Author Topic: Recently diagnosed - very large AN  (Read 12914 times)

Cheryl R

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Re: Recently diagnosed - very large AN
« Reply #15 on: August 02, 2011, 09:45:53 pm »
Comfortable with your surgeon means you know they do lots and lots of AN's, not  that you may like the bedside manner the most but that you know that they know what they are doing with unusual or different tumor circumstances as it does not all show on MRI's.  You really know only once you get inside and see the tumor and what it has done to the nerves,blood supply and/or the brainstem.          I am just very glad that my surgeon has had the knowledge about NF2's for my care!      Plus the nurses after surgery do AN care on a frequent basis too.                 
                                  Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

rvb755

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Re: Recently diagnosed - very large AN
« Reply #16 on: August 03, 2011, 05:25:39 am »
I was able to speak with Dr. Friedman yesterday and expressed I would like to have the surgery soon.  He communicated this to scheduling and Rita called me soon after.  I understand they are trying to work me into the schedule and if they are able to do so this is the route I will take.  Due to the complexity of the case I am trusting the experts to choose the treatment option they feel gives them the best chance for success.  I also understand my insurance is a PPO and HEI is "in network" so I am hoping it will be covered the same as if the surgery was done locally with an "in network" surgeon.   Thanks again to everyone for your advice.

Rick
3.2cm x 5.0cm x 3.3cm Left side AN
Translab with Dr. Friedman/Dr. Schwartz at HEI
on 8/24/2011
100% tumor removal, no facial nerve damage, SSD

Desilu

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Re: Recently diagnosed - very large AN
« Reply #17 on: August 03, 2011, 06:02:49 am »
Hi Rick,

Yes, you should be covered. I had the same situation. You will be in good hands at HEI. If I can help in anyway just send me a personal email. Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

CHD63

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Re: Recently diagnosed - very large AN
« Reply #18 on: August 03, 2011, 09:34:10 am »
Rick .....

So glad to hear this.  Dr. Friedman will work his magic for you, I know.

If you have any questions about accommodations (or anything else), just PM me.  Unless any family traveling with you prefers otherwise, Seton Hall was extremely adequate for my husband and my needs during the 16 days in LA ..... close to the hospital and clinic and the price is right!

Let me know if I can help in any way.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: Recently diagnosed - very large AN
« Reply #19 on: August 03, 2011, 02:15:25 pm »
I would definitely go to HEI. I disagree with all of the people who say you should go with the surgeon you are comfortable with. Being comfortable with a surgeon is a great thing...but realistically..sounds ridiculous. This is brain surgery. Experts, real experts would be the only ones operating on my head. A good bedside manner is important...but the skill of the surgeon is number one in my book. This surgery can have life long side effects depending on the route you choose. I have never read or met anyone who went to HEI with Friedman or Brackmann that has life long side effects other than SSD and some minor balance issues, if any. Best wishes to you!

Perhaps a bit of clarification is in order.

It is certainly not 'ridiculous' to choose a doctor that is skilled and experienced in AN surgery and yet a person the patient feels comfortable with.  However, I seriously doubt that any AN patient that is satisfied with their surgical outcome feels that way based on their doctors winning personality, alone.  It's apparent that the physician one chooses to perform AN surgery must have the proper credentials and experience.  However, if that same doctor is distant and/or unapproachable (some of the best ones are) the already-nervous AN patient is going to have a hard time putting their confidence in them.  As you accurately noted, "this is brain surgery", making it not only demanding but intimate.  Thus, having confidence in the doctor opening up your skull can only be enhanced by feeling that he cares about you as a person and you're not just that mornings 'AN case' then on to the next surgery.  I had such a caring doctor; a board-certified neurosurgeon with 3 decades of experience with acoustic neuroma removals.  He was not only highly qualified and had vast experience, he was also attentive to my concerns and showed a sincere interest in my quality of life, post-surgery.  Although I didn't expect him to invite me to his home for dinner I did appreciate his genuine concern for achieving the best possible outcome for the surgery he would be performing.  Its that balance we seek.  The combination of skill, experience and compassion.  I realize we can't always find a doctor that embodies all of these attributes - but we should try.  Obviously, given the choice, anyone contemplating AN surgery would choose a doctor with great skill and vast experience over a doctor who simply had a pleasant 'bedside manner'.  That's a no-brainer.  Fortunately, we rarely have to make that kind of Hobson's choice. 

I'm delighted to learn that you enjoyed a good outcome to your AN surgery at HEI and I hasten to add that I have absolutely no intention of disparaging any of their fine doctors, all of whom are well known in the 'AN community' - for good reason: they do excellent work.  However, so do many other doctors throughout the country.  My point is simply that HEI is not the sole repository of skilled doctors with vast experience in AN surgery and, with the high number of AN surgeries they perform each year,  I'm sure they have had their share of failures.  After all, we're discussing human beings here, not gods.  Still, as I indicated in an earlier post, I, too, kept HEI as my fall-back choice had I not discovered a very fine 'local' neurosurgeon.  As with your experience at HEI, my doctor did exactly what he said he would do and did it well.  I enjoyed a smooth recovery.  It was an nice bonus to 'work' with a highly respected neurosurgeon that also took the time to ensure that my quality of (post-op) life was a good as it could be, within his power to make it so.  I hope that every an patient can have a similar experience, no matter where they choose to go for their surgery.   

Jim
« Last Edit: August 08, 2011, 02:21:21 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

rvb755

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Re: Recently diagnosed - very large AN
« Reply #20 on: August 03, 2011, 03:04:52 pm »
Jim, thanks for those wise words.  I think you have stated things very well.  As an update to my situation, I spoke with Rita at HEI again today and they are able to schedule me for surgery on August 24 and that is what I have decided to do.  My surgery will be with Dr. Friedman and Dr. Schwartz with Dr. Steffan I believe as an internist.  Rita gave me the phone number for Seton and my wife and I plan on staying there based on the fine recommendations I have seen here.  I really am feeling a peace about flying to LA for the surgery even though I have only had a short telephone conversation with Dr. Friedman.  I guess the experience level at HEI in doing AN surgery is what is the deciding factor.

On a personal note, August 25 will be my 16th wedding anniversary, so please keep my wife in your thoughts/prayers as well.  I had purchased us tickets to a Cubs game on August 24 and we have a hotel room in Chicago for a couple nights which we will no longer be able to use.  All of this had been planned prior to my diagnosis and obviously surgery is going to take precedence.  Hopefully we will be able to have a couple of enjoyable nights in California while we are out there.

Rick
3.2cm x 5.0cm x 3.3cm Left side AN
Translab with Dr. Friedman/Dr. Schwartz at HEI
on 8/24/2011
100% tumor removal, no facial nerve damage, SSD

Jim Scott

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Re: Recently diagnosed - very large AN
« Reply #21 on: August 03, 2011, 03:11:08 pm »
Rick ~

As you know, I respect your decision and, along with all of our discussion forum posters, wish you a smooth surgery experience and a splendid outcome.  Enjoy California.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

mrmel

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Re: Recently diagnosed - very large AN
« Reply #22 on: August 03, 2011, 04:10:40 pm »
Hi,
I am new to the forum and already have greatly appreciated what I have learned in just a few days.  I had an MRI earlier in July after having a hearing test due to hearing loss on the left side.  The MRI revealed an Acoustic Neuroma which really didn't mean much to me at that point.  My ENT gave me a referral to Dr. Daniels in GR and my wife and I met with Dr. Daniels on Fri. 7/29.  At this consultation I learned the tumor measures 3.2cm by 5.0cm x 3.3 cm (about the size of a large egg).  I have been really stressed ever since finding out the size of my AN.

I have sent a copy of the MRI to HEI and have been told they have received it and Dr. Friedman will be looking at it on Tue. 8/2 and will be calling.  I really liked Dr. Daniels here locally and have heard good things but I am strongly considering going to HEI to have the surgery.  Dr. Daniels has told me he would get me in for surgery by the end of August and would basically debulk the tumor now and do a 2nd surgery in approx. 1 year for the remainder.  I am really anxious to speak with Dr Friedman and get his opinion.  At this point I just want this thing out of my head.

The only symptoms I have had are hearing loss and occasional headaches.  I have been mountain biking and road biking all summer long so balance has not been a problem.  I already am grateful for the things I have learned here, and would appreciate thoughts and prayers from any of you who read this.

Thanks,
Rick

mrmel

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Re: Recently diagnosed - very large AN
« Reply #23 on: August 03, 2011, 04:18:37 pm »
Hi Rick
 Sorry to hear about your AN tumor. You are correct it is quite large. I had a 2.5 cm tumor 14 years ago, and the surgery was 13.5 hours. I am not certain what techniques they are using now for the large tumors. I can tell you that if it were me and i could avoid having 2 surgeries i would. Taking part now and part a year from now, boy that opens the door for a lot of potential risks i would think. some of the general risks associated with AN tumors are : facial nerve damage, eye problems balance problems, and the risk of mennigitis because you are opening the skull and other problems. Talk long and hard with your surgeon and ask every question you can think of. It is a long recovery and it is something you will most likely be affected with in some way for the rest of your life. Many surgeons do not explain that, because they do not want to scare you away from the surgery. Be proactive and ask a lot of questions. This site is a good place to do that as well. Good Luck.
                                       Mel

Kate B

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Re: Recently diagnosed - very large AN
« Reply #24 on: August 03, 2011, 09:05:55 pm »
As an update to my situation, I spoke with Rita at HEI again today and they are able to schedule me for surgery on August 24 and that is what I have decided to do.  My surgery will be with Dr. Friedman and Dr. Schwartz with Dr. Steffan I believe as an internist.  Rita gave me the phone number for Seton and my wife and I plan on staying there based on the fine recommendations I have seen here.  I really am feeling a peace about flying to LA for the surgery even though I have only had a short telephone conversation with Dr. Friedman.  I guess the experience level at HEI in doing AN surgery is what is the deciding factor.

Rick

Rita is very helpful and did the scheduling 10 years ago too! Dr. Steffan is the doctor who will follow up with you while you are in California. 

Feel free to PM me if you have questions.

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

JAndrews

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Re: Recently diagnosed - very large AN
« Reply #25 on: August 04, 2011, 05:16:43 pm »
You have made a great decision! You are in the best hands. The Seton is not fancy...but very comfortable! It was 65$ a night back in 2009. Look in the book in the living room area..I wrote a page..The name is Julie Andrews surgery 2/4/2009!
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

rvb755

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Re: Recently diagnosed - very large AN
« Reply #26 on: August 05, 2011, 03:03:25 pm »
Julie, I will look for you in the book.  My wife has reserved a room for us for 2 weeks and I believe she said it will be $65 a night.

Rick
3.2cm x 5.0cm x 3.3cm Left side AN
Translab with Dr. Friedman/Dr. Schwartz at HEI
on 8/24/2011
100% tumor removal, no facial nerve damage, SSD

jennifer7

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Re: Recently diagnosed - very large AN
« Reply #27 on: August 06, 2011, 11:49:39 am »
Hi Rick
My daughter saw Dr Daniels for another issue 4 years ago, we have not been to his office since but his audiologists are still ordering her headbands for her BAHAs, so I'm sure they'll do your follow-up without any problems.  They've been great working with us over the phone. 
Prayers for your surgery
Jennifer
retrosig 2/10/10 1.2cm
headaches, facial weakness, tinnitus
hearing preserved :)

Denise S

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Re: Recently diagnosed - very large AN
« Reply #28 on: August 07, 2011, 03:25:19 pm »
Hi there.  I am Denise S from Michigan that Cheryl mentioned.   I was referred to Michigan Ear Institute over Dr. Daniels for my surgery because they are more experienced with ANs.   I know you have made your decision to HEI and that is good.   The couple things you need to be sure of when you go that far away is:  will your local doctor work with you on follow ups if any issues arrive, etc.   Also, you do have a large tumor, so just be prepared that you don't know for sure how long you will be there...never know for sure what can come up.   Do they really think they can remove it all at once????  Will you have to return again for follow up or another treatment?  Many large tumors are done in more of a 2 step process (not all though).

I am with Jim when it comes to a choice on doctors and places to go.   I am very happy with Michigan Ear Institute, but some tend to think HEI is better.  Well, each situation is so different that there is NO guarantee what can or would happen in each case.   I personally couldn't even come close to being able to afford to go to HEI and know the surgeons here at MEI do a lot of AN removals too and they do radiation stuff if needed.   

Hope all goes well for you!

OH, I am hoping to get a BAHA implant with Dr. Daniels.  He is the closest person to me that does those and his audiologist is very experienced with them too.

Denise (MI)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

rvb755

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Re: Recently diagnosed - very large AN
« Reply #29 on: August 07, 2011, 03:54:07 pm »
Hi Denise, things happened so fast for me I didn't even have time to research tons of different locations.  I found out about HEI on this forum and the fact they do free phone consultations if you send a copy of your MRI.  I'm sure the Michigan Ear Institute has many fine doctors as well and does great work.  Things just worked out really well for me in being able to get scheduled at HEI.  I spoke with my human resources department, and HEI is in network for my insurance plan.  I can't say whether the surgery is more expensive or not, but I may hit my maximum out of pocket costs no matter where surgery is performed.

Dr. Friedman told me they do not stage surgeries.  Meaning they will only perform one surgery.  Rita at HEI said plan on being in California until September 2 (surgery is on Aug. 24) but obviously the return date can change depending on recovery.  I was very impressed with Dr. Daniels in Grand Rapids, and he has told us he would be happy to help with the follow up work and I am sure we will be seeing him again.  You say you were referred to Michigan Ear Institute.  May I ask who referred you there over Dr. Daniels?

Rick
3.2cm x 5.0cm x 3.3cm Left side AN
Translab with Dr. Friedman/Dr. Schwartz at HEI
on 8/24/2011
100% tumor removal, no facial nerve damage, SSD