ANA Discussion Forum
General Category => AN Issues => Topic started by: ppearl214 on April 18, 2007, 09:48:26 pm
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Dan, I hope you don't mind, but this is a more appropriate spot and more apt to get noticed and responded. I've moved it so others can see easier and more apt to respond to your opening post. Thanks. Phyl
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f706
Newbie
Posts: 1
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #10 on: Today at 11:02:46 PM »
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Hi all:
I earned my Audiology Degree in 1977. I practiced for 10 years. The year before I left audiology for a different profession I experienced a sudden muting of hearing in my left ear at Thanksgiving dinner. The next week I went to visit an associate who did the standard hearing tests and ABR. He found nothing remarkable. My hearing seemed to be unmuted by then. 11 years later I had a simple air-line hearing test and found the hearing in my left ear had degraded to a "mild loss". In 2000 I awoke one morning with tinnitus and noticable loss in my left ear. I had it tested and did nothing. This has happened three more times since. Finally, two weeks ago, I went to the ENT fully expecting the AN diagnosis. Yesterday he confirmed it. One of my peers in graduate school is now heading up the audiology dept at the Mayo Clinic in Minn. My graduate committee chariman is the head of audiology at the Mayo Clinic in Scottsdale. I mention all this because I am likely one of the most foolish people on this site. My feeling at this point is that I will do almost anything to avoid surgery. My wife is disabled and I am the only family she has for over 900 miles. I'm in sales. I drive daily. I'm a primary care giver. I simply cannot be ill or be "off my game". I would rather stop/slow down the growth of this thing and give myself another 20 years and then let it take me if it is going to, because by then I will likely be a widower and alone. Those are the cold, hard facts of my situation. I don't care to have it out if it will just stop growing. I pick up my MRI tomorrow and you can believe I'll be studying it for size etc. At one time I was pretty good at reading cranial x-rays, although I've never seen an MRI. Here are my concerns: getting insurance to pay for treatment not available within their "coverage" area, dealing with surgons who may have their own agenda and biases, and, of course, finding who is excellent and where they are. As this thing has been making itself know to me for about 20 years now there seems to be some level of urgency from my ENT. He is talking about getting this done in June. I don't know if I can get enough consults in by then. But, I ramble (is that a symptom?). By the way. All my life I've been an emotionally "tough" individual. No tears through the death and burial of beloved sister, parents, in-laws and friends. Now I cry at patriotic songs and memories of my kids playing the piano or baseball. Anyone have anything like that or am I just getting old? Sorry for the length of this post.
Dan in Murray Utah
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macintosh
Newbie
Posts: 44
Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #11 on: Today at 11:23:24 PM »
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Dan--
Let me just hit a few points--When I first heard I had an AN last November, I was bowled over emotionally, and I (like you) am supposed to be the tough one in the family. I did research, had radiosurgery in January, and went back to work the next day. I was lucky enough to have a small AN, so radiosurgery was an easy choice. I've had no change in my life so far--a little tinnitus, I ask people to repeat things sometimes--bottom line, I'm about 99% of normal.
You'll know exactly what you're dealing with when you see the MRI. You can sort out the details then. But this board is full of people who were just as scared as you are at this point, and we're living normal lives now.
Mac
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Mac and Phyl:
Phyl:
Thanks for moving me to the correct place. I tried to find the right place to post and was unsuccesful.
Mac:
Thanks for the kind words. My fears are not so much for me, but for the possibility I may not be able to continue to care for my wife, as there is no one else to do it. I'm likely to push for the radiosurgery due to the chance for fewer side effects and little/no recovery time. I simply cannot be out of commission.
Dan
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Dan:Sounds typical too alot of us on this on this forum.I am on my 2nd go around with a tumor. Had one in 1988-Surgically removed on left ear-now have one on right that I had radiated last summer but lost alot of hearing. I am like you-the tough guy. Not no more. Very emotional now. Do not know why these things do that too a person, but they can Some here have done great with both surgery or radiation but do not expect an immediate cure on either form. My first surgery in 1988 took me 1 year too feel like myself again. This 2nd one with radiation-I am 9 months out-coming up on 10. I work an 8 hour job but their are still days this is too much and I am in bed by 7PM. It sounds too me like you may be trying too overload yourself by working and being a caregiver. Believe me-any choice you make-whether surgery or radiation you will not be able too keep up that pace very long. Remember this is a major infraction (lack of better word) too your brain and it needs time to heal. I hope you find out the size-then you can make a decision of treatment.If you stay on this sight and forum-people can assist you in experiences what you can exoect.No doctor can give you all their is too know about reprecussions you may face from treatment. I wish you the best. Sometimes you just have too face the cold hard facts-we all do and make some form of decision-but base this on input not for conveince only. Per-se going too a doctor who has no experience with these through radiation or surgery. You could end up paying for this the rest of your life. Good wishes. Ron
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Dealy:
Thank you for the kind words. I guess what I am trying to say is that I don't really care for the tumor to be removed or even completly killed. I just need time. I do not expect my wife to live another 20 years. My family is located on the east and west coasts, all are either in school or their spouses are in school and will be for at least the next three years. My wife cannot drive, cannot get herself around very well let alone help me and I outweigh her by 150 lbs. She cannot remember how to pay the bills etc. I only need to outlive her, and to be able to take care of things. If she knew just how serious this is it could send her into a flare that could institutionalize her. I do not want either her or myself to end up warehoused in a medicaid facility. I read/heard that recovery, under ideal circumstances, can be one day/hour of surgery. This kind of stress could cost her one week of life/hour of recovery. I cannot ask my children to abandon doctorial and undergrad programs at Ivy League universities and Law School to come home and change my diapers or make my wife dinner for one month, six months or the rest of our lives. No, if recovery is like some I've read here, death is preferred because then my assets could be sold and my wife could move to an area where the children could manage and care for her.
I'm fully aware that my life is to be forever changed, I just need to be healthy enough to continue my responsibilities. I'm not "taking on too much", I'm doing what has to be done because there is no one else to do it.
Thanks again,
Dan
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Dan:Sounds like you are in one heck of a situation.I do not envy you. I am sure you have read other posts on this site concerning recovery time-whether surgery or radiation. With surgery the main consideration is the anthesia they use too put you under. In 1988 I had a 1.5CM and I was under for 8 hours. Depends on how sticky the tumor is etc. With radiation-you feel fine during treatment but then sooner or later the fatigue factor will hit you.Some on this site are wait and watch but that depends on the size of your tumor. If it is too big and you allow it to grow-it can do alot more damage then you realize-so size and location is a major consideration of treatment.I hope that you will be able to resolve this in a expedient manner but it also is a major and serious condition you are facing. Take care and God Bless. Keep us posted with your progress and what you find out about the tumor. Thanks-Ron
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Ron:
Thanks for the encouragement. It is something I must face nearly alone. Alone would be easier than with a completely dependent spouse and unavailable children. My wife's only living relatives are me and the kids. We just didn't need this. I pick up my MRI this afternoon so I'll be able to get a better sense of what I'm facing. Then I'm waiting for the Head of Neuro otology at the University of Utah to call and schedule an appointment. I will be forwarding a copy of the MRI to my friend at Mayo Clinic and so forth. I've much to do, including pursuading my brothers and sister to finally allow me to sell my interest in some property and revising my estate planning documents. Lots of fun. I've been reading Don's saga and something like that would absolutely destroy my wife. The next battle will be with the insurance co. I've already been approved at the U of U and what ever they have in mind, but if I get the nod from another place for radiosurgery, I'm afraid that must be the answer.
Nuff rambling, back to work.
Dan
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Hi, Dan:
Man, you're in a tough situation. You're also a brave guy.
As you probably know, if your AN tumor is smaller than 3 cm, you're a candidate for radiation treatment, which, while certainly easier than microsurgery, carries its own risks, including possible nerve damage. If your tumor is a viable candidate for radiation, I would suggest looking into FSR (Fractionated Stereotactic Radiosurgery) which is done in protracted, low-dose treatments and carries less risk as well as being, like the traditional radiation protocols, relatively quick and painless.
As my signature shows, I had both surgery and FSR last year. I'm pleased to report that I'm doing splendidly, today. If you met me, you would never guess that - 11 months ago - I had a fairly large AN tumor beginning to press on my brainstem, suffered from severe disequilibrium, fatigue, loss of appetite (I lost over 30 pounds before having the AN removed) and was unnaturally lethargic. The surgery was performed to reduce the size of the tumor and allow it to be radiated. My neurosurgeon and the radiation oncologist who collaborated on my treatment plan gave me a four -month 'break' between the surgery (which was uneventful - 4½ days hospitalization) and the radiation. The FSR treatments were spread out over 5 weeks, 5 days per week (Monday through Friday) and lasted about 20 minutes each. I suffered no pain or discomfort while undergoing the FSR treatments. My radiation oncologist told me that another AN patient receiving similar treatments in the same cancer center dropped by after work, had his treatment and went home to dinner each night, just a bit later than usual. He kept up his regular work schedule all during the time he was being treated. I'm retired but could easily have continued to work while undergoing the FSR treatments. An MRI scan that was taken two months following my FSR treatments showed the beginning of tumor necrosis.
I'm sorry that your circumstances make the demands you describe. I can't imagine that kind of stress. I hope your AN is small enough to be treated with radiation and that whatever option you eventually chose will be successful.
Of course, should an MRI show your AN tumor to be too large for radiation, surgery will be your only realistic option. Few doctors will attempt to radiate a tumor much larger than 3 cm. Remember, not all AN surgery carries disastrous consequences so don't allow the 'horror stories', while unfortunately true, to keep you from doing what needs to be done. My surgery was almost 9 hours long and I came out of it basically 'intact', although tired and a bit nauseous from the anesthesia and hospital meds I received. I was driving in two weeks and resumed my normal activities within a month. I'm not that much of an exception. Having a throughly experienced neurosurgeon - my surgeon had 30 years experience removing acoustic neuroma tumors - is the key to a successful surgery. Prayer doesn't hurt, either
Wishing you all the best as you deal with this medical crisis.
Jim
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Dear Dan,
Your wife is a very lucky woman to have such a wonderful, caring partner. I can somewhat relate to your situation of being sole (or in my case primary) caretaker. I have a young child (4yo) and neither I or his father have a family that could be of help if I was to spend several weeks recovering from surgery. I went with CK for my 2cm AN at the age of 47 in Nov. 2006. I wanted to be there for my son at least until he can take care of most basic stuff by himself (bathe, dress, fix basic sandwich etc. ) It was one of main reasons (beside not wanting anyone "dig" in my skull unless absolutely necessary) why I went radiosurgery way.
I had a bout of fatigue after my CK but it was very manageable, did not stop me from attending to my son. I took few days off work as I have rather stressfull job. Almost 6 mos post CK, I am doing fine, waiting for my 1st MRI.
If all I did was just "buying time" it was absolutely well worth it to me. I thank God every day that I can see my little guy growing, getting more and more selfsufficient. If I will be here next 10, 15 or 20 years for him - thatis all I need.
Radiosurgery has an excellent track record, granted it's not for everyone - some cannot stand the thought of having a tumour in their skull, some don't believe in radiosurgery-and thats fine. But it definitely is an option to consider.
You and your wife are in my heart in this difficult time. I hope you will arrive very soon to some decision and find help and assistance.
Flier58
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Dear Jim and Flier:
thank you for your words of encouragement and sharing your experiences with me. I picked up my MRI this afternoon and had a look. I'm guessing it is bumping up against 3cm or more and invading the Brain Stem space. I still haven't heard from the Doc's office for the initial consult. I'm a bit antsy about that. My wife finally asked a few questions today about hospital time and etc. I told her about the radiosurgery option and she asked why I'd consider that instead of getting it out. I told her I didn't really fell like spending a week in the hospital. She is thinking this is a relatively certain proceedure because that is what our ENT told us. The ENT even suggested an improvement in my hearing. As a former audiologist that practiced prior to the advent of MRI, I knew that AN, in my day, was almost a death sentence. As soon as I know just what I'm dealing with then I need a few months to get my affairs in order, in case the worst happens. My purpose in not laying it all out for my wife is because of her propensity to worry about every little thing. This would send her over the edge just waiting to find out what the Doc says in the initial consult. Well, off to do the grocery shopping and then make dinner.
Ta Ta all,
Dan
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Dan:
To the best of my admittedly layman's knowledge, the mortality rate for AN removal surgery today is practically infinitesimal - less than 1%. I believe that if the tumor is pressing on the brain stem, surgery is the only realistic option in most cases. If it is not removed, severe symptoms can result that will make normal life impossible. Eventually, if the tumor compresses the brain stem past a certain point, it will first disable, then kill you. That is the reality of acoustic neuroma tumors.
I'm glad to offer whatever I can to you. I advise you to do all the research possible before making a final decision. This website and others have much useful information available.
Jim
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Dan, I respect your fortitude. Crying about memories and wonderful emotional times with your children are part of aging and eventual mortality. Life is wonderful! We have a lot to learn from your example. If you don't mind my saying, God is with you.
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Hi Dan, I'm a newbie here in the forum. I am 3 months post op from the removal of a 3mm tumor in the exact location as yours is. The translabrinth procedure was performed on me by Dr.s Link and Driscoll at the Mayo clinic in Minnesota. Since the tumor was pressing on the brain stem, I was beginning to lose the use of my right hand/arm, and dizzyness was beginning to have an effect on my driving ability. I don't think you can buy 20 more years time with a tumor that size. Please take care of yourself:-) I was told that if I hadn't had the tumor removed, it could soon begin to interfere with my ability to swallow. The recovery for me went pretty good: a week of terrible fatigue, a couple weeks of simply needing an afternoon nap, and now after 3 months, any residual effects are more of an occasional annoyance than something that interferes with how I live. If you want more details, just ask. Note: your insurance may pay for someone to help you after you go home, due to your circumstances. If not, and you truly want to be brave-ask the local church to provide assitance! I wish you the best, Yvette
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Hi Dan,
Just read your new post. if your AN is around 3cm and pressing on the stem, you are better of with surgery according to all that I have read. Most of the people have a good or excel;lent recovery even if it takes time. You owe it to yourself and your wife to look for the best options. Both of you are in my prayers.
Flier58
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Hi Yvette,
Glad to see you are hanging in there. I'm a little confused and hope you can clarify.
Typically, 3mm AN is very very very very small... barely a blip on an MRI... and you note your's was pressing on the brainstem, so was curious if that was accidental typo (to be 3cm instead of 3mm). Can you please reconfirm? Most 3mm AN's are typically non-symptomatic (I use the word "typically" as they usually do not cause major issues, but that is just the general rule and does not apply to all). Just want to make sure we are all on the same page.
Thanks! :)
Phyl
Hi Dan, I'm a newbie here in the forum. I am 3 months post op from the removal of a 3mm tumor in the exact location as yours is. The translabrinth procedure was performed on me by Dr.s Link and Driscoll at the Mayo clinic in Minnesota. Since the tumor was pressing on the brain stem, I was beginning to lose the use of my right hand/arm, and dizzyness was beginning to have an effect on my driving ability. I don't think you can buy 20 more years time with a tumor that size. Please take care of yourself:-) I was told that if I hadn't had the tumor removed, it could soon begin to interfere with my ability to swallow. The recovery for me went pretty good: a week of terrible fatigue, a couple weeks of simply needing an afternoon nap, and now after 3 months, any residual effects are more of an occasional annoyance than something that interferes with how I live. If you want more details, just ask. Note: your insurance may pay for someone to help you after you go home, due to your circumstances. If not, and you truly want to be brave-ask the local church to provide assitance! I wish you the best, Yvette
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Dan,
I just read all the posts.. and I commend you on your strength, resolve and courage. As you know, you are doing everything right. I know waiting on the MRI results is so filled with anxiety and "just tell me what the heck it is" attitude. Just hang in there until then... and know we are all here for you. As you are already reviewing your options and locations, I'm in the wings as you learn more. I'm a CK graduate from a year ago, doing great, no down time (which I know you cannot do, based on your love and care for your wife).
Sending wishes of strength to you.
Phyl
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Jim, Boppie, Yvette Flier and Phyl:
Thank you all for your words of encouragement. I spent a bit of time last evening with my MRI and a caliper and near as I can guage the little beastie is about 2cm. Looks like a nice plump grape. The only symptoms I have are tinnitus and moderate to severe high frequency hearing loss. I've no vertigo, nausea, headaches or muscle weakness. My sense of humor is still intact, but I must admit to a desire to talk to someone. You know, to "unburden". I cannot let my wife see any fear or uncertainty or she will fall apart. Especially since my initial consult with the otoneurologist isn't for a month. I can't say anything to anyone at work as I have only been on the job for about 5 months. I'm in a new position and have tremendous responsibilities and opportunities to really make a difference in the company because of what I bring to the party and the newness of the division. It is a great company, one of the "top five" to work for in Utah. I do not anticipate any kind of difficulty from them when I'm actually to receive treatment, but as I still have about 2 months before anything is done, I think it best to wait. My oldest son called from San Fran tonight and he has obviously been doing his own research and has decided that I'm to have radio surgery. I could tell from his voice that he is worried. He knows what it is like to face a life changing surgery. He was one of the country's most highly recruited high school baseball players. He took a scholarship to Stanford and during the first week of practice he had a knee injury. The Dr. told me he would never play baseball again. After three surgeries and months of incredibly dedicated rehab my son played baseball. With only 12 appearances at the plate the Seattle Mariner's drafted him in the middle rounds. He declined them in order finish his degree, even though his life long dream was to play in the pro's--he would go into the draft when his college was done. He ruptured a disc in his back during his senior year. His beloved baseball was gone forever. I drove from Salt Lake to Stanford 11 times in 5 months to take care of him while he underwent his surgeries. I take inspiration from my son. He is entering law school this fall and I will not let him lose that to take care of me, although he would if it came down to that. Again I ramble. But, I have no one to open up to, so, this forum is it. I hope I do not become a bore. After this is over, I'll likely be one of you, lending encouragement and support to those coming along.
Thanks again kids,
Dan S.
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Dear Dan 2 cm, you are in the luck for radiotherapy. Keep an eye on the growth factor and stay under the 3 cm mark. I had 2 cm and no symptoms before treatment, other than significant db losses.
At age 64 I had 9 hours of surgery and about 9 months before I felt tip top shape. You are wise to seek a non surgical route, in light of the responsibilities you have at home and on the job. Since your hearing loss is not serious , you might be able to keep some of that. The tinnitus won't leave you no matter what. I believe that some hearing is better than none at all if you manage to keep it and get rid of the bulk of the tumor. Keep us posted.
My own adult children were very concerned for me but as they have witnessed, I came through extremely well and able. Tumors are just scarey.
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Hi Dan,
I'm glad you've found this forum. It's a very good place to ramble, vent, cry and surprisingly laugh. We've all been thru all the anxiety of getting dx, choosing the tratment, doctors, hospitals and we try to support newbes just like we have gotten the support in the beginning. I know that this site helped me tremendeusly because familiesis can be worried and concerned but have a difficult time truly appreciate the anguish we are going thru. Well-my mantra-do your research, make a decision, and know that you did your best whatever route you choose. We'll be here cheering you and your family.
Hugs to you and your wife,
Flier58
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Hi Dan,
Your plate is indeed full and my prayers are with you and your family. I can relate to so much of what you have written since I have a daughter who is recovering from non-hodkgins lymphoma and her husband decided he just couldn't take it anymore and walked out. Right in the middle of trying to be there for her, I found out I had an acoustic neuroma and I thought it was a death sentence. It was not long until I realized, with a lot of help from all of the wonderful people on this board, that I was not going to die and that my life would go on.
Keep posting and do all the venting you want here...I can't imagine how hard it is for you not being able to talk freely about all of this. Don't feel like you are rambling...we all do that! Sending you a BIG hug.
Jean
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Hi, Dan:
Glad to learn that your AN, at 2 cm, is still small enough to be treatable by stereotactic radiosurgery. That will make the logistics of your future treatment much easier, although you'll still need to have some pre-op tests. Traditional radiation - be it 'Gamma Knife' or 'Cyber Knife' - is usually a one-day deal, allowing you to miss very little work and be home with your wife in no time. I realize now that, with your manifold responsibilities, FSR would be somewhat impractical for you, although I retain the conviction that its quite possible to complete as an after-work-type treatment over a few weeks. FSR also has the advantage of having a better chance to avoid facial nerve damage and gives your body overnight to recover from the radiation dose you receive. However, the traditional radiation treatments are also pretty safe these days. If I had the option (I didn't, my AN was too large when discovered) I would have went the Gamma Knife/Cyber Knife route simply to avoid surgery and it's possible complications.
I think we can all understand your disinclination right now to discuss your condition at work or with your wife, considering her fragile state. That obviously makes the 'journey' (and it is, that) more difficult and why I think of you as courageous in the face of adversity. My wife was with me every step of the way as I endured numerous doctor visits, tests and finally, hospitalization and surgery, followed a few months later by 5 weeks of FSR treatments, as well my initial physical recuperation, which went at a fairly brisk pace, as I previously explained. I was blessed in that regard and I wish every AN patient could have the same kind of support. However, your adult son seems to 'on the case' and you certainly have the empathetic folks on this forum to turn to, whenever necessary. I often comment to 'newbies' that being diagnosed with an acoustic neuroma tumor is a 'minefield'. While the tumors are basically the same, except for size, it seems as if each patient has a different experience. Those experiences are usually somewhat life-changing for most folks, even with a good outcome, meaning no facial paralysis or other complications following treatment, be it radiation or surgery (or both). Many AN patients have mental and/or emotional issues arising from this medical crisis, including depression, as it often changes your lifestyle to some degree. I came through my 'AN experience' basically unscathed but I now appreciate my wife and my (otherwise) good health much more than before I was affected by the tumor. I've also given up heavy lifting.
Your account of your son and his roller coaster ride as an obviously outstanding college athlete who came back from a serious injury (with your help) and then, a potential sports professional who chose a law school education, instead, is fascinating as well as poignant. I can see why he is an inspiration to you. Rightfully so. Your determination not to allow your AN treatment to interfere with his chosen career path is the right attitude to have and one that I would share. My son, a very responsible young man who worked 3 jobs to help put himself through college and has never been a problem to us, was 26 and preparing to (finally) move out of our home and get his own place, one of the major steps on the road of adult life that he needed to accomplish. He immediately postponed doing so when it became clear that I had a serious medical condition that required surgery and a possibly long recuperation period. I really appreciated his concern and willingness to alter his plans, although I suspect he wasn't all that sorry about not moving out last year, but I choose to give him the benefit of the doubt on that one. He now plans to move out this autumn. I think he's serious.
As you know by now, although radiation is easier to undergo than surgery, it's not a panacea. Facial nerves can still be affected and some radiation patients lose some hearing, etc. That reality having been noted, I think it's probably your best option, considering your family and work responsibilities at this time. The fact that you have few symptoms now is a very positive factor for you.
I wish you well as you prepare for your consultations and ponder your options relating to doctors, facility and type of radiation you will have.
Jim
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Jim:
Thank you again for your kind encouragement. i received a packet today from my ENT with his notes as well as the radiologist's report. My parasite is about 1.5cm X 1.1 cm in the Cerebral-pontine area, extending through the internal auditory canal to the Cochlea. There is some other info on the lack of involvement of the superrior vestibular nerve etc., but the thrill to me was the size.
I believe that FSR is available in my area and that, to me, makes the most sense given my situation. I had a long conversation with my boss today, not about this--he doesn't know yet. He wanted me to provide input into the direction and expansion of our department. I really need to be "on my game" for these next few years. Right now I am the only person doing my job and we are considering bringing as many as 7 more "of me" on. Guess who gets to be the leader?
Well, got to go to the store now.
Thanks again,
Dan
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Dan
Glad to hear that the AN is treatable with Radiation. I found recovery time and side effects for me were very minimal. I had the single dose not the FSR.
Ellen
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Hi all...
I finally had my consultation with the neuro-otologist this afternoon. It lasted about 10- minutes. He handed me a pamphlet, crossed off all options except for translabrinthine surgery and told me my ear was not useful so there was no point trying to save it. I told him to check the audiogram again and when he did he apologized for mis-reading it, but that he stood by his decision to do the TL surgery. I then told him of my situation with my wife and work and he tried to tell me that the risks of developing a cancer from the GK was greater than any risk of surgery. But, if I didn't want surgery then he would refer me to a "radiosurgon". Now for the fun part. My insurance company considers GK to be experimental and isn't likely to cover it. However it will pay for CK for malignancies. My next task will be to get them to make an exception, which they will consider. So, I've got to "price" the two proceedures and hospital costs and recovery time etc. Anyone already done this kind of research? Anyway, upon returning home my wife read the literature (very biased) that the doc sent home with me and it really upset her (understatement of the year). Why is nothing ever easy?
Well, that's about it for now. I'll keep you posted when there is something to post.
Dan
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Dan--
Good thing you have enough sense not to be bullied. I had a similar situation, and luckily the ombudsperson at my HMO was very willing to listen to my point of view and overrule the ENT who tried to send me for surgery for a 7mm AN. I had radiosurgery in January, went back to work the next day, and have had no side effects so far.
I don't know the exact figures, but GK or CK is much cheaper than open resection (TL or any other) surgery.
The supposed "risks of developing a malignancy from radiosurgery" story is a myth propounded by surgeons who are either ignorant or greedy. Two good places to go to get information that could help with your insurance company are the University of Pittsburgh GK site <www.acousticneuroma.neurosurgery.pitt.edu> and pubmed.gov, where you can use the search string <acoustic neuroma radiosurgery> to get useful material.
I'm going to enclose several excerpts here from these sources. One is from an article in the Nov. 2006 Journal of Neurosurgery by Dr. William Friedman at the University of Florida (he was my radiosurgeon), and a longer one from the University of Pittsburgh neurosurgery site.
From Dr. Friedman:
The issue of malignant tumorigenesis recently has been the subject of much discussion. It probably exists but at a frequency much lower than the risk of a serious complication from open surgery.
From the University of Pittsburgh:
Patients inquire about the risk of delayed malignant transformation. Malignant schwannomas are rare, but have been reported de novo, after prior resection (34), and after irradiation. We answer that this is always a risk after irradiation, but that the risk should be very low. We have not seen this yet in any of our 5,400 patients during our first 15 years experience with radiosurgery, but quote the patients a risk between 1:1000 and 1: 20,000. We reported one patient with a malignant mesenchymal tumor of the cerebellopontine angle that resembled an acoustic tumor (36). One report from Japan found a malignant tumor four years after resection, and six months following radiosurgery. The time interval after irradiation was too short to be causative (34). A second report noted the development of a temporal lobe glioblastoma 7.5 years after radiosurgery for a nearby acoustic neuroma. The temporal lobe had received a low radiation dose (35). In contrast, we have a patient who had initial management of a frontal lobe astrocytoma, and years later developed an acoustic neuroma. Was the development of these tumors related in some oncogenetic way, or were they radiation related? We believe the risk of developing a tumor years after radiosurgery is much less than the risk of mortality immediately after a resection, and likely less than the risk of the patient developing another tumor on their own in another body location.
Keep fighting.
Mac
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Mac, great post.. thank you.
Ah, the old cancer scare tactic.... at this point, after all of my time dealing with the medical community for all of my medical whoas.... one day soon, my hope is that physicians will be more open minded to learn the facts before they attempt the scare tactic... it just boggles my boogered brain.
The number of cases of malignancy from radio-surgery can be counted on one hand.... and I have more of a chance of getting cancer (heck, I already have it but work with me here, folks...) from 2nd hand smoke. More chance of getting hit by lightening... more chance of getting hit by a MAC truck.
Sometimes in life, you just gotta take risks... and if the pros truly do outweigh the potential cons...then it may be worth the risk. Otherwise, in life, I'll be the first human ostrich to bury my head in the sand. For me, I just refuse to live my life that way.
Sorry... I had coffee this am.... just my thought.....
Phyl
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Mac and Phyl:
Mac:
Thanks so much for your response and the information. While this is still very early in the process I'm the kind of guy that wants to make sure that I do not need to backtrack due to an error in proceedure or presentation. Unitl I meet with the radio surgeon I will not have "his biases". I believe that if cornered into TL surgery I don't want to go the the guy I met with yesterday. That precipatates another battle; getting the insurance company to allow me to go to a location with vast experience. Anyone have any experience with linear accelerators? If I get approved that is what we have here.
Phyl:
Easy on the coffee! My impression from talking with this guy yesterday was that as soon as he heard that I had read a bit and wanted the radio surgery he wanted nothing more to do with me. He did ask me I would allow him to follow me. I don't think that is an unreasonable request, but I know now that if he ever mentions surgery again I'll be getting a second opinion.
thanks to all.
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Phyl:
Easy on the coffee! My impression from talking with this guy yesterday was that as soon as he heard that I had read a bit and wanted the radio surgery he wanted nothing more to do with me. He did ask me I would allow him to follow me. I don't think that is an unreasonable request, but I know now that if he ever mentions surgery again I'll be getting a second opinion.
I had a microsurgeon do that to me... he copped such an attitude with me for choosing radio-surgery... oh, well. His request to you is definately not unreasonable... but again, if surgeons were better versed, well then....
had my last cup of coffee until our office afternoon hazelnut fresh brew... will calm down in a few :)
Phyl
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I honestly don't know whaat to say about your neurootologist, except to say that I'd be very cautious listening to him. I had linac( first becasue it was available here and secondly because I din't know that GK or CK had better results, GK definitely ahs the best outcomes as released in a study last August) and I will give you the whole rundown later but I seriously have to digest the information that the doc gave to you because I am flabbergasted as I'm sure others that read this are and will be. He is seriouly biased and I wonder why. I don't think that you will have any trouble with your insurance company if you decide on linac. I really need to think about this doctor and I will post later. I am a nurse so I find this doubly disturbing. Holly
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...I had linac( first becasue it was available here and secondly because I din't know that GK or CK had better results, GK definitely ahs the best outcomes as released in a study last August)
Holly, fast question please... do you have a web link to the Aug 2006 study you are referencing that you can share?
thanks.
Phyl
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I will get my husband to find it again and will post it promptly..He is a researcher himself and loves this stuff, only he was too afraid to reaearch when I was diagnosed9 poor thing).
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The study in question was done at Davis Med center, Sacramento. My husband found the study through medline which you have to pay a fee to view the studies. The link is http://ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed The author of the study is Julian Perks Jr. He/She has an email address of julian.perks@ucdmc.ucdavis.edu If you use the medline site just put in the word gammaknife and quite a few sudies pop up. The other place to go is jnnp.bmjjournals.com there are many studies there. I hope this helps. However I think he still hasn't found the exact study that we read last year. I will publish it when he finds it.
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Dan--
I had LINAC treatment. It's not as precise as GK or CK, but it was in network, the team was very experienced, and my AN was small, so I decided it was okay. So far, things are fine.
Mac
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In reading through this thread, I thought it would be helpful to clarify some of the terminology.
LINAC is short for linear accelerator which is the source of radiation in all of the machines mentioned except for GK (cobalt) and Proton. This is true for CK as a dedicated radiosurgery machine as well as the radiotherapy machines (Novalis, trilogy, etc) which can be used in treating AN's. There is no difference in treatment efficacy for AN's based on radiation source being cobalt or LINAC. I'm not sure if that holds for Proton however.
I would certainly agree with the other posts re: malignant transformation and surgeons disengaging when radiosurgery is mentioned.
I would love to know what insurance company thinks GK is "experimental" at this point given it's been around since 1969 and used on over a 100K people with AN's since then. I would certainly have fun asking the individual making that comment what sample size and study period they think is adequate to no longer be experimental ;D. Based on that logic they probably still endorse leeches and blood letting as a primary therapy :o
Mark
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To all who have jumped in today:
I can't thank you enough for your comments and links etc. The literature the neuro sent home with me really freaked out my bride of 35 years. Her first thought is that I'd better have the surgery, then when I read to her the side effects from some of the posts here she panicked. I told her that we are not in any hurry because this thing has been growing at least 23 years that I've been aware of. A few months more is not going to be critical. The premiere cancer treatment center in our state is building a brand new facility about 1/2 mile from my home. It is already operational. Wouldn't it be nice to have FSR from that location? Dream on.
We still haven't heard from the Radio-surgeon we were referred to. He has my MRI and the neuro-otologist's notes as well as my ENT's notes and audiograms. I expect to hear from him monday or tuesday. Of course I would prefer to go to Stanford or one of the other big centers for CK/GK, but the main thing is to get the insurance co. to allow the radio treatment. One battle at a time.
Thanks again to all of you,
Dan
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Hi Dan,
I just read through this thread and wanted to add a couple comments. You're in a tough spot being a caregiver. Everyone says "take care of yourself first", but how often is that really possible? Sometimes you have to though, like on an airplane when they tell you to put on your own oxygen mask before helping others.
My Dad had MS, and for the last 13 years of his life, was completely bedridden and dependent on others for every aspect of his care. My Mom was a saint; she kept him clean, well-fed, and healthy. When he first started needing that level of care, I was living 500+ miles away and only got home a few times year. I know my folks felt the same as you; they didn't want me to give up my job and friends. But I did. Dad passed on in 2003, and I'm so glad I was able spent so much time with him in his last few years. There are some things you don't get a second chance to do, and I have no regrets. I wanted to share this with you because as much as you want your kids to succeed in school/career/life, they might feel just as strongly about helping you. I hope I haven't stepped over the line, I just wanted to share a "kids" viewpoint.
You're under so much stress right now. Please know that you're not alone. The folks on this form are a great comfort. I also think you're a hero for standing by your wife. Even heroes need a break sometimes, so try to take a moment for yourself once in awhile. Post when you can and let us know how you're doing.
Betsy
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Betsy:
Thank you for your post. I, too, was able to spend a few years taking care of my father as he died. I watched my mother take care of him for nearly 20 years as his health steadily declined: Three total hip replacements, two open heart surgeries, gall baldder removal, surgery on both elbows and finally supra-neuclear palsey (the disease that killed Dudley Moore). The stress, I believe, ultimately killed my mother, nine months before my father died. Yes, the stress of careing for my sweetheart is definitly taking a toll on me. For the first time in our married life she went on a trip without me. I sent her to Rhode Island to spend two weeks with my daughter (my daughter's idea). Upon her return I could feel the stresses returning.
If my children were to leave their current lives to help out their old man it would possibly derail the rest of their professional lives. Ulitmately, they will have to take care of one or the both of us, but it needs to be after they are established, at least three or four years from now. I do not believe that the dogmatism of one physician should have that kind of impact upon the lives of 9 people.
On a personal note, I believe that my most important job/function/calling in my life has been completed: I've raised four of the most talented, terriffic, good and decent people I've had the pleasure to know. My oldest daughter has no guile. She is brilliant. A concert level pianist and a doctoral candidate (victorian liturature) at Brown University. She makes quilts and gives them away (she spent two years making one for us). A champion swimmer. Tall, blonde, blue-eyed, Sweet. My next daughter a beautiful singer. A master's degree in English. Champion waterpolo player. Mastered the piano in her big sister's shadow. Her most incredible talent is writing. For a sample you could go to "Feminist Mormon Housewives" web blog and read "to the lighthouse or Hell's angels" (I don't know how to insert a link). She holds a very responsible and high position at a major museum in New York City. She has met presidents of at least 5 countries and negotiated gifts with the heads of major government agencies. She also has a debilitating disease that could make her end up as her mother. Both my daughters' husbands are in the final year of completing thier Ph D's. My first son was one of the country's leading high school baseball prospects. Like many littly boys his dream was to play pro ball. He always thought of himself as a baseball player. School was something you went to so you could play baseball. And he could hit the ball really, REALLY far. but He refused an offer from a major league team to accept a full scholarship to Stanford University and to spend two years in volunteer service to his church in Australia. Upon entering Stanford he immediately suffered serious knee damage and subsequent repair. His first year at Stanford he carried ninteen credit hours, endured the three surgeries, two hours of rehabilitation and six hours of baseball practice daily (he couldn't practice, but he dressed and attended, shagging baseballs or raking dirt, whatever he could). The Dr. told the coach my son would never be able to play again, but my son wouldn't believe it. He played baseball that following summer in Ohio where he lived with the team in a warehouse. His next year at stanford the coach wouldn't play him except at the very end of a game--sometimes (the coach was afraid he'd damage his knees again). He got to the plate only 12 times that year, but he was drafted by the Seattle Mariner's Baseball team in the middle rounds. My son told them--"thank you, but I need to finish my degree at stanford, and the bonus money in this round will not pay for that". The next year he got to the plate only 37 times. By the end of the year he had only 9 hours left to get his degree from Stanford. The coach told him he was still afraid to play my son, so my son left stanford for the University of San Fransisco. He transferred his last 9 hours to Stanford to get that degree. Three days before the season started he ruptured a disk in his back that ended his baseball dreams. USF offered him an assistant coaching position, but he told them he needed to get his law degree. My last son, only 22, is beginning his 3rd year at Columbia University, again on a baseball track. He declined an appointment to West Point, again to serve his church in Chile for two years. He was only 8 when his mother became disabled. He has been my biggest assistant in careing for my bride for the last 14 years (except for those when he was in Chile or while in New York at school). These are truly extraordinary people. The first three are married and their spouses are every bit as impressive.
I apologize for the long and personal narrative, but I believe that my job, except for enjoying whatever time I have with my wife, is done. All I need to do now is to out live my dear wife. By looking into my family you will see that in good concience I cannot impose upon my children in either their schooling, careers or health. How could I say to my oldest, "you and your husband need to change your plans in the last year of your education and come and help me". Or to my next daughter, "sacrifice your career, your health and your husband's final year in school to come and help me". Or to my oldest son, "hey, you were cheated out of your biggest dream, so now I'm going to ask you to give up your next dream to come and help me". Or to my last son, "sorry, you've got to delay your own life a little longer to take care of me and your mom now". Sure, I had hoped to spend many years visiting my kids in their lives, but that dream ended with my wife's diagnosis. We have rafted the Grand Canyon and explored deserts in a four-wheel drive, snorkled in the atlantic ocean and eaten the most wonderful mexican food in San Diego. If I can spend the remaining years my wife has in good health, then they will be happy for her. After that--then I can move close to one of my kids and let them worry about me then. Not now.
Again, sorry to ramble. I'm just not used to being the one in need and it makes me want to get a lot of stuff out. I've always been the one to handle things--death, illness, business issues, estate settlement--you name it, I've likely dealt with it. This bugs the Hell out of me. The doc's are supposed to see things my way and tell the insurance company to do what I want. My inclination is to find out who is in charge and to "read to them from the book" and get this fixed. Trot out that cobalt and let's get this done. ARRGGG. I'd better stop.
Anyway Betsy, thank you again. All you folks are great. You likely know what I mean, but I've got to say it. You give me the outlet I need to vent, and you have provided so much information that cannot begin to imagine how I would have learned so much so quickly without you.
Thanks,
Dan
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Dan, I could feel the pride in your post! And no wonder; your kids turned out great. I bet Thanksgiving dinners at your house are fascinating. Thank you for sharing that with us. As they say, "the nut doesn't fall too far from the tree".
I've got a few years on your kids though. My formal education and marriage were far behind me when I made my decision to move closer to home. I remember thinking that none of my accomplishments would stand the test of time, but I could make a difference in the lives of my parents. But would I have made the same decision if I had been in my 20's rather than my 40's? I'm not sure. I like to think that I would have, but who knows?
Just read "Hell’s Angels, or To The Lighthouse" with tears in my eyes. Your daugher is gifted and her writing touched me, especially the line "A Mother’s light still shines in frailty." It made me think of my Dad, and how his light was brighter than the dementia.
Don't let one doctor's opinion derail you, keep collecting information and you WILL find the right approach for you. Let us know what the radiation doc says.
And with that, I'm headed outside to marvel once again at how quickly my garden has grown in only one week, and to pray that the garden is the ONLY thing around here growing!
Betsy
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Just to update:
I got news today that my insurance company has approved FSR/CK/GK for me. I've an appointment with "THE GUY" in town next tuesday. It is my understanding that he zaps about 10 tumors each month (various types). I will have many questions, but unless he is handing out white canes with each treatment, whatever he recommends will likely be better for me and mine than the micro surgery. It is interesting the range of emotions I'm going through. Little things have nearly brought me to tears. I've sought some support to take some of the stress off my life--things I'm used to dealing with daily. I just don't have the emotional energy anymore. Anyway, next tuesday I'll have my answers, I'm also scheduled for a raise at work on the same day. B-) Cool.
Dan
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Dan, that's good news about your insurance company, but the better news is that you have some help with the everyday stuff. The smallest things can become overwhelming...especially when there are so many of those small things! Congrats on the raise, too!
Will be thinking about you on Tuesday. Let us know how it goes.
Betsy
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Best of luck on your appointment Tuesday.
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Dan,
So glad to hear your insurance will cover radiation procedures. I had FSR 25 treatments. I gained 30 lbs during treatment. go figure. Each week at weigh in the nurses would laugh. Ironically, when I watch a romantic movie or a news story which is sad, actually anything emotional I instantly get chills throughout my whole body and head. Good luck with your decision. My prayers are with you.
P.S. I lost those 30 lbs mema
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Betsy, Ellenmn and Mema:
Thank you for your kind words and thoughts. I find that it is too easy to be selfish about this situation we find ourselves in. I am talking about me. I have not posted my "best wishes" to anyone else here and yet so many folks are keeping me in their thoughts and prayers. I'm ashamed of myself.
I suppose this is the result of suspecting I had this for the past 25 years. I used to be an audiologist. The most important thing I looked for in testing a patient was a unilateral hearing loss. When one began in me I went to a colleague for an evaluation but they found nothing (before MRI). So for the next 20 years I wrote it off as my being exposed almost daily to wind in my left ear (I drove an open top Land Cruiser). After I no longer was exposed to the wind the loss continued to worsen and I pretended there was nothing serious, after all, I'd had it tested and there was nothing to report, right? Deep down I knew what this was, but when I was in college these things were practically a death sentence. So I pretended. Then when I could ignore it no longer I went to a real doctor and here I am. So, while most of you have been through the surgery/treatment or have just found out you have something and are learning what it is, I've been worrying about this since 1981 or 82. I guess that is why I'm so selfish about offering my best thoughts, wishes and prayers to all of you, I feel somewhat embarrassed. But I do wish you all the best. I look forward to the day that there will be no need for any open surgery for these things because of the side effects and the devastation that can come. I am anxious for the day when "Dr. Crusher can do the heart transplant in JeanLuc Picard by passing her medical tricorder over him". I'm usually quite brave and stoic, but this has un-done me. Again, I think, from worrying about it for so many years.
I do feel fortunate (today) that I, in all likelihood, will not go under the stainless steel knife. I know that my life is about to change. I guess I'm waiting for the time that I can post a response to a "newbie" to be of good cheer, seek the best consultations and know that there is almost always a 2nd choice if you don't like the first one. That I went through it; that a Dr. told me he was going to operate and told him "not so fast, Chauncy". Consider how you want to live. How are you needed? Don't panic, it's been there a long time and a few more months won't make a bit of difference--unless you carrying around a golf ball in you head.
So, again I wish to thank all who have extended their best wishes to me, and those responsible for this site for providing the quick access to the information I was looking for in my search for answers. On this Memorial Day I also want to thank all of you who have served our country and or have lost someone in the service of our country.
Thank you, again.
Dan
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Ah Dan,
I think there are a few of us here who "knew" we had a tumour (An) but, truly, it isn't until we have it confirmed that the fact sinks in... and in my case I was relieved (along with the shock of having that confirmation and besides now I could actually "do" something about it) .....
Like you, my first news about what to do about it was surgery and a : "which doc do you want to see pls." asked the neurologist who found it.......i find it interesting and gratifying that, in between hearing about the An from my gp (a Friday) and the day i had my followup re the now-old-news about the An on the Monday with the neurologist, I had that whole weekend to burn up my line and search the net. So when i sat down to hear what the neuro had to say, I had already read tons of stuff about Ans and choices. When i asked the neuro about radiation he said that wasn't available to us. (he didn't do that op but would send me to one that did... But when I saw the neurotologist in a couple of days (who does An surgery), he said i could have fsr or GK too and promptly sent me to the people who did those. I had all options offered. I ended up doing fsr 25 and now it's heading to two years since i got the diagnosis and I am a year and a half post rads. Mine was also about 2 cm. It's stable. I would choose the same thing now.
I'm glad to hear you have this option.
We all spent our first weeks reading and tapping into sites where we could get as much information as we could if we had the net(unless of course we had no choice in the matter) so it's "normal" to be absorbed in all that. Don't forget to relax and have some fun too as you continue with your decision making process! :)
all the best,
W.
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Good luck tomorrow Dan. If you like this doctor, and like what he/she has to say, you will feel a huge weight lifted off of your shoulders.
Please don't feel bad about not giving anyone well wishes on here. You are still in the decision making process so that should be the least of your worries. We have all been there. After your treatment, my guess is you will be the first to welcome the newbies and offer your shoulder and advice.
Take care, Kathy
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Hi All:
Well, today was interesting. To start off with my wife's lupus flaired over the weekend so the first order of the day was to get her to her Dr. and get that under controll. Then I went and met with my boss and we had a great meeting where I was rewarded with a raise and an invitation to help him plan for expansion and so forth. After which he took me to lunch at my favorite mexican food resturant. Then it was home to pick up my bride of 34 years and off the the radio surgeon. A delightful man. Kind of reminds me of what Uncle Fester must have been like as a younger more human individual. This fellow used to do micro surgery and then got interested in the radio surgery/therapy and has done about 500 of them. He gave us the pro's and con's of each type of proceedure; micro, CK, GK, FSR, wait & see. Obviously, if you've read this thread, I have ruled out the micro and have already done the "wait and see". His feelings for the FSR or Single dose are mixed. He felt that the single dose would be the least disruptive of my life and that any side effects such as numbness, tingling, headaches etc are as likely in one as the other. As to the AN becoming a cancer: He said he was at a conference last summer where this was discussed and that there were reported 6 cancers from hundreds of thousands of irradiated patients. Only 2 of the six were shown to come from the AN. I think I'm leaning towards the single dose. He also said that in europe the radio surgery/therapy is the standard treatment, and that open surgery is only done if the presence of the tumor is a danger to other structures. I asked him why anyone would want someone wandering around inside of their head with a brace and bit and a butter knife when radiation is available. His response was that sometimes the size and location dictate removal and other times the patient just wants the thing gone. I just want mine dead and I don't want to spend weeks learning to walk, talk, swallow and blink. I did not see a rack of white canes to be given out to patients of radio surgery so I felt that he knew how to hit what he was aiming at. He agreed that he did, and promised me that he hasn't blinded anyone yet while aiming at the ear... He gave me his cell number and asked me to call with any questions. He would set up an appointment with his co-raygun Dr. if I wanted to get more detail. He suggested I take a day after to rest up and let the swelling from the Halo subside before going back to work. He made my wife feel good. My wife doesn't like Dr.'s--She was a medical technologist in a major hospital blood bank until she became ill and knows too many primadonna's. She liked this guy. How can you not like a Dr. named Larry? I believe I've made up my mind, now I just have to get up enough courage to "pull the trigger" and take the step that will, in his words, "give me a 50/50 chance of keeping what hearing I have in that ear". There is something kind of final about taking a step that will likely change the rest of your life, irrevocably. Gulp. :-\
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Hi, Dan:
It appears as if you've decided on your preferred method of treatment (radiation) and are almost set on the doctor to perform it. Thats real progress and I offer you my congratulations on coming this far under the stressful conditions you've had to endure while making these very important decisions. Good to read that you wife is 'on board' and that your job is going well, too. So far, so good.
Due to the size of my AN tumor, I didn't have the luxury of opting for either surgery or radiation. Some of us don't, as you know. Had I been given that option, I certainly would have chosen radiation - for all the obvious reasons. Still, I enjoyed the blessing of having a very experienced, relatively humble and caring neurosurgeon who offered me the option of surgery to reduce the size of the tumor, then radio-surgery to kill the tumor's DNA. He recommended this approach to save my facial/cranial nerves from damage - and it worked. My mature (older than me) neurosurgeon worked in partnership with a relatively young radiation oncologist. The radiation guy was also very good at his job and respectful of my concerns regarding nerve damage. Here I am, a year later, about 98% back to 'normal' and able to honestly tell other AN patients that there really is life after AN surgery - or radiation - as I've successfully undergone both and I'm still here to talk about it, as it were.
You are correct that, even with a totally successful outcome, you're about to pull the trigger on what will be a life-altering event. That cannot be helped. I didn't have a lot of choice due to the size of my tumor. It all happened so fast - barely 4 weeks from the initial diagnosis to my being wheeled into surgery - that I felt like a passenger on a very fast train that I couldn't get off. However, through it all, I never lost sight of the fact that I had to do this (the neurosurgeon was clearly alarmed when he saw my MRI). Fortunately, my wife of 36 years, although she has had numerous surgeries for spinal problems and has other medical issues she has to cope with on a daily basis, was my rock, my advocate and my friend throughout the entire process. She was with me from the first doctor visit and, following my surgery, spent 3 days in the ICU, sleeping on a couch in the nurses lounge. I deeply appreciated her loyalty and understood her concern. She's since confessed that, for a brief time during this period, she was afraid she might lose me. Fortunately, that wasn't God's plan and we're probably closer now than ever. A crisis can have that effect.
I believe your probable choice of either CK or GK is perfectly logical. I trust your final decision will be made with confidence. I'm sure you'll do just fine. I know we all wish the best for you, Dan, and personally, I'll keep you in my prayers.
Jim
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Jim:
thank you so much for the kind comments and offers of prayers. As a person who firmly believes in prayer that means a lot to me. I have been in kind of a panic mode since the diagnosis, which is not at all like me. I'm usually the guy pouring oil on the troubled water. But this just came out of 20+ years of private worry about this. I suspected exactly what it was so long ago, I was just afraid to have it confirmed. So I guess you could say I took the "watch and wait" approach. In hind sight I do not regret not acting on it, for I view it as 20+ years of being whole and strong during some very busy, stressful and demanding years. This doesn't even begin to address the subject of available technology during the 80's. Sure radio surgery was being preformed, but back then most of what was going on was the open exploratory surgery. There was no internet for convient research and forums such as this. I'm sure that in another 20 years some one will be waiving a tricorder over my left ear and restoring my hearing (dream on). I'm very happy that you are doing so well. When I read of others' difficulties I imagine me in their positions and I just can't seem to understand how I'd cope or get through it. Like my wife said last night, "If I could have looked into the future when I was young and healthy and could see what was coming I think I would have died of fright". Well, it's time to round up my bride and visiting children and head out to dinner. Yum--The best hamburger in the world awaits me.
Dan
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Update:
I'm scheduled for Radio surgery for the 14th of June. I go in the evening before for the pre-MRI then come back early the next morning (the 14th) where they will attach my halo and dust off their ray-gun. I'll go watch a few old episodes of Howdy Doody or Sky King then they will give me some happy juice and bolt me to the table. The doc will stand back and say "Ready, Aim, FIRE". The handkerchef drops and the damn thing is executed!!! Sure, I'll carry its corpse with me as a reminder of how precious most life is, but I shall not lament its passing. I suppose the next year or so will be a time of apprehension and experiencing new and exciting sensations... Wifey is worried that I will slowly turn into a weir-wolf or something, but I told her if anything happens it is likely to be more along the lines of accellerated aging...or turning into a weir-wolf. All seriousness aside, this is a bittersweet time. I've gotten what I wanted, but the reality of the future becomes more clearly defined. I am entering a new room that I cannot leave and I don't know what is in that room. I guess I wax too philosophical. Ok, it's Saturday, I'll go watch some more of Norm Abram building a table.
Ta Ta for now,
Dan
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Wow! Dan, you sure do move fast! I envy your decisiveness and wish you well. As to the changes you may experience…who knows what the future holds with or without an AN? Better plan on staying home for the first few full moons though, just in case.
How was that hamburger?
Betsy
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Hi all:
I just returned home from my 2nd MRI. In the morning I go back to the hospital and they bolt the frame to my noggin. They tell me that they will give me some kind of sedative. Anyway, they are going to do a CT and then "the guys" are going to take the MRI and the CT and lock themselves in a room and throw darts at the scans until they find a pattern they like. They plan on taking a few hours. After that fun, they say they are going to bolt my head to a table and aim their phasers at me and start pulling the trigger. I should be home by 1-2 pm. I'm taking Friday off work as I don't really want to appear with bandaids on my forehead and a set of raccoon eyes. Oh, ain't life grand. Well, thank you all for your good thoughts and wishes, I will carry the knowledge with me that so many are sending their good thoughts and prayers into the ether. And Betsy, the burger was fantastic. If you are ever in Salt Lake you want to eat the Double Big 'H' at Hires. My very best friend and I used to go there every month--original car-hop type drive in. One month he said he couldn't make it. Two months later when I called to set up our lunch date his son told me he had died. The SOB had a particularly vicious form of leukemia that killed him in just a few months after it was diagnosed. He didn't bother to tell me. His Best man. I introduced him to his wife. We used to run together. He taught me to do stained glass. I ramble. The reason for the ramble is that experience with my friend taught me to always thank those that mean something to you in case you never get to see them again and they need to know that they were important to you. You folks, although we've never met, are important to me. So all who have posted to me, thank you. You are important to me.
Dan
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Hi Dan,
Wishing you best outcomes (and very little holes in your head :)). Will keep my fingers crossed!! Hugs to you and your wife.
Flier58
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DAN
Best wishes, I sure it will go great. :)
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Good luck to you Dan!!!
The "Postie" world welcomes one more!!!
Kathy ;D (http://;D)
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Hey, Dan:
I trust your radiation went well and you're on your way to a rapid, complete, uneventful recovery. We care, so please let us know how you're doing. Thanks.
Jim
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I'M A POSTY!!!!! ;D ;D ;D ;D ::) 8) 8) 8) 8)
All went well. I arrived at the appointed hour and was "admitted". I got to spend about 1 hour talking with the Radio surgeon and the radio oncologist. They started the IV and I told a stupid joke and the next thing I remember was awakinging on a bed with the head frame on--about 3 hours later. They had done the CT scan and then compared it and the MRI from last night and programmed their ray-gun while I was out. They put me into a wheel chair and took me to meet the "HAL 2000" (novalis linac). I lay down and they bolted my head frame to the table and ran for cover. For the next 10 minutes it made a whirring noise and moved three times. They unbolted me wheeled me back to my room and removed the halo. Nursy put bandaids on the forehead pin holes and I left. I didn't even have to put on those lousy hospital gowns. I came home and took a nap as the sedative they gave me was still making it's influence known. I got up and made dinner, called my kids and my brothers, forwarded the photos of me and my halo to close friends and loved ones and watched the "Pirates" tv show, and overhaulin. Except for some minor bleeding from my scalp wounds I don't feel any different than last night. The doc's agreed with each other that I'll have about a 75% chance of keeping the hearing I have and a slight chance of some additional loss or even some gain. The facial nerve involvement, if any, will be very slight and transient. They say there are not likely ;D to be any balance issues. But of course, now it is just a watch and wait. I'm happy. I've returned some business calls and plan on takiing my wife to see Oceans 13 tomorrow and back to work on Monday.
I will certainly keep haunting this site and reporting any, if any, changes or side effects.
Again, thank you all for your best wishes, prayers and advise. I have to say, I'm sold on the radio surgery. These guys do about 3/week. They were great.
Postydan
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Welcome to the other side Dan!!!
Have a stress free weekend!!! :D Kathy
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Congratulations, Dan! May your AN die a quick and event-free death now that it's been zapped. Please keep us updated on how you are doing!
Katie
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Congratulations, Dan!
I had a feeling the radiation procedure would go well for you and I'm so pleased to know that it did. I believe in prayer. As you know, I underwent invasive surgery (retrosigmoid) plus radiation (FSR) last year - and did just fine. I also had many, many people praying for me, both locally and nationwide, thanks to the internet. I know that you did, too. That's a powerful thing that we're blessed to have, for those of us who choose to avail ourselves of it.
Don't overdo it but enjoy your 'postie' status along with the rest of us in that (usually) pleasant situation. :)
We'll look forward to seeing your 'progress reports' here as you move forward.
Stay well, my friend.
Jim
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CONGRATS DAN-YOU MADE IT OVER A BIG HURDLE! HOPEFULLY, IT WILL BECOME DOWNHILL FROM HERE! BEST WISHES! NEAL
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Yea Dan!!! Congratulations!
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Hi Gang:
thanks for all the comments. I'd thought I'd give a report on the day as I went back to work today...5 days after. My first appointment was at 7:15am. By noon I'd had two more and made several phone calls. The afternoon went about the same. I knocked off about 4:30pm and came home. At 5:30 my son (home from college for the summer) went to his summer league baseball game. That ended about 9:30pm and on the way home we stopped at Arby's and got dinner ???. I got home and watched the season opener of 'The Closer' with wifey. I put her to bed and watched an hour of a kitchen remodeling show and here I am. Yeah, I'm a bit tired, but I want to be exhausted tonight as last night I couldn't fall asleep until after 2am. I don't have such an early morning tomorrow so I can still get about 6-7 hours tonight. I feel good. No problems other than the top right half of my head is numb (i think from the halo screws, "super Novacaine" and swelling)--Hey, I'm officially a numbskull!!! Seriously, the only thing I feel is the swelling and tenderness related to the halo. I keep thinking what a wonderful thing this radio surgery/therapy is. I visited the HR lady at work this morning to thank her for her help with the insurance company. I walked into her office and asked, "Do I look like a guy that just had brain surgery?". What more can I say?
Well, onward and upward. I will periodically report anything or nothing. Thanks again all. And to those looking forward to your proceedures--fear not, know all your options and choose that which best suits you. I know I don't have any 'final' outcome yet, but at least I've bought another year, and according to my Dr.'s--this dosage/proceedure is nearly foolproof and they insist they are not fools.
Good night all,
Dan
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Glad to hear things are going well for you.
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Hi Dan, are you out there? Just wondering how you're doing!
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Sorry to be absent for so long. But nothing was happening to me and My wife took a turn for the worse I kind of forgot about myself. I had my six-month evaluation. I had my hearing tested and my speedh discrimination scores had gone from 90% to 0%. my hearing levels had decreased to the 50-70 dB range. The distortion was so very bad that I couldn't make out what I was hearing. The results of the MRI showed about a 3mm increase in size but NECROSIS. The doc's felt that the increase in size was either due to swelling or a silghtly different "slice" of the tumor. They couldn't be sure because they were going off the MRI report from a different hospital and they couldn't open the file on the disk I brought them. Next time I'll insist to my insurance company that I get the MRI at the same location as my Dr. I noticed a tiny bit of unsteadiness in the past 3-4 weeks. Nothing permanent, no spinning, just kind of a vague disorintation. So, there is nothing else to report.
thanks to all. I vote for Radio Surgery whenever possible.
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Hi all:
It has been one year since my Radio Surgery. Time for a report. My 1-year MRI showes "significant necrosis". The doc's say my AN has actually shrunk since December. I haven't had my hearing re-tested yet, but I'm not getting anything useful out of my Left ear. I have noticed less energy, but that is likely a function of age and lifestyle. Since my Radio Surgery the brand new MAJOR medical center about 3/4 of a mile from my home now has a Gamma Knife and a hospital across town has a Cyber Knife. So now there are three major centers in my little town with all this technology. Well, since I have no symptoms beyond hearing loss and some very minor unsteadiness in the dark, I have nothing to report. Of course I should never be the final word on open surgery VS Radio Surgery, my experience has been absolutely marvelous. I've missed one day of work due to the proceedure and I took another just to make sure all was well. I had a few months where I'd get moments of minor vertigo, and lost ability to understand speech in my left ear. But no other difficulties. The thing is dying and my life has had very minor adjustments due to hearing loss. I try to sit where no one is to my bad ear and I don't use a blue tooth device with my cell phone. The first surgeon I saw wasn't even going to tell me about the radio surgery option, and after I brought it up he tried to talk me out of it, saying I was too young. I interpreted that as meaning I was young and healthy enough to have a decent chance of surviving the surgery. I hate to think how this past year may have been if I'd allowed him to open me up. But, each circumstance is very different. Something else to consider if you are newly diagnosed and you have the "wait and see" recommendation. I first suspected this thing about 25 years ago. If you've read this whole thread you may recall that I used to be an Audiologist. I noticed the hearing loss in 1983 or 84. That was pre MRI (at least in my town) and the literature from my college training was grim at best. One of my associates ran the most advanced battery of tests available to us then and found no evidence of anything. But I noticed the hearing steadily worsening, but so gradual that I just figured it was my genetics--with good cause. But when I began noticing my hearing leaving me in "chunks" I began to worry. But it still took me 6 years before it got to a point that I knew I needed to get it checked and that was about 15 months ago--MRI found my <2cm AN. Thanks again for all who inquire and be of good cheer if you are awaiting treatment.
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Thanks to you Dan for taking the time to pop in and update us.
Necrosis is wonderful (see my signature) and the fact that after-effects from the radiation were relatively mild is very encouraging to others. Although my surgery was absolutely necessary and had a good outcome, your account simply verifies that had the option been available, I would have chosen GK or CK.
I was fortunate enough to find a very experienced, compassionate neurosurgeon. Last year, I referred a man who had read my account on this forum, lived in my state and wanted a 'local' doctor. He e-mailed me and we discussed my case and my doctor, whom I greatly respect and admire. When this fellow appeared for his appointment, my neurosurgeon looked at his MRI scan, told him he was a better candidate for radiation than surgery and walked with him down to the office of the radiation oncologist he works with (same building but not the same practice) and had him seen almost immediately. He later chose a different doctor and facility but I thought my surgeon's willingness to make certain a potential patient received the correct treatment was impressive. Now, I'm rambling.
By the way, like you, I ignored my AN for years. Unlike you, I didn't know what it was but I knew that something was going on when I developed unilateral hearing loss, which I explained away to avoid addressing the problem. I consider myself blessed that I came through both surgery and radiation pretty well 'intact'. Well, I have SSD, but that was inevitable.
Thanks again for remembering this site and forum to relay your positive update. Many (with good outcomes) don't bother. It speaks well to your sincerity that you did, and it's appreciated. :)
Jim
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Dan -
thanks for taking the time to update us. I'm glad to hear that things are going well for you.
As you say, each circumstance is different, but it definitely sounds like you are very happy with your choice of radiation and your positive outcome.
Jan
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Jim and Jan:
I see my bookmark for this site each time I log on. I've had nothing to report until my 1-year follow up, so I haven't dropped in. I know that I received a lot of support when I was first dealing with the AN and I hope I can provide some support to others, but being a busy as I am I really don't haunt the net so much. I usually just check my mail and my kids' blogs and do my shopping, housework or building my boats. Perhaps when I retire I'll be better able to haunt the site. Having been treated so wonderfully here and all, it would be quite shallow of me to never come back and offer my perspective, support and prayers to those who are new and feeling a bit "upside down".
Thanks again for your kind words through my experience.
Dan
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Dan, it's so good to hear from you. I'm glad your treatment has been so effective. "Significant Necrosis" is indeed something to celebrate! I've thought of you often over the last year and wondered how you and your wife were doing. There's a new caregiver section on the forum that's just getting started...check it out when you have a moment.
Best wishes to you and your family,
Betsy
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Betsy:
You too have my appreciation for your kindness and encouraging words. We married off our last child a few weeks ago. Right now he is in Philly working a summer internship. He had a 2 day honeymoon at our cabin in the rockies and then he flew to North Carolina to join his baseball team (Columbia University) for the NCAA post season tourney. His bride went to Boston for her Brother and sister's graduations from MIT and Harvard. After the summer is over they will go back to Columbia where he is a senior. His new "wifey" will take two years' worth of classes (also at CU) so they can finish at the same time and get outta town. He will be going to law school, but we don't know where yet.
I must admit that I keep hoping that I'll get some useable hearing out of my left ear. The doc's told me to get a new test, so I'll do that in the next week or so. My boss wants me to use a bluetooth device while driving, but if I do that I won't hear anything outside. If I could at least use my left ear for that it would be some help. We'll see.
Anyway, thanks again for the kind words and encouragement,
Dan
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Dan,
It is good to hear from you! Congratulations on the wedding and the family updates. They are fun to read about. Keep us up to snuff on what's going on!
Brenda
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Dan:
I want to use your pleasant response to me as a springboard to mention something I've wanted to address for some time.
First: no need to apologize for not posting regularly. You had your procedure, it went well and you're just living your life. No problem and completely understandable.
This is an AN support forum. It is intended to inform, advise and generally support AN patients. Most folks who place messages here are 'newbies' - newly diagnosed. Very often they are confused, upset, angry or just frightened and sometimes grossly misinformed. We aim to educate, advise when feasible, comfort and encourage these folks and those who are recovering from AN surgery and/or radiation treatment. Some have fairly serious, troublesome physical and emotional issues to deal with. Some have to do this while simultaneously dealing with insensitive doctors, clueless relatives and others that simply don't understand or care much about the obstacles they're facing on a daily basis as they fight to regain a semblance of normalcy. Well, we do and they receive understanding here.
Those who have surgery and/or radiation and have a successful outcome with few or no complications very often then cease posting because, frankly, they're recovered and moving on with their lives. They don't need 'support' anymore. That's O.K. I don't expect others to continue posting when, like you, they really have nothing to report and are busy with other things, like careers and family. Usually, I consider this as the forums having done their job. I'm pleased that another ANer has had a successful surgery and/or radiation and can go back to their regularly scheduled life, as it were. :)
I remain a regular participant (and now, a Moderator) here because I was very fortunate...blessed, really...to have had a large, fairly dangerous AN (pressing hard on my brainstem) that was successfully debulked (via retosigmoid surgery) and radiated (via FSR). My signature says it all.
I'm a longtime internet messageboard contributor and was a moderator on a hobby forum for two years. I used to spend a lot of time on political messageboards, too. Now, I spend the bulk of my internet time here, on the ANA messageboards. I do this because I had a good outcome, am fairly knowledgeable about AN issues and feel that helping other AN patients with advice, encouragement and empathy is a far better way to spend my internet time than having inevitably futile political debates with folks that will never agree with me, no matter how well written or factual my argument may be. Even my wife agrees with that.
So, here I am, two years past a successful surgery with almost no issues to deal with. Others, like Steve (a fellow moderator and CK recipient) are in a similar situation. I can't speak to other's motives for remaining habitués of these forums, but I assume it stems from a similar desire to help other AN patients with encouragement and support. We 'hold down the fort', as it were.
I've often said that I have no intention of making my AN the focus of my life or allowing it to define me. I don't. To everyone I know, my 'AN experience' is ancient history and I almost never mention it. My wife and I occasionally discuss certain aspects of it, but again, My AN is hardly the center of my being. It was for a few weeks just after my diagnosis and again in the weeks immediately following my surgery and later, my FSR treatments in the autumn of 2006. That was then. Now, I limit my AN discussions to these forums. I mostly discuss other people's Acoustic Neuromas and only talk about my AN when it is relevant and appropriate. As I stated, I don't make my AN the focus of my existence. To be honest, I may not be posting here in five years due to an inevitable waning of interest in discussing Acoustic Neuromas or, perhaps, just a lack of energy and/or time. Who knows?
In any case, I still enjoy trying to help other AN patients. We're a relatively small group and need all the help we can get. I attempt to offer that help, as far as my abilities allow. That folks come-and-go on these forums is fine with me. I expect that. When someone actually pops back in to offer an update after a year, I'm impressed. You owe us nothing Dan and that you remembered the site and boards and took the time to update us and thank us is plenty. I'm glad your life is moving along nicely and that you're doing so well.
I just wanted you and others to know that we appreciate folks like you and why the 'diehards' like me remain regular posters here.
Now, will someone put this soapbox back where they got it? I'm all done with it. Thanks. ;)
Jim
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Geez Jim,
It almost sounds like you're telling me to get lost ;D. Seriously. I receive a lot of support here, much of it just theraputic ranting by me, but also a great deal of info that was helpful in my decision making process and words of assurance from so many of you. I would like to be helpful to others, but I do have significant responsibilities that would prevent me spending more than a few minutes daily here. You know, good intentions. I intend to keep in touch periodically, but sometimes my life gets the better of me and I'm governed by the fires I need to put out. My life sometimes is like playing "Wack a Mole".
Dan
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To anyone reading this:
I continue to recover nicely and have not noticed any further problems. My speech discrimination scores in my AN ear went from 92% in June '07 (pre-radio surgery) to 0% in Dec '07 to 40% in Sept. '08. Two days after the last hearing test, I came home from work and found my wife on the floor dead. There are worse things than having an AN.
Dan
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you have mt sympathy. it has been a rough time for you, to say the least. peace be with you. patti
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Hi Dan ive just been reading all your threads, i hope you and your family are well, like you i got my hearing tested for more than 20+ years and they kept saying it was conductive hearing loss, i went to the doctor when i started getting facial numbness by that time it was over 4.5cm as they say the rest is history. keep well