ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Nancy Drew on June 07, 2008, 12:16:53 am
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Considering gamma knife. After having radiosurgery do any of you ever doubt that maybe you should have done the surgery instead? Or even had CK instead of GK or GK instead of CK? Or that you should have done the wait and watch a little longer? I guess what is done is done. I am always one of those who constantly doubts myself, and I get hung up on the "what ifs". Making a really big decision just about drives me crazy. However, I didn't have to think twice about marrying my sweet husband of 26 years! Would love to hear what any of you might have to say regarding this subject. I know no one can make my treatment decision for me which is a bummer!!! Thanks. Nancy
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Hi Nancy,
I just sent you a PM but I thought I would be the first to answer you question. If I had it to do over again I would still pick GK. After all my reading, research and the folks I actually got to sit down and talk to, I feel I made the best decision I could. I felt that the least evasive approach was my best 1st line of attack. If for one reason or another I have to revisit this problem then I will do whats needed to kill this little bugger. Even if it means looking into surgery. Everyone is different, with different goals, mine is to keep active & hold on to what hearing I have left. I chose GK over CK because I liked the one session approach, long track record and the fight with my insurance co. about going out of network for CK was going no where.
Cary...
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Nancy~
I have to be honest and say that after getting to know people better on here and their different treatment choices, I would really consider one of the NON-surgical routes. I totally understand wanting it GONE and that size is definitely a factor, but after all the "effects" I have had, for quite a long while now, I think I would look into other things. Of course, they were not even available when I had my surgery and I am just glad that I am alive & kicking today!! :D
K
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We were never given the oppurtunity for any sort of radiation and I wish we had been. We were only told surgery was the way to go for our 16 year old son and it did take us a 1.5 years to decide to do that. I know as a Mother I would have gone the CK route without the worry of brain surgery and the effects it can have when something goes wrong. Which thankfully is very rare indeed. So continue your research and peace will come when you make your decision. Kisses to your forehead :-* 16
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I have always heard that the longer you can wait it out the more time they have to come up with something new and hopefully better. Sorry to hear that other less invasive treatments weren't available or that doctors wouldn't give out info about other options. Sometimes I think doctors tend to go with what they know. Sounds like you are a good mom 16, and I will try to get my husband to kiss my forehead more often. Glad to hear that you are still kicking K. Keep on keeping on. Nancy
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Nancy you are so right about new treatments. Just last week I watched a show put on by our local news regarding brain tumor and cancer break throughs. They show something in clinical trials now where they use scorpion venom and a dye that is only uptaken by the abnormal cells in the brain and it is very exciting to say the least. We are lucky in the Seattle area we have alot of biomedical research facilities and hopefully can benefit in the future from this. I will try to find the link and attach it for you. I may need Steve's help as I just learned how to send a link with my email last week. I am indeed very proud of myself. Shhh don't tell my son as he has known how to do all this since he was in 1st grade and got his first computer.
Forehead kisses always make everything better......don't they? :-* :-* :-* 16
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Scorpion venom? Well, they injected this stuff in my knee for tendonitis, and it's made from the comb of a rooster. It worked. I read that smoking cigarettes keeps one from getting canker sores in the mounth and tanning beds help with depression. Those two I think you can rule out!!! Speaking of depression, do a lot of people get depression in Seattle because of the rainy weather? I have problems with depression, but it helps living in Denver with the over 300 days a year of sunshine. Sorry I've gotten off subject folks. But, I will say that no amount of sun is keeping my depression at bay right now since I found out the AN is growing. But, being here on this forum helps. Thanks. Nancy ;D
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Nancy I just sent you the link for the tumor painting research. Yes it is so depressing not having sunshine and we would love to move to Palm Springs now intead of in 10-12 years.
Don't get depressed that just adds to the stress of an already stressful life changing event like you are going through. Just try to remember that it is a benign tumor that is slow growing and that you can manage through the symptoms that it causes. Do like my son says (he is wise beyond his years) and wake up and think of one thing that you are thankful for and start by smiling and laughing to start the day off. He has helped me with the illness that I am going through and excepting and forgiving what has happened to him. He still has the brain tumor that may be causing blindness slowly, had a massive stroke and has left sided paralysis due to this and is the most positive upbeat person I know. If he can get through all of that then we can to! If you need help with this please PM me and I would be happy to be your one on one support. Hang in there and know that we on this forum do care and want to help you through this. I think you need millions of forehead kisses. :-* 16
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16, It sounds like both you and your son are an inspiration to each other and to everyone else. I always hear you have to deal with the hand that you're dealt which is not always easy to do. I do try to find the positives in each day. Some days I do better than others. I have bipolar disorder that sometimes gets in the way, but I manage it fairly well. You are right about the tumor being benign. That is the positive side of it all I guess. I volunteer on the oncology unit at The Children's Hospital, and I think it was meant for me to volunteer there (just started three months ago) because it helps me appreciate the fact that my tumor is benign and not life threatening. Those kids are so brave. It usually whips me back into shape mentally when I go there. Maybe I should volunteer more days each week. Thanks for the encouragement, and it is nice to get a little mental "tune up" from time to time when I need it. Take care. Nancy
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The peidatric onc unit can give you a love of life that you did not know you had. I applaud you for your volunteering in this unit not everyone is strong enough to do this. I think you have more internal strength than you are aware of, and you are treating bipolar to boot. You are an inspiration yourself and you should be very proud of how you are handling all of this. 3 cheers for Nancy. ;D 16
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Making that final decision is extremely tough. If I had to do it over, I would still chose CK. My first reaction after being diagnosed was surgery. I was in watch and wait until it was obvious it was growing more rapidly than expected. Guess I could have waited longer but my thought process was zap it while it's small and hopefully the side effects will be less. So far so good. It's such an individual decision. It is true that there is something to be said about development of new treatments. This is my favorite website I use to research clinical trials. Although acoustic neuromas aren't listed right now, it may be at some point.
http://www.centerwatch.com/patient/studies/area14.html
http://www.centerwatch.com/patient/studies/area10.html
http://www.centerwatch.com/professional/pro1756.html
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hello Nancy drew,
Like Omg 16, I was not given that choice. I was told I had to do the surgery. Watch and wait would kill me because it was growing and it was put a lot of pressure on my brain and radiation was out of the question. I really don't remember why?
eve
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Good Morning,
Since I just had CK one week ago, this isn't a long term answer, but I feel in my heart that my answer won't change. I am glad I went CK. It is FDA approved, been around 10 years, so has a decent track record, for sure. I had all 4 options, watch & wait, (not an option I liked because of quickly worsening symptoms), three types of microsurgery, most likely middle fossa or translab, then the 2 radiosurgeries, GK and CK.
I am 59 so I am not ancient but not a spring chicken. At my age, surgery seemed extreme for a smaller AN. I thought, would I rather have my brainbooger, "Goldie", dead and in me or dead and out of me. I didn't care, dead is dead. I have seen reports of tumors that grew back either way, so the "cure" seemed the same to me. Big AN centers, with Dr.s who treat hundreds of people from all over the world can do the surgery to remove re-grown tumors, either way. My Radiosurgeon said CK can be done, again. CK has no screws in the head. I only had one treatment, since my hearing was gone. Originally, I was doing the 3 day CK to save my hearing because it has a better track record of doing that. Unfortunately, for me that quickly became a non-issue. :(
When it all comes down to it. These were MY decisions made for ME. I took a look at my life, my age, taking care of elderly mom, frequent RVing, time with "retired" hubby, etc., etc. Then I looked at the confidence I had in my doctors. I looked at the way they gave me all the pluses and minuses. They even sent me to this forum! They wanted me to know and be educated in my decision.
Good luck with your decision. No matter what you decide, we will be here supporting you. What is good for one person, may not be good for the next. Once I knew which way I was going, I felt comfortable with my decision and haven't second-guessed it.
Take care,
Mary
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if I had it to do over again, I would definitely have found this forum first thing!!!! I was also told I had no choice but surgery. The neurosurgeon told me the tumor was too large for radiation. Too large? 1.8 cm is not too large!!! I know this now. My hearing was also perfect and the ENT strongly suggested translab. I think I'm just too trusting in Drs that I didn't second guess.
I would have gone with CK. But, what's done is done and I still have a good quality of life. I'll never be the happy-go-lucky person I was, but I'm still fun!!
Shye
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Mary, Thanks for your input, and I am glad you were able to feel good about your choice to have CK. I flip flop between CK and GK, but I am leaning more toward the GK at this point since the CK here is new, and I don't think they concentrate as much on treating ANs. The GK center here is run by some of the best AN docs in Denver area. They are open to GK and surgery, and they do both procedures. Cary on this site also lives in Denver, and he researched his options very well. His AN was slightly bigger than mine, and he was able to maintain his hearing with GK. His doctor and my doctor consult with each other, and I might go with his doctor only because I hear he has more experience. But, I still go between W & W and GK. Still waitiing for the panel of doctors opinion this week before I get caught up too much in having to decide.
As for you Shye, I am so sorry your doctor didn't tell you about more options available to you. I think sometimes doctors go with what they know best, and it is a shame they don't think outside the box sometimes. However, doctors are human, and I guess you have to take that into consideration when you make a decision about anything. I had to make a decision about a surgery many years ago, and I got opinions from many doctors in town. They all went against my doctor, but in the end I went with what my doctor suggested, and he was right on the money. So, you never know. Best of luck to you as you continue your journey. Thanks everyone for your support and wisdom. Nancy
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Hi Nancy,
I had Gamma Knife and that was the only option for radiosurgery that I had, in my area, at that time. Now there is CK. If I had to do it all over again and had the option of the two, I would have really done more homework and compared them very carefully. I like some of the aspects of CK, in that there is no headframe and other things that I'll try to explain, if I may take a minute here. I had just turned 60 years old when I had to do this junk, so you have to consider that I'm *ahem* more mature (at least in age!) than most of the rest of the group on here. So perhaps that made a difference in how I responded to the treatment. I really didn't have too much trouble with the headframe. My doctors/nurses were pretty good in delivering the necessary ointments, injections, pills to ensure that I was fairly well numbed up, and whacked out, so I pretty much had a good time through the actual procedure. The decadron afterward was not a pleasant experience for me. Not horrible, but not pleasant either. That's because of the insomnia effect that it has on you. It took me about 3 weeks to feel relatively "normal" again. The radiation and the meds really wiped me out and I was very tired. My facial nerve was not happy with being so close to the radiation bombardment and let me know about it those first few weeks. Even though I'm grateful I didn't have to go through microsurgery and the possible side effects from that, I found GK to not be a "cakewalk". Now, one thing we know for certain from this Forum, is that everybody is different and one person's GK experience is not like the next person's. I have the impression that CK is a little bit gentler on the system. But, since I've already had my treatment, this opinion is only my opinion and does not come from in-depth evaluation. However, if given a choice between surgery and radiation, I would do the GK over again in a New York Minute. The facts are that killing a tumor growing inside one's skull can be traumatic, no matter how it's done. There are different levels of trauma, and I think I came away as best as I could, under the circumstances. I certainly wish things were better and I was hoping that some of the symptoms would go away forever and ever, but since I am 2 years post-treatment, what I have is what I have and I'm darn lucky it isn't worse.
Hope this helps.
Sue in Vancouver, WA USA
PS
I was lucky that my doctor is a younger man and was trained in surgery and radiosurgery. Many surgeons, especially older ones, were trained only in microsurgery. That's what they do best and they probably aren't going to send you down the street to the guy who does radiosurgery. This is his business, after all. It's just like an auto dealership saying, Hey, this Ford isn't right for you, but the guy down the street sells Honda's. Go check him out." Yeah, right.
Also, Nancy, my hearing was already down the tubes by the time I got to my treatment. I've lost most of my useable hearing in my left ear. GK didn't save anything for me. Drat the luck!!
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Sue, That is funny that you would bring up the car issue. This is rare! My son was just home for two weeks on leave from the Air Force. I have a friend who sells Fords, and my son went to see him to buy a car, but the Ford just wasn't working for him. So my friend sent him down the street to look at the Toyotas, and my son found what he was looking for. My friend was still able to get my son a pretty good deal through a friend of his. But, you know that is what friends are for (isn't that a song?). And, the same here. We are all becoming friends in some way or the other, and we help fill in the holes that the "professionals" don't always do for us. That's my thought for the day! Nancy ::)
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Hi Nancy, :)
Perhaps the CK machine has a long wait there. They use the CK for so many areas in the body. The GKs only do upper spine (on the new Perfexion GKs) and the head.
I know if you have hearing worth saving, CK gives you a better chance to do so. I think it is something like 45% chance with GK and 65% with CK? I do not remember exactly the statistic, but for me they were worth considering, until my hearing was shot, anyway. If you should decide CK, there may be other areas not too far that have an available CK.
Again, Good luck with whatever your decision is!
Mary 8)
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Mary,
The more and more that I am hearing about the good results of CK, I beginning to feel more open to checking this option out. I am not sure what the limits are on my insurance so I will have to check that out as well. If I have some flexability with my insurance benefits, then it would be worth going out of area to give it a try. I just have a bad feeling about the new CK center they have in Boulder, CO. The commericals on the TV and radio make it seem like taking your care in for repair. I want to feel better about CK before I commit. I will have to investigate if there are other CK centers closer by. Thanks for your input. Nancy
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I had CK and would definitely choose the radiosurgery (either GK or CK) again if given the choice.
I think the CK doctors will tell you GK and CK are equally successful at killing the tumor, but you have a better shot hearing preservation with CK, plus you will not have to endure the headframe. The Stanford team believes that CK is a more accurate machine as well, but I think there is a debate about that among neurosurgeons. I think there have been some advances in how they deliver the radiation with CK (in terms of avoiding damage to the cochlea) that have improved hearing retention rates even more.
In my own research, I came across a couple of medical abstracts on Pubmed.com comparing the post-treatment quality of life of persons who had surgery v. radiation. I just located one of the abstracts. Here it is:
1: Neurosurgery. 2006 Jul;59(1):77-85; discussion 77-85. Links
Patient outcomes after vestibular schwannoma management: a prospective comparison of microsurgical resection and stereotactic radiosurgery.
Pollock BE, Driscoll CL, Foote RL, Link MJ, Gorman DA, Bauch CD, Mandrekar JN, Krecke KN, Johnson CH.
Department of Neurological Surgery, Mayo Clinic College of Medicine, Rochester, Minnesota 55905, USA. pollock.bruce@mayo.edu
OBJECTIVE: The best management for patients with small- to medium-sized vestibular schwannomas (VS) is controversial. METHODS:: A prospective cohort study of 82 patients with unilateral, unoperated VS less than 3 cm undergoing surgical resection (n = 36) or radiosurgery (n = 46). Patients undergoing resection were younger (48.2 yr versus 53.9 yr, P = 0.03). The groups were similar with regard to hearing loss, associated symptoms, and tumor size. The mean follow-up period was 42 months (range, 12-62 mo). RESULTS: Normal facial movement and preservation of serviceable hearing was more frequent in the radiosurgical group at 3 months (P < 0.001), 1 year (P < 0.001), and at the last follow-up examination (P < 0.01) compared with the surgical resection group. Patients undergoing surgical resection had a significant decline in the following subscales of the Health Status Questionnaire 3 months after surgery: physical functioning (P = 0.006), role-physical (P < 0.001), energy/fatigue (P = 0.02), and overall physical component (P = 0.004). Patients in the surgical resection group continued to have a significant decline in the physical functioning (P = 0.04) and bodily pain (P = 0.04) subscales at 1 year and in bodily pain (P = 0.02) at the last follow-up examination. The radiosurgical group had no decline on any component of the Health Status Questionnaire after the procedure. The radiosurgical group had lower mean Dizziness Handicap Inventory scores (16.5 versus 8.4, P = 0.02) at the last follow-up examination. There was no difference in tumor control (100 versus 96%, P = 0.50). CONCLUSION: Early outcomes were better for VS patients undergoing stereotactic radiosurgery compared with surgical resection (Level 2 evidence). Unless long-term follow-up evaluation shows frequent tumor progression at currently used radiation doses, radiosurgery should be considered the best management strategy for the majority of VS patients.
PMID: 16823303 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/16823303?ordinalpos=41&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
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fbarbera,
Thanks for the info and websites. I have pretty much convinced myself that I will be going with the radiosurgery insteady of surgery. Not to be disrespectful to those who have or plan to have surgery. I only have access to local GK info at this time, and I will have to put some time into CK centers somewhere else since there is not one in Denver area. There is one in Boulder, but they don't seem to be pros with ANs. Thanks much for all unput. Nancy
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Insurance, is of course, a great importance. The doctors here said I would have no trouble getting for what ever approach I chose. I don't know if it is a factor of having an insurance that covered it or if they have such a track record, that insurance accepts them, or a little of both.
I live near Phoenix. They do have the AN center I went to at Barrow Neurological Institute. Then there is te one at Stanford. Dr. Chang answered all emails I sent to him directly and thoroughly. Also the Cyberknife support site's Docs are great answering.
Good luck and I don't think I would, regret CK or GK. I did too read the partical below.
Mary
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Nancy, that is funny how I picked a car analogy, and then the exact thing happened to your son! Well, I guess that proves that anything can happen.
Take care,
Sue in Vancouver USA
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Hey Nancy,
Like many, I was opting for microsurgery first..... and as I did my research... and had to factor in my Chiari situation (head placement during surgery is a tough one in trying to remove an AN with a Chiari -- cerebellum/brain stem malformation -- made my decision (for me) a bit easier to decide to go radio (I was leaning that way, anyway, based on my AN treatment research I was doing).
Well, like Sue, I would do (in my case) CK again in a Boston minute... and one reason I did choose it (as previoulsy noted) is that CK can be done again, gawd forbid. Now, after over 2 yrs post treatment and based on my past 4 MRI's and my hearing retention (I had over 80% hearing at time of treatment... and is the same as of today)...... yes, I'd do it again.
You will know in your soul of souls what will be best for you. Both CK and GK are VERY viable, proven treatment options in the world of AN treatments. In speaking to many and listening also to what Drs Medbery and Spunberg note on the CK Patient Support Board, it really can boil down to a few things.... 1. Hearing retention (CK has a slightly higher % of hearing retention odds), 2. comfort level (ie: head frame vs. mesh mask) and most of all... 3. the proven track record of each for AN's. GK has longer term data available (its been around for over 35 yrs and newer versions of GK (Perfection, as noted by Mary :-* ) is available.... CK is also proving its value on multiple ailments that it treats (can be used all over body vs. GK is head only). "Total" accuracy is also key... much written on this site (if you do a search, esp. in the "Radio" forum), as both of close in "total" accuracy..... but again, both are very viable options.
Go with your gut.... intial reaction with gut and stick with it.. and never question that decision, as you will know what is best for you.
Hang in there!
Phyl
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I had GK. I would do it over again without any hesitation. The doctors and staff at Wake Forest were wonderful. I knew right away that I made the right decision. I like GK because it is a one-shot wonder. There are a lot of comments about the headframe; it was no big deal. That should not be a consideration when one chooses between GK and CK.
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Nancy, I think you'll reach a point in your research that you'll "know" what's right for you. A lot of other folks on this forum came to that point as well; I know I did. My final choice was between a well known big-city AN doctor or a less experienced yet highly acclaimed radiologist. The radiologist won out because he saw me as a whole person who just happened to be attached to an AN. As it turned out, his perspective led to other tests, and the discovery that not all my symptoms were AN related. Maybe the AN specialist would have discovered that too, but I just didn't "get" that when I met with him. The important thing is to find a treatment and a doctor that you're comfortable with.
Keep posting and let us know how you're doing.
Betsy
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The important thing is to find a treatment and a doctor that you're comfortable with.
Nancy -
I agree 100% with Betsy. I also agree with her when she says "you'll reach a point in your research that you'll 'know' what's right for you".
I know I did.
Jan
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Thanks all for the posts. Just wondering Grace1. Did you have any hearing before GK? If you did, did you retain, get worse of lose it? This is my most important question about GK, and it seems the CK people are really advocating it to preserve hearing--better odds. I was really hoping gamma knife would pretty much be the same as far as hearing retention because now I have to explore the CK, and I will have to go out of area, and that could be hard if I don't have insurance that will cooperate. I will be getting my recommendation from the panel of doctors Friday or next week. This waiting is about to drive me crazy. I can't sleep, and I have headaches almost every day. I'll let you guys know what happens. Nancy
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You are in my thoughts, Nancy. Hang in there. Waiting is NOT fun! We are waiting with you.
Mary
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Thanks all for the posts. Just wondering Grace1. Did you have any hearing before GK? If you did, did you retain, get worse of lose it? This is my most important question about GK, and it seems the CK people are really advocating it to preserve hearing--better odds. I was really hoping gamma knife would pretty much be the same as far as hearing retention because now I have to explore the CK, and I will have to go out of area, and that could be hard if I don't have insurance that will cooperate. I will be getting my recommendation from the panel of doctors Friday or next week. This waiting is about to drive me crazy. I can't sleep, and I have headaches almost every day. I'll let you guys know what happens. Nancy
Hi Nancy,
From my understanding pertaining to hearing preservation.... most of the time, in order to preserve serviceable hearing... CK is "fractionated" (as can be others but this discussion has been CK vs. GK) as it is dosed out over a number of days (typically 3-5) vs. GK which is typically 1 dose/day. By fractionating a treatment, it means surrounding structures/tissues have a bit of a chance in between treatment doses to help "recuperate", thus trying to help maintain a higher level of serviceable hearing. Based on conversations with my docs, others here and the drs on the CKPatientSupport Board, it seems that in order to do all you can to preserve hearing (that was my primary concern as I had over 80% serviceable hearing going into CK), fractionating the treatment would give better odds to save hearing (again, individual results may vary......). I also have an understanding that when the hearing level is quite low in %, then the 1 dose (whether CK, like MaryAZ had or GK as many GK patients here have had) is chosen.
You're doing great... and I know this part of the decision making process is a total pain in the petunia.... but truly.... you are doing everything right, you are asking questions and doing your homework. For me (and many), once the decision making process is done, you will feel that monkey off your back........
Hang in there!
Phyl
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I had 40% hearing loss when I was diagnosed in July 2006. My hearing was not tested again before GK in Dec 2006, but I knew it had gotten worse. When my hearing was tested a few months ago, I had 80% loss and the other 20% is distorted. Therefore, I have SSD in that ear. To me, that is no big deal. I have accepted it. I believe that they told me before GK there was a 50% chance I would end up losing hearing in that ear because it was a process that had already started. I think the loss was gradual - not all at one time. The hearing loss has not changed my feeling toward getting GK at all. Odds are precisely what they mean: chances. You take chances with all procedures. It is all so confusing when you are trying to decide what to do, until that magic moment happens when you know what is right for you. Let me know if you have any more questions. Good luck!!!!
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Grace,
Had you read any research before you had your GK that with CK you might have a better chance of saving your hearing? If you had the choice of CK over GK, then what lead you to go with the GK? I feel like I am just trying to make the GK work because that is what is offered in my area. Reading from this forum, for the most part, I am hearing (ha!) that CK is the way to go for preserving hearing as far as radiosurgery goes. Sounds like you lost hearing with the GK which makes me wonder why you did. In my case, if I do the GK instead of the CK and I lose more hearing, then I will always wonder what would have happened if I had had the CK instead. I wish both had the same results/odds. So confused. Nancy
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Nancy, I was in the exact same boat as you both on the hearing preservation front and the insurance front. The statistics that I received at the time my treatment were: with GK, 40-60% hearing preservation, with CK, 70-75% hearing preservation. Stanford told me they've improved their figures by avoiding the cochlea in the delivery of radiation. Once I became convinced that the two procedures are the same in terms of tumor control and accuracy, I knew I had to go for CK because why wouldn't I try my best to come out of this procedure as whole as possible. My HMO gave me a hard time because my network had recently purchased a GK machine. (Terrific, they're barely done reading the instruction manual and I'm supposed to have my brain radiated by them.) Stanford helped me through the appeals process. We made the case that CK was medically necessary due to the improved rate of hearing preservation. I found it so outrageous that my insurance company would claim GK is the equivalent as CK -- easy to say when it is not their hearing that is at stake. I submitted a personal letter as part of the appeal (which I will email to you separately if I can find it) that basically said I am a young professional and CK will give me a better shot at preserving my hearing. After three or so agonizing weeks, I received a favorable decision from the State of California's HMO Board (forget its actual name) overturning Aetna's ridiculous decision and ordering Aetna to pay for the procedure out of network.
I have to tell you, what I learned about our medical system from this process is that you need to really advocate for yourself, both as against doctors who are too eager to impose their views and insurance companies who think they have some right to determine what is "medically necessary" for you. The final decision when it comes to our well-being must always rest with us.
Be well,
Francesco
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Nancy,
Personally if my tumor had been discovered at that small stage - I would head straight to Dr. Chang at Stanford knowing all that I know now from what I have learned from participation in the ANA and this forum. But I cannot turn back the clock. “Should-a would-s could-a� can be dangerous paths for us treated AN’ers to go down as we must keep moving forward and accept the treatment we had and make the best of our outcomes… otherwise we can get depressed about it.
I look at the cup as ½ full & not ½ empty. I am now single sided deaf, I have a crater in my skull, and I have a permanent asymmetrical smile however I do have great balance (after working at vestibular exercises), I have NO headaches, I can ride a bike with no hands and my last MRI showed the residual tumor that was left along my facial nerve has receded and was gone off the radar. There was both good and bad outcomes- but hey my tumor was a whopper size. What is amazing is that I am not on ANY meds… so I can take the Bell’s palsy as I know it could have been much worse for me. Cognitively I was not affected- and that meant more to me than anything. “If I could have done it again, knowing what I know now and what I experienced would I have done it differently?� YES.
But hey I have accepted this and I “keep moving forward�.
Your question is a valid one but for many patients this can be very painful to reflect and answer on if they had residual complications after their treatment.
Not all have great GK success stories and I had a fellow ANA member, visit my home who had the T/L years 9 years ago with no facial issues. She had re-growth and 2 years ago had GK and now is a 3/6 on the House Brackmann Facial nerve scale with obvious synkinesis. (Yet no facial issue prior to GK. ???) I also know of another patient who had FSR at 2 cm and now is at 4+ cm waiting for surgery in her wheelchair as the FSR did not work.
You only want a GK surgeon who has a reputable track record as even this can have complications if not done with expertise and skill.
Read below for some positive stories
http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/default
&
http://www.stanfordhospital.com/search/PhysicianDetail?doc=2077
He has amazing success stories on our forum. Many fly out of state to see him and some from abroad.
http://anausa.org/forum/index.php?topic=894.0
http://anausa.org/forum/index.php?topic=5469.0
http://anausa.org/forum/index.php?topic=5105.0
http://anausa.org/forum/index.php?topic=5903.msg54753#msg54753
http://anausa.org/forum/index.php?topic=6063.msg58464#msg58464
http://anausa.org/forum/index.php?topic=5530.msg50571#msg50571
Their ENT dept is good too. My AN tumor was discovered way too late for me to qualify for Gamma Knife… however if I could turn back the clock and choose which route I would have gone "IF" my AN was discovered sooner- Dr. Chang’s office, there in California, would be the door I would walk through.
Daisy Head Mazy
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Thanks for the posts. I have a lot to think about and a lot more research to do. I am hearing so many good things about Stanford so I will research there. I have no idea what my insurance will say. The treatment center here is suppose to be the best in Denver area so I am sure they would like for me to stay here. But, I will evaluate when the time comes. I should hear today or next week what the panel of docs recommend. They do GK and surgery from what I am told. However, I am not so sure about the CK center and their success rate. Someone here on this site told me the center in Boulder was started by a Stanford doctor so it will be worth checking out. Thanks again for valuable insights and the websites. Nancy
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Yes, I did extensive research on both procedures. I came to the conclusion that GK was the route I was more comfortable with. The staff and doctors had a lot to do with the decision - they were so caring. Most of all I liked that it was a one-shot event. GK has decades of documented results. My husband is on disability and depends on me for a lot of things, so I went with GK because I felt it would give me the best outcome. A better chance at saving your hearing is just that: chance. My hearing loss was already in process before GK. I am so blessed that hearing is the only problem I have had. You just have to do your research and go with you gut feeling. It is definitely confusing reading conflicting opinions. I hope you can soon find peace with a decision.
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If I had it to do over again the first thing I would do is just wait for a while and see what happens with growth. My AN was 5x8 mm in the canal and my only symptom was balance issues.
While I was waiting I would have done more research on my options.
If I had to to some later because of growth I would still choose radiation over surgery but it would be a tough choice on which one to use but it would definitely be one that had a lot of experience.
Now the FACT is I don't have it to do over hopefully so I just have to make the best of what I have and be thankful that it was not worse. I'm deaf on one side but my balance is pretty good most of the time. I got to retire early and I see my new grandson a lot and I have a great wife who has been my biggest helper and GOD is still good.
And maybe Clemson will have a good year, cause that's what everyone said last year.
Goodnight all.