Dr. McKenna in Boston

[MLB57]

Hi Laura,

So Dr Lee did move on up to bigger and better things!! Not surprised!!  I'd like to share this with you--After UMass Med lost Dr Magerian (neurotologist) and Dr Litofsky (neurosurgeon) (I understand that MA has some of the highest malpractice insurance rates in the country so wonder they left) there were no MDs to do AN surgery--I don't know now who they have but knowing what I know now I would never have such complicated surgery anywhere but with surgeons who have tons of experience...Even though my facial nerve was not cut it was traumatized and I had poor facial function after surgery and it never fully recovered... I can close my eye but my mouth will forever have a crooked smile...   Anyway  I'm getting off track--what I wanted to share with you is that I had follow-ups with Dr Lee for hearing tests and when it was determined (in 2006) that the AN was never fully removed and continuing to grow I told Dr Lee I had seen Dr Noren in RI and would have Gamma Knife (one day treatment). Dr Lee was adamant that I should not have radiation--his direct words, (and unsolicited I might add): "I would not want my mother to have radiation" and he referred me to Dr Barker at MGH. (I did not want surgery again but did go to see Dr Barker who told me 10% chance of further facial nerve damage so I then saw Dr Loeffler and the rest is history)... In reading Dr Lee's summary of my visit with him (Dr Lee) it is stated, due to the minimal growth "I do not necessarily think that this is an indication for undergoing stereotatic radiotherapy or single shot stereotactic radiation therapy. There are risks of delayed cranial neuropathies and hydrocephalous and the unknown concerns of intracranial neoplastic growth in the distant future following this approach."  So he feared those complications, the worst of course is the tumor turning cancerous (years later) due to the radiation...

This AN treatment journey can be very daunting and confusing and frustrating trying to decide what to do but my suggestion is, again, whatever treatment you choose, get the best team who has lots of experience...  

In 2001 when I had my AN surgery at UMassMed I only had a computer at work so had limited access to AN knowledge--if I'd known then what I know now I would have gone to Boston (and yes I would have had the surgery)  and maybe the AN could have been completely removed--but of course I will never know...  

Best wishes to you, Laura!!

Mary (aka Grammy)...

[MLB57]

 :oH Laura,

Mary here again--just re-read your post and realized that you have a hemangioma.    I assume the treatment must be similar... Anyway I wanted also to tell you that the BAHA (from my understanding) is NOT like the typical hearing aid because it transfers sound via bone from the good hearing ear to the affected ear. That's why the bottle-cap looking BAHA is implanted into the bone of your skull...

Take care now, 

Mary (aka Grammy) 

[JerseyGirl2]

Anyway I wanted also to tell you that the BAHA (from my understanding) is NOT like the typical hearing aid because it transfers sound via bone from the good hearing ear to the affected ear. That's why the bottle-cap looking BAHA is implanted into the bone of your skull...

Whoops! The BAHA is actually implanted on the SSD (single-side deaf) side of your head, and the sound is transmitted via bone from the deaf side to the good, hearing side.

Catherine (JerseyGirl 2)

[lholl36233]

Thank you Mary.  I had the same instinct to go to Boston if I had to have surgery.  I think Dr. McKenna has enough experience to know when the risk of damage to the facial nerve is high.  I would have gone for surgery if he recommended it.

I'm looking forward to seeing Dr. Loeffler 10/7.

Laura

[MLB57]

Hi Catherine and Laura,

  Sorry,  I tried to remember what side Dr Lee told me it was implanted on (wrong guess!)... Joe F ("I'd rather be fishing") who is one of our Maxwell Silverman's Brunch Bunch has one and seem sto be happy with it...

Take care!

Mary (aka GrammyMary)