ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: KathleenMary on August 06, 2010, 05:39:35 pm
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Hi,
I have just recently been diagnosed with AN. I saw the neurosurgeon last week who does not recommend surgery...we are on the same page. He is recommending CK. We did not speak much about side efects. I'm really concerned about swelling and steroids. My tumor is 2.5x2.7 cm. I am almost 65 years old (in another month or so). I have a second opinion with a neurosurgeon from the U of Colorado in the Denver area on the 18th of this month. The neurosurgeon I saw this week seems to have experience with CK but I don't have a feeling for how much. Should I be more concerned that the radiology oncology guy is more experienced that the neurosurgeon. I want the best, but I don't really know what that is when you are looking at credentials. Any information would be appreciated as well as info on steroids, etc. thank you
KathleenMary
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KathleenMary,
I can't offer much information or advice, but I can tell you that there is a wealth of information on all these questions as you explore the forum. Do a search for some of your key word concerns from the main page of the forum. You'll find lots of discussions on these issues. It has been invaluable to me. It is important to feel comfortable and confident in your doctor and your decision. Additional opinions are always helpful and making sure you find someone well experienced in treating ANs is also very important. My tumor is much smaller than yours, but after much research, reading, and contemplation, I have recently made the decision to go to Stanford for CK treatment.
I'm sure others will be chiming in soon.
Best wishes,
Connie
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Thank you Connie for your information. I have been looking over this site for a number of days. How far are you from Standford? I guess my other concern is that my employer is switching health nsurane from Anthem Blue Cross/Blue Shield to Kaiser, which really has a terrible reputation here in Colorado. Thanks for your input
KathleenMary
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Kathleen Mary,
Welcome to the forum, please do not hesitate to ask or express anything you are feeling. We're here to help you through your journey. I just want to say that I'm happy you are here as we have many "experiences" to share with you as well. Getting second opinions are very important in you decision making process, but it seems you are well on your way.
Take care,
Liz
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Hi, KM. Welcome to the Forum ;D Sorry about the AN.
To answer your question, no, you should not be concerned that the radiation oncologist knows more than the neurosurgeon about CK.
CK is the job of the radiation oncologist - neurosurgeons generally do surgery, and in my experience, often don't know much at all about radiation.
I don't know how things work in your neck of the woods, but in Illinois where I live, a team consisting of a neurotologist and a radiation oncologist typically perform radiation procedures, while a neurotologist and a neurosurgeon typically perform surgical procedures.
Dr. Chang @ Stanford has a stellar reputation when it comes to CK. If you are not opposed to going to California for treatment, I'd definitely consult with him.
You should also contact the ANA for their informational brochures. You'll find they are an excellent resource and will explain a lot about both radiation and surgery.
Jan
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Hi,
I have just recently been diagnosed with AN. I saw the neurosurgeon last week who does not recommend surgery...we are on the same page. He is recommending CK. We did not speak much about side efects. I'm really concerned about swelling and steroids. My tumor is 2.5x2.7 cm. I am almost 65 years old (in another month or so). I have a second opinion with a neurosurgeon from the U of Colorado in the Denver area on the 18th of this month. The neurosurgeon I saw this week seems to have experience with CK but I don't have a feeling for how much. Should I be more concerned that the radiology oncology guy is more experienced that the neurosurgeon. I want the best, but I don't really know what that is when you are looking at credentials. Any information would be appreciated as well as info on steroids, etc. thank you.
Welcome, although I'm sorry your AN diagnosis brought you here.
As Jan stated, a radiation oncologist should be better informed about radiation procedures than a neurosurgeon and, conversely, you would expect a neurosurgeon to be better informed about AN surgery than he is about radiation. I would go back and ask the first neurosurgeon you saw why he recommend radiation. I expect it may be due to your age.
Whether you chose radiation or surgery, you want to ask the doctor how much experience he has with acoustic neuroma patients. Many neurosurgeons do a lot of operations on the spine but have minimal experience with skull-based tumors. Radiation oncologists often treat various forms of cancer but have little experience with acoustic neuromas. I was very fortunate to have a neurosurgeon that had decades of experience removing ANs and a radiation oncologist that also had experience with using radiation on acoustic neuromas - and they worked as a team, because my neurosurgeon had a good grasp of radiation procedures. The result was a complication-free AN surgery that debulked my large AN from 4.5+ cm down to 2.5 cm, then used FSR (Fractionated Stereotactic Radiotherapy) to destroy it's DNA and, effectively, kill it (stop it's growth - forever). Today, four years later, I'm doing great and highly recommend the debulking/radiation protocol for AN patients with large tumors, when their doctor approves. Whether that applies to you is unknown, only a doctor can tell you that. However, should you chose radiation, it has an excellent chance to be completely effective. Many of our member's have undergone one of the 3 forms of radiation treatment for their ANs; FSR (Fractionated Stereotactic Radiotherapy), GK,(GammaKnife) or CK (CyberKnife). I underwent my successful FSR treatments (all 26) when I was 63 years old. I suffered no ill effects - but my AN did! (it 'died' - R.I.P.) :) I trust that you'll have a similar experience. Please try to stay connected here because we want to help and support you. Thanks.
Jim
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Thank you all so much for your kindness and encouraging words. I really appreciate the information shared by all of you. Jim, my neurosurgeon did not suggest surgery and I do suspect it is my age and I was on the same page as he. What his recommendation is the CK and I will ask when I meet with the radiologist (August 26) what experience he has with AN. One can get those reports about Drs. on the internet and did look at his and it does not state that his expertise is in AN nor does it mention anything that would make me think he has done CK with AN...so definitely will check that out. However, the neurosurgeon does have experience with AN, however limited. It is just tough to know what the right choice is but am hopeful I will feel it when I know it is the right person. I will check back and keep in touch. I see the second neurosurgeon next Wednesday at the University so we will see what he has to say. Thank you all again.
Kathleen Mary
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Hi Kathleen Mary,
A late welcome, looks like you have gotten some great advice, and are on top of things, so that is good!
No rush, the tumor is benign, very slow growing (the majority of them anyway), and you can get as many opinions as needed, depending on insurance.
So we are a good sounding board, let us know what you continue to find out.
Hopefully you can go the radiation route and avoid surgery altogether.
Best wishes during this journey of yours,
Maureen
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Thank you Connie for your information. I have been looking over this site for a number of days. How far are you from Standford? I guess my other concern is that my employer is switching health nsurane from Anthem Blue Cross/Blue Shield to Kaiser, which really has a terrible reputation here in Colorado. Thanks for your input
KathleenMary
KathleenMary,
To answer your question, I am across the country from Stanford. I live in GA. But after my research and assessing my situation and options, that is where I feel most comfortable going for CK. I also considered other places that have been mentioned many times on the forum. The options I was offered in Atlanta and my gut impressions, just did not make me feel comfortable. It's a long way to go, but as someone here has said many times, this is my brain we're talking about; so, it is important to feel confident in your decision. The consult was free and done remotely; so, I haven't even been to Stanford yet, but I talked to Dr. Chang after he looked at my MRI. Others will do the same. So, you many not have to worry about insurance for a consult, but obviously you'll need to get treatment where you can use your insurance. Sometimes there are additional benefits that insurance doesn't always advertise. I found out that while my regular PPO network would not cover the process in CA, I can use an alternative network through my insurance that will cover it as in network. So, that was a great relief. Keep exploring and it will become clear to you what you need to do. Most people on the forum will say that making your decision, the what and where and with whom, is the haredest part.
Connie
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Welcome, KM, I do apologize for weighing in so late. My joy for meeting you, my regrets for meeting you HERE. I have found great comfort and wisdom on this forum. I won't repeat what every one has said before me, just know that this is the place to come for answers from those who have experience.
I did what I believe is a lot of research: Internet, print, consultations with three Doctors (Blevins, Gibbs, and Chang - all of Stanford) and received an opinion from Dr. Loeffler at Boston's Massachusetts General. I was advised that, in my situation, I could choose my option: (surgery, radiosurgery, watchful waiting). W & W was never an option I wanted to consider - attack that sucker - so I was totally for surgery - then radiosurgery - then surgery - then radiosurgery . . . ??? I found it all very confusing at first; each option seems to have it's own unacceptable risk. But I've come to decide to do CK with Chang and have found peace and confidence in this decision. Everyone says that getting here is the hardest part and for that, I cannot say because I've not gone the distance, but I'm willing to take their word for it.
Good luck in your journey, you're not alone. :)
Mark
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Thank you Mark for your thoughts. I do know that neurosurgeon in Colorado Springs does not recommend surgery; CK seems the choice. I spoke with a friend of my son's who happens to be a pathologist at University Hospital in Denver. He pointed out to me that ANs ar enot common by any means and that I do want to make sure the radiologist team has experience with ANs not just brain tumors and CK. I meet with the radiolgosit here in thespirngs on the 26th of August. I guess one of my concerns for myself since everyone is very high on Dr. Chang, what does one do about follow-up if there are problems, fly to California or what? He sounds like an excellent physician. I have done some but not alot of looking at the Rocky Mountain Cyperknife Center. I will see what the neurosurgeon from Denver says next week. Again, thanks for your input. I'm hoping to find that peace!!!!
Kathleen Mary
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Kathleen Mary,
If you do go to CA your aftercare and follow ups can be done over the phone and in tandem with your current neuro. I know plenty of people who traveled for their treatment used this method for after care. Not sure how they found it to be, but I'm sure they worked through it. If you find your current Dr has a problem with this method I say find another one...
Take care,
Liz
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Just an update from me and if any one wants to comment, please do so. I went to see the neurosurgeon at the Univ. of Colorado Medical Center today for my second opinion. He recommended Gamma Knife. He stated he would give me conscious sedation so I would not come completely unhinged. More importantly he has had 24 year of experience and direct experience with 400 people who have had ANs. He also felt that the literature did not support fractioned SR as being any better than one time Gamma. I am more inclined to go with this physician, since he is associated with a teaching hospital, has the experience and won't have issues with my insurance. the company I work for is switching insurance companies as of the 1st of September to Kaiser...which really has a very bad reputation. My husband says..."people who are concerned with ObamaCare have not had to deal with Kaiser" and I watch the reaction of medical professionals when I mention I will be having Kaiser. I will be covered under Anthem Blue Cross until the end of this month. Anyway, I think I can get through this now since I am significantly more clear about going with this physician and the gamma procedure.
KathleenMary
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KathleenMary -
I've said it before, and I'll say it again. Go with your gut.
If it feels right to you; you are comfortable with, and confident about, the doctor; and he's/she's qualified and experienced in treating ANs (sounds like he is); then follow your instincts.
Choice of AN treatment is probably THE hardest part of the AN Journey and when you get to the point where you find what is right for you, IMO, you just know it.
Good luck,
Jan
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Kathleen Mary,
I agree with Jan, nobody else can make this decision for you and only you will know which avenue to take. Congrats on making your decision! And please keep us posted on your progress and whatever date you are scheduled so we can put it on the calendar.
Take care,
Liz
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Thanks for your comments. I am scheduled for the gamma knife on August 31st and really would appreciate being put on the calendar. I will keep you all posted. Have a headache tonight but also had 2 beers...LOL
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KathleenMary -
I put your big "date" on the AN calendar.
Cheers!
Jan
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Hi all, Just getting a bit wacked out about my upcoming gamma knife trip on Tuesday. I can't believe how anxious I am. The nurse from the center called me this week.
She assured me that they would give me Valium to start with, as soon as I get to the suite. Then at some point I will get Verset (sp) and Phenalin (SP). This is the stuff Michael Jackson had...and then when it is all over I will get a Vicodin. Sounds like a lot of drugs but then I really want to be drugged up. The nurse said that really the only discomfort will be in the injection of novacaine. She stated it burns but only lasts about 5 seconds. It all looks so uncomfortable. Anyway folks, I just thought I would post since we will be leaving on Monday. Will be back home Wednesday and if I am up to it will post on Thursday. I do know I will be okay. We have all gone through something and it probably is not as bad as one would expect, when it is all said and done. I am ramblin.' Kathleen Mary
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KM,
Congrats on making a decision and getting scheduled before your insurance switch - great to have Drs that will work with you like that! I had GK a year ago and the days before are nerve-wracking. You will be fine, the drugs will do their job and if they aren't be sure to ask for more. The actual GK is boring so bring a CD of music you like, the Dr. will usually play it for you. Anything to help you relax! By the time I got home I felt really good, a tad tired so I took a nap but that had just as much to do with taking advantage of the babysitting my mother-in-law was providing - I didn't want her to think she wasn't needed! My side effects were limited - the weirdest thing was that the top of my head was numb for a couple weeks but it's fine now.
If you have any questions be sure to pm me, I would be happy to fill you in on any of the details of the actual experience & procedure.
Good luck, here's to a speedy recovery.
Beth
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KM,
Hang in there just a couple more days and you will be a toastie postie!
Liz
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KM,
Didn't have GK but thought I'd chime in and wish you well for Monday.
Your comment:
Then at some point I will get Verset (sp) and Phenalin (SP).
It's versed and it is wonderful! I love my versed! I've had many procedures and such and it will relax and sedate you so you will kind of be aware of what's going on. Like taking a light nap through it all.
Goes in through the IV and you will just drift off into happy land. :P
The anesthesiologist will monitor you closely and then reverse it so you'll "wake up."
As far as the Phenalin, not sure about that one. All I can find is Phenylin which is a blood thinner. (I'm a nurse, this kind of stuff interests me ;) )
Michael Jackson OD'd on propofol-bad stuff.
The vicodin afterwards will help with the head discomfort. It's one of the less powerful narcotics.
You'll be glad you have them, trust me!
Hang in there, Tuesday's coming.
Maureen
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I know the versed but wondering if the other meant fentanyl which is a narcotic analgesic which works fast and can be of short term use. But it is very strong so not sure if needed for the GK. I had the propofol for my colonscopy so was out of it for the procedure. But awake easily once awake. Inquring minds like to know! LOL! I miss keeping up with meds now,
Cheryl R
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You guys are the best!. Thanks for the encouraging word!. Cheryl it is the Fentanyl, thanks for the correction of spelling...now I know it is Versed. I'll keep you posted with an update next week. I am less anxious after reading the posts. Kathleen Mary
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KathleenMary,
I'm sure you are anxious, I would be too. But, just think, soon this will be behind you and you can move forward. I'm having CK the last week of Sept and that's what I keep telling myself...it'll be done. Try to have a good trip and relax if you can.
Best,
Connie
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You guys are the best!.
I love to say, "I told you so"
:D
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Well, I survived the GK. Feel pretty icky; started on Vicodin which is making me pretty sick. Vomiting, no real let up on the headaches. Any other medication ideas guys. Was given a med for nausea but that does nothing to help with the Vicodin. At this point can't keep jello down. Any suggestions would be appreciated.
KathleenMary
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KathleenMary,
Congrats on getting that GK done! Sorry you feel icky.
If the vicodin is making you sick, I'd say quit taking it, and call the doc for something different. Good ole tylenol, up to 4000 mg /day is OK, and in between Motrin if ok with your doc.
No fun being sick. Ice chips? Cold packs for the head? Just some ideas.
You'll feel better soon, I'm optimistic for you. Sleep if you can......Zzzzzzzz
yay, it's over!
Maureen
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Although I've not had my nuke session yet, I'd agree with maureen. I had some Vicodin for my rotator cuff surgery and I can empathize with you, KM, it made me feel "not of the human species". Maybe some Ginger Ale, or maybe some other Ale ;)
Good luck, I wish you a very speedy recovery - oh, and get your signature up, you deserve to brag.
Mark
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Sorry you feel icky, I threw up a lot after the surgery because of medication on an empty stomach. I took the nausea meds about 1/2 an hr before the pain pills and that seemed to help some. Its not a bad idea to call your Dr., trying liquid pain meds might be easier on the tummy. Hope your pain clears up quickly and you can get back to feeling human again soon.
Welcome to postie land!
Liz
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Starting to feelbetter. Yesterday only took two tylenol. How long did it take for the sweling/puffiness around the eyes to go away?
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KathleenMary
How are you doing? Haven't heard in a week or so. Let us know.
Connie
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Hi All,
I can't believe that I am approaching a month since by GK procedure. Outisde of feeling really, really, fatigued several times a week I think I am doing okay. I get occasional pains in my head that last a very short time and I believe that means the radiation is cookin'. Overall besides the tiredness I think all is well. I am curious did you have follow up with your physician after the GK at 4-6 weeks or did you just not see him unless a) there was a problem or b) at 6 month MRI? I did get my report today from my primary care doctor which was pretty interesting to read, though I did not understand all of it. Apparently I got 19 shots of radiation though. Again, I wanted to let you all know that have written me initially that I am doing good. I will keep you posted.
Kathleen Mary
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Glad to hear things are going along fairly smoothly for you.
Take care,
Connie