ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: rodneyd on December 26, 2013, 02:19:59 pm
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Hi all,
I am a 70 year old man recently diagnosed with a small (.9 cm) AN, the main symptoms are loss of balance and some mild tinnitus. I do have hearing loss but the neurosurgeon thought it was due to my age and not the AN.
I originally scheduled micro-surgery (get it out of there) but then reconsidered and now am contemplating radiosurgery. But now I am waffling and thinking about a wait and see approach. My thinking is that I have good hearing now in both ears (other than high frequencies) so why have a procedure that will possibly reduce or even eliminate the hearing in that ear?
I know that the decision is mine, and mine alone, but was hoping someone on this forum could provide some insight and thoughts about my choice of treatment options.
The second reason for this post is that I am currently scheduled to have CK treatment on Jan 8, 9 and 10th at the Swedish Medical Center in Seattle. But before I do, I wanted to have some assurances that Medicare will cover the treatment. Trying to get an answer from them, through their endless telephone trees is very difficult, so I thought I would ask a general question on this forum and see if anyone knows the answer.
Thanks,
Rod
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I am a 70 year old man recently diagnosed with a small (.9 cm) AN, the main symptoms are loss of balance and some mild tinnitus. I do have hearing loss but the neurosurgeon thought it was due to my age and not the AN.
I originally scheduled micro-surgery (get it out of there) but then reconsidered and now am contemplating radiosurgery. But now I am waffling and thinking about a wait and see approach. My thinking is that I have good hearing now in both ears (other than high frequencies) so why have a procedure that will possibly reduce or even eliminate the hearing in that ear?
I know that the decision is mine, and mine alone, but was hoping someone on this forum could provide some insight and thoughts about my choice of treatment options.
I'm 67 now and about 11 months post-gamma knife. When I was first diagnosed (9mm x 3mm x 4mm) in 2012 I was 66 I had already lost 90% of my hearing on the AN side. 6 months later it was all gone and the AN had grown by about 20%. I looked into all the options and decided there was no way I was getting my head cut open when gamma knife was a reasonable alternative. I had my gamma knife in January 2013 and since then my AN has demonstrated the expected necrosis with a very slight swelling, my balance is remarkably improved, and my tinnitus is barely perceptible. In other words, it worked for me. Given your similar age and circumstances I would tend to be optimistic about SRS as a good choice.
My personal feeling about watch and wait is that it doesn't take much for an AN to destroy hearing and once it's gone it's not coming back.
The second reason for this post is that I am currently scheduled to have CK treatment on Jan 8, 9 and 10th at the Swedish Medical Center in Seattle. But before I do, I wanted to have some assurances that Medicare will cover the treatment. Trying to get an answer from them, through their endless telephone trees is very difficult, so I thought I would ask a general question on this forum and see if anyone knows the answer.
I found the following article about Medicare and SRS:
http://www.medicarepaymentandreimbursement.com/2011/10/cpt-61796-61797-61798-stereotactic.html
Note that it is NOT the Medicare website so I have no idea how valid the article is.
I suggest you poke around on the Medicare website if you can't get any answers by phone:
https://www.medicare.gov/
But I suggest you get a definite answer from Medicare ahead of time.
My SRS was paid for by the VA so I didn't have to address the Medicare issue.
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Rod - Medicare covered all my husband's expenses - two craniotomies, a session with CyberKnife, and 30 IMRT treatments (he has a meningioma that likes his head and keeps coming back).
The best one to answer your question would be the facility that will be doing the treatment. They deal with all the insurance companies every day. Call the doctor, his secretary, or the billing department - I bet they'll have an answer right away. Hopefully, the politicians are correct and "Medicare won't be touched"!!!
Good luck and keep us posted,
Sheryl
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Rod,
I don't know much about Medicare because I'm 44, but I too originally thought I would have surgery.
I would think your hospital would be concerned about who is going to pay.
I was so afraid of radiation. After backing out of surgery 2 times, I finally met with a radiation oncologist and he said gamma knife would blow
a lot of my balance and hearing.
He does not do Cyberknife, but he has a Varian Truebeam Linear Accelerator. I'm doing 27 treatments in Madison, WI.
I have 8 more left. The reason he is doing 27 is mainly to be gentle on my hearing and balance. They do this procedure at Thomas Jefferson Hospital in Philadelphia.
Many musicians go this route to save hearing. I found many of them on this website and sent them messages.
They are all doing fine, and I think they all have their hearing.
At your age, I would NOT have surgery, but I am feeling guilty at age 44 for not doing surgery - wondering if I'll die from the radiation instead.
Sandy
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Thank you both for the information you provided, it was very helpful.
I visited the Medicare web-site and they do mention that Radiation Treatments are covered under Part B. However, there is a note below that states (and I am paraphrasing) that the treatment may be more than Medicare covers (or something to that effect) and that I would be responsible for any charges that are in excess of what Medicare covers. Not too comforting, I must say, as my radiologist is talking about five CK treatments rather than one or the three that was originally mentioned, so I definitely need to find out about the Medicare rules before I proceed.
I have an MRI scheduled for Monday and a consultation with the radiologist on Tuesday, so will know more after that. The MRI was originally scheduled (along with a CAT scan and the preparation of the mask) for SRS on January 8. Since my last MRI was done in October, it doesn't seem likely that there will be much change, but you never know. My radiologist now believes there is no hurry to have the SRS done on Jan 8, so maybe now I fall into the "Watch and Wait" category. Will know more next week and will keep all informed.
My radiologist told me that my canal was short and fat (she says this is a good thing), and that about half the tumor was inside the canal and the other half was protruding into the liquid filled pontine angle. The cochlear is up against the tumor.
As a person used to making decisions, this condition has been surprisingly difficult to decide. I find I have run the gamut from micro-surgery to SRS to W and W and somewhere in between.
Thanks again for your comments and suggestions!
Rod
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Hi Sandy,
I was in the process of drafting my latest comment when you posted, so I hadn't seen your post until just now.
Can you share what your symptoms were? Did you have any hearing or balance loss? Tinnitus or Facial involvement?
Since you are pretty advanced with your treatments, have you noticed any degradation to your symptoms or have they stayed about the same?
I keep asking myself, since I really don't have any major hearing loss why am I considering a procedure that could potentially make me totally deaf in my AN ear? I do have balance issues (I did take a BERG balance assessment which evaluates your propensity to take a fall, and I am at medium risk), but I believe they are manageable at this time.
Any way, I am still in the decision-making mode and will be gathering more information as I go along. This forum is definitely a help in that regard, and I thank you for your comment and wish you well as you go forward with your treatments.
Rod
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Rod - just a quick follow-up to the insurance situation - do you have a Medicare secondary? If it is an HMO, that's a whole different ballgame.
Keep us posted and good luck. The roller coaster decision making is the worst part!!
Sheryl
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Hi Sheryl,
My Medicare Insurance is primary, I do have a Medicare Supplemental Insurance to cover those items that Medicare doesn't cover, so feel pretty good there.
My biggest Insurance concern was that Medicare wouldn't cover some of the procedure (for example, if I had five CK treatments instead of three, would Medicare cover that?). In that case, my Supplemental Insurance wouldn't cover it either, and I would be left with a large bill.
I just had an MRI yesterday and will talk with the radiologist today about the results. I am still trying to decide if W & W or SRS is my best option. Will keep everyone posted. Wish me well in my decision making and Happy New Year to all!!
Rod
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Hi all,
My MRI on Dec 30 showed no sign of enlargement. Since I have a relatively small AN, I still have hearing in my AN ear and since my balance issues are not so severe as to be totally debilitating, I have decided to go the "Watch and Wait" route. It has been a difficult path to this decision, but I am comfortable with it and will now relax and just keep an eye on it.
Thanks for all your supportive comments and I wish everyone a very Happy New Year!
Rod
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Hi Rod - thanks for the update. There are quite a few W&W members on this board of which I am one. I have a schwannoma on my 9th cranial nerve (as opposed to acoustic on the 8th). So it's almost the same - very close there on the brain stem. I have done W&W for over 12 years with very little growth and no overt symptoms. W&W isn't for everyone but it has worked for me. I have yearly MRI's as I was told this can show a growth spurt but have already decided if treatment is needed, it will be some sort of radiation.
Happy New Year and keep us updated from time to time.
Sheryl
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Rod -
Once you're diagnosed with an AN deciding on a treatment option is oftentimes the hardest part of the AN Journey (said from experience :) )
Personally, based on what you've told us, I think your decision to W&W is a great option for you at this point in time. As you say, your AN is small. Plus it's important to remember that most ANs are very slow growing; and most grow even slower as we age.
Since your symptoms are something you can live with (you mentioned not severe enough to be debilitating) I think you're wise to wait while monitoring your AN. There are lots of people on the Forum who have been W&W for years. I'm hopeful you'll enjoy that same longevity.
Best,
Jan
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Hi Rod,
I agree 100% with everything Jan has said. I wish you well in your journey and that your AN remains quiet, causing you no further trouble.
I have never struggled more in making a decision than I did with choosing to treat or not treat my AN once it was diagnosed. At age 59, I was hoping my AN would be slow growing and something I could also W+W. In my case, my AN grew from 1.8cm to 2.4cm within the year after diagnosis, so I did not feel W+W was an option. I had Gamma Knife this past Sept. and am doing great all things considered. So just a word of caution from my personal experience, do make sure to follow up regularly on the status of your AN. They can grow without your symptoms changing and your symptoms can change without the AN growing which makes the entire process interesting to manage.
I wish you good health and all the best for 2014!
Cathie.
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Rodneyd has probably found out already the answer to his original question about medicare coverage so this post is just for the benefit of newbies lurking on this forum who may have the same question. YES, medicare covers stereotactic radiosurgery. It paid for all my CyberKnife sessions. Patients also do not need to be concerned with how many sessions will be involved in the treatment either. The most important thing is to get treated at a facility and see a neurosurgeon who accepts medicare assignment (most hospitals and physicians do). Physicians who accept medicare assignment must accept whatever medicare pays them as payment in full and the patient is not responsible for any balance not paid by medicare except for copays and deductibles. These can be covered with the proper medigap plan.
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John - great answer - thanks for following up and posting. The more I think about the insurance situation, the more I wonder how I could have done medical billing years ago. Ah, yes, I was younger and it wasn't as complex!!!
Sheryl
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Thanks everyone who posted about my insurance question. I appreciate all your responses.
As John said, if a facility accepts Medicare (as mine does) then they will only be reimbursed at the rate Medicare will pay.
I am now on my 5th month of W & W and am doing fine. No noticeable change of status with my balance, tinnitus or hearing.
Does anyone have a recommendation as to how long to wait until my next MRI?
Thanks again, and good luck to all the great people who post on this forum. I couldn't have gotten along without you!
Rod
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Rod ~
An annual MRI is typical in W&W cases, assuming your symptoms don't increase. Using that time frame you should schedule the next scan for January, 2015.
Jim
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Rod, one usually waits 6 months for the next MRI and if there is no sign of change, then yearly. One thing to keep in mind, however, Dr Chang says the absence of symptoms or any worsening of symptoms does not necessarily mean change is or is not taking place. A non growing tumor can cause just as much problems as a growing one and a growing one may be aymptomatic. Since most ANs are slow growing, it is often safe to wait for annual followups but these critters are sometimes unpredictable so a certain amount of risk is always involved.
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Rod - I have been on W&W for 12-1/2 years and asked my doctor at a highly regarded hospital in Boston if I could extend (rather than yearly) my MRI's as I've had such a good track record. He said these types of tumors are unpredictable, and I could have a large growth spurt. Also, there may be no symptoms to go along with the growth spurt.
Keep us posted,
Sheryl
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Thank you so much for all who posted about my insurance question.
My Radiation gal at Swedish Medical Center in Seattle is recommending the first MRI be at 6 months, which would be around July, 2014. I will be setting it up and will keep everyone posted as to the results.
Your thoughts and prayers were so supportive and gave me some peace with my W & W decision.
rodneyd