Neurosurgeon vs. Neurotologist which to go with?

[salutrenli]

Hello, everyone! It’s really great to join the forum so that I can share my thoughts and experience with you all. I was just diagnosed with AN last month, during which reading the posts in the forum, consulting doctors, searching information from papers, thesis have actually become my daily routine. Now, it’s decision time. Through all the research and consultations I’ve done, it seems that I have no choice but go with a microsurgery.

However, the dilemma is even though the tumour in my head is about in 33mmCPA and 8mm in IAC, I have nearly perfect hearing and speech discrimination and the only symptom for me is feeling a little facial numbness on the right half of my face. I just feel like a normal healthy person with a tumour in my brain, which makes me really reluctant to schedule a surgery.

All the doctors (5 neurogeons and 3 neurotologists) told me that the tumour was big, which has already bended my brain stem and was pressing against the trigeminal nerve (control sensation of the face), and since I was young (29-yr-old), I had to take the surgery as soon as possible to get rid of the tumour and I should focus on facial nerve preservation instead of hearing, for the chances to retain it was between 3%-10%.

All 5 neurogeons suggested I should go with retro sigmoid, which is the only approach they are familiar with while 2 neurotologists wanted to do translab, because it’s easier for them to have a complete resection and preserve facial nerve. When I asked them about the other approach, retro sigmoid, they said that it’s kind of impossible to save my hearing with such a large size of the tumour, so I had to sacrifice it anyway. and 1 said he could do both.

That’s all what I learned. So, for a situation like this, do I have a choice?  I'm really confused now. All ideas appreciated!

R.L

[Tod]

RL, welcome to the forum. As others will say, we are sorry you need to be here, but glad you found it.

I am not a doctor, so my advice is based on reading and being a patient. First, if you have seen eight docs already, you are certainly off to a well-researched start. Unfortunately, it seems they are pretty divided. I think most surgical teams for these procedures will consist of both a neurosurgeon and neurotologist. Both specialties are important.

In my case, because of the size of the tumor (in my signature below) and its location, deep down and compressing against my brainstem, the team used a combination of retro sigmoid and trans labyrinth. From what I can tell, this is fairly unusual, but both docs had their reasons, similar to what you described, and in the end it has worked out fairly well. However, my affected hearing was essentially gone and all the docs I consulted were very explicit: I had three to six months to take care of this or else face coma and death. So, easy choice for me.

If you have brainstem involvement, you cannot ignore this forever, but it is certainly understandable to wish to delay.

You may be well-served by sending your records to House Ear Institute for a free consultation. They are certainly familiar with all standard surgical approaches.

I hope this is helpful, best of luck,

-Tod

[alabamajane]

R. L.,,, hi, I had a tumor similar in position as yours.. mostly in CPA and pressing on brainstem.. I was w&w for three yrs until it grew into CPA and affected brainstem.. then the headaches began and dizziness to point most days I just wanted to lie down and keep my head still,, anyway, I ended up having translab in order to try to preserve facial nerve as that surgery gives them the best view/access to facial nerve. My hearing was very good also, but I was going to lose most of it anyway and facial nerve was very important to me. I lost it anyway,, as tumor was wrapped around it. I did have mild numbness of that side of my face also and some tongue numbness.. It also was affecting my swallowing at times. Like Tod said,, once it inpacts brainstem, you must act as symptoms only get worse as it progresses and potentially inpacts other nerves in the area...
I wish you the best, sending MRI and auditory tests to House Clinic is a  good idea, I did the same, and was told the translab is what they would have done also,, so it helped me decide. I hope your symptoms don't progress too quickly and that you can make your decision promptly. I did have a team of Drs. as most of us do I believe that included both specialties..
Good luck and keep us posted on your journey.. Jane

[Jim Scott]

Hi, R.L. ~

I won't presume to offer medical advice because I'm not a doctor.  However, as an AN patient, it seems to me that the Retrosigmoid approach may be your best bet even if it takes the hearing in that ear.  I had a large AN (4.5 cm) that was severely impacting my brain stem. I underwent Retrosigmoid approach 'debulking' surgery (to preserve the facial nerve) which included a severing of the tumor's blood supply.  That surgery was highly successful and followed by 26 (uneventful) FSR treatments aimed at destroying the remaining tumor's ability to re-grow,  That was in 2006.  My last MRI (2008) indicated tumor necrosis and the beginnings of shrinkage.  Both of my doctors were neurosurgeons and had many years of experience operating on acoustic neuroma patients - with a good success record.  My symptoms disappeared immediately following the surgery and I had almost no complications.  Today, I'm doing great.

Of course, I have to add the caveat that one AN patients experience cannot act as a guarantee another AN patient will have the identical experience (good or not-so-good).  I can only offer my experience and hope that it is a slight benefit to you as you struggle with your decision.

Jim

[mk]

Hello,

I see you have a similar question posted on another thread. I will answer to this one. As Jim said we are not doctors and everyone has had a different experience. Your tumor is quite large and unfortunately with tumors this large, it is very hard to save hearing. When I was diagnosed (with a slightly smaller tumor), I was also virtually asymptomatic except from the numbness, which was my presenting symptom. I did loose most of my hearing though within the following couple of years and completely after my surgery.
As for the surgical approach, different doctors will recommend the approach they prefer and they feel most comfortable following in your specific situation. Also typically neurotologists will prefer translab, whereas some neurosurgeons will prefer retrosigmoid. I consulted with 6 doctors. Most recommended translab, one the combination of translab and retrosigmoid that Tod mentioned. The doctor I chose recommended retrosigmoid. Not to save hearing (like I said I didn't have any useful hearing left), but because he felt that because of the size and location of the tumor on the CPA it would be easier to access it, and most importantly because he specializes in this approach and because he has very good success rates in preservation of the facial nerve with it. Indeed I had a very good outcome.
Based on my experience I would say that instead of fretting too much on the approach when the chances of hearing preservation are slim, the most important thing is to choose carefully the team that will perform your surgery. Consult as much as possible, ask around for previous patients' experiences and choose an experienced doctor. Sending your scans to HEI for their thoughts on the chances of hearing preservation would't be a bad idea either. 

Marianna

[salutrenli]

Thank you all so much for the immediate replies. Actually, after being diagnosed with AN, I promised myself that I would made the final decision within a month. I know maybe it’s sensible to choose  translab, considering the facial nerve and the protruding part of the tumour in IAC.  Emotionally, I don’t want to give up the slim chance of saving vestibulocochlear nerve. It seems that my eyes and the good ear just hasn’t started to compensate yet, which means vestibular nerve is not severely damaged.

I love doing sporting and travelling, and I do hope to keep my teaching job in the university. I guess sometimes you just can’t have it all. It’s inevitable to have certain complications postop. Living style wouldn’t remain the same. The more I learn about AN, the more I am mentally prepared for the surgery.

[mk]

Hi again,

first of all a word of encouragement. You don't have to give up anything, I also teach at the university, and being SSD hasn't prevented me at the least from teaching large classes in auditorium-style classrooms and from all other aspects of my work. I also don't have any balance issues or anything else that would prevent me from doing sports and travelling, in fact I feel more healthy and active than ever, and I am not even a year post-op. Even though individual results vary, having AN surgery does not mean necessarily that you have to give up your lifestyle.

Second, you must keep in mind that your body compensates, even if you don't realize it. I never had balance issues, dizziness or anything else; even the neurotologist on my first appointment said that "my balance looked pretty darn good". However the balance test that he ordered revealed that I already had 90% weakness on the AN side. Meaning that all these years my other side had been compensating, without me ever knowing. With a tumor your size, most likely this will be the case for you too. Which is actually good news, because your other side will have already taken over, therefore you won't feel a difference after surgery.

Thirdly, not all doctors believe that translab is the best for facial nerve preservation. My very skilled neurosurgeon believes that translab exposes too much of the facial nerve too early, making it prone to damage. It all depends on the skill level of the doctor and the techniques he/she follows. Instead of giving a deadline to yourself of a month to decide, aim at finding the most competent team you can get access to, even if it means taking a few more days/weeks (unless your doctors have stated that there is urgerncy in your situation)

The last point is that becoming SSD abruptly after surgery does require quite a bit of an adjustment. We have seen many times here on the forum that people who had already lost most of their hearing gradually adjusted to SSD much more easily. However there are ways to deal with this, the BAHA is a solution that many have found very effective and many doctors place the BAHA at the same time as translab.

Marianna 

[leapyrtwins]

My AN surgery was done by a team - a neurotologist and a neurosurgeon.

My neurotologist also did my BAHA implant surgery 9 months after my AN surgery.

Jan

[salutrenli]

Marianna,

Tons of thanks for the pep talk, which is just in need. I am the type of prepare-for-the-worst person. Now, with the forum members' support and encouragement I can hope for the best.

If I am going to write a list of things I want to preserve after surgery, life, without a doubt, will be on top of it, facial nerve function will be the second, tumour resection will be the third, and cranial nerve VIII, where an AN usually originated, will be ranked last.

As for the docs, recently I am trying to sift and weigh what they said together with my own personal expectation to reach my final decision. I believe with information and knowledge about the AN accumulated to certain point, it will come out naturally.

R.L