Dx AN confirmed 11/4/07. 4 to 5mm x 2.5mm, options/referrals in area??

[Janice in Al]

Hello...I'm Janice, a newbie to the AN society and looking for referral, or qualified physicians in my area. I live in south west corner of Al near Pensacola, Fl. An ENT in Mobile, Dr. Mark Gacek diagnosed a 4 to 5mm x 2.5mm on left internal auditory canal. He also states the lesion is centered on the superior and posterior aspect of the seventh/eight cranial nerve complex.  I do not understand all this so if anyone does please enlighten me as I would like to know enough to make a wise decision.  Dr. Gacek suggested surgery asap entering from above the canal and was not a believer in radiation. Please give me the benefit of your experience and suggestions.  I have lost 20% of the hearing in left ear, have had occasional sharp ice pick pains above ear in the past, also had a few bouts with what we thought was inner ear balance over last 3 years, with dizzyiness which lasted 24 hrs, but okay now. Had severe roaring in left ear a month ago & went to see ENT. I have noticed my memory has not been right for several months and I forget things often. This is getting worse daily. I do not even type what my brain is thinking for the last month transferring letters & leaving unfinished words, etc.  I am a director of patient financial services for a hospital and depend on all these things to function. Please tell me if it is going to get worse? What treatment do you suggest...surgery or Gk or CK for my diagnosis?  Thanks so much, Janice

[1wareagle]

Welcome Janice,

I just read your ID and realized you live close to me. I live in Southeast Mississippi, about 75 miles from Mobile. You have definitely come to the right place to get information concerning your AN. I can't help you with GK or CK but I'm sure many on here will chime in with plenty of suggestions. I had trans lab surgery, because of the size of my AN, 10 mts ago in Los Angeles. Before I chose to go to LA I saw a doctor at the UAB in Birmingham. He was not real sure what procedure I needed, at the time, so I went looking for a 3rd opinion. I had suffered from some of the same symptoms you are having, for 4 yrs ,before being diagnosed. AN's can be scary but not life threatening so do your homework and research before settling on a procedure.

Good Luck,
Ellis

[sgerrard]

Hi Janice, sorry to hear about the symptoms and diagnosis, and welcome to the club. 

I assume you had an MRI with contrast as the basis of the diagnosis. If not, you should get one, it is the definitive test.

If you can, call the MRI place and get a copy of the MRI and radiologist report on CD. If you can't make your own copies from that, ask for several.

Then I would get onto the cyberknife support forum here:
http://www.cyberknifesupport.org/forum/
In addition to getting up-to-date information on radiation (I think your ENT is going by the old 1991 NIH consensus that radiation is for old people, sick people, and sissies), you can ask around about ENTs with experience in treating ANs, and explore issues in radiation treatment.

I would also get in email contact with one of the doctors on the same site:
http://www.cyberknifesupport.org/about_the_doctors.html
You could contact Dr. Medbery in Oklahoma, or Dr. Spunberg, in Palm Beach Florida. Email addresses are at the link. They both respond frequently to questions posted on the forum, and will respond to email as well. I believe Dr. Medbery will offer to evaluate your MRI for you no charge, but I would email him first to see. I contacted Dr. Chang at Stanford, CA this way, and then sent him a CD copy of the MRI and lab test reports.

For a small tumor, when balance is not a big issue and there is useful hearing worth preserving, it makes a lot of sense to use Cyberknife. The results in the last 10 years have been very good. I assume since you are posting under radiation that you want to find out more about it.

The surgical approach you doctor mentioned as "from above the canal" is called middle fossa. In some cases, it produces very good results and preserves hearing. However in other cases hearing is lost, and some facial nerve issues result. If you are considering surgery, I would do some research on it on this forum, and seek out a center that does AN surgery well. There is a good ear clinic in Tampa, for instance.

Steve

[leapyrtwins]

Janice -

my AN was larger than yours but it was also on the 7th and 8th cranial nerve.  I had retrosigmoid surgery on 5/31/07. 

I'm in Illinois, so unfortunately I can't offer you any advice on a doctor near you other than to suggest that you check the list of doctors on the ANA website.  Also, if you haven't already, you should request a packet of information from the ANA.  It is very helpful and will give you some idea of your treatment options. 

I don't know why your doctor is saying surgery, as opposed to watching and waiting or radiation, since your tumor isn't that large.  Maybe he doesn't do radiation.  In any case, you should be informed of all your possible options before you choose surgery.  Everyone is different and you may decide that radiation is a better option for you.  Whichever treatment you choose, you need to find the best qualified doctor that you can - someone who has a lot of experience in treating ANs.

Good luck and let us know what happens,

Jan

[Omaschwannoma]

Hi Janice,

I'm in S.Florida and traveled to Shands at University of Florida for consults with Neurosurgeons/Neurotologist Drs. Friedman (radiation), Antonelli and Lewis.  You are close enough to begin your interviewing and discussions on which way you want to  treat.  I chose microsurgery with Antonelli/Lewis based on multiple interviews including Miami, lots of reading on treatments and finally chose surgery because "it felt right".  Take your time, take your tape recorder and/or friend to any and all interviews with doctors.  This tumor is slow growing (but you probably know this by now) so you have plenty of time to weigh your options.  Please feel free to ask any questions that may arise as you already know we are here to help.

I am almost 3 years post surgery and teaching yoga. 

[Janice in Al]

Thank you all for taking your precious time to reply to my post.  Jan, I think my ENT was rushing me toward surgery due to the 20% loss of hearing already. We know from past symptons I have had it at least 4 - 5 yrs. a month ago had severe roaring in my ear which lasted two weeks. The steroids made it go away for now, but not sure how much time I have before it returns.  Can anyone tell me if the large scare behind the ear is obvious or does it gradually get better. Do all the surgeries have obvious scars? I wear my hair very short and worry about that if I go with surgery, but of course my hearing and facial nerve is more important. Just concerned because I am a woman and kinda vain.    I am leaning toward radiation, but I do not like the idea of leaving the tumor in my head and still not knowing the damage it could be causing. That could cause a lot of sleepless nights, I would think. How do you all cope with that? I am strong mentally and know I can handle anything, but just want to do it once and make the right decision so any information you have is appreciated.  Thanks  Janice

[lori67]

Hi Janice.

I don't live in your area, so I can't be of much assistance in that respect (although I was in Pensacola for the first time last April - nice beaches).

I was also concerned about the hair issue - you are definitely not alone in that respect!  I wear my hair fairly short - not super short.   My scar is above and behind my ear and stops right about the level my earlobe stops.  My hair covers all of it.  I think if I let it get longer and tried to pull it back into a ponytail, you might be able to see a little bit of it, but not much.  Mine healed really well and I have to admit, I've probably left worse scars on myself from shaving my legs!

I had my surgery last February and the one for my BAHA implant last week - so I've just accepted the fact that this is not my year to have a really good haircut.  You'd be amazed what a good hairdresser can do to camoflauge all these things though!

I thought I'd be more self-conscious about the scar, but I honestly don't mind anymore - it's like my battle scar - and I won this battle!

Hope you find the doctor you need in your area.  I'm sure someone will be able to help you out with the more important things - I'll just worry about the hair!
Lori

[Omaschwannoma]

My hair was past my shoulders before surgery and after my hairdresser fixed the problem with a super short cut and I have kept this style ever since.  You cannot tell. 

[leapyrtwins]

Janice -

I wear my hair short (collar-length) and my scar is not visible at all.  I can feel it with my fingers underneath my hair, but others would have no idea it's there.  The end of it is behind my ear lobe and if you were to stand behind me and look over my shoulder you honestly wouldn't notice it.  I don't know about others, but my incision healed extremely fast.  By the time the doc removed the stitches - 9 or 10 days post op - my hair was already growing in around the scar. 

Regarding survey vs radiation, don't be rushed into a decision.  Make sure you take time to investigate your options and the possible side-effects of each.  Although your hearing is diminished and it's a concern, surgery may or may not solve the problem.  I had diminished hearing and had retrosigmoid surgery in hopes of saving it, but because of the location of the AN, it was a choice between my facial nerve and my hearing nerve.   My docs chose my hearing nerve; a choice that I fortunately agree with even though it left me deaf on my AN side.

I can totally relate to your feelings on radiation and the fact that it leaves the AN inside your head.  That was one, of several factors, that made me choose surgery.  I just couldn't imagine the stress and worry related to waiting to see if the tumor had "died" or not.  I just wanted to have the tumor removed and go on with my life; end of story.  I figured I had enough things to worry about without wondering if the AN inside my head was growing. 

Although surgery was the right choice for me, I'm sure there are others who had radiation who found that choice right for them.  You'll know what is right for you in time.  Just make sure you are informed and dealing with qualified doctors.  Not all ENTs are qualified or experienced in AN surgery and/or radiation.

Jan 

[Jan2]

Hi Janice:
In the past five years of dealing with our daughter's 7th cranial nerve (facial nerve) schwannoma, we've talked to several doctors across the country and sent copies of  her MRI's for their review.  (You can obtain copies of the MRI's on CDs.)  It's amazing how wonderful and how helpful they have all been.  I don't regret at all having several experts render their opinions.   We chose Dr. William Slattery at the House Ear Clinic in Los Angeles and we know he was an answer to our prayers. 
Best of luck to you! 
Jan
Louisiana

[Janice in Al]

Thank you so much for all your words of assurance and comfort.  It is great to know the scar will heal well and will not a big issue with short hair. Please tell me how many trips did you have to make to the House of Ear in LA. My concern is how many flights I would need to take to LA pre-surgery, etc?  How often are the checkups post surgery? How long in the hospital and did you then go home or have to stay in the area? So many things to be considered it is mind boggling. How do I send my MRI film to the physicians for review.  I have the MRI CD, but how do I contact them to submit it? Do many people reserve their hearing or have to make the choice of facial nerve or hearing? I really do appreciate your answers very much.  Janice

[Jan2]

Hi Janice:
Unfortunately, we are dealing with a facial nerve schwannoma (7th cranial nerve) rather than an acoustic neuroma (8th cranial nerve) so our situation is a little different. 
With surgery, there is virtually no chance of my 21y/o maintaining her facial function on the affected side.  Radiation is our only option.  Thankfully, during the time of waiting and watching for the past five years, the research studies are showing great success with GK to the facial nerve.  Dr. Slattery said what they are finding is that motor nerves are much more resiliant than once thought. 

When she was first diagnosed, we were told that we needed to wait and watch and that when or if it began pressing on the brainstem or with facial paralysis, surgery would be indicated and this would result in complete facial paralysis on that side.  (All the experts we spoke to were in agreement of this plan for a then 16 y/o.)      I understand about wanting to just have it removed and gone.  Dr. Slattery told us to just think of it as a "mole."  Although it's not always been easy, we've done the best we could to accept the presence of this and to go on.  She really doesn't care if her hearing is made worse or not with this procedure.  She just wants to keep her facial function.  She has muffled hearing in that ear already.

Needless to say, we are nervous but very excited that we have an option we didn't have in the past.  In our situation, we just can't get into the worry mode of "what if" with the treatment.  We're taking this option as a God thing and we are thankful! 

I agree with the others posting, do your homework.  I have found nothing but wonderful, helpful doctors and their staffs across the country willing to help us.  Over the past five years, I really don't remember how many I have spoken with but they all agreed with Dr. Slattery's plan to watch and wait.  With continued gradual growth, and the recent success with GK on facial nerve tumors, the other experts agree with Dr. Slattery's plan to perform GK now.

I'm sure others can tell you of more but we've spoken with doctors at Stanford, University of Pittsburg, New England Gamma Knife, and House Ear Clinic.  There are others,  I just can't recall them all right now.  Our MRI facility here at home has been so accomodating and has made copies of CD's of all of our daughter's MRIs.  I've just made contact with the doctors by phone or e-mail and forwarded the CD's to them.  Some have phoned with their opinions, some have written letters and some have e-mailed. 

Best of luck to you!  If I can assist in any way, please let me know. 
Jan2
Louisiana

[ppearl214]

Jan, your daughter is very lucky to have you... she truly is

Question.... what has your research about cyberknife shown?  Have you had a chance to visit the CK Patient Support Board to inquire, as well, to patients and docs there about the situation?  I know of a few that had/have facial schwannomas that have posted there. Just curious, nothing more. Sounds like your homework is truly helping you out. Great job!

Phyl

[Jan2]

Thanks, Phyl.  My husband and I both have said over and again we would be thankful if we could have this tumor instead of our child.  Actually, we visited Dr. Jackler (re: CK)  two summers ago and we also met Dr. Slattery for the first time.  They are both awesome!  At that time, Dr. Jackler agreed with Dr. Slattery to continue the wait and see approach in a patient so young.  Now that this schwannoma is showing that it is not just sitting there, we are faced with having to do something at this time.  Thank God she has no new symptoms and most importantly no facial paralysis. 

Now, we have a 21 y/o very independent adult child who will be graduating from college in May 2008 and we have to respect her decisions.  I present the information I find and she makes the ultimate decision.  After learning from Dr. Slattery in August that something needs to be done soon, I got back to my research and bombarded her with information and sent copies of her MRI's all over the country once again.  This caused a lot of conflict between the two of us.

Although House Ear Clinic has not been doing radiation for years and years like some of the other facilities, they are experts in the field of cranial nerve pathology and they have the GK team including the physicists, radiation therapist, etc.  Danielle feels most comfortable with Dr. Slattery and we are confident that he knows what he is doing.  During this five year journey, he has proven to us that he has Danielle's best interest at heart.  So, that's where we are in this mysterious game of life.  I guess one day we'll all know the answers to the "whys?"   
Sign me as "Grateful to God" as we didn't have this option five years ago!
Jan2