Introduction and questions

[RachelSta]

Hi,
I was diagnosed with an acoustic neuroma two weeks ago. I noticed in January that my left ear felt "stuffy" and soon after noticed I couldn't hear as well out of it. Soon after that, I had a few days of bad vertigo/dizziness and since have had ongoing balance issues. I went to the ENT who put me on steroids for a week and a half (which didn't improve hearing) and also ordered an MRI. As many of you have probably experienced, I got a phone call from the doctor about an hour after my MRI telling me I had an acoustic neuroma. My tumor is about 1.1 x 1.5 cm and is contained within the ear canal. Since then, I have been reading up on AN, trolling these discussion boards, researching options, and I've met with two surgeons. I live in the suburbs of Detroit, so I met with Dr. Zappia at Michigan Ear Institute and Dr. El Kashlan at University of Michigan. I'm trying to decide which one to use - I really don't think I could go wrong with either of them, but there are pros and cons in both directions.

My hearing, while seeming to be terrible to me, is not that bad at this time. Using tones, my hearing is worse than that in my right ear, but still in the A range. My word recognition with my left ear is 70%. Dr. El Kashlan recommended Middle Cranial Fossa approach to try to keep my hearing in my left ear. Dr. Zappia wouldn't commit until further neurological testing. He suggested watch and wait, but there is no way I'm watching and waiting based on my symptoms, the fact that I'm young (42) and very healthy, and that I am in the process of a divorce that is about to be final but my ex has agreed to put it on hold so I don't have to deal with insurance issues.  When discussing surgical options, Dr. Zappia has said its a difficult decision because while the MCF approach would maintain my hearing, translab has better resolution of balance issues. I asked him if he could provide any research to support this assertion as I haven't been able to find anything using google.

I asked Dr. El-Kashlan about this statement and he said in his experience it is absolutely not true. I don't know what to think - I have two surgeons telling me two different things. 

So, my questions...
1) Does anyone know of any research of have you been told that MCF is more likely to result in residual balance issues Translab tumor removal?
2) Has anyone had experience with either of these doctors? Can you tell me a little bit about your experience, their communication and treatment of you both pre- and post-surgery?
3) Any other suggestions? When picking a surgeon do you think personality and ability to communicate should play into it?

Thanks for reading.

Rachel

[leapyrtwins]

Not to ignore your questions, but did you consult with any AN doctors who aren't surgeons?  Typically an AN of your size would also make you eligible for radiation.  Treatment choice is a personal choice, but you should investigate all your options. 

Keep in mind that surgeons typically recommend surgery.

I was given the choice of surgery or radiation (GK) and ultimately chose surgery, but lots of people choose radiation and are just as thrilled with their choice as I am with mine.

Just a thought,

Jan

[Kathleen_Mc]

I'll warn you that when you're talking about surgeon's they typically haven't ANY bedside manner, they do their best work when the patient is "out of it".....I say this both as a nurse, who works with them, and patient who has dealt with them for years.....my first neurosurgeon hadn't any bedside manner at all but he's a pioneer in neurosurgery and I wouldn't have had anyone else do it, he saved my life (litterally) and I don't think if I'd had someone else my outcome would have been as good....I had the fortunate experience of having another doctor deal with my regrowth and he had a wonderful bedside manner, again a highly skilled doctor ( a neurologist).......getting to the point when it comes to picking a doc. make sure he has plenty of experience with AN's and you are confident in his surgical skill first and formost......look to family for "suppport"....if you happen to get a doc. with both all the better

[RachelSta]

Thank you Jan and Kathleen for your replies.

I met yesterday with a neurosurgeon who treats AN with both surgery and gamma knife. He was great - presented the pros and cons of waiting, surgery, and gammy knife in a very objectively. He explained things and answered my questions very well. He does both surgery and gammy knife and, luckily is someone about whom every Doctor in the with whom I speak, every former patient, and every family member of former patients raves. He helped me understand how the neurological testing will help them make with surgery and how it may help me make decisions about whether to try to save my hearing or not.

Honestly, based on my own reading, research, and discussions my predisposition was that I want this thing out of my head. I don't want to live with the unknown of whether or not gamma knife worked, whether I would develop more side effects over time, and the risks of radiating my head. After meeting with Dr. Pieper yesterday I'm leaning even more towards surgery. Our discussion really didn't change my mind - I am the type of person who needs this thing gone in order to have peace of mind.

Kathleen, to your point, I'm pretty sure I'm going to use the more socially awkward surgeon who does more AN surgeries. That is with whom Dr. Pieper operates. As the neurosurgeon who does all the AN surgeries for the Michigan Ear institute, he does about 120-130 AN surgeries a year compared to 20-25 at U of M. That is enough to sway me towards MEI.

Thank you both for your answers.

Rachel

[CHD63]

Hi RachelSta and welcome to this forum with much support from friends who have "been there before you."

If you have not already done so, send for the ANA's free informational packet.  See:  http://anausa.org/index.php/contact-us/free-ana-information-packet  You will find good information regarding the treatment options.

Someone can correct me if I am wrong, but to my knowledge (and I am not a doctor), the surgical approach (if you choose surgery) does not have a major impact on post-op balance issues.  An AN (aka vestibular schwannoma) is the result of the overgrowth of Schwann cells of the outer covering of the vestibular nerve, which is a branch of the auditory nerve.  The vestibular nerve assists in our maintaining balance so any treatment to an AN will result in some type of balance issue.  Typically the brain switches over and uses the signals from the good vestibular nerve on the other side as the tumor begins to grow.  If little of this process is accomplished before treatment, then post-op (when the vestibular nerve is typically removed or at least severed) the patient will experience sudden balance issues until the brain adjusts.  Recovery time is quite varied on regaining balance post-op ..... some patients have virtually no problem, others take several weeks.  It somewhat depends on how motivated a patient is to walk and do vestibular exercises, as well.  I cannot speak to balance following radiation treatment since that was not my path.  As you have learned from your research, we are all unique individuals.  That is why it is so important that you, and you alone, make the decision for treatment.

Many thoughts and prayers as you walk through these next weeks.  Keep in touch.

Clarice

[mk]

Someone can correct me if I am wrong, but to my knowledge (and I am not a doctor), the surgical approach (if you choose surgery) does not have a major impact on post-op balance issues. 

My understanding is (but I may be wrong) that middle fossa may not sever the vestibular nerve (contrary to translab). A partially functioning nerve may send mixed signals to the brain, causing persistent balance problems, whereas if the nerve is fully removed, the other side will eventually take over and compensate.
Another point I wanted to make is that middle fossa sounds good because of its hearing preservation potential, but it is a very challenging procedure and may result in serious side effects, because of the brain retraction involved, exposure of facial nerve etc. If you want to have middle fossa, I would try to find the most experienced doctors in this particular procedure.

Marianna

[Cheryl R]

Rachel, I have never heard of mid fossa causing more balance issues.          Clarice is right on with the info on balance issues post op.     Just make sure that if you have mid fossa then that the surgeon does do this frequently.          My Univ of Iowa neurolotogist does do mid fossa more often than some and more than Mayo Clinic.         He does 70 plus ANs yearly.    I am not your typical ANer due to having NF2 and 3 tumors.         It is a hard decision on which treatment and dr and can also depend on what the tumor damage has done to nerves which can not be seen until go in there.                  There have been several MI patients on here and more may have some answers for you.plus some have come and gone.              I like MI as have a daughter in Lansing.                            Cheryl R

[dunncll]

Choices between Hearing and Balance.  I would take the balance any day over the hearing.  Hearing = life changes.  Balance = just a few extra seconds to regain woozie head.  That you can control.  Loss of hearing is HARD.

[Jim Scott]

Choices between Hearing and Balance.  I would take the balance any day over the hearing.  Hearing = life changes.  Balance = just a few extra seconds to regain woozie head.  That you can control.  Loss of hearing is HARD.

Yes, it is but being SSD is not an insurmountable situation.  The BAHA is available and very effective for most.  There are other versions of hearing devices for SSD that are also effective and ameliorate the loss of bi-lateral hearing.  I have been SSD for close to 10 years (lost unilateral hearing well prior to AN diagnosis and subsequent surgery & radiation) and cope fairly well.  It is an impediment, to be sure but not necessarily something that cannot be handled.  Imbalance can be just as much of an impediment depending on severity so of course no one wants to have to chose either deficit.  However, should the choice be necessary, it is very subjective and what is very hard for one person may be less so for another.  I'm just saying.

Jim

[leapyrtwins]

Rachel -

I totally understand just wanting the tumor out of your head - it was one of the factors that led me to opt for surgery over radiation. 

MEI is a great place; wonderful reputation; you can't go wrong there.

As for Kathleen's comment on surgeons having no bedside manner, while I respect her opinion, I found this wasn't true in the case of my surgeons (neurotologist and neurosurgeon).  I couldn't have asked for a better bedside manner from either of them.  Some patients could care less about bedside manner, but it was important to me.   Surgeons w/good bedside manners are out there.

Jan

[leapyrtwins]

Choices between Hearing and Balance.  I would take the balance any day over the hearing.  Hearing = life changes.  Balance = just a few extra seconds to regain woozie head.  That you can control.  Loss of hearing is HARD.

The body learns to compensate for the loss of a balance nerve, so it's generally not a big issue. 

Hearing loss IS hard.  But as Jim mentioned, there are options out there. 

I've had a BAHA for a little over 5 years now and it's made a big difference in my post AN life.  I couldn't live without my BAHA.

Jan

[jaylogs]

Hello, I have joined the discussion a little late but wanted to welcome you to our little club. Sorry you had to be here but it's a great place for info and support!  You've received a lot of good advice so I won't add anymore, but just know that figuring out what to do with that lil bugger in your head is more nerve wracking that the actual procedure! (At least it was for me!) Let us know what you ultimately will decide what to do and where. Good luck and take care!
Jay

[RachelSta]

Thank you everyone for your replies and welcomes. Since my last post, I was able to speak with Dr. LaReuere of the Michigan ear institute and will be going to see him following my nerve testing. He is the most experienced AN surgeon at the MEI. I've spoken to him on the phone and will probably try to have my surgery done by him.

The neurosurgeon and  did explain increased chance of residual balance issues from MCF to me. The balance and hearing nerve are connected on one side. With MCF, there is that remnant of the balance nerve that remains that can transmit data, preventing complete compensation by the other side. With Translab, since both the hearing and balance nerves are removed there is nothing left so compensation by the other side is easier.

I guess i will decide after my nerve testing.

Rachel

[james e]

I had a translab surgery 3 years ago. My hearing was at about 15%, and I had vertigo sometimes, and was always wonky. The Dr. said my hearing was not worth saving, and the translab approach was the best way to save my facial nerves...most direct route to the tumor. I am still wonky 24/7...it never goes away for me.

If I had a choice between being wonky 24/7 or being SSD, I would pick SSD every time. I have a Cochlear BAHA and it is a wonderful device. The wonkie feeling is horrible. I am totally lost in space when I close my eyes. I know most people say your remaining vestibular nerve takes over for the severed one, but mine certainly did not. It is a major effort to stay vertical, and takes a massive amount of energy to stay up-right. SSD is WAY easier than being wonky. I am in excellent physical shape and it takes a lot of physical strength in my legs, ankles and feet to balance. Close my eyes, and I cannot tell you if I am vertical or not.

Not trying to scare you. I am used to being this way and live a very normal life. It seems like all of us have some type of disability from these tumors, and my experience here is that most of us deal with our individual experiences very well. It is not much different than the guy that cuts off a couple of fingers on a table saw...they find a different way to tie their shoes and life goes on.

You are being totally smart to interview several doctors, and your logic and some internal force will guide you to the right one. We are all pulling for you.

James

[mesafinn]

Hi Rachel,

I'm sorry to read about your diagnosis---it sounds like you've been doing your research and thinking.

This is nothing but a suggestion, but of all the people I consulted with during my process, I got the most information, insight, and input from the House Clinic in LA.  They will review your MRI for free of charge and discuss the various surgical procedures with you. 

I found getting more information a bit confusing, but thereafter I also felt the most informed and confident once I made my decision.  The House Clinic could discuss some of the specific questions you have raised and well as process with you on the different surgical approaches.  My understanding is they do more AN surgeries than anywhere in the world and are a wealth of information and support....for what that's worth.

http://www.houseearclinic.com/consultation/acousticneuroma

All the very best.  We are thinking of you and here to help if we can!

Patrick