Just like many experiences on this forum, I was diagnosed with a 2.0 cm AN after sudden hearing loss in my right ear in April 2011 (I am 43 years old, 2 kids - 14 & 11 year old boys). My husband and I went through the phases of despair, discovery, research and acceptance over the next 3 months. Tried steroids a couple of rounds and got back hearing only for a week at a time. So, did not have much hope of saving any hearing. By early June 2011, I was totally deaf in my right ear. After the typical search for the approaches, we decided for (Translab + BAHA-ponto) surgery and scheduled it at House Ear Clinic for Aug 10 (Friedman/Schwartz). (BAHA was necessary for me due to my professional needs as a Customer Engineering Manager.) Took my 3-week vacation in July, to visit my parents in Asia, before getting ready for the surgery.
Surprise: On Aug 1 (10 days prior to surgery) mysteriously - my hearing came back to normal in the right ear!! But I could still feel some tones being different, but no hearing loss! Only coincidence was an antibiotic (Cipro) intake for urinary infection, but no relation per the doctors. Well, travelled to Los Angeles/House Clinic on Aug 9 for pre-op checks and as confirmed with audiology - the hearing was perfect in the AN ear. This perplexed Drs. Friedman and Schwartz also. However, the only suspicion was that on my MRI, the shading of the tumor was lighter than the usually encountered ANs.
Choices: The day before surgery we are faced with these critical choices, a fresh MRI confirmed AN has not reduced in size, still at 2.0 or 2.1 cm. Do I try to save my hearing with a middle fossa? The size of my tumor was borderline for a middle fossa to save hearing (less than 40% chance). Also, after going in - if they find it to be not the typical AN (may be a meningioma?), they may not be able to do anything about it and close up!!??
Decision: Well, I have been living without hearing in one ear for over 2 months and maybe God was giving me a final chance to hear in the right ear before giving it up. So, my decision was to give up the perfectly good hearing right ear and take the simplest approach for surgeons to get them best access to the tumor - Translab.
Surgery surprise: My husband and son (11 year old) were tense in the waiting room at St.Vincent and it took 6.5 hours (including the BAHA implant). Dr. Friedman and Schwartz took turns in the end to come and explain to them about the discovery - My neuroma was a FACIAL NERVE TUMOR (Technical – 7th Nerve Schwannoma)!! The rarest among the Acoustic Tumors (less than 10% of these ANs fall into this category!). Well, the best they could do is to remove 80% of it, decompress the rest and cut the blood supply as much as possible to the tumor while not affecting my facial nerve. We were glad to have chosen the Translab approach because it gives the best view of the facial nerve during surgery.
Post Surgery recovery: After a 24 hour ICU stay, I was able to get up and walk the 2nd day after surgery when moved to the regular recovery room. I made it a point to ensure walking multiple times on Day 2 and 3 that I was able to get discharged by Day 4 and moved into our guest quarters at Seton hall guest rooms (adjacent to St. Vincent). Much better place to recover than a hospital room! Any small facial weakness that showed in the first two days has disappeared by day 5. I was rated Level 1-2 on the Brackmann scale for facial palsy on the day after surgery, but I am back to normal now. One fact that I am surprised about is that my tinnitus is totally gone as of now (it was present during my 2 months of hearing loss prior to surgery). I was kind of expecting the tinnitus to get worse, based on other peoples’ experiences.
About the doctors at House:
I can say that House Clinic is the best place to get ANs treated. My experience has shown that even with their best in the world expertise, they clearly discussed the limitations of what they saw in my case and gave me all the information to make the decisions. I never heard “we know everythingâ€. Knowing how busy they are, we anxious out of towners kept calling Dr. Friedman many times prior to our scheduling surgery with them. They always return calls promptly and never billed a dime for their time on the phone including a full review of my MRI! This contrasts with my other experience of being billed $900 for a 15 min phone call to another surgeon in LA for non-invasive surgery. I would not think twice about recommending House Clinic for ANs, if you are able to make it here.
Experience at St. Vincent:
I would say that St. Vincent and House clinic have had the relationship for a very long time and the doctors are comfortable working with the staff over there. However, I have had better hospital experiences in my area in northern california. The primary issue I notice is the constant rotation of nursing staff in the hospital. The long wait time for responses with patient requests was troublesome along with transportation times for patient moves. However, the main reason for being at St. Vincent is the House Clinic doctors. Even if I knew the state of this hospital, I would still go because of the exceptional doctors at House. The one facility that helped us a lot is the Seton Guest House at St. Vincent – this is an oasis for us patients! It is so close to the hospital (connected by the basement) and very comfortable accommodation in the middle of this city. This made my stay and recovery a lot better and easier to handle. Seeing fellow patients and families gives us a level of comfort and support.
Open questions:
1) Why did my AN symptoms throughout – never have any facial weakness or paralysis when the tumor was growing on the facial nerve? Never did I have any symptoms on the face. Even the doctors were surprised at this. May be my facial nerve is tough!
2) The hearing loss was the primary symptom along with occasional dizziness/balance issues. Very typical Balance nerve tumor symptoms. Why did I get my hearing back suddenly 10 days before surgery? No idea!
3) Is there no diagnosis to find out if the tumors in the inner ear canal are growing on Balance or hearing or facial nerves? As we have learned from my experience, not yet.
Our hopes for the future:
1) Based on current data (as explained by the doctors) – Facial Nerve tumors are the slowest growing among the AN tumors, and I hope it never re-grows.
2) Even if it does re-grow, say in 15-20 years, the best approach for such (facial nerve tumor) re-growth may be radiation treatment. My hope is that by then the Imaging and radiation treatment techniques get advanced enough to avoid the facial nerve entirely with targeted radiation down to the molecular level….?
My experience has shown me that there is no perfect way to handle these rare and complex tumor situations and we have to take a step at a time and make the best call we can at that time. I guess I ended up with the most we could do finally. I wish I did not have the rarest of these cases, but in life you play the cards you are dealt and make the best out of it. I will be happy if my experience helps others in their journey.
