ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: rrsandstrom on December 28, 2013, 05:11:28 pm
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My husband's AN was found 10 years ago incidentally through an MRI for sinus problems. We have been followed by Dr. Mangham in Seattle, watching and waiting until his MRI last week when we discovered it had grown from 11 mm x 7 mm to 19.5 x 17 mm. Obviously we have to do something about it now. From what we have heard, Dr. Mangham has been the most experienced in surgery in the area but unfortunately he is closing his practice and moving to Idaho so surgery with him is not an option. Regardless, after speaking with his colleague Dr. Steege, we are now leaning towards gamma knife. We have two small children and the amount of time incapacitated and the risks make us wary of surgery. Dr. Steege said that if it were him, he would choose gamma knife and is skeptical about the concerns of radiation causing cancer down the road as well as the idea that radiation would make later surgery, if needed, more difficult. Because my husband's only symptoms so far, even with the tumor growth, is diminished hearing on the AN side. He has had no balance or facial involvement so we are amenable to just trying to stop the growth, hoping that his symptoms stay as is, rather than get it out of there with surgery.
My question is about the best place in the Seattle area to get gamma knife. Dr. Steege said that he has done about 100 which doesn't sound like a high number although we really liked him and he has excellent reviews as an area neurosurgeon (i.e., voted best neurosurgeon by other physicians for several years in area magazines) and works with a well regarded team at Swedish. I also appreciate that he does both surgery and radiation so feel as though he is less biased than other doctors who only treat patients with one or the other. I wonder if it is as necessary with gamma knife to have a Dr. who has treated several hundreds of patients as it would be with surgery. Does anyone have any advice about who to seek opinions from in the area or experience with Dr. Steege and gamma knife?
Also, I honestly hesitate to spend much time on a message board as I wonder if the people on message boards tend to be people who need the support because their treatments haven't gone well. It seems to me that the ones who have had treatment with no further problems would probably go on their way and not spend time on a message board. Though here we are and I would really appreciate any advice. I have done my research and know of the most experienced centers in the nation for this treatment and because of financial and familial reasons, we really need to stay in the area for treatment. Thank you.
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rrsandstrom ~
Hi, and welcome.
You're correct in assuming that the majority of folks posting on an AN support site message board are those who are struggling with post-treatment issues but many are just like you (and your husband), newly diagnosed and seeking information and/or suggestions as well as understanding. In addition, some are AN 'survivors' who have come through surgery and/or radiation are doing fine and simply attempting to help other AN patients. I'm one of those folks. My AN was large and was debulked by (Retrosigmoid) surgery, then radiated (by FSR). I had few complications and a relatively rapid recovery. That was 7½ years ago. Today, I'm doing fine and hope to help other AN patients with whatever I can offer them.
You appear to have your options well calculated and have made some important decisions already, which is good. I cannot offer you any information pertaining to doctors or facilities in the Seattle area because I live on the east coast. However, Dr. Steege seems to have a solid reputation but I cannot say whether having 100 radiation treatments on his record is sufficient, although it would certainly seem so. I trust that other posters in your area will be able to offer suggestions.
Most of the choices you and your husband have to make will be based as much on intuition as cold statistics. Gathering as much credible information is both prudent and necessary. The ANA discussion forums are an excellent resource for doing that as well as a place to find empathy and support based on real-world experiences of AN patients. We're a friendly crew and won't burden you with 'horror stories' as you and your husband seek guidance and advice. We tend to be positive people but we do strive to be factual and not sugar-coat reality.
It's understood that you are adamant about remaining in the Seattle area for treatment and are familiar with Sanford as well as HEI in California but choose not to go there for treatment. That is your prerogative and I trust that it will be respected by any comments that may follow.
I wish your husband well in his journey to halt the growth of his AN and I thank you for choosing to register and post on the AN forums.
Jim
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Hi rrsandstrom-
You are right that there is more negative than positive to be found on the forum; I consider my GK experience to be very positive even though I had some slight side effects. Link to my thread below.
When I was doing my research, I did speak with someone who had only great things to say about his experience w/GK in Seattle. I didn't consult with this doc, but offer his referral to you.
Swedish NeuroScience Specialists
James Tower
550 17th Ave. Suite 500
Seattle, WA 98122
Tel: 206-320-2800
Fax: 206-320-2827
www.swedish.org
His GK was with Dr. Sandra Vermeulen.
Once I made my decision, I honestly felt it best to stay off the discussion board to focus on myself and my treatment and not be swayed by others. Making the decision s the hardest part, and then not second guessing yourself every time you read something else!
One thing that helped me was to PM people on this discussion board that had the most relevant experience to me. All were responsive and helpful.
I wish you all the best;
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It seems to me that the ones who have had treatment with no further problems would probably go on their way and not spend time on a message board.
Nothing could be further from the truth.
I had my Gamma Knife on 1/22/13. Other than being deaf in the AN ear, I've been virtually symptom free since then and my 6 month MRI on 8/1/13 showed the expected necrosis and just a minimal swelling.
Yet I am still here, entertaining other members with my wit and wisdom.
I think Gamma Knife is a good choice. Along with your neurosurgeon you are likely to have a highly qualified radiation oncologist, neurotologist, and physicist on your team.
Contact the leader of your local support group and see if others in the area have had Gamma Knife with Dr Steege and his team:
Leader: Barbara Shinn
425-771-2105
bws909@comcast.net
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Jack has hit on a good point. It's not just the surgeon involved, there is a whole team of doctors during the gamma knife procedure. Also, GK is an outpatient procedure. If you're looking at more experience you can literally fly any where in the Country, stay the night, have the procedure in the morning and fly home the same day. I'll put in a plug now for where I had my GK done. UPMC in Pittsburgh. First class all the way. They have the most experience in GK
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Definitely contact Barb Shinn - the leader of your local ANA support group - she's a wonderful woman who last I knew was still watch & wait. She's familiar with docs in the Seattle area and should be able to offer you suggestions.
I also want to assure you that lots of us here can relate to your desire to stay in your "own backyard" due to financial and familial reasons. I didn't go to one of the "big names" out of state for my treatment - stayed right here (near Chicago) and my results were just as good as those I would have gotten elsewhere. I couldn't be happier with my outcome.
The most important thing you want to do in choosing a doctor is to find someone with lots of experience in treating ANs. Sounds like you're already aware of that and are moving in the right direction.
Best,
Jan
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Thank you so much for your replies and advice. I did write to Barbara to ask about her experience here in Seattle. I also realized that we have a friend who could possibly get us some cheap tickets to Pittsburgh, where my brother lives, so it could be possible, though inconvenient, to fly there for gamma knife at UPMC if that is the best place to go. Could we really just fly there for the radiation and then conduct our follow-up (MRIs and consults) long-distance? Would there be a significant benefit to getting the treatment there? Should I request any specific doctors? Any recommendations on who to contact there? I really appreciate this board and that you all are here spending your time helping those of us who are where you once were.
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In September I drove from Michigan to UPMC to have GK with Dr. Lunsford. I'll have my follow-up MRIs here at home, mail the disk to UPMC, and get Dr. Lunsford's feedback by phone. For me, it was worth it to go to UPMC because Dr. Lunsford has more GK experience with ANs, and a longer track record of success (over 20 years) than anyone else in the country. However, I've also heard success stories from people who underwent radiation treatment at facilities closer to home.
One helpful thing I did when trying to decide where to go was mail my MRI film to the Center for Image Guided Neurosurgery. They'll review your MRI and provide a phone consultation with you for no charge. I initially spoke to Dr. Monaco, who was incredibly friendly and helpful, but I was a squeaky wheel and also insisted on talking to Dr. Lunsford directly. I asked Dr. Lunsford point blank if it was worth it to travel to UPMC for GK instead of going to another center closer to where I live, and why. I think this might help you figure out if its worth it to you.
If interested, you can send you MRI film to Kelly Powell at the address below:
Kelly Powell
Administrative Coordinator
Center for Image Guided Neurosurgery
Dr. L. Dade Lunsford
Dr. Ajay Niranjan
UPMC Presbyterian
1st floor- Room F-188
200 Lothrop Street
Pittsburgh, PA 15213
Phone- 412.647.7744
Fax-412.647.8447
powellkc@upmc.edu
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I am fortunate to live in Phoenix where the Barrow Neurological Institute is located.
That's where I had my GK.
http://www.thebarrow.org/Education_And_Resources/Barrow_Quarterly/203362
I'm not saying that BNI is better than UPMC.
But if I had to choose between Pittsburgh and Phoenix in the middle of winter, well...
::)
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What ASG said. :)
Jack, I hear yah. I was at UPMC for my GK in one of the worst snowstorms they've ever had. I arrived the day before and had a hard time getting around. Night time was pretty much relegated to an area around the hotel (which turned out good actually). When we got to the hospital in the AM, I was quite worried none of the doctors could make it in and I would have to postpone. Everyone showed up though and everything went ahead as planned. :)
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Hi rrsandstrom,
I live about an hour north of Seattle, have a small AN (about 9mm) and chose Swedish Hospital as they are a regional treatment center for AN and have a very good reputation. My only real symptoms are a loss of balance and slight tinnitus. My hearing is good for the normal range (although my upper range is severely affected, it may be from old age (70) rather than the tumor).
I have had the balance issues for several years without knowing the cause, so finally had an MRI where the AN was discovered.
I have a relative back east who is a general surgeon, so I asked him for the names of two doctors, one at Swedish and one at the U of W Medical Center. He did some on-line research and recommended Dr. Douglas Backous (who is also one of the doctors recommended by their peers). I met with Dr. Backous, a neurosurgeon for a consult on my tumor in October 2013. He was confident that it could be removed surgically, while retaining some of my hearing, and we scheduled surgery for early January.
However, I did additional research, and based on my tumor size and location, I decided to explore Stereotactic Radiosurgery as an option.
I met with the head of the Department, Dr. Sandra Vermeulen in November, and she spent 2 1/2 hours going over my MRI and explaining the process to my wife and I. We were both very impressed with Dr. Vermuelen, her caring ways, and the patience she exhibited while discussing the options. Swedish has both the GammaKnife and CyberKnife radiation machines, sitting side-by-side (this is highly unusual, most facilities only have one or the other). Without getting into all the details, they both use targeted radiation to retard the growth of the tumor. Doctor Vermeulen thought that Cyberknife would be a better choice for me, but it all depends on the tumor, it's location, the symptoms, etc.
In order to prepare for the radiation treatment, an MRI and a CAT scan is administered to prepare a treatment plan. Dr. Backous will be part of the Team, along with Doctor Vermeulen, and several others who review and approve the plan. The plan is programmed into the computer and it automatically administers the dose of radiation over about a 45 minute period.
One of the differences between Cyberknife and Gammaknife is the way they position the head to hold it very still while the radiation is administered. GK uses a "halo" with four screws that are inserted part way into the skin of the skull (under local anesthesia), while CK uses a personalized mask that is created ahead of time and then attached to the platform.
It has been difficult for me to make a decision on the best course of action, (W & W is still an option as well), but the Team at Swedish has been nothing but professional and I would not hesitate to recommend them. My wife, who is a medical technologist and worked in a micro-biology lab for many years, was very impressed with the facility and the cleanliness. She also liked the fact that when I was considering surgery, they swabbed my nose to test for the bacteria which can cause MRSA.
I also met Barbara Shinn and attended the last quarterly meeting of the ANA at her home in Edmunds. It was a very rewarding and supporting climate and it really does help to talk to people who are experiencing the same thing as you are. If it would help, Barbara has my phone number and I would be more than willing to talk with your husband or yourself about my experiences in more detail.
I do agree that you have to be a little wary about the postings on this site, but overall, I think they have been very helpful to me.
I hope this information has helped and I wish you and your husband good luck as you pursue the best option for his treatment.
Rod
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Posting an update, especially for you Rod...
I heard back from Barb who had helpful advice of course. I believe she forwarded me some of your e-mails Rod so thank you for that. Also for your post here. I think I see from a post on another thread that you have decided to watch and wait? We were ecstatic with that for a long time until something happened to make the little bugger start growing but I totally understand your thoughts about why do something about it while it's little and not causing problems. Plus I always felt that the more we waited, the better the research and technology which of course turned out to be true (I think 10 years ago, we would have decided on surgery but now are going with radiation).
We still haven't made a decision but will go to meet Dr. Steege again this week. Our first appointment was a unscheduled consult after hearing the news that it was growing so we really weren't prepared with questions and I'm not sure he even looked at the MRI. So we'll go back and I'll have all my questions. Since he is a neurosurgeon with Swedish, I presume he will have a team working with him, including a radiation oncologist and I am hoping that it will or could be Dr. Vermeulen who I've read about here (I believe you've seen her Rod?). Who's more crucial--the neurosurgeon or the radiation oncologist? Who actually "does" it anyway?
Regardless, we'll find out more Thursday and then decide whether to find someone else to consult with as well. We're picking up CDs of the MRIs too so if I need to send it around, we'll do that though we are really hoping to stay around here.
Thanks again everyone!
Rachel
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Who's more crucial--the neurosurgeon or the radiation oncologist? Who actually "does" it anyway?
All three of my doctors (neurosurgeon, radiation oncologist, neurotologist) and a physicist were all present during my GK. As to who pushed the button on the machine, I couldn't tell you. ::)
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Hi Rachel,
Who's more crucial--the neurosurgeon or the radiation oncologist? Who actually "does" it anyway?
As I understand it there is a Team of people who will prepare a plan. They are all "crucial" to the process. In the case of the Cyberknife, Dr. Vermeulen, Dr. Backous, a physicist and others will use recent MRI and CT scans to develop the radiation therapy "plan", which I believe is a software program that controls the application of the radiation. Dr. Vermeulen told me they start at the periphery of the tumor and work inward. Assuming the periphery receives 100% of radiation, the inside of the tumor receives up to 140%. They try and minimize radiation to the surrounding organs (such as the cochlea) while still providing a maximum dose to the tumor. This may allow the retention of some hearing. In my case, the tumor is right next to the cochlea, so Doctor V. thinks I will lose all hearing in the AN ear within 2 - 6 months of the radiation treatment. She tells me I have a "short and fat" canal, while others have long, skinny ones.
Doctor V. told me she is comfortable with me waiting 1 - 2 years, while administering periodic MRI's. I don't think anyone knows why they start growing more rapidly than 1 mm per year. There is a Yale doctor who is currently conducting a research project with DNA analysis and on-line interviews. The ANA is sponsoring her.
My understanding is that certain neurologists are qualified to do the Gammaknife (doctor Steege) and others are qualified to do the Cyberknife (Doctor Backous). Some may be qualified for both, although I am not sure about this.
I am not sure about who will be at the machine during treatment, although I am sure Dr. Vermeulen will be there. I am guessing that a radiation technician will actually run the machine, but am not sure about this.
Good luck on your husbands treatment. Maybe you could continue to post to keep everyone updated on his progress.
If you have any more questions, don't hesitate to contact me.
Rod
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I just wanted to post an update, particularly for people in Seattle who find very little on this forum! My husband and I met with Dr. Vermeulen at Swedish Radiosurgery Center yesterday and LOVED her. She was smart, experienced, quick, knew her data and statistics, and is very active in and knowledgeable about the radiosurgery community. She spent almost 2 hours with us. She has years of experience with both cyberknife and gamma knife. She even treated herself for breast cancer with cyberknife! We are even more comfortable with our radiation decision after meeting with her and completely comfortable with Swedish (and not traveling to a center far away). She says they use the Pittsburgh protocol for gamma knife and Stanford protocol for cyberknife.
After listening to Steege, our neurosurgeon and hearing his bias towards gamma knife (which is what he does), we had thought that's what we'd do. Now we are rethinking and considering cyberknife. She said she just finished a study comparing cyberknife and gamma knife for ANs and found that there was no difference in success rates and side effects between the two. She told us that though she does not have data to prove it, her inclination or bias is that cyberknife should, theoretically, have fewer side effects and if there's a chance that's true, with the data showing "cure" rates the same, she'd opt for cyberknife.
Oh, and she also said that with the shape of my husband's IAC and the tumor location, it's in a good place to swell and there's a good chance side effects of swelling would be less. She also confirmed my hunch that pre-treatment symptoms predict post-treatment side effects which is good for us since there are no balance or facial effects right now.
So now we wait for insurance approval and I do a little more research about cyberknife versus gamma knife. But a resounding approval of Dr. Vermeulen!
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Glad to hear, hope your insurance comes through for whatever procedure you choose.
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I had my CK done at Swedish January 2008 & Dr Vermullen was my dr. I no longer follow with her but I do agree she is great.
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Hi Rachel,
Since I had a small AN and I still had fairly good hearing in my AN ear, I decided to go with Watch and Wait, and I haven't been on this web-site much, but just noticed your posting about your Swedish experience. Dr. Vermeulen is such a knowledgeable and caring professional, I was confident about speaking highly of her, but am very glad you concur with this assessment.
Please keep us all updated with any status of your husband's treatment. It is always helpful to read about the different situations, as they are all patient specific. I wish him (and you) much success in whatever treatment option you choose.
I think there will be a meeting of the local chapter of the AN society sometime in March, maybe you can check with Barbara Shinn about the date and the location. I certainly encourage you and your husband to attend this meeting, it is such an informative and supportive group and they make you realize that you are not alone.
Good luck and keep us posted!
Rod
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Hi Rachel & Rod,
Reading this post made me think back of when I went to school @ UW in the late 70's, -- back when Warren Moon was the quarterback, they just built the Kingdome, and the Sonics won the NBA championship.
Good luck w/ your W&W and CK!
Keith - UW '78
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ampeep - and now the Super Bowl! Seattle has been a celebrating town the last month.
Rod - I will definitely keep in touch with Barbara and try to come to the meeting if I can convince my husband!
An update - Larry went for his planning MRI & CT and mask making last Friday (he tells me that I will definitely be freaked out by the mask). We just got notified today that his treatment is scheduled for next Monday, Tuesday, and Wednesday. I don't know any details about the actual amounts of radiation. Is that something I should ask about? The scheduler said that it's not necessary that I accompany him but I will at least go the first day. And then the waiting game starts over again. I will keep you all posted...
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oh, forgot 'bout the Super Bowl!!
Good luck w/ Larry's treatment next week, hope things work out well.
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Rachel and Larry,
Best of luck next week! I'll keep you close and send good thoughts your way. If I can be of help, please let me know. You have done your work in making this tough decision, so now try to relax and let the docs do their thing. You are in excellent hands!
Barbara
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Dear Rachel and Larry,
Today should be Larry's second CK, and I was wondering how it has been going for both of you? It would be really great if you could both attend the next AN meeting, as there are only a few who have had the radiation treatment and I think many of the members would enjoy talking with you and finding out more details of your experience.
Good luck, and keep in touch!
Rod
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Hi Rod, Barbara, and all,
Larry had his three sessions of cyberknife at Swedish radiosurgery center this week. It was very anticlimactic and easy. His first session was Monday and I went with him although they told us that most people do just fine and even go back to work afterwards. He was just fine and both of us went back to work. He went in on his own on Tuesday and then I returned with him on Wednesday to meet with the doctor after his final session. He didn't even see any doctors until after it was all done on Wednesday. Unfortunately last weekend he developed a head cold and sinus infection (he has chronic allergies and sinus issues which is how we found the tumor initially 10 years ago) so he has been pretty miserable from that but not, to our knowledge, due to anything radiation related. He started antibiotics and steroids yesterday for the sinus infection and is feeling better and nothing that he can attribute to the treatment. Next steps are for a phone call with Dr. Vermeulen in a week and then she'll let us know when the first MRI would be. The doctor we saw on Wednesday (Chris Loiselle) said probably not until a year out. He also said that only about 25% swell so we will see. We were very impressed and happy with Swedish. Now it's just watch and wait and hope for no symptoms. I will keep you posted and try to come to a Seattle support group meeting. Thanks for all your help through this.
Rachel
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Hi Rachel,
Hooray, it sounds like everything went as well as could be expected!!! Based on what I have read on this site, it is probably premature to celebrate too much, but it is definitely a great start.
Do you feel relieved that the treatment is all over?
Hope to see you and Larry at the next AN Chapter meeting,
Rod
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How long does gamma keep working? My symptoms, balance & hearing and are getting worse over time. I had it done in 2011