Newbie- Has Anyone Had Microsurgery with Dr. Jackler or Harsh at Stanford?

[Michelle K]

Hello All,

I'm a newbie, diagnosed in November 2009 with an AN, 1.3 x 1.7 cm (most in IAC but about 3 mm outside).  I'm 40 years old, and a mom.  I just want to say that I am very grateful for this forum, and it has been very helpful to know that I am not in this alone.

I recently met with Dr. Jackler at Stanford, who advised microsurgery via Mid-Fossa or Translab.  I only have 36% speech recognition, so he advised the Translab approach to give the best odds of preserving my facial nerve.  In my interview, he gave me statistics that with the Translab I have 30% chance of temporary facial paralysis and 1-2% of permanent, and with Mid-Fossa, 50% chance of temporary facial paralysis and 3-5% permanent.  I've been on YouTube (scared myself), and reading this forum extensively, and it appears that a lot more people than I expected, have experienced facial paralysis, with tumors similar to the size of mine.  Aside of surviving, this is my biggest concern.  I've pretty much given up on having an hearing in that ear based on my research.

So, I guess I'm wondering if anyone has had an experience with Dr. Jackler (formerly at UCSF, now at Stanford) and Dr. Harsh at Stanford.  And if so, how was your experience?  It's my understanding that Dr. Jackler is well known and skilled, but who better to ask than previous patients?  If anyone is out there, and willing to share, I would greatly appreciate your input.

Thank you!

Michelle

[derekQ]

Hi Michelle,

I'm sorry for hearing your news here. But please don't panic and you are not alone. Also, you will usually have plenty of time before you have to make your decision. Thanks for God's mercy. Everyone has his own unique situation in AN, there won't be a universal solution here. But let me give you some of my experiences and you may get some insights here. Then you will need to do your homework and researches to find out the best approach for your AN.

Before I saw Dr. Jeckler at Stanford, I had seen Dr. Joseph Roberson(microsurgery doctor) at California Ear Institute and Dr. Steven Chang(microradiation doctor) at Stanford. Dr. Joseph suggested me to go with Middle Fossa Surgery for minimizing the sugery side-effects and reserving my current hearing. Then Dr. Joseph suggested me to go with microradiation for less side-effects. Before i visited Dr. Jeckler, we knew that Dr. Jeckler is a microsurgery doctor too, so my wife and myself pretty much made our mind already to go with microsurgery with Dr. Jeckler at Stanford. Then, a big supprised to me, after i saw Dr. Jeckler, he found other two small trigeminal schwannomas on my trigeminal nerve too. So, Dr. Jeckler diagnosed me having a Neurofibromatosis Type 2 (NF-2), although I'm still not got fully convinced by This NF-2 result currently based on a quite extensive researches and the medical documents I have read so far.

I was not sure what exactly triggered Dr. Jeckler to decide me to neither go with microsurgery nor go with microradiation. Instead he suggested me to just go with “watch and wait”. He either thought that my NF-2 case needs to be more conservative and more careful on any surgery or he saw my symptom was quite minors and I was in pretty healthy state or maybe both. So, after the first meet with Dr. Jeckler March, 2008, he asked me to have first two 6-month MRI follow-ups, then 1-year MRI follow-up. All MRI follow-ups so far showed no progress on my AN. I thanks God’s mercy on me and also thanks Dr. Jeckler to save my life. Before I meet with Dr. Jeckler, I already heard quite lots of good words on him. An AN patient in ANA Discussion Forum told me that “either Dr. Joseph or Dr. Jeckler, you have been in the best hands already” and this really inspired and encouraged me a lots. I still remembered when I visited Dr. Jeckler first time, before Dr. Jeckler came in, there was an assistant talking with me. He told me that Dr. Jeckler was a good doctor and he often can see something many other doctors have missed. That was exactly my case here. Except his excellent medical knowledge and experiences on AN field, he also is a good man and care about the long term benefits of the patients instead of only increasing his own microsurgery business.

Here are some suggestions I want to give you:

(1)   You are NOT in the end of world. Be strong in yourself to fight against this AN. Get your family to support and comfort you in this very difficult period of your life.
(2)   Get some helps on both AN knowledge and also spirits from those previous AN patients and a lots of people in ANA forum gave me warm encourages and good advices. You may even call and talk to some peoples there. Remember you are not alone.
(3)   Do your homework from webs like ANA and some other medical sources. You have to build up your own knowledge and confidences on AN.
(4)   Talk to some best doctors in AN fields whom you can get. The good thing is you will have a plenty of time before you have to make a final decision on what approach you are going to take. Don’t talk to only one doctor and you will need some doctor reference-check and get some different opinions. So, take your time.
(5)   If you decide to go with microsurgery, I want to give you the same advice that I got from ANA forum before: “get yourself into someone’s hand who has done a lots of AN surgery already”.
(6)   For AN doctors source, I’m living in Bay Area near San Francisco, California. So, here are some I knew so far:
(a)   Dr. Robert Jeckler at Stanford (microsurgery);
(b)   Dr. Steven Chang at Stanford (microridiation);
(c)   Dr. Joseph Roberson at California Ear Institute; (microsurgery)
(d)   House Ear Clinic in Los Angeles (AN specialist clinic mostly on microsurgery); they can provide free remote-consulting service for you.
(e)   Some AN doctors in UCSF(University of California at San Francisco) medical center. I remembered some doctors whom ANA forum mentioned as Dr. Jeckler partner long time ago, but I forgot his name already and you may find it in ANA forum. Actually, Dr. Jeckler had staying UCSF for a while before moving to Stanford.
(f)   Dr. Scott Plotkin at Neurofibromatosis Clinic of Massachusetts General Hospital, Boston.

     
Here are some info I can give you at this point. You can either post your more questions on ANA forum or just directly email me if you want any more other information from me. I’ll try my best to give you some helps.



God bless you!
Derek Wang

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[derekQ]

Hi Michelle,

I just read your post message here after I have received and responsed your email. It looked like you already met with Dr. Jeckler and you guys were already talking about Mid-Fossa or Translab approach. But i still suggest you to get some other doctors' opinions before you make your mind to go with any one doctor. Probably House Ear Clinic at Los Angeles will be a good resource for you AN. Also, even you already made your mind to go with microsurgery, it probably worths to consult with radiation doctors to get an idea on radiation option. In a word, you don't need be in a hurry on dealing with your AN.

Let me know if you need any more info from me.

Best wishes!
DerekQ   

[Michelle K]

Thank you Derek,

Yes, I do have an appointment for a second opinion with Dr. Brackmann at the House Ear Institute in January.  I've read a lot replies to a thread about Dr. Brackmann, which were all very positive, and I think he's definetely someone I'd like to talk to as well.  Just curious about any experiences with Dr. Jackler and Harsh.  Also, am looking into meeting with Dr. Chang at Stanford for a radiosurgery perspective.

Thanks again for all of your wonderful insight.

Michelle