ANA Discussion Forum
General Category => Inquiries => Topic started by: knakag01 on December 17, 2009, 04:55:50 pm
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Hello...
My name is Kim, I am a 33 year old mother/partner/enrollment counselor living in Northern California. At this time my partner stays at home with our daughter while finishing his BS and I am the sole provider for the family (we swapped roles last year after I graduated with my BS/Business).
I was diagnosed with a 19mm x 12mm Acoustic Neuroma in November of this year, when doing an MRI for an existing pituitary adenoma (good news: Pituitary Adenoma has shrunk away with meds!) I have had decreased hearing over the past three or four years. I thought maybe I had gone to one too many concerts or was just getting older. I have also experienced balance/dizziness issues. I thought after dancing (ballet/jazz/hip-hop) for many years, I had just gotten out of shape and needed to re-strengthen my core. Never did I think that I had, yet another, growth in my head!
I found the ANA soon after my diagonsis and it has been a valuable resource. I found these message boards just this week after meeting with a neurosurgeon who told me surgery was my best option.
Sooo...they're going into my head, working around my brain, balance nerve and facial nerve??? This can't be good. I am quite concerned with the amount of time I may need to be out of work and the on-going issues that most people seem to deal with after surgery.
I am told the Translab approach would best work for me, as I have about 12% hearing in my right ear at this point, and the AN is extended into the internal auditory canal. I am being referred to Stanford for the surgery. Does anyone have any expereince with Stanford (Dr. Jackler) or the Translab approach? I would love to hear your stories, experiences, advice, etc.
From what I can tell, based on the posts I've read thus far, this is a group of supportive and caring folks. I am so glad to have found you!!
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Hi, Kim - and welcome!
I'm so glad that you found the ANA website and now, these discussion forums.
Many of our members have had their AN removal surgery performed at Stanford University Medical Center, have undergone the Translab surgical approach and many have been under the care of Dr. Jackler - and had great outcomes and recoveries. I'm sure they'll be posting here, soon. I trust that your surgery will be a resounding success and that your recovery will be uncomplicated, rapid and total.
Jim
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Hi Kim and welcome to our little exclusive club! It's perfectly normaly to be in utter amazement and shock when you're first told about the AN. Just out of curiosity, have you looked into possible radiation treatment? At the current size, you're well within the size limitation.. That would likely a good option given your concerns about being able to work soon after treatment and not miss time at work and especially given that you're the sole provider for the house. There may very well be a good reason that it wouldn't work in your case, but it's at least worth exploring to know for sure.
I'm glad you found us and we'll help anyway that we can!
Regards,
Brian
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Hi Kim.
I don't have any advice on the doctor you mentioned, as I'm on the other coast, but I do know I've heard good things about him.
Just wanted to welcome you and tell you it's perfectly normal to be nervous at this point. We've all been there. The more you research your options and talk to those that have been in your shoes, I think the less nervous you'll be.
Welcome to the family!
Lori
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Welcome to a good, safe, and supportive place to be. Lots of great folks to help, advise, cheerlead, sympathize...and some free, great information is also available from the ANA if you havent already contacted them.
You might find our forum to be a bit addictive...i know i did after i got my diagnosis (in Aug of this year)...it has turned out to be a very good habit for me....helped me be methodic and persistent and organized in finding a treatment, physician that "had the right vibes" for me...the more you read here, the more you'll know when you are asking questions, etc about the doc and about the treatment options
again, welcome
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Sooo...they're going into my head, working around my brain, balance nerve and facial nerve??? This can't be good. I am quite concerned with the amount of time I may need to be out of work and the on-going issues that most people seem to deal with after surgery.
Hi, Kim and welcome to the Forum ;D
Yes, the possible side-effects of AN surgery are a little disconcerting - to say the least - but keep in mind that side-effects are not "givens" they are possibilities. And also keep in mind that side-effects do improve or go away completely over time. And, in addition, the vast majority of those with "on-going issues" do quite well with them and lead wonderful, full lives.
Everyone is different and you don't know what your outcome will be until you get to your destination. I had a very positive surgical experience, but that doesn't mean that my recovery didn't take time - it's kind of the nature of the beast. My only permanent side-effect is SSD (single-sided deafness) which has been greatly improved by a BAHA implant.
Returning to work is different for everyone. A lot depends on the type of work you do and what you encounter post-op. I work a desk job and returned to work part-time 2 1/2 weeks post op and full-time at 4 weeks. The typical AN patient who has surgery returns to work 6 weeks after surgery, but some return sooner; some return later. The same goes for driving post op; some drive within a few weeks, others take longer.
As Lori said, it's normal to be nervous but doing your research will help a lot. So will reading the posts on the Forum, as well as the literature the ANA will send you if you request it. The ANA will also send you a WTT (willing to talk) list which is another great resource.
Like Pooter, I'm curious. Have you looked into radiation? Dr. Chang @ Stanford has a stellar reputation. I'm not questioning your choice of surgery - if it's a choice you've already made - I just want to make sure you've covered all your bases before you make your treatment decision.
Best,
Jan
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Jan,
Thank you so much for your insight and encouragement!!
I haven't looked into radiation, as it hasn't been presented to me as an option. It has been such a whirlwind, but I have a list of items to discuss with Dr. Jackler when I meet with him. Radiation will definitely be on the discussion list!
Take care,
Kim
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Kim,
I am reading your story and it sounds so simalar to mine. I too was diagnosed in Nov. 09 and my husband is out of work right now and I am the solo supporter of the family we have 2 girls 12 and 4. I am very nervous about what to do. I am leaning in the way of CK. But I still have not consulted with the Drs or radioligest just yet. One thing I can tell you the people in this forum are great. So far they have been very helpful.Just do your research and talk to as many people and Drs as you can before you make your decion. I know thats what I am going to do. BTW I too live in Nor Cal, the Sacramento area.
Ginger
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Kim~
Hi! Just popping in to say hello and welcome! You've already received some great info here but if you would like to talk to someone who has "been there" - PM me your number and I would be glad to call you!
K ;D
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Kim,
I would echo Jan's comments that as long as you are going to Stanford, you should include a consult with Dr. Chang. I also consulted with Dr. Jackler and he is a world class AN surgeon. He works primarily with Dr. Harsh and on occasion with Dr. Chang on AN's. Had I opted for surgery I would have chosen him. I like Dr. Chang because he does both CK and surgery and I feel he always gives a fair view of both and recommends which one he sees as providing the best outcome for the patient. As long as you are in the research stage I think Chang gives you a more balanced view of understanding the options than Jackler who is pretty biased towards surgery. But again, if you really want surgery, Jackler is a great choice.
A couple of links to both
http://stanfordhospital.org/profiles/physician/Steven_Chang
http://stanfordhospital.org/profiles/physician/Robert_Jackler
Good luck
Mark
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Kim .....
Adding my welcome to this forum of caring, supportive people who have been on this road.
Stanford is well recognized as having an excellent medical facility for treating ANs so you can rest easy on that. I did not have translab (I had retrosigmoid) so someone else can assist you better on that question.
Best thoughts.
Clarice
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I do not give much advice only one word research, research, research my prayers are with you.
Regards,
Pat
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Wow Ginger, our stories are very similar! I moved from Sacramento back to my hometown, Chico, in '07 when my daughter was born. Have you determined where you'd like to have your treatment? I am meeting with Dr. Jackler at Stanford on Jan. 5th. Not too far from us, so I'll have to let you know how it goes. :)
Kim,
I am reading your story and it sounds so simalar to mine. I too was diagnosed in Nov. 09 and my husband is out of work right now and I am the solo supporter of the family we have 2 girls 12 and 4. I am very nervous about what to do. I am leaning in the way of CK. But I still have not consulted with the Drs or radioligest just yet. One thing I can tell you the people in this forum are great. So far they have been very helpful.Just do your research and talk to as many people and Drs as you can before you make your decion. I know thats what I am going to do. BTW I too live in Nor Cal, the Sacramento area.
Ginger
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Mark,
Thank you so much for the guidance. I really appreciate it! It is so great to hear from someone who has gone to Stanford for treatment. May I ask you if you would mind sharing your experience/story (pre and post CK)?
Thank you!
Kim,
I would echo Jan's comments that as long as you are going to Stanford, you should include a consult with Dr. Chang. I also consulted with Dr. Jackler and he is a world class AN surgeon. He works primarily with Dr. Harsh and on occasion with Dr. Chang on AN's. Had I opted for surgery I would have chosen him. I like Dr. Chang because he does both CK and surgery and I feel he always gives a fair view of both and recommends which one he sees as providing the best outcome for the patient. As long as you are in the research stage I think Chang gives you a more balanced view of understanding the options than Jackler who is pretty biased towards surgery. But again, if you really want surgery, Jackler is a great choice.
A couple of links to both
http://stanfordhospital.org/profiles/physician/Steven_Chang
http://stanfordhospital.org/profiles/physician/Robert_Jackler
Good luck
Mark
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Kim,
sure, glad the information was helpful
Here's a link to my AN story on the Cyberknife patient page. It has only been updated through my 6 year check up in 2007, but I had my 8 year last month and it would read the same
Mark
http://www.accuray.com/uploadedFiles/Patients/Patient_Stories/Mark%20Patient%20Story%20FINAL.pdf
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Wow Ginger, our stories are very similar! I moved from Sacramento back to my hometown, Chico, in '07 when my daughter was born. Have you determined where you'd like to have your treatment? I am meeting with Dr. Jackler at Stanford on Jan. 5th. Not too far from us, so I'll have to let you know how it goes. :)
Kim,
I have not made my decion on where I will have treatment. My insurance is an HMO and I am in the UC Davis medical group. So I have not just yet looked into getting a referral outside of the network. My Dr is Rodney Diaz. He is UCD's AN specialist. I have only met with him once, for my diagnosis. I have another appointment with him on Jan. 27 to discuss what my options are. I am going to start there. The only thing is he has told me so far that surgery would be my best option. After my meeting with him I think I am going to consult with the radiolgest specialt with UCD, and then check with my insurance and see what it will take to go out of network and talk with the people at Stanford. Please let me know how it goes.
Ginger
( cleaned up the quote)
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This was a great help, Mark. Thank you so much for sharing! I definitely need to explore Cybeknife treatement. It is strange to me that none of the doctors I've seen thus far have suggested it.
Kim
Kim,
sure, glad the information was helpful
Here's a link to my AN story on the Cyberknife patient page. It has only been updated through my 6 year check up in 2007, but I had my 8 year last month and it would read the same
Mark
http://www.accuray.com/uploadedFiles/Patients/Patient_Stories/Mark%20Patient%20Story%20FINAL.pdf
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Hi Kim and welcome!
Just reading the posts. You have some great advice and buddies already and that is what really helps.
I was also wondering why the docs didn't recommend cyberknife. It's a breeze compared to surgery. Doctors recommend what it is that they do the most. That's why it is so important to get different opinions.
I had no choice except translab due to location.
Try not to fret over the holidays. The little booger is not going anywhere!
Will be interesting to hear what your outcome is.
Take care and happy holidays to you and your family.
Maureen
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This was a great help, Mark. Thank you so much for sharing! I definitely need to explore Cybeknife treatement. It is strange to me that none of the doctors I've seen thus far have suggested it.
Kim
Kim,
sure, glad the information was helpful
Here's a link to my AN story on the Cyberknife patient page. It has only been updated through my 6 year check up in 2007, but I had my 8 year last month and it would read the same
Mark
http://www.accuray.com/uploadedFiles/Patients/Patient_Stories/Mark%20Patient%20Story%20FINAL.pdf
Assuming your initial diagnosis was by an ENT, it's not totally surprising (but is disappointing) to me that CK or GK were not suggested as options. The reality is that many ENTs may know how to disgnose an AN , but they do not stay current on treatment trends and standards. this is especially true of older ones where surgery was the only option back when they were in medical school. I would dare say that there are many of us on this forum that would score higher on an AN test than many ENTs
Mark
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I would dare say that there are many of us on this forum that would score higher on an AN test than many ENTs
Ain't it the truth ::) The best things my ENT did for me were 1) order my diagnostic MRI and 2) refer me to an outstanding neurotologist.
I saw my ENT after my AN surgery and mentioned that I ended up SSD and was seriously looking into having a BAHA implant - and he had no idea what I was talking about.
Jan
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I echo Mark's opinions...people recommend what they know best .That's why the best thing i did was listen to forum members here, and talk to quite a few physicians (including sending off my MRI images/notes to those who indicated the most interest in working with me). (Note: I think HOUSE in Los Angeles is still doing free phone calls/phone consults after they get your MRI info..check their website)
I had Linac (a type of radiation/radiosurgery treatment) at Univ of Fl on Dec 1 of this year, so it's been 3 weeks since treatment. Radiosurgery was not even mentioned as an option with first neurosurgeon i talked with, and i was very bothered that he was so so insistent on ony doing one particular type of surgery on me, especially since i had usable hearing in my right ear. i called his office later, and asked how many surgeries he had done, and found out he had not even done that many surgeries...(i guess he wanted to use me to "up" his surgical procedures count...who knows? That's why it's important to take the time and effort to talk with lots of neurosurgeons, about ALL possibilities.
After talking with lots of other surgeons, i was able to make decision to do radiosurgery, and since there were also some other medical issues, this was the best option for me. I have been totally with happy with my decision, and am feeling fine...some mild dizziness (existing prior to the Linac) when i stand up, move, turn, sneeze but am fine while sitting, and am ready to go back to work, and am already ridiing horses again. (carefully, walk, shor trots, and i ALWAYS wear a helmet, even before all this)
Mark's article about his AN is excellent, and it was a great help to me. Hope it helps you as you move toward making a decision. And it is never really easy, but at least you can make an informed decision that you are comfortable with in your heart, and that's what counts.
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I'm not a doctor either but I've had both microsurgery (retrosigmoid approach, I think) for a 4cm, golf-ball sized AN and then Gamma Knife for a 2cm meningioma (benign brain tumor). The AN neurosurgeon was great and did a fantastic job. My AN was too big for radiation - or at least that was the advice at the time (1998). Recovery took several weeks even though I was walking pretty well a few days after the 15 hour surgery. When the 1cm meningioma (that they had found when they found the AN) started growing a few years ago, I met with a different neurosurgeon (my original neurosurgeon had moved out of the area) and he gave me a choice of either another craniotomy or Gamma Knife. He told me to think it over, which I did for about 2 seconds, and said Gamma Knife for me. The Gamma Knife surgery was amazing. Instead of a 15 hour invasive surgical procedure, I spent several hours getting very accurate MRIs and spent a short while being irradiated and that was it. I walked out that day, went home and took a nap, and the next day went to a picnic with my family. It was amazing. I think it's true that a doctor will tell you what he or she is most familiar with. My last neurosurgeon was certified in both procedures. I'm out on the east coast but I'm sure there are doctors out there who could give you advice on both. I had good experiences with both. However, if I had to choose now, I would definitely go with radiation. I had the Gamma Knife "surgery" on a Friday and was back at work the following Monday. Kind of amazing.
Best of luck, and happy holidays!
Gail Melson
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When I was diagnosed I did not do any research just the basic about what a AN was did not know about the many different options out there either. I guess mostly at first I was just in shock and several of my doctors in different fields all said surgery was their only recommendation as to have the tumor removed. I did but now if I did all the research I am not completely sure I would have done things differently I ask myself that question everyday... but then again they say that the tumor is completely removed and I guess in one way I feel better that I know that it is out of my head. Just research and make sure you feel you have made the right decision and have no regrets.
Regards,
Pat
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Hi Kim, and welcome!
Glad you have found the this Forum, as well as others linked to it (like Cyberknife). The folks here are FANTASTIC, as you already know!
I believe it is important to research all your options, too - i am still doing this after 1 year.
My thoughts and prayers are with you on your AN journey!
Please keep us posted on your progress.
Sincerely,
Sue
PS My nephew and family live in Orland, CA - we visited in May, 2008 - lovely up there!