ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Nancy Drew on June 22, 2008, 02:40:11 pm
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I need some positive stories here. Did any of you maintain your pre-AN hearing after Cyberknife Surgery? I have mild hearing loss, and I am hoping my hearing will not get worse if I have CK. Thanks. Nancy
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You might want to take a look at this fairly recent topic, titled "Has anyone retained their hearing after Cyberknife or Gamma Knife treatment?"
http://anausa.org/forum/index.php?topic=6227.0
My hearing is essentially the same as at the time of diagnosis, with a little more decline in the low end.
Steve
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Unchanged hearing 7 years out from CK treatment
Mark
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Nancy,
I believe you know how my CK turned out, but quick refresher. (sig line below also tells the story)
1cm left AN
5 days/dose CK, total 30Gy just over 2 yrs ago.
As of Feb 2008, hearing test confirms my hearing is 100% of what it was at time of CK (I have approx 80-85% hearing with over 92% voice recognition) as well as MRI films show slight shrinkage in AN size.... dr's are 85% confirmed its dead (never truly knows unless we see enhanced growth or I let them cut to get it out).
Hope that helps.
Phyl
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Nancy,
Ok, depends on one's definition of positive, I guess. In my case, my story is very positive, for me. But if hearing preservation at pre-treatment levels is the criteria, then I don't come into that category. Lost a little bit. Still makes my CK experience a very positive one. Hope this makes sense. I would say if you have mild hearing loss, and you might lose some more, you'll still have a good hearing level. I have none on my AN, either before or after.
Ciao, Lorenzo
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It is good to hear the positive stories. From what I am concluding, a lot of positive GK and CK results come from doctors and facilities that are well established. I am sure it is also just luck of the draw in cases of all types of treatment whatever they may be. In researching on the internet it seems that all of the treatments available for treating ANs can advocate for their way and discount the other types of treatments. I think this is what is making me so confused. My doctor, who does surgery and GK, has given me info on GK (he doesn't think I am a canidate for surgery) that just seems so positive mainly because there is more long term research to go on than CK. But, then I turn around and think that maybe CK will one day down the road have enough long term research that I would go "darn, wish I would have done CK instead". Steve and all of the rest of you who did CK, did you go to doctors who only do CK and doctors as well who do only GK. If you did go to both, how did you make your decision? I am sure all of you did the research, but in the end did it come down to what the doctor said. Are there doctors out there who do both GK and CK? Did a doctor do a better sales job that made you go with CK instead of GK? Sometimes I think I am trying to make GK work because it is easily available, I like the doctor, and I guess I just don't want to have one more treatment option to confuse me. I am all mixed up. Nancy
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Nancy
to help answer your question... and I believe this to one of the many reasons for CK... by "fractionating" a radio-treatment, it is suppose to help with hearing preservation. As you saw in my earlier post, I have much of my hearing. My goal was to try to save as much as I could. There are stats that show that by fractionating radio-treatment, there is suppose to be a higher % of hearing preservation (as you already noted, "individual results may vary"....). My understanding in speaking to many (MaryBKAZ and others), that for those that choose 1 dose radio-treatment, they tend to have a lower % of serviceable hearing, thus, they choose 1 dose (regardless if GK or single dose CK, as in MaryBKAZ's case). For me, I choose fractionated CK due to the higher % of hearing preservation noted in order to try to save mine. In my case, I have been lucky and they did, indeed, save mine. As you can see, I was treated in Boston. I am very fortunate to have a wonderful medical community here, thus, where I chose was for me, a non-issue. I believe BI has the CK and FSR. I know other facilities locally that offer GK (Dr. Noren in Providence, RI... only a 45 min car ride away) as well as Tufts University.... Brigham/Woman's offers Novalis and has a purchase requisiton for a CK. I know Mass General Hosp offers FSR and Proton..... all viable treatment options for AN's.
Hoping others will chime in to elaborate.
BTW, in your GK Stories Only thread, you question if Mark was pre-treatment, etc. (Mark, just trying to help!).... Mark is over 7 yrs post-Cyberknife. Mark is one of only a few that I know that are this far down the road post CK treatment.
Hope this helps.
Phyl
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Yikes, that is a difficult place to be in, confusion! Know it well, we all do.
In my case it was simple. I was offered surgery or surgery or nothing, and I didn't like the attitude of my doctors here, at all. So I started looking around to other countries. Found GK, then found CK. Discovered Stanford had been invented CK and had been using it for a long time with excellent results, were the most experienced and I got very good responses to my questions. (Others didn't reply so frankly and openly) AND, the best thing for me was that Dr Chang also does surgery for ANs, so that gave me confidence. Why I chose one over the other? Well, I felt a lot more comfortable with the notion of NOT having some sharp metal tools in my head. Regardless who was using them! Don't get me wrong, if somebody had told me that surgery was the way for me for whatever reason, then I would have gone that route, no problem. Plus, the results quoted that I read about in various places regarding CK were impressive, so in my simple way of looking at things, I found my way. I FELT COMFORTABLE with that choice, so i went for it. I had to feel right about it, I'll have to live the rest of my life with that choice. GK never appealed to me, just because of the less flexible and stronger hit of radiation, put into my simplistic terms!
Hope this helps. Good luck in making the choice that feels right for you.
Ciao, Lorenzo
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Phyl, I read the GK post first, and I don't think Mark had a sig so didn't know if he had had treatment or not. Then I saw on this post that he did indeed have CK. Glad to hear that he has had such good success. If I understand correctly Phyl and Lorenzo, and please correct me if I am wrong, it sounds like you didn't consult with a GK doctor at all. I am so worried that my doctor is stuck on GK that he has sold me. He is supposed to be good, and I'm buying it. I guess in the end you just have to figure out how far you are willing to go to get to your decision. Hopefully the second opinion next Monday will give me some more clues, but I know this doc also does GK and not CK so I will probably get a biased answer there also. I just need to take a deep breath and know that I am in no hurry at this point. Thanks for sharing your stories each and every one of you. No matter what treatment all of us chose, the most important thing is to remember that we are in this boat together and supporting each other. Nancy
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Nancy,
I couldn't agree with your last statement any better! :-*
I did consult GK... to make a VERY long story short, upon initial diagnosis, I was referred to Dr. Peter Black's office at Brigham/Woman's (he still remains my NS and is following my Chiari). In meeting with his "protege", Dr. Elizabeth Claus, she did her internship in GK while at Yale University. I quizzed her every which way about GK... and asked her about CK. Like you, first she told me that she didn't want to "cut" and to go get it "zapped". Now, B/W offers Novalis. As a courtesy to her, I met with their Novalis team... although an impressive team doing great work in breast cancer, I didn't feel (nor did Dr. Claus) feel it was for me and my situation. I met with the CK team at Beth Israel... and I quizzed them every which way (trust me, they still duck for cover when I show up for follow ups!). I quizzed Dr. Claus about the GK. Ultimately, I made my own decision based on my homework.
funny, when I see Dr. Claus now... even over 2 yrs post CK... she is showing how impressed she is with my CK treatment... and .... I got a small birdie at B/W that they have a purchase req for CK now. BI has the first in New England... B/W will have the 2nd.
Hope that helps.
Phyl
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You are a smart cookie Phyl to ask and quiz and ask and quiz and get to a point where you felt like CK was for you no matter what the talk was from other doctors. Not to go into detail, but I had another medical problem that I researched like crazy and couldn't find hardly any positive info on the internet to guide me. My doctor told me that this procedure he wanted to do would cure my problem. He had only done it on four other people with my same exact symptoms, and every case was successful. I went to a couple of other doctors who said what he wanted to do was just crazy, and they told me not to do it, but then they couldn't come up with an idea of what I should do instead even when I asked. I was so desperate that I went with my doctor's "crazy cure" anyway, and he was right. I was his 5th success story. Bless his heart. You just have to go with your gut I guess even when you are getting all of these opinions. And, you have to know that whatever you do there is a chance that it might not work out. One of those doctors I went to who said "no" to the "crazy cure" was giving me a consultation for a different problem (for which he got right, by the way) couldn't believe my doctor's "crazy cure" worked. He just kind of ignored it and went on with the other problem at hand. I give them both praise. Doctors are human, and I think they can only do so much. There is a lot of research for them to wade though also. Nancy
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Doctors are human, and I think they can only do so much. There is a lot of research for them to wade though also.
Very true, and often forgotten. Unlike us, they are not typically obsessed with ANs, either. :)
I want to add a few quick comments on GK vs CK.
I consider the clinical results of GK to apply to CK, especially regarding control of growth. Although it is different machine, the principle of applying focused radiation to a tumor is the same. Dividing the dose over 3-5 days does not change the fact that a week after treatment, both CK and GK patients are in the same boat, with an AN that has been blasted with some radiation.
I consulted with a radiation oncologist at the Gammaknife Center here in Portland, before contacting Dr. Chang at Stanford about CK. If the CK deal had not worked out for some reason, I would have been content to get GK; I was just happier to get CK instead. Like Lorenzo and others, I was impressed by Dr. Chang's willingness to communicate about the treatment by email - on weekends, in some cases.
Dr. Medbery often says on the CK forum that they have both GK and CK, and usually use CK on ANs. If there is no hearing to preserve, then it is a toss up; either one will control the tumor well. There are not many places that have both machines, they are a little spendy for that. The trend over time will probably be to CK, because it can treat a wider range of other tumors as well.
Steve
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FWIW, Nancy Drew, I am in total agreement with both Steve and Lorenzo and chose CK for the same reasons they cited. Many of your posts, Nancy, seem focused on finding the best way to preserve your hearing. I totally share your concern. It is a primary concern of mine, and one which ultimately led me to decide that CK was best for me. So please don't cut yourself short. Take the time to make the decision that is right for you, and don't let any doctor or anyone else pressure you into making a decision one way or the other and sooner than you wish. The decision you make might have lifelong effect on your hearing, so if that's important to you, do yourself a big favor and research the heck out of it until you come to the place where you are certain what you want to do. That day will come, rest assured.
One other point, once you decide on the best type of treatment for you personally, I would advise that you find the doctor who is the MOST EXPERIENCED giving that type of treatment. This is what led me to Dr. Chang. He has done hundreds of CK treatments. Most doctors can only cite having done several a year. If I remember correctly, Dr. Chang did about 125 CK treatments on ANs in 2007 alone! No matter what the profession is, practice makes perfect. On top of that, I get the feeling that Dr. Chang is totally dedicated to his patients. I emailed him for the first time on New Year's Eve and got a reply from him within 2 hours. On New Years Eve! How many doctors would do that?
My two cents... :)
Best wishes,
Tumbleweed
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I am liking this Dr. Chang. He is everywhere on this forum so he must be the best. I think my biggest fear is that I'll get all hyped up about getting CK, and then I will have an insurance problem. I have fairly decent insurance as long as you do what they want you to do. I just made an appeal for a simple medication matter (which would have been in both of our favor), and they took weeks before giving me an answer that wasn't really an answer at all. It was stupid. Long story that I won't bore you with. Someone sent me a copy of their appeal letter to an insurance company so he could get CK at Stanford. Seems like he had to go through a lot to get his way because his facility had just gotten a new GK, and they did not have a CK in network. Maybe it is stupid to think about the whole insurance thing before I have even tried. But, I still have a lot of talking to do with my doctor. I am going for the second opinion next Monday, and I will be armed with lots of questions for him and one to take back to my AN doctor as well. So, I am just kind of riding the wave for now. I guess it will come together eventually. Thanks for everyone's input. Nancy
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Nancy, just in case you didn't see it, the latest issue of the ANA newsletter I received has an article about GK vs Ck and hearing preservation. Not sure if it's online, but maybe there's a link to it on the main ANA home page. CK comes out better.
Dr Chang is incredible in the way he responds and looks after his patiennts! I had a running e-mail exchange with him when I was investigating the whole CK possibility, and even with the 8 hours time difference, I still got answers very quickly! I wonder does he ever stop!!! Oh he's dedicated alright! I am sure so are others, but for me, seen that I had the choice of going where I wanted (no insurance would cover me anyway) I might as well go to the ones that had the most experience.
About experience. Somebody (and I can't remember who) told me once that experience, when it comes to rads, is important but not as vital as it is with surgery. Still, I felt more comfortable with my team. Of all the one's I looked into they impressed me!
and hey, I got a holiday in CA along with treatment, and excuses to go back there on a regular basis!!! How good is that! :)
Ciao, Lorenzo
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Not saying you have to go to Stanford to get great CK treatment, but Dr. Chang is top notch and the team there is pretty effective at getting any insurance hassles solved from what I've seen, if you want to go there
mark
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I second Mark's opinion of Stanford's expediency and helpfulness with insurance matters. Scarlett (at Stanford) has been a dream come true, virtually getting all pre-authorizations from my insurance company handled within days.
That said, I recommend you follow up with your insurance company and insurance network (if you're on a preferred-provider plan) after your chosen medical facility gets all the insurance matters taken care of. That's because, through no fault of Stanford, I found my insurance company didn't get everything right. First, although I talked with three different people in the insurance network (First Health), none of them could locate Dr. Chang (meaning none could determine that he was in-network) -- this even though Dr. Chang is included in Stanford's group contract and has exactly the same tax id# as Stanford's (which facility First Health *could* locate/determine as being in-network)! First Health went through a software upgrade last year after being bought out by Coventry Health, and their records have been full of holes ever since. Some of their staff are very dysfunctional and under-trained, making matters worse.
Another problem I uncovered is that one of the "CPT codes" (insurance codes that identify medical procedures or tests) that was supposedly pre-authorized in my case was omitted by First Health in their pre-certification records -- when I called, they had no record of it having been pre-authorized. I have since called Stanford to ask them to kindly request that CPT code be added to the list of pre-authorized procedures for my care (in other words, tell First Health they screwed up and need to add that CPT code back to the list of my pre-authorized treatments).
Based on my previous experiences with First Health, I have no doubt that these problems were caused on First Health's end and that Stanford did their best to get everything settled on the first attempt. (Again, I've had many, many problems with First Health giving me wrong or incomplete info in years past; to my recollection, they have never gotten anything right on the first contact. I have had to appeal two decisions of theirs in the past year alone, due to their incompetence, and BTW I won both appeals.) My advice is: get documentation from your insurance company and take nothing for granted! Get it in writing. That way, if they bill you afterwards for something they said was covered, you've got proof that they're wrong.
Best wishes,
Tumbleweed
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Hey Steve,
Who is this Dr. Medbery? Do you know of a place that has both CK and GK machines in the same facility? I would be interested in finding out more info because it would make sense to get the opinion of someone who does both procedures.
Nancy
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Dr. Medbery is one of the doctors who volunteers his time on the Cyberknife patient support to answer patients questions. His facility, St. Anthony in Oklahoma city does have both a GK and CK. Stanford also has GK and CK and virtually any doc currently using a CK either was trained on or previously used a GK in their career.
If you would like to post a question to him the link is
http://www.cyberknifesupport.org/forum/
his bio is:
Clinton A. Medbery, III, M.D.
Clinton A. Medbery, III, M.D.Clinton A. Medbery, III, M.D., FACRO
Medical Director
St. Anthony Hospital Cyberknife Center
Oklahoma City, Oklahoma
Email: buddy@swrads.org
Patient appointments:
Phone: (405) 272-7311
Fax: (405) 236-3888
Dr. Medbery is board certified in both medical oncology and radiation oncology. He specializes in radiosurgery of both intracranial and body cancers and benign tumors. Research interests include the use of the Cyberknife as a non-invasive and rapid treatment of prostate cancer and lung cancer. He also is an expert in the radiosurgical treatment of metastatic disease in the brain, with an experience of several hundred treated cases.
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Thanks Mark,
That is very good information that you have given me, and I didn't realize that Stanford had both GK and CK. Do you know if Dr. Chang uses GK to treat ANs? Surely the GK is used for something or why would it be sitting there (unless it is a comfortable couch for nap breaks!). Also nice to know about Dr. Medbery and the Oklahoma City facility. My son is stationed at Tinker AFB in Oklahoma City so that might be a good reason to take a visit over there! I am sort of overwhelmed at this point with the research. One minute I am going one way, and the next minute I am going the other way. I still have time. However, I am thinking about working my way out of the W & W and into GK or CK. I am reading a lot of research that says hearing preservation is better if you get treatment when the tumor is small. I am 49, and I have a feeling that the AN will continue to keep growing. Perhaps I'll get another MRI at the six month mark instead of the one year and go from there. Of course, I did lose some hearing along the way, and I want to keep a check on that also. I thought I had lost some hearing this past year, but I kept convincing myself it was just because I was getting older. I definitely need to be more aware of changes in hearing. Thanks for your help.
Nancy
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Nancy,
I'm not sure how active the GK at Stanford still is in general, but I'm fairly confident in saying that Dr. Chang and others there use CK for ANs pretty much exclusively. If hearing can be saved, then 3 fractions with CK has better odds than GK and if there is no hearing to save and a one dose is indicated, then CK is more comfortable than the halo.
Mark
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Dr. Chang didn't even mention the possibility of GK for me when he consulted me. His recommendation was CK from the get-go. Maybe that had something to do with my case in particular, but clearly they were biased in favor of CK over GK. FWIW.
Tumbleweed
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I don't want to put any doctor down. My doctor is an honor student from Standford, and I am sure he is competent. Don't know if he has been trained on GK and CK. A question to ask him. But, I am sure he is more biased about GK because that is all he has at his facility. I would sure be interested to see why the GK is at the Stanford facility. Maybe I will ask Dr. Chang that question. Just don't understand why Stanford would have both since both are expensive. What in the heck are they doing with both. Confuses me very much. I am sure Dr. Chang is a very competent and personable doctor. There are a lot of doctors out there like that. I am going to check the heck out of my doctor before I let him get a hold of my brain! Sounds like all of you checked out Dr. Chang pretty well before going with him. However, Standford is one on the top univerities in the US, and that carries clout and makes sense that they have some of the best doctors. I think it is very important to feel comfortable with the doctor you see. Of course, there are some doctors who have no bedside manner, and they are the best in their field. Thanks for your opinions. If I go with GK and have success, I hope that I would post here with my positive story. But, I also know that I might just go my merry way. However, I think it would be important like all of you who post such positive reports about CK if I would post positive stories about GK if that should be the case. I am sure I would post here if I had a negative story. There are some positive GK stories here as well. Decisions, decisions. Nancy
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Nancy,
I wouldn't get too concerned about why Stanford , or any large teaching medical center, has multiple machines. While most hospitals , especially community based ones are struggling financially and don't have the capital invesment capacity or the organizational "mission" to stay on the cutting edge of technology, Stanford does. The GK is an older technology and was probably put in a number of years ago. CK is newer, was invented by a doc there, and has more versatility ( full body tumor treatment) so that explains some of it. There was an investment in the GK and they probably still use it for some types of treatment, but is being phased out. There are significantly more CK installs than GK worldwide as facilities depreciate their GKs and upgrade to CK for increased revenue flow given the new treatment potential. Bottom line it is more about financial and investment issues than machine effectiveness in treatment for an AN which I outlined in an earlier response.
An interesting contrast is the Univ of Pittsburgh which also has a CK and GK, but there they use the GK solely for intercranial treatments such as AN and the CK for all other body tumors conducive to a radiosurgery treatment. Why? is it a diiference in the machines? Not at all, Pitt was one of the first to use the GK in the US back in the 80's. They have a long and financially based relationship with the GK manufacturer , elektra which creates an "influence" on some of their docs not using CK where GK could work. Doesn't mean there is anything wrong with that other than to simply recognize it is what it is and doesn't address machine capabilities.
Mark
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Thanks Mark for your reply. You do seem to be more objective that I may have given you credit. I just wrote a post awhile ago, and I am sure I am going to get some slams for it. GK is available to me at what I think is a reputable facility with good doctors. I am still doing research though. I might change my mind and have CK. Just too much info out there to absorb, and I am depleted at this point. I am glad they have the CK machine because it now offers more options for those who have tumors in places that the GK can't treat. I was hoping to W & W (and I still can, I guess since my AN is small) longer because I know there is more and more research coming out every day. My husband is an engineer, and he said the new TVs at the stores are already outdated as they hit the floor. New technology is amazing. But, when you consider you are treating the brain, it can't be taken likely. I still think that it is the luck of the draw in many more cases than we are being told. Research is rampant. I am a social worker, and I try to keep up with the latest research, and I still think some of the old stuff from 20 years ago is just as effective or even more so than what we hear about now. And, look at the vehicle they put on the moon. And, look how far things have come technoloty wise since then, but they still made it to the moon using their slide rules and ancient computers! Thanks for your comments.
Nancy
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indeed, and we don't know what they will have five, ten, twenty years down the road. We can only deal with what we have now, regardless of what might come around the corner. Rightly, who's to say that it will be better, worth waiting for? Luck of the draw? More like our own individual circumstances in terms of the AN, and those will have as much influence on the way you will get out on the other side after treatment, as much as the treatment itself. Remember, one never hears nor reads the positive stories of surgery, or Gk or Ck. Most of the people are not here, because they don't have to. Their circumstances were such that they didn't need to be here, or didn't want to. Luck? No luck? Whatever. But one thing makes us all the same, we have no control of who things will work out in terms of recovery.
I'm rambling, sorry.
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Ramble all you want Lorenzo. Isn't that why we are here. Just think we have to be sensitive to those who are searching and perhaps gentle guidance is what we need the most. I think for the most part that is what we get. If I have GK and it works out for me, I hope I have sense enough to come back and tell my story in an appropriate way. If I say it is the only way to go, then I should be thrown off this site. If I have a negative experience, then I hope I also have sense enough to come back and tell my story in an appropriate way. If I say it is not the way to go, then I should be thrown off this site also.
Nancy
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Nancy,
I keep coming back to this site because of the support and friendship I have made. I have learned so much from reading other's stories. You are lucky to be a true watch and wait. Your tumour is small. Mine was debulked two years ago and I am going to need a nerve graft in the near future. This forum has been a life line for me. I laugh, I cry, I cheer, I pray and I am grateful to be apart of this wonderful community. Nancy the glass is half full. This is not a death sentence. Some people like Jan recover with little or no problems. Some people like Capt Deb end up with horrible headaches myself included, but we are alive and we support each other.
Lorenzo my dear friend, you can ramble all you want. I for one enjoy your thoughtful rambles! :-* Thanks for the TLC today ::) I needed it!! See Nancy that's a friendship that I made. I live in Canada and Lorenzo lives in Ireland.
Anne Marie
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Nancy, nobody is going to throw you off the site for expressing an opinion, however entrenched it may or may not be. There will always be somebody to counter balance an opinion. Be it in a gentle or equally entrenched way. I certainly hope you will come back and tell your story once you had your treatment. It will make this forum that much more effective.
Thanks Anne Marie :)
Ciao, Lorenzo
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The GK is an older technology and was probably put in a number of years ago. CK is newer, was invented by a doc there, and has more versatility ( full body tumor treatment)...
Man, am I ever glad I don't have a full-body tumor! ;) It's bad enough that I have one in my head! To have one that occupies the entire body would be really tough. That really puts things in a more positive perspective for me. I don't feel quite so unlucky anymore. ;D
Tongue in cheek,
Tumbleweed
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Nancy,
I don't know if it is my imagination, but I feel like I am hearing better after CK. I a sure it is no worse. I also think Annette is doing as well as she was before CK with her hearing.
Take care,
Mary
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Hi,
I am definitely getting the positive cyberknife stories here that I asked for. All of these are good to hear. I am thinking I sould turn it around as well and ask for Negative Cyberknife stories only. The same with gamma knife. Maybe I'll do that just now and see what I come up with. I need to hear the good and the bad, the pros and the cons, etc. Thanks for sharing.
Nancy
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I think my CK story is quite positive, but it is probably too early to say that definitively, since I am not quite 1 year out of treatment.
I have a 2.5 cm tumor, which is on the larger side for radiation. My hearing has been preserved. I have dealt with intermittent post-treatment symptoms, such as balance issues, which I describe in more detail in my website below (see the post-treatment section). I am sure the symptoms relate to post-treatment swelling and will recede with time.
As to the GK/CK debate, I agree with Steve that they are essentially the same in terms of tumor control, but CK is less likely to damage the surrounding nerves and therefore preserve your hearing. If you have some hearing you want to preserve, CK is probably worth looking in O
n the insurance front, I was in an HMO where GK was available in "network" but CK was not. During the appeals process (which Stanford handled for me), I submitted a personal letter arguing that the difference in hearing preservation results made CK "medically necessary" in my case. The appeal was successful and the HMO was forced to cover the treatment.
Good luck and be well,
Francesco
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Francesco,
I have read your website many times and have been referred to it by so many on this board. You are truly amazing, and I admire the fact that you did your research and in the end felt good about the decision you made to have CK. You are an inspiration to us all. I know that you have been through the wringer, but nevertheless you have been hanging in there with the utmost strength. Hopefully I am on my way to getting where I need to be as far as what I want to do with my AN. Best wishes as you continue your journey.
Nancy
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Nancy
Had ck and have never regreted it. I am completly "back to normal" if anyone ever is! lol........ I actially had a apt today and I am alittle over 1 year out and AN is showing some shrinkage and no signs of life, or as the dr says, the cells arent reproducing. Going back in 1 year :) GL to you....... btw, I was terribly afraid of the headframe in a gamma knife video I found on the web. Convinced myself it was my form of treatment until the team suggested ck which had only been in my city for about a year. I felt blessed to have it and it was painless........
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Hi Cyndi,
It is always good to hear success stories. I hope all continues to go well. Did you have any symptoms before CK? I am trying to sort out if I should have treatment now or wait since I don't really have any major symptoms, and my AN is still small and only just now growing (and only slightly). I get different stories from different doctors, and it is all quite confusing. I have another consult set up in early Aug., and then that is it for me. Any more docs and I am going to scream! I think I am probably a good canidate to continue to W & W, but the psychological part associated with the AN has me bent out of shape. I keep flip flopping, and I hope to come to some conclusion soon so I can get on with life. It is not good to be obsessed all of the time. Thanks for your reply.
Nancy
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cyndi, LOVE the sig line... you got my mantra... for me... "day by day, inch by inch...." Continued wellness! :)
xo
Phyl
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I've been waiting several weeks to see if this is just my imagination or a very transient affair, but I can now confidently report that my tinnitus is generally lower in volume and its onset less frequent since I've been treated with CK. What a surprise for me this is, because I haven't heard anyone else report this benefit.
For the last 6 months before treatment, my tinnitus was getting louder, was noticeable much more frequently and was changing a bit -- not only did I hear moderately loud ringing but also more and more often I would alternately hear my pulse whooshing in my affected ear.
Within a few days of being treated, I realized I hadn't been noticing my tinnitus that often. At first, I thought it must be just a random and short-lived decrease. But now 6 weeks post-CK, it is apparently becoming a trend for me. I often don't notice the ringing because it is so low in volume (often barely audible), and I rarely (maybe once every week or two) hear my pulse in my ear anymore. I still occasionally have episodes of increased tinnitus, but they happen less frequently.
I sure hope this trend continues. I know too much to dare to hope that CK will completely or even slightly but impermanently reverse any pre-existing symptoms, but this decrease in tinnitus -- for the time being, at least -- seems to be defying the odds. I'm almost afraid to post this in case it jinxes me and I return to my old, ringin' self! :)
Tumbleweed
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Tumbleweed,
Keeping my fingers crossed for you. Just keep on thinking positive. I think I read somewhere on the board that someone's tinnitus went away. Can't remember what kind of treatment they had, but it sounds plausable that you may have gotten a "perk" from your CK. Maybe someone out there can confirm. Thanks for sharing.
Nancy