ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: JennyMac on March 22, 2010, 02:12:05 pm
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Hello, what a helpful and knowledgeable group you all are. I've been lurking for a few days, and am still thoroughly confused - not the fault of the group at all. Darn, it seems everything I come down with is chronic . I'd certainly settle for just a cold these days! :P
I also have chronic sinusitis, tinnitus, and some various other fun things. My hearing loss in my affected ear is almost 70% - at least. I haven't had an audiogram in several months. I also have had some swelling in my brain (apparently unrelated to the AN, or so the neurologist said) and have been on Decadron for almost 2 months to help with what were debilitating headaches. They are much better, but do pop up at times when I TRY to get some sleep, laying down can cause extra pressure is what I was told. Ugh, Decadron is the worst! Now I know why sleep deprivation is used for torture!
I have leukemia (CLL, W&W status, thank goodness). Due to this, I'm not a candidate for any kind of surgery - which I doubt I'd opt for anyway.
I have an AN a bit over 2.5cm (and apparently growing) AND a meningioma on the same side, very low, that has been deemed to be quite old. The doctors - of which I've seen so many I've lost track - all have different suggestions as to which radio to use (I truly think there is a conflict of interest in this - they suggest whatever they have access to, it seems). Except for Dr. Alksne who is presenting all sides. All the docs want to take care of both tumors at the same time, which makes sense.
Dr. Alksne at UCSD and Scripps is wonderful, a throwback to an earlier time. He's like my childhood doc when it comes to follow-up. I consulted with him and Dr. Murphy at USCD. Dr. Murphy, originally wanted to do 5 treatments of Trilogy and now doesn't feel comfortable with any less than 28 days. Not that he called me. He's all but impossible to get in touch with. I had my labs, the MRI, CT scan and the mask fitting done the same day as my meeting with him & his team.
We live over an hour away, I'm lousy at driving these days and my husband has several conflicting commitments. Of course, he agreed to support me in whatever decision I made. Ha, although driving with him for that many days might end in divorce court (just kidding). I am not up to staying in a hotel or with a close by nurse friend, as I am much more comfortable at home psychologically. I also handle all the finances (scary with my brain these days, I know) and need to be here to take care of that in addition to other stuff. My husband got laid off and has been looking for another job, plus he has to see various doctor's himself for some of his issues.
Now the original neurosurgeon, Dr. Spicer, another super doc here in Murrieta, CA affiliated with UCSD, that originally referred me to Dr. Alksne called this morning - actually his nurse - and he thinks I should go with Trilogy. Dr. Alksne called a bit ago, and thinks I should go see Dr. Hodgens at Scripps (not in my insurance network, but a moot point to me now). He went over my films with Dr. H this morning. Scripps has Gamma Knife and also CK in a different (closer) location.
I was scheduled for GK back in the fall with Dr. Hodgens (through yet another doc), but something just didn't feel right about it in my gut, so I didn't go through with it. However, I now just want to get this OVER with, big time. Preserving what little hearing I have left just isn't a major issue with me, odd, I know, but that's the least of my concerns, at least to me.
I hope this isn't an overload of info. Again, I need sleep in the worst way - at least that's my excuse and I'm sticking with it. ;) I'm cutting out the Decadron for the next few days to see how that goes. The trilogy doc wanted me to stay on it for the entire treatment time. But since I'm not even scheduled as of the moment, I figure a few days break might help.
Any advice or encouragement or experiences would be most welcome, as I need to decide quickly what to do. Argh!
Thanks for reading my ramblings.
Best to all,
Jennifer
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Hi, Jennifer - and welcome. I'm sorry to learn of your many medical challenges but I hope your presence on the forums will encourage you and generate pertinent suggestions and advice.
Your situation is complicated and, although it may not be elegant, my advice is to 'go with your gut' when it comes to choosing a doctor. You've erected some barriers that may narrow your choices but I trust that between other poster's suggestions and your own good instincts, you'll find the doctor and form of irradiation that's best for you. Whatever you chose, we'll support you in whatever way we can - because that's what we do here. I wish you all the best as you continue to seek answers and move forward with your necessary AN treatment.
Jim
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Well, a bit of a bump, but this whole ride has been a bumpy road! ;)
I've finally decided on CyberKnife (in San Diego). I met with the doc on Friday and was very impressed - he spent almost an hour and a half with me. What I really like is that they are going to treat the AN and ignore the meningioma for now, as it isn't that pressing of an issue (no pun intended). That was comforting as it will reduce the amount of radiation that could occur between that and the AN. First doc to suggest that, which makes a lot of sense. My "examination" went well, though I already have a balance issue.
Ha, the one foot walk in front of the other would make me fail a drunk driving test for sure! And I don't even drink. Or for that matter, drive much, since car noise, hearing loss and this darn Decadron I've been on for brain swelling (not due to the AN) has seriously caused problems when it comes to getting out and about. I CANNOT wait to be off the med!
The next step is dealing with the insurance company and my Medicare Advantage Plan. I'm sure they are tired of me and all my MRIs, CT scans, etc. Believe me, I'm tired of them also! Since I'm on Medicare (for another disability, not for age), they can't bother with you as much as if it was private insurance plan. The co-payments will be crazy, however that's just the way it is.
Making the decision is a monstrous weight off my shoulders as it seems to be for everyone. I'll post again when I have my date and continue reading until then.
Best to all,
Jennifer
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Jennifer~
Thanks for the update - and congratulations on choosing a treatment & doctor. One of the hardest parts of your AN journey is now behind you. I wish you great success with your CK.
Jim
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Jim, thank you for the encouragement, much appreciated. I'm very optimistic about the treatment plan.
Take care,
Jennifer
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FINALLY, my insurance came through and I'm having my MRI and CT scans along with the mask made on 5/12. Then the plan takes about a week and then I'm on my way! Whew, I'll be so glad when this is done - side effects or not. It's been all but impossible to schedule any other needed appts until I found out about this. Was going to put my appt on the calendar, but it looks pretty full that day. ;)
Take care all,
Jennifer
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Was going to put my appt on the calendar, but it looks pretty full that day. ;)
I squeezed you on anyway. :)
Congratulations on jumping through all the hoops. Now just relax and let it happen.
Steve
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Thanks so much - truly appreciated!
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Jennifer - I read with interest your original and follow-up posts as both my husband and I have weathered through some serious medical issues. Wanted to wish you luck and, yes, the decision making is one of the most difficult parts of the "journey".
Hang in there and keep us posted,
Sheryl
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Bit of a bump. Had my first CK treatment today. Fortunately, I only have to have three! And better yet (I hope), the time was only 23 minutes. They were great at keeping me update on how much time was left periodically. I was SO nervous, but feel better now. Although I had my headache for brain swelling (unrelated to AN) before I went in and now the headache has moved to the radiation side. I had some Vicodin tucked away, but doesn't seem to touch it. Not sure WHAT doc to call about that at this point.
My chronic sinnitus also was acting up, so I was a bit nervous about breathing through the mask, however it wasn't an issue. BTW, an Olba's herbal inhaler is awesome. Oh, well. I have high hopes that this will all work out. Somehow. The CK place in Vista, CA is fortunately being covered by my insurance, however the place they do the MRIs is not. Not sure if they will approve me having follow up MRIs locally. I'll have to call and ask.
I'll find the calendar (not sure how exactly). My next treatment is this Friday, May 21st at 10:30 and then my last one is Monday at 1:30.
Thank you all for your support - I love this forum! Take good care, Jennifer
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I'll find the calendar (not sure how exactly).
Jennifer ~
Here's how: http://my.calendars.net/AN_Treatments (http://my.calendars.net/AN_Treatments) :)
Jim