Expert: Dina Q Goldin, Ph.D. - 7/28/2008

Question
QUESTION: I also experienced sudden hearing loss associated with pulsatile tinnitis in my right year in Jan. 07.  Had an MRI that did not reveal anything.  My hearing tests were consistent with sensory hearing loss.  This spring I noticed additional hearing loss which was confirmed by a second hearing tests series.  An MRI this time should an enhancement in the temporal scalp, cochlear.  One ENT surgeon thought it was either a hemangioma or schwannoma and said there was no treatment as I would lose all hearing and could have balance problems (which I do not) and not correct the tinnitis with surgery.  Should I seek another opinion and is there any treatment for the pulsatile tinnitis?

ANSWER: It does sound like an acoustic neuroma, also known as a vestibular schwannoma. All your symptoms are probably from that, and it would make no sense to treat them without treating the AN. However, ANs are benign and grow slowly.  Moreover, treating by an inexperienced doctors can be much worse than no treatment at all, even with the symptoms.  This is because ANs are located near many sensitive nerves, and damaging those nerves can lead to permanent disability, if the surgeon is not extremely skilled in this surgery.

Your ENT surgeon is advocating what's known as a "wait-and-watch" approach, which is reasonable if the tumor is small and not growing quickly.  How large is the AN on the latest MRI?  You need to know. Unless it's very large, it makes sense agree to wait another half year and to do another MRI, to see if it grows.  

Meanwhile, use that time to do research into different treatments and different specialists, in case it does show significant growth.  You should investigate radiosurgery (either "gamma knife" or "fractionated stereotactic radiosurgery") as well as surgery.  For each treatment option, find the best (most experienced) specialists you can (typically, it's not your ENT surgeon). Talk to each if them before making up your mind.  Also read web sites, such as "Acoustic Neuroma Patient Archive".  

Every AN patient owes it to themselves to become very informed about treatment options, so as to minimize the chance of an unfortunate treatment outcome.


---------- FOLLOW-UP ----------

QUESTION: Thank you so much for your reply.  Yes, I'm learning that this is such a specialized area that the caregiver would be prime in successfull treatment and management.  That is my dilemma.  I have yet to find someone who is experienced in this.  What type of specialist do you suggest I follow up with?  It took me 4 doctors just to discover I had a growth and they all looked at the MRI.  Can the size be determined by the MRI??  The facility that read it picked the enhancement up to mean labrynitis which it obviously was not.  You mentioned "gamma knife" or "fractionated sterotactic radiosurgery" again the ENT surgeon dismissed any type of radiation.  Could you please elaborate more on these.  Do you happen to know a facility or specialist in the Delaware Valley area, either Philadelphia or NJ or Delaware??  Does your facility provide these services??  Thank you again.  I'm trying to educate myself in the event it would become necessary to seek treatment.  Have an appt. with a second ENT surgeon to see if he can confirm the diagnosis from the MRI films.

Answer
The size of the AN (in millimiters) can definitely be determined from the MRI, if it's done properly. You need to know that number as you consult doctors; probably, they will also want to see copies of the actual MRI.  

Surgeons typically dismiss radiation, think of it as Ford salesmen dismissing Toyota. That's why you must see each specialist yourself, and make your own informed decision.  While a surgeon's dismissal of radiation is not indicative of their lack of expertise in AN surgery, their difficulty in making a diagnosis, and their reticence in treating your AN is -- they sense they will probably cause more damage with treatment than the AN would cause if left alone.

Not many doctors are experienced in ANs, but there are certainly some in the Delaware Valley area.  Gamma Knife (GK) machine manufacturer Elekta maintains lists of all the GK sites in the USA; from their homepage (http://www.elekta.com), select Patient Center, then Treatment Centers.   You can ask each treatment center about their experience with ANs.  Fractionated stereotactic radiosurgery (FSR) is separate, and some good locations can be found on patient information web sites such as ANarchive.org  The top names that come to mind are the team at John Hopkins in Baltimore (https://www.radonc.jhmi.edu/radiosurgery/disorders/acoustic.asp), and Dr. David Andrews at Thomas Jefferson in Philadelphia.