help and stand ready to support you in whatever decisions you make.
Jim
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Jim
I am searching for surgeons to evaluate the removal of my AN. I live in Denver and we don't have an abundance of surgeons who specialize in AN. For CyberKnife I travelled to Stanford to have Dr. Chang. I know he does surgery as well and I am going back to meet with him. Who was your surgeon? Where are they located? How did you decided who was going to operate on you?
Kathleen
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Hi Kathleen--
A poster with the username robynabc is from Denver, and did a lot of research on doctors there a year ago for her son, who had a huge AN. She was on the board under "AN Issues" on June 29. If you're looking into doctors in Denver, you might want to contact her.
Sorry to hear of the relapse. I hope it gets taken care of properly this time.
Mac
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Kathleen~
I'm not sure you want to go the surgery route, but I used Dr. Herman Jenkins in Houston and I believe that he has since moved to Denver. I think "Robyn" used him for her son's AN surgery. If he is still practicing (which I think he is) he is very experienced and wonderful, if not, I would think he (or his office) could help point you in the right direction!
K
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Kathleen,
I am fairly new to this site and can't offer you the needed information as some can on this site. I do offer you my greatest well wishes with your decision on what direction you are to follow for your treatment. I hope you have a very successful treatment. Good luck to you!
Windy
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Kathleen -
I think CaryF is from the Denver area. He might be able to recommend a doctor.
Jan
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Hi Kathleen,
I'm from the Denver Area and am currently under treatment for an AN. My doctors are Robert Feehs (Nuerotologist) with Denver Ear Assoc. & J.P Elliott with the Colorado Brain & Spine Institute. Dr Elloitt is also the chief of Neurosurgery at Swedish Medical Center if recall. I Found both to be very helpful, skiiled, and very compasionate. They do both surgery and GK and pretty much handle the bulk of AN patients in our Tri-State area.
And just a side note that may ease your mind a bit. While doing my research on treatment choice I did drill Dr Elliott pretty hard on the issue of surgery being more difficult after radiation. And he told me that he had worked on tumors that had been radiated before and did not find it any more of a challenge then ones that had not. And that many times a second dose of GK (or CK) was an option.
If I can help in any way please feel free to PM me :)
Cary...
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Kathleen5306:
Please check your PM box. You have a message from me with answers to your questions.
Jim
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I just re-read this old thread and am amazed by the acceptance and support that was given as I was feeling overwhelmed with facing AN treatment for the second time. That seems like such a long time ago, and it was only 3 weeks ago. I keep saying it because I mean it so sincerely....Thank you.
Kathleen
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Kathleen -
from my many days on the forum, I've found that this whole support thing is very circular. We support you, you go on to support others, and like that shampoo commercial used to say "and so on and so forth" (or was it "and so on and so on"?). Oh well, you know what I mean. It just keeps going around and around :D
It's a fabulous place, isn't it?
Jan
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Jan
I know what you mean. It just keeps going around and around in a wonderful way. Hey, I want to post a photo of me to feel even more connected with this group and the group with me. How do I do it?
Kathleen
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Same here as far as the photo. Jim is good with these questions. Kathleen, I am from your neck of the woods, and we have sent PM. Hope you had a nice vacation. Please keep in touch. Nancy (from Centennial)
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Posting a photo for your profile is a little different than posting a photo in general (within a post) - personally I think profile photos are a little trickier.
I searched the forum and here is a link that explains how to post a profile photo http://anausa.org/forum/index.php?topic=6426.msg62036#msg62036
I personally use photobucket (it's free and easy to use).
If you need instructions on how to post a photo in a post, let me know and I'll PM you the instructions.
Good luck,
Jan
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Kathleen,
I just sent you a PM, but then I read this thread, and my heart just goes out to you - what with your experience with CK and now facing surgery. From what I've read, it sounds like you can't go wrong with your decision to go to HEI. We are all pulling for you!!!
Also thanks, Jan, for the photo instructions. Some day when I get a minute, maybe I will try to post one. I haven't even figured out yet how to add that cool signature at the bottom that you all have!
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I know that I love using my SSD excuse with my husband....Oh, sorry, I didn't hear you ask me to do that! There are advantages. I always look for the silver lining.
Kathleen
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I haven't even figured out yet how to add that cool signature at the bottom that you all have!
Colorado -
that's an easy one.
Click on the "Profile" button. On the left side of the screen go to "Modify Profile" and select "Forum Profile Information". Go down to the "Signature" area and type in your information, then click on "Change Profile".
Jan
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Thanks, Jan. That was easy!
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Yea!
Hope you try the profile photo next. It's always nice to put a face with a name :)
Jan
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Kathleen, when this was initially posted here, I was on a moderating/site hiatus... checking in from time to time. I've been trying to play catch up with all that is going on and things I may have missed. I saw a post or 2 from you in my quick perusing of the site... and since then, honestly, have been at a loss for words. I truly am at a loss at what to say. Many of us (yourself included, I'm sure) have very high hopes in our treatment selections... including CK. Many of us that have had CK (a while back to very recently) have endured (or not) issues post treatment. I know of you to be the 2nd person on this site that is was not what was hoped.
In preparing for your surgery at HEI (and we know that they rank as one of the best around for AN surgical treatments), I want to extend my wellness wishes to you. I know you are in fab hands there (not sure who on their team is doing the surgery or I may have missed it noted in another thread somewhere....). Will be sending the wellness wishes and my dog's (Beanie the Pug) infamous "healing toots"... (many around here that have been on the forums for a while know... her "toots" heal all that ails since they distract you from what ails you!)...... :)
Thank you for sharing this with us. I cannot answer your questions as I hoped (I don't know of anyone re-CK'd but like you, know it can be redone...). My wellness wishes come to you from me... let's get this resolved!
Healing huggles.. and yes, a pic would be great! :)
Phyl
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Kathleen
Hello Kathleen,
So you had CK back in 2002 and no follow up MRI's until 2008 ?