ANA Discussion Forum
General Category => Inquiries => Topic started by: Julie in Michigan on October 18, 2008, 08:23:19 am
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Hello, All and thank you for this fantastic forum...I'm learning a lot...
I've just found out I have a 1.7 cm AN. I've been complaining of balance issuses for 2 years, but was told "it's just you and your low blood pressure" or it's menopause! (-: (I'm 48). I have tinnitus and 30% deafness in my right ear.
We've been sent from my primary care doc to an ENT and now to a surgeon with the MI Ear Institute...It feels like a referral treadmill...We are doing our own research on line with the help of excellent websites like this one, but we have yet to speak with a professional who is reassuring about anything...
It seems whoever does a certain treatment (GK or surgery only) is a proponent of THAT treatment, you know what I mean? Also, when you read about the GK option and it's lack of more of the serious side effects, it makes me wonder what other circumstances would cause someone with a small to med AN to chose a resection?
No one here does either of these treatments so we will have to travel out of town and then the question becomes how far? After you decide which treatment, how do you decide where?
I'm overwhelmed with questions...as I continue to research, I'm so grateful for your thoughts and experiences - Thanks!
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Julie,
Take a breath. It's totally natural to feel overwhelmed. I would add terrified into the mix as well. I live in Cleveland and so had two world class hospitals to choose from. I had consults at Cleveland Clinic and University Hospitals with a total of three doctors in all. For my particular tumor surgery was the best option and because I had no hearing loss (and am a musician) preserving my facial nerve and my hearing pretty much dictated what procedure they did. I found a good team that had done a ton of these procedures and went from there.
I thought I had read some other posts from folks that had procedures at the Michigan Ear Institute, you may want to do a search on that. Keep us posted, keep asking questions, and feel free to PM me if you want to.
Best,
Marci (in Ohio, your neighbor)
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Hi Julie,
Scary isn't it? Welcome you are among friends who understand. I decided to have surgery because I wanted it out! Yes I have had complications but still do not regret my choice. I am getting stronger and stronger everyday and I believe that it will all work out in the end. Arm yourself with information. Carson started a great thread on what do you wish you would have know (something like that) anyway it is good...well really there is a lot of great reading. I think I read and read until my eye balls hurt I wanted as much information as my brain could hold.
You will do fine with whatever choice you make because it will be your choice. Do what is right for you not ANYONE else. We are here for you so ask all the questions you want to.
[[[[Big Hug]]]]]
Michelle ;D
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Hi Julie,
Welcome to our little corner of the Universe. Sorry you have to join our club, but we are happy that you found us! Many do not until after they have had treatment and wished they knew about this site beforehand.
Your AN is a little smaller than mine (2cm), and you need to be aware that you do have options. You may be a good candidate for radiosurgery and this is something you should find out about. You may (or maybe not) decide that you'd rather proceed with a non-invasive route rather than microsurgery. Or you may decide that a surgical procedure is how you'd rather go. The key word is YOU. You can be advised by doctors, which is a good thing! But, know that surgeons, unless they also are trained in radiation treatments, are going to prefer to operate on you. They are not likely to send you down the street to their competitor. Likewise, a doctor might prefer radiation treatment over traditional surgery and steer you to his/her specialty. Not that that's a bad thing, but you need to decide which is going to be best for you. The point being that if your doctor starts to schedule you for surgery, you might want to research other possibilities. It's your right to do that. Much to our frustration, Acoustic Neuroma seems to lead a double life. It is more properly called Vestibular Schwannoma, and it can be treated with surgery, or, unless the size and location aren't within the guide lines, it can be treated with radiation. And everyone manifests the symptoms in their own unique way. Some people are diagnosed right away, but some can take a few years before they find out, finally, what is wrong. It took me almost a year to get a proper diagnosis.
And all of us were perplexed, overwhelmed, frightened, anxious, and relived, when the doctor finally told us what we had.
I don't think it would take too much research to find the most experienced hospital in your part of the world that could successfully treat you. Just be bold and ask them ' "How many AN's do you treat in a year?"
I wish you the best of luck in your research, treatment and eventual recovery. Any question, concern, fear, you name it and you can ask it here!
Best wishes,
Sue in Vancouver, USA
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Hi Julie,
Welcome to the forum. You are right, many doctors tend to favor one form of treatment or another, usually based on their own experience and skills. It is just as important to talk to a radiation oncologist about radiation, as it is to talk to a surgeon about surgery.
You ask why some people jump at the chance for radiation, and others jump away from it. I think it is a matter of perception, how you feel about having a tumor radiated instead of removed, and whether radiation gives you the willies - or surgery does. There are pros and cons for both treatments, and in the end you get to decide which makes sense for you. You have plenty of time to do some homework.
Best wishes,
Steve
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Hi Julie,
Sorry to hear you've been diagnosed - I have too quite recently, so I understand how overwhelmed you are, as I would imagine does everyone else here. It is scary to be faced with a choice - I would much rather be told, right you have an AN and this is what we have to do to make you better, but no - we get, right you have an AN and you could do this or this or this, I don't want to make the decision for you, so think about it, JEEZ! Good one - give someone with no decision making ability a massive decision to make about their brain, woo hoo!
As for how far do you travel - travel as far as you have to to get the best care I say. I am in the UK, but am Australian - I could have the op here - but I'm hoping to have it done in Australia (with an equally experienced surgeon) so I can be with my family and recover in the sunshine!
Good luck with everything, and remember that you don't have to make a decision too quickly - at 1.7cm you have both a while to deal with it before it becomes a massive problem and you have more options (there's that choice again!) for treatment - lucky - in a way!
Cheers
JB
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Hi, Julie -
have you just been referred to Michigan Ear Institute or have you already consulted with a doc from there? I only ask because I'm having trouble understanding what you mean when you say you've "yet to speak with a professional who is reassuring about anything" ???
I'm puzzled by this comment because although I was shocked and scared when I was first diagnosed, my neurotologist was very reassuring. He didn't mince words and told me exactly what I could be facing - IMO any doc worth his diploma will do the same - but he also told me that in the end I would be fine - and I was. I didn't got to MEI, I went to Ear Institute of Chicago (since I'm from the Chicago suburbs) but I can't imagine choosing a doctor to treat me for anything is he/she was all "gloom & doom".
I don't know if the docs @ MEI do radiation, but they are known as being the best in your state at performing AN surgeries. In fact, I've heard that they are #2 - behind House Ear (HEI) in Los Angeles. I'm not "pushing" surgery, just saying that if you choose this route, they are docs to seriously consider. If you should decide to have surgery and you've already met with one their surgeons who you didn't "click" with, you may want to consider consulting with another of their surgeons.
As far as radiation goes, as Steve mentioned, docs tends to favor what they do and know well, so if you haven't talked to anyone about radiation yet, you definitely want to do so since an AN of 1.7 cm should give you the option of surgery or radiation.
You wonder why someone would choose surgery over radiation, and as someone who did, I can give you a little insight. Surgery removes the tumor; radiation attempts to"kill" it and stops it's growth. The majority of the time the attempt is successful. Some of us, myself included, are not comfortable with leaving the tumor in our head and watching and waiting for it to die. Post op I knew what side-effects I was dealing with; with radiation it sometimes takes 12-18 months for the side-effects to fully appear. These are just two of the reasons I chose surgery.
I'm not dissing radiation - it's a marvelous choice for many patients, it personally just wasn't for me. We on the forum pride ourselves in telling newbies that AN treatment is a personal choice and it truly is. We will be here to support you whichever option you choose.
Everyone's AN journey is different, and we all heal at a different rate, but neither treatment is the end of the world and your life will get back to normal. You may have a "new normal" post treatment, but you'll be fine.
Good luck,
Jan
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Julie,
Welcome to our group. I am glad you found this website. It has been so helpful with so many wonderful people. I am sorry you have the diagnosis, though. Our hearts are with you. A lot of us here assumed or doctors assumed we had other issues than ANs. I certainly did. My gosh, I never HEARD of ANs until last March!
I chose a doctor who heads up a team that has all the choices involved. I am so lucky. He went through the pros and cons of all approaches and it made me realize how complex the decision is. I really think a lot would say the decision part is one of the hardest things to deal with. BUT with lots of homework and wquestions and second, third and fourth opinions, you will be able to choose the right way to go for you. I am post treatment by 4 months and am having some side effects, but I do not regret my choice, because any of the treatments have issues.
You take care and a big hug to you!
Mary 8)
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Thank you for all your posts! ... Now here's another question: It seems everyone says that with a 1.7 cm I do not have to rush into a treatment decision, but how do I know it's NOT growing faster? Honestly, since finding out, I feel more pressure on that side of my face/ear and the tinnitus is louder and has changed pitch. I wonder if it's just a hyper-awareness now that I know something's in there.
We're trying to be upbeat and matter-of-fact with our three kids (15, 14 and 12), but they sense I'm worried and distracted.
This is a journey, but I'm still in the planning stages and I don't even know where I'm going... (-:
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Julie - it's my understanding the vast, vast, vast majority of AN's are slow growing 1-2mm a year - so I wouldn't be too concerned. Mine is about 2.4cm and I had my MRI in June - I was concerned it maybe had grown and asked if I should have another MRI - but my neurotologist said it's fine to wait till just before the op (hopefully in Feb) - so I'm fine with that.
Since finding out I too have noticed, more pressure, strange pains and slight tinnitus when I'm in quiet places - I think it was there all the time and now that I know that they are symptoms I'm aware that I actually have them - I don't think they've developed in the last few weeks.
I'm sure your kids have sensed you're a bit worried and distracted - kids are pretty good at noticing things like that I think - I'm hoping my work haven't noticed how distracted I am and how it took me a week longer than everyone else to do a task I was given! I'm far less distracted now though than I have been - once you do your initial research and staying up to all hours searching the internet - you'll probably get AN burnout and then glance at things occasionally - that's what has happened with me!
Of course - other people here are far more into this journey than I and can probably offer better advice, and this is just one AN'er to another - but I guess if you are super dooper stressed about it - you can always see about getting a second MRI maybe just to make sure it hasn't grown?
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Julie,
I am so sorry you have to go through all this but this is a great site that will help you!
Since my diagnosis late June 08, symptoms just seemed to come one after another. During the past few months of watching and waiting, I find that my tinnitus gets worse most of the time when my hearing is stimulated to loud or sudden sounds. I find my balance worse when I do not take time to rest or I over work myself. I find that with a little lifestyle change and re-adjustment to my everyday goals, I deal with
the symptoms a lot better! Much luck to you! You have a great start in just finding this site.
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Julie -
while you don't have to rush into treatment, you probably don't want to wait too long either. ANs usually grow slowly, but as they get bigger your symptoms will most likely get worse or you may find you have new symptoms. Also, smaller ANs are typically easier to treat than larger ANs.
Jan
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Hi Julie,
A 1.7 AN is middle sized and you probably won't want to watch and wait for a long period of time and you'll probably be having something done about it a relatively short period of time, but it's nothing you have to do, say, in a month! Or two. Or three. You certainly could safely say you would want to wait until after the New Year, or Spring Break, and be just fine. But, I think, given the size, you'll probably be dealing with it sooner rather than later. I found out about mine early in March of '06 and I had my GK the following month, so I didn't wait long. But, I didn't do what we advise people to do. My neurologist called me up on a Monday and said I had a "mass" (and explained it was an AN) and she had me scheduled to see a neurosurgeon for later in the day. Egads! I thought, oh dear me, I'm going to have brain surgery! He passed me right along to an associate of his, who met with me the following Friday and he is a young doctor who specialized in radiosurgery and he thought that's what I should do. I did not research surgical options. I had just turned 60, and I'm a diabetic and I'm sure they took one look at that and decided Gamma Knife was going to be easier for me to handle. I did not argue with them. I did not know what to argue with them about, for Heaven's sake. I do not care that there is a dying tumor still in my head. It does not give me the "willies", thankfully! ;) It is dying and that's the important thing. So, in my situation, Gamma Knife was probably the better choice.
I did post an interesting link that you might want to read about. It's in the balance issues part, and the subject line says something about Article on Explaining Balance and problems, or something like that. Be sure to read that, because it really does a great explanation of what happens to us when our vestibular system is out of whack. Even if you don't have any "balance issues", you really do, you just don't know it yet. This is a great article and have your family read it too. They will understand better what you are going through.
Hang in there!
Sue in Vancouver, USA
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Hi Julie, I was diagnosed with a 2.5 cm AN in July 2007 and was treated with Cyberknife in August 2007. Mine is on the larger side of "mid-sized" and was increasiongly symptomatic, so the basic instruction when I was diagnosed was that yes, I had time to do research, but that I shouldn't wait more than a couple of months to get treated.
I was very torn between surgery and radiation. On the one hand, I wanted the tumor out, but on the other, I did not want to lose my right side hearing (which was and is very good) and I was afraid of facial nerve damage, which I felt could seriously affect my quality of life after treatment. I did a great deal of research on the different treatments, which I describe in detail in my website below (in my signature line). I sort of describe the step by step process I went through as I was evaluating surgery v. gamma knife v. cyberknife, etc. There's also a section describing my post-treatment symptoms and some general tips for newbies such as yourself. Hope you find it helpful and best of luck. And please feel free to write if you have questions or want to talk.
Sincerely,
Francesco
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Hello Julie, Welcome.
My AN was of similar size to yours and I opted to have surgery, and now am on to Gamma Knife this week to "zap" the remainder. MyAN is siing almost on top of my facial nerve so they really weren't able to get it all during surgery. The choice you make to wait, have surgery, or go the radiation route is one that onlyyou and your doctor can make. Don't rush it. I also see a Dr. at the MI Ear Inst. And i love them. they are soooo wonderful!! I trust in them 100% and they really helped me make my decision. I have had a fairly easy recovery with minimal complications and am back to my "normal" life. I wish you the best of luck in making a decision. If you ever want to PM me feel free as it sounds as if my AN was of similar size and we are seeing the same docs.
Melissa
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Everyone has offered you good advice and let me add one little bit regarding the size/treatment and facial nerve outcome. As Jan stated smaller vestibular schwannomas are easier to remove, they do less damage to surrounding nerves because their size is not compromising those nerves (in particular the facial nerve).
The bigger the tumor is, 2cm and greater in size, surgery to remove the tumor without damaging the facial nerve is made more difficult. Surgery for removing this tumor and it's location is an extremely delicate procedure; hence, the need for surgeons who have performed hundreds if not thousands of this particular surgery.
I'm not sure if you have chosen your treatment yet, but I did want to bring up this little bit of information if you had settled on surgery. I'm not sure about facial nerve damage regarding radiation therapy and the size of the tumor as I had surgical treatment and in hind sight glad I did as my surgeon had to revisit my inner ear/facial nerve and did an excellent job (once again) in saving my smile!
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Hi, Julie:
I've been distracted with the usual vicissitudes of daily life the past few days and haven't had much time to read and respond to posts, but I wanted to reply to yours.
First, my belated welcome and regret that you have to deal with an acoustic neuroma. However, it is benign and certainly treatable. For better or worse, there are options and choices to make, some of which could have a long-ranging impact on your quality of life. This is why doing research - just as you've been doing - is critical and so, highly recommended.
Many AN patients with 'small' (under 3 cm) ANs opt for surgery because, as others have noted, they want the tumor physically removed, mostly for peace of mind. Radiation (GammaKnife, CyberKnife, FSR) is generally quite successful, certainly non-invasive and easier on your body - but it is not risk-free (nerves can still be damaged) and requires frequent (semi-annual, for awhile) MRI scans to track the tumor's shrinkage and cell-death. Unfortunately, as you've undoubtedly been told by doctors who favor surgery, the AN can re-grow, even after radiation and, to be fair, even after surgery, too. There simply are no guarantees. This leaves the final treatment decision up to you - and you alone. It's a tough decision but it has to be made. Please know that we'll help you in any way we can. That's a promise.
Whatever treatment you ultimately choose, Julie, we'll support you. Our members run the gamut from those who chose surgery for a relatively small AN to those who underwent necessary surgery for a large AN, then radiation to kill it's DNA. That would be me. :)
As others have correctly stated, feel free to ask any question. We understand your state of mind and concerns because we've been where you are. We want to help. Please use this site, the forums and our members as a resource. That's why we're here. :)
Jim
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One of the doctors I consulted said the recurrence with surgery is about 1%. He ONLY did surgery. I asked him (much to his shagrin) what it was with radiation, he said 2%. I do NOT know if this guy was correct or not, but he helped convince me to go CK. My CK doctor I never asked about this particular statistic comparison, so that might be something to do research on or to get some clarification about.
Mary 8)
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Greetings Julie, I have just one thought. Don't let travel influence your decision. You only do this once. Get the best treatment wherever it leads you and don't forget we are all praying for you. ,,,,,Larry
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Thanks, Everyone, for all the info and support...I am still wading through all the possibilites, treatments and scenarios...Quite frankly, it's exhausting. I manage to maintain composure at work etc, but when telling friends I've been "losing it"...
Now, to add insult, to injury, I'm either getting the flu or I'm now getting nausea from the tumor...I don't really know which, but it's miserable... What has been people's experience with that? No other symptoms have changed...
My appointment with the MI Ear Institute, Dr. Borjab, is tomorrow. Details to follow...
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Julie,
Once I was diagnosed I was nauseas until after surgery. Nerves. If you do have the flu I'm sorry. Hang in there. It will get better. Will look forward to hearing how your doctor's visit went. Ask lots of questions, take a list, write down the answers and if possible, take someone with you. An extra person in the room will sometimes hear things that you won't because your brain will be busy.
Best,
Marci
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Hi Julie,
I think the best information I got was from Dr. Daspit at Barrow's in AZ. I really did my research and he happens to be a friend of my ENT here in Utah. Dr. Daspit told me one of the main things I could do is determine the rate of growth. Most are really slow growing and I needed to determine if mine was truly growing slow or not at all. I checked with my insurance and they would pay for another MRI after 3 months from the prior one. It showed that it had grown 30%. So I decided to do CK ASAP. If it had shown little or no growth I may have done watch and wait. I am doing well, 3 weeks post Cyberknife.
I do have some balance and dizziness, but had that before and am told it should get back to my pre-ck status at some point. I hope you are able to make an informed decision with the help of this forum. It has been a god send to me.
Hang in,
Sherry
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Hi Julie,
I live in Michigan too. (Grand Rapids) My AN is growing so I have to do something about it soon. Next week I'm going to the Acoustic Neuroma Center at Barrow Hospital in Phoenix. They told me that they do all the "cures" (surgery, Gamma, Cyber etc.) They said they do not push you into doing any one treatment, but instead evaluate you and tell you which treatment they think would be best for you. Then you can either go back there and have it done, or find a doctor in your area to treat you. ( There's no one in Grand Rapids who does Gamma or Cyber either)
If you would like I could tell you how it went when I get back. They sounded very nice on the phone and set up all my appointments in a 4 day period, so I won't have to stay there too long.
My insurance will pay for the doctor appointments and test, but I have to pay for lodging and to get there. I'm hoping because they do so many Acoustic Neuromas at their center that they will be able to give me some good un-biased advice. Maybe they could help you too.
Good Luck
Kathee
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Hi, Julie:
Welcome to our forum.
I was finally diagnosed eleven months ago (after having symptoms for over 7 years) with a 1.9cm AN. All the doctors (3 neurosurgeons and 3 radiosurgery doctors) who looked at my MRI and gave their consultation agreed I could wait six months for a followup MRI to reveal whether or not the tumor was continuing to grow. As all forms of treatment have potentially life-altering consequences, I wanted to know that treatment was absolutely necessary before proceeding. As it turns out, my tumor was growing about 5 times faster than normal. My followup MRI made this clear and prompted me to seek treatment. Fortunately, I had researched my options thoroughly in the interim period between initial and first-followup MRIs, so when I found out the tumor was still growing -- and quickly -- I already had a strategy in place.
I was initially against radiosurgery, until I found out that the statistical chance of it causing malignancy (cancer) was virtually no greater than the risk the general population has of getting cancer. Then came the question of whether I could accept living with the damn thing still in my head (hopefully dead in time, after radiosurgery) or felt I must have it removed for my peace of mind. That was actually easy for me. I figured I'd already lived with it for probably well over 10 years at that point, so it was no big deal to still have it inside my head -- as long as it didn't continue to grow. "Who knows what other tumors I might have elsewhere in my body that haven't been found yet," I mused. "Should I get a full-body scan and have every tumor and cyst removed?" I was the same person I was before diagnosis. I could live with my "ten-year companion" inside me. Especially considering the alternative:
I opted for CyberKnife (CK) radiotherapy instead of resection because statistics indicated (and my doctors advised) that, for my size tumor (which had grown to 2.1 cm) and its location, I had a much greater chance of preserving my hearing and facial-nerve function with radiosurgery: 75% chance of hearing preservation and 99% chance of facial-nerve-function preservation with CK, vs 100% chance of hearing loss and 31% chance of permanent facial paralysis with resection (either translab or retrosigmoid approach). Please keep in mind these exact percentages are based on my particular circumstances; surgery can yield much better results in other patients presenting a smaller tumor and few symptoms).
I chose CK instead of GammaKnife (GK) because statistics show CK has a slightly better record of success at preserving hearing, is non-invasive, and is fractionated (the treatments are split up into mulitple smaller doses, which I thought I might tolerate better). Also, CK delivers only 15% more radiation at the center of the tumor vs at the periphery. In comparison, GK delivers fully twice the dose (100% more) of radiation at the center than at the periphery of the tumor. Because neither form of radiosurgery attempts to avoid hitting important cranial nerves that the tumor may be encasing, GK will deliver a higher dose of unwanted/unnecessary radiation to those healthy structures located at the center of its radiation cloud (this is thought to be the reason why the especially sensitive hearing nerve has a slightly better chance of surviving treatment with CK than with GK).
That's my personal story, but yours should and will be your very own. The choice of what treatment (if any) you should seek is rightfully totally up to you and is a very personal choice. After all, you're the one who will have to live with it. So make it your own.
As far as where to have your chosen treatment performed, I'd say go wherever feels to you like you'd likely get the best results. I traveled far from home to have my CK treatments performed at Stanford University Medical Center in California. Considering my hearing and facial nerve function could potentially be affected for the rest of my life, I felt the benefits of having the very best (from my perspective) doctors and facility treating me far outweighed any inconvenience travel might cause me. My wife and I made it an adventure, eating out at a different restaurant each night and staying at a wonderful Bed & Breakfast in the Stanford area. I am completely happy with my decision to get CK at Stanford. After a rough 4 weeks immediately post-treatment, I began to rebound quickly. I now feel I am 100% back to where I was before CK in terms of well-being. In one particular way I actually feel better than I did before treatment: my tinnitus has decreased in level and its pulsatile component has virtually ceased. (You should know, however, that this is not a usual outcome of CK; I guess I got lucky!)
You're going to be okay. Research your options thoroughly (this forum is overflowing with great research-based information and empirical observations), lean on everyone here for support, and follow your gut instinct on what to do and when, and it will all turn out okay. It's good to have you join us.
Best wishes,
Tumbleweed
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Dear Tumbleweed,
Were you able to send an MRI to Stanford for an evaluation or did you have to go in person? I'm trying to find 3-4 different facilities around the country to send my MRI to, and can't seem to locate the person or department for Stanford? I contacted someone via e-mail and the said I had the wrong department and forwarded my e-mail, but never got a response.
Would you mind giving me the correct department, e-mail, name or whatever information you have that I may contact them, also?
Thanks Tisha
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Hi, Tisha:
I was able to email my MRI and audiogram results to Dr. Steven Chang at Stanford. He eventually became my doctor for CK treatment, but first gave me a couple of consultations -- spaced six months apart -- by phone free of charge. He is awesome. I didn't need an in-person appointment. He answered my emails typically within hours of me sending them, even before I was a patient. He gave me his prognosis and recommendation for treatment by phone, after reviewing my MRI, etc.
Dr. Chang's email address is: sdchang@stanford.edu. That's probably the best way to reach him. Here's his other contact info:
Steven Chang, MD
Department of Neurosurgery
300 Pasteur Dr., Room R-225
Stanford, CA 94305
tel 650-723-5573
You are wise to seek out the opinions of multiple doctors. Not only will you gain different perspectives, you will also feel like you did your homework thoroughly and will therefore enter treatment knowing in your gut that you made the right (i.e., informed) choice. I sought out consultations with 6 different AN specialists across the country, but I remember feeling certain about my course of action after the 4th consultation. The remaining two just confirmed my gut instinct at that point.
Good luck in your quest!
Best wishes,
Tumbleweed
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Thank you so much, Tumbleweed.
I want to send my MRI out this week to Dr. Chang, Dr. Lederman at Cabrini, Johns Hopkins and Staten Island. I'm sort of leaning towards FRS from everything I've researched, but I'm in the wait and watch mode right now, but want to be very proactive. I really appreciate this information.
Tisha
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Tumbleweed,
What made you decide to choose Dr. Chang over the other six? I am going to start out by sending out 3 letters this week, one to Dr. Chang. Would you be kind enough to share with me what it was about him that you felt made him the best doctor for you?
Thanks
Tisha
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Hi, Tisha:
My process was, in chronological order: 1. Decide on which type of treatment was best for me, 2. choose the best facility (the one with the most experience with that treatment), and then 3. choose the doctor who had the most experience with the treatment.
I decided to have CyberKnife (CK) because it: 1. is non-invasive, 2. statistically offered me a much better chance of preservation of my hearing and facial-nerve function compared to resection, 3. is more accurate than standard FSR (theoretically causing less damage to nearby healthy tissues), 4. delivers a more homogeneous dose of radiation to the tumor compared to GammaKnife, and 5. is fractionated (split up into smaller doses, which I thought I might tolerate better), and 6. offers slightly better chance of hearing preservation than GammaKnife.
Dr. Adler of Stanford University Medial Center invented CyberKnife and Stanford had at least 5 years more experience with the treatment compared to any other institution, due to the fact that they exclusively used it in clinical trials between 1994 and 1999, while other institutions had to wait until FDA approval in 1999 to use it. So Stanford was clearly the most experienced facility in using CyberKnife.
I'd heard, I think through this forum, that Dr. Chang had worked for many years with Dr. Adler at Stanford, delivering CK treatment. If I'm not mistaken, he and Dr. Adler are the most experienced doctors with CK at Stanford. (If anyone knows this to be untrue, please correct me.) So as soon as I chose Stanford, I was leaning heavily toward Dr. Chang or Dr. Adler as my physician. The final piece fell into place when I found out Dr. Chang did free consultations for people diagnosed with an AN. I sent him an email asking if he would be so kind to do this for me. The email was sent on New Year's Eve, yet I got a personal reply from Dr. Chang within two hours! That impressed the heck out of me and gave me confidence I would get the attention I needed when undergoing such a major operation. I also liked that Dr. Chang is a neurosurgeon. When he told me he thought CK was my best option, it carried more weight because I knew he also did resection. One other thing: when Dr. Chang advised me by phone (twice, once for the initial MRI reading and then again for the followup MRI), he never made me feel rushed. He answered all my questions without hurry and with respect for my right to make decisions for myself. As a result, I felt really clear about my options after we finished talking.
I can't praise Dr. Chang, Iris Gibbs (my radiation oncologist), and the entire staff at Stanford enough. I felt that everyone treated me with great care and professionalism. I never felt like my case was being lost in the shuffle. To this day, my emails are always answered promptly and thoughtfully. I feel like I made the right choices.
Best wishes,
Tumbleweed
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Tumbleweed,
Thank you so much for your lengthy response and all the information. I have printed it out and plan on using it to help with my decision. I will be sending Dr. Chang and Dr. Adler my information within the next two days. I appreciate all your help.
Tisha