Boston doctors Mckenna and Martuza/ FSR at John Hopkins

[Jack Palmer]

I really need the feedback of anyone who has had surgery with these two doctors. What was your experience like? Am I in good hands or should I be searching for another doctor? I had FSR at Johns Hopkins about five years ago and it failed. I don't want to make a bad choice again. Thanks for any input you can give. I'd also be interested in hearing from other patients who had FSR treatment at Johns Hopkins and how they are doing. Thanks everyone. - Jack

[krbonner]

I don't yet have any experience, but am interested in the same feedback.  I was recently diagnosed with a 3cm left AN and am being referred to Dr. McKenna at MEEI/MGH.  I have not yet met with him.

-Katie

[willIscubaagain]

Hi There,
I was just diagnosed with an AN recently and met with Dr Mckenna at MEEI yesterday.  Considering I have little exprience with this my baisc impression was positive.  He seems to lay out my options clearly.  I went into the appointment after reading a lot on AN treatments and had a good idea what he would tell me.  My next step is to set up an appointment with Martuza at MGH.  Considering we were discussing a tumor in my head, yesterdays meeting went quite well.  However, I too am interested in others expriences at MGH/MEEI.

[Rayinpa37]

I had my AN surgery in March 04.  Martuza was Neuro and Nadol (an associate of Mckenna) did my surgery.

I found them very thorough and up front with everything.

To this day.. if i have a problem , question or concern.. i drop and email to Martuza and he replies back within 1/2 hr.  This is great as i am 6hrs from Boston.

They did a great job considering what is involved.  My surgery was near 16hours.  and Dr Martuza's wife sat with mine the whole time in the lounge.   

[Jack Palmer]

Ray (maxxrg) , why did your surgery take 16 hours? What were your results? Thanks. - Jack

[Rayinpa37]

Not exactly sure.  i know initial estimates were 6-10hrs.  I know the tumor was in the cerebellar Pontine angle and pressed against the brain stem.  Was also fully involved in the hearing nurver and involved with the facial nerve.  Hearng loss on right side was 100% and facial function was minimal loss.

Droop and such corrected itself in about 2-4 months.   to this day i still have facial ticks that are subsiding.

Balance and dizziness are still a problem for me.. as a re headaches.  Have to repeat another MRI this week as i developed somthing new.  mouth, tongue and lips have been numb (fat feeling) and tingling for a week.

will keep posted

[David Wrubel]

I was never a candidate for radiation because of the considerable size of my tumor. However, I have remained very close to my doctors and have communicated with them constantly since my surgery five years ago. House is the natural place where difficult surgical situations gravitate, and I urge you to contact them. Rick Friedman in particular has followed numerous surgery-after-radiation issues and will be glad to frankly lay out the issues for you. In addition, House has or is in the process of publishing a study of such cases, so there is much institutional knowledge about your specific situation.

You are the second person today I've read about with problems after FSR.

Contact Dr. Friedman at (213) 273-8078, or rfriedman@hei.org. He will get back to you in short order.

How old are you?

[Jack Palmer]

Thanks David. I am in the process of getting a second opinion on my situation from House. I have gotten some more feedback on Martuza from several sources at Mass General and Mass Eye and Ear. They were very positive. He was described as a perfectionist, extremely detailed, and an excellent surgeon. This was from McKenna as well. I don't believe that he would steer me wrong. I really feel that if he felt that I should go to House that he would simply tell me that. He has close ties there. At any rate I will be talking with Derald Brackmann at House in the next day or two and I will keep everyone posted. My tumor now is about 1.2cm by 8cm. Five years post FSR at Johns Hopkins. Johns Hopkins is trying to say that it's not growning but I saw a radiologist expert at MEEI yesterday and he says it's bigger. I'm 36 now. - Jack

[David Wrubel]

I've heard similar things about Martuza. Listen to what Brackmann says and probe him about the specifics of surgery after FSR. Ask Martuza the same questions. I think you're in good hands either way. Good luck

[Jack Palmer]

Here is an interesting note. (and one that is causing me considerable stress). Brackmann and Hitselberger in LA tell me that I should NOT (in the stongest terms) have the sugery done by the occipital approach as Martuza wants. Too many risks of complications they say. I am waiting to hear back from Martuza. Hitselberger did say that it's not likely to be a bad team however. Mckenna did a residency at House in LA. And he says he'd hope that as Chief Neurosurgeon that Martuza would be competent.

[David Wrubel]

Here is an interesting note. (and one that is causing me considerable stress). Brackmann and Hitselberger in LA tell me that I should NOT (in the stongest terms) have the sugery done by the occipital approach as Martuza wants. Too many risks of complications they say. I am waiting to hear back from Martuza. Hitselberger did say that it's not likely to be a bad team however. Mckenna did a residency at House in LA. And he says he'd hope that as Chief Neurosurgeon that Martuza would be competent.

JACK:

I'd be inclined to agree wth Hitselberger. The sub occipital approach requires significantly more movement and retraction of brain structures to get at the tumor (not a good thing), while the Translab approach exposes the tumor and the facial nerve much better while not requiring nearly as much retraction. You'll definitely lose hearing with the Translab, probably lose hearing with sub occipital. Hitselberger has done many thousands of these surgeries; give his recommendation serious thought.

[krbonner]

I met with Dr. McKenna last week.  I found him personable, thorough, and easy to talk to as was his resident (who did the intial medical history and exam).  In our conversation, though, McKenna claimed to do surgery with Dr. Barker at MGH, not Martuza.  I didn't follow up right then b/c I'm not going for surgery immediately.

McKenna says his office is currently following 400-500 AN patients in the "watchful waiting" stage.  I didn't ask about # of surgeries he does in a year, but he did say that 95% of his surgical patients had no long-term damage to the facial nerve, which sounds great.  To the others more versed than I - does that sound like a realistic statistic?

Katie

[russ]

Hi
  To answer your question, yes, with a very well experienced team.   -Russ

I met with Dr. McKenna last week.  I found him personable, thorough, and easy to talk to as was his resident (who did the intial medical history and exam).  In our conversation, though, McKenna claimed to do surgery with Dr. Barker at MGH, not Martuza.  I didn't follow up right then b/c I'm not going for surgery immediately.

McKenna says his office is currently following 400-500 AN patients in the "watchful waiting" stage.  I didn't ask about # of surgeries he does in a year, but he did say that 95% of his surgical patients had no long-term damage to the facial nerve, which sounds great.  To the others more versed than I - does that sound like a realistic statistic?

Katie

[Peanut]

Katie,
McKenna did my 3.0-3.5 cm AN in cerebellar pontine angle along with Barker.  I found M as you and others describe.  Barker is reputed to be an excellent surgeon, and he "hates clinic" as he remarked to me (I'd figured that out by myself).  Follow up is what I found difficult.  If Martuza emails, that is valuable for those who are up to emailing soon after surgery.  Otherwise there are several layers of communication in order to get through when one needs advice.
What did McKenna say about nursing?  I hope you can wait a few months, at least two, enjoy nursing your son, then do surgery. I found staff at MGH excellent.  It was my fate to go to Spaulding Rehab for two weeks, and they were competent, too.
Mckenna did a fellowship at House, so ask him about the difference of opnioin on approach if you have a chance.  I wish he were available via email.
Good luck to you.
Peanut

[krbonner]

Katie,
McKenna did my 3.0-3.5 cm AN in cerebellar pontine angle along with Barker. I found M as you and others describe. Barker is reputed to be an excellent surgeon, and he "hates clinic" as he remarked to me (I'd figured that out by myself). Follow up is what I found difficult. If Martuza emails, that is valuable for those who are up to emailing soon after surgery. Otherwise there are several layers of communication in order to get through when one needs advice.
What did McKenna say about nursing? I hope you can wait a few months, at least two, enjoy nursing your son, then do surgery. I found staff at MGH excellent. It was my fate to go to Spaulding Rehab for two weeks, and they were competent, too.
Mckenna did a fellowship at House, so ask him about the difference of opnioin on approach if you have a chance. I wish he were available via email.
Good luck to you.
Peanut

Thanks for the input!  I really do appreciate it.  Once we get closer to making a decision to do the surgery, I'll quiz him about approaches and reasonings.

My AN is actually 1-1.5cm, much smaller than the 3-3.5 cm reported by the original radiologist (who, admitedly, has little to no experience with ANs).  After seeing my MRI and meeting with me, McKenna agreed that there's no problem waiting a year or two for the surgery to allow me to continue nursing as I wanted.  Given that I'm only 34, he does want to do surgery, but there's no urgency yet.  We'll follow up with another MRI in 4 months just to make sure it's not growing too rapidly.

McKenna did point out that there is some evidence (though not yet thoroughly proven) that these tumors have estrogen receptors on them.  Given the amount of estrogen flowing throgh the body when pregnant, it's likely that my recent pregnancy fed the tumor, causing it to grow enough to become symptomatic rather suddenly.  So he also strongly recommended that we remove the AN before considering another pregnancy.

Katie