Laura saw Dr. McKenna today

[lholl36233]

I liked him and Mr. McCall alot.  I got much more information that I did at UMASS.  They called my tumor a hemangioma which is more difficult to treat than an AN.  Dr. McKenna said surgery to take the tumor out would certainly damage the facial nerve.  They agreed my facial nerve was perfect so they don't want to touch it.  Dr. McKenna wants me to see Dr. Loefler(sp?) at MGH to see if I'm a candidate for the proton beam therapy.  Afterwards, he agreed a BAHA could help me and offered to set me up with the BAHA trial to see if I like it.

I'll post more later but I'm encouraged.

[leapyrtwins]

Laura -

I'm glad you're encouraged - so am I.

When the time comes to consider the BAHA, let me know if you have any questions; I'd be happy to answer them 

Best,

Jan

[sgerrard]

Laura,

It may cheer you to know that you are not alone.   Lilan also had a hemangioma, recently removed at House Ear Clinic. Here is one of her posts:

http://anausa.org/forum/index.php?topic=9834.msg112988#msg112988

Hope you continue to find more answers - and that you stick around, whatever sort of tumor it is.

Steve

[lholl36233]

Thanks for sharing Lilian's story. Her hemangioma must not have been in quite the same place mine is.  We all know Dr. McKenna is an experienced surgeoon so if he says mine is in a place where facial nerve damage is quaranteed in surgery, I trust him.  He told me the hearing nerve is regenerated in reptiles and birds but not humans.  I thought that was interesting.

UMASS would have rushed me into surgery.  Dr. McCall did balance tests with me.  He called my balance ok.  He also cleaned the wax out of both ears.  That never happened at UMASS.

I plan to call for an appointment with Dr. Loefler today.  Dr. McKenna said he would send over a letter of introduction.

Trust me Steve, I'm not going anywhere.  You guys are stuck with me.     Laura


L

[lholl36233]

Hi,

One more thought on this.  Dr. McCall said they have seen people with small tumors not pressing the hearing nerve lose hearing but people with much larger tumors retain hearing.  There is a change in my hearing but not in the tumor.

Doesn't make sense to him either...

[krbonner]

Glad you had a good appt!  I've always trusted his opinion - McKenna is not one to rush into surgeries without real reason to do so, I think. 

I only saw Loeffler once for a consult, but also trusted him.  And I've met several people who have been treated by him with positive outcomes and experiences.  Good luck and let us know how it goes!

Katie

[epc1970]

Laura
I'm happy to hear you are in Dr McKenna's care. He has been following me post op here on the East Coast. He also sent me to Dr Loeffler for follow up of the small remaining bit of tumor I have. Dr Loeffler is a very impressive man and like Dr McKenna a very sincere, kind man. I almost fell over when before I could call Dr Loeffler for an appt, I had Dr Loeffler's assistant calling me to set up an appointment -Dr McKenna had indeed sent over a letter of introduction to Dr Loeffler. I found Dr Loeffler and his staff to be top knotch in every way. Good luck!

Erin

[Jim Scott]

Laura ~

Congratulations on your successful consultation with the esteemed Dr. McKenna.  Good luck with the BAHA demo, too.  It seems as if you're on your way! 

Jim

[lholl36233]

Thanks Jim.  I would never had heard of Dr. McKenna without the help of my friends on this forum.

On the information sheet at the appointment, it asks, "Who referred you?"  I almost wrote I referred myself but I put my Primary doctor's name.

Dr. Loeffler's assistant called me at 4 today.  She said I had to register as a patient at MGH before I could make an appointment.  She said Dr. Loeffler sees patients on Wednesdays and the next available was 9/30.  I registered then called back and left a message.  Hopefully, she will call with an appointment for 9/30.

I am on my way...

[lholl36233]

Hi,

I just felt like sharing.  I haven't been able to get an appointment with Dr. Loeffler yet because the file Dr. McKenna sent over has 2 diagnosis.  Dr. Loeffler needs to confirm which is correct before they can schedule an appointment?

Have a great day.   

[lholl36233]

Hi,

I see Dr. Loeffler on 10/7.  Wish me luck that he will think the proton beam will help me.  Then, I'll be able to start the BAHA process.

Woo-hoo!

[Jim Scott]

Laura ~

Onward and upward! 

Jim

[MLB57]

Hi Laura,

You mentioned UMass so I presume you mean UMass Med Ctr in Worcester MA? Just wondering because in Jan of 2001 I had a 1 cm rt AN removed there when they a Skull Base team of surgeons--surgeons both left and I had follow-up w/a Dr Lee--handsome young, personable doctor who eventually referred me to MGH and Dr Barker as my AN had not been totally removed (contrary to what the suregons reported) and was growing more... I met w/Barker and eventually Dr Loeffler and I had LINAC radiation over several weeks in Fall of 2007.   Dr Lee was a proponent of the BAHA but I decided not to bother at that time as I could have it anytime as no change was possible in my hearing anyway... So I wouldn't be surprised if that is the same Dr Lee--he probably left UMass Med Ctr and went to Boston.

MGH has a great team of surgeons and radaition specialists so I'm sure you will be in great hands whatever treatment you choose!!!

Best always,

Mary (aka GrammyMary).... (one of Phyl's Maxwell Silverman's Brunch bunch!!)...