ANA Discussion Forum
Archive => Archives => Topic started by: Jack Palmer on July 03, 2005, 12:14:14 am
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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
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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
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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.
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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.
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Ray (maxxrg) , why did your surgery take 16 hours? What were your results? Thanks. - Jack
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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
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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?
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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
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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
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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.
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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.
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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
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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
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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
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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
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Dear Katie,
What very good news, your tumor so much smaller, so much more leeway in waiting for treatment, and so much more time to nurse and wean naturally.
That size means you could probably consider radiation. Jay Loeffler works with Martuza and Barker as radiosurgeon at MGH. One shot Linac, I believe. There is also Georg Noren in Providence who does fractionated Gamma Knife. Many positive comments about him, and apparently he communicates with patients and prospective patients via email. Ask about him on this forum for specifics which I do not have at my fingertips now without leaving the Forum to search.
McKenna inspires trust. He is also a surgeon and pro-micro surgery. Ask if you would be a candidate for radiation. I had not the option because of size, location, and cystic components, but I think it is well worth exploring.
Where are you located?
All good luck to you, imagine, I don't even know you and I'm glad for your "good news" in tumor size so much smaller than originally reported...
Peanut
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That size means you could probably consider radiation. Jay Loeffler works with Martuza and Barker as radiosurgeon at MGH. One shot Linac, I believe. There is also Georg Noren in Providence who does fractionated Gamma Knife. Many positive comments about him, and apparently he communicates with patients and prospective patients via email. Ask about him on this forum for specifics which I do not have at my fingertips now without leaving the Forum to search.
McKenna inspires trust. He is also a surgeon and pro-micro surgery. Ask if you would be a candidate for radiation. I had not the option because of size, location, and cystic components, but I think it is well worth exploring.
Where are you located?
Thank you!
I should follow up with investigating radiation, you're right. We did discuss it with McKenna (who is obviously a surgeon, though I think he would recommend radiation if the situation were truly right for it). He had two concerns with radiation in my case:
1) Radiation has only been around 15 yrs or so, so longer term outcomes aren't known. Given that I'm 34 with an expected lifespan of another 50+ years, he didn't like recommending a treatment where we wouldn't know the outcome over my lifespan.
2) If we ever consider another pregnancy, and all the extra estrogen that puts in my system, they don't really know how that might feed a tumor that's still present but supposedly "dead".
I should discuss both concerns with doctors specializing in radiation to see what they say. I hadn't really thought of that yet, so thank you for pointing it out.
We live in Littleton, MA - about 30 miles northwest of Boston, up near the NH border. It's fairly easy to get to either Boston or Providence.
Katie
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Hello everyone,
Here is an update on my decision between House Clinic and Mass General: I went with House Clinic. On August 4 I had the tumor removed by Hitselberger and Brackmann via the trans lab approach for my 1.4 cm previously irradiated tumor . I do have some facial weakness right now that the doctors are expecting to return to normal or near normal. The blood supply may have been affected by the radiation treatment. Hitselberger said it was not overly adherent and they were able to remove all of it.
My decision came down to a few things. One: Hitselberger and Brackmann were adamant that the translab approach was best. (Martuza at MGH only wanted to do suboccipital). Two: The House physicians had been right the first time about everything regarding my radiation treatment outcome. Third: I was consistently treated rudely by the office staff at Maruza's office which gave me a poor impression.
I can tell you that the doctors and staff at House and St. Vincent Hospital are not just good or competent, but just incredible. During my entire stay there my mother and I did not meet a single person who was anything less than warm,friendly, and helpful. Everyone right down to the janitors was just wonderful. The nurses took great care of me. The doctors have been just as good with the post- surgical follow up.
I like Dr. Mckenna at MGH and I feel that he would have done a good job for me, but it's hard for me to imagine having a better experience than I received at House Clinic.
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Katie: My experience may be helpful to you: At the age of 31 I had FSR radiation at Johns Hopkins for a 1cm AN. For the next five years I suffered from dizziness. I lost vitually all my hearing in that ear. The ringing increased. I suffered with facial symptoms (awful crawling sensations). The tumor regrew and had to be operated on five years later. To add insult to injury Johns Hopkins tries to claim that the evidence of growth is not conclusive. Now we have a better idea why their stats sound so good. - Jack
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Thanks for the sharing the insights on this.. meeting with Elizabeth Claus and Peter Brown at B&W's on Friday... backup local dr names are truly appreciated.
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I also had my surgery done by Dr. Martuza and Dr. Nadol sept 04. the tumor was 3.5cm and they did an amazing job. my surgery was close to 18hrs. I think that is because they are such perfectionist. I can not tell you how happy I have been with both these doctors and Dr. Rubin at Mass Eye and Ear. I woud be happy to discuss my experience more with you if you have further questions. I am 32yrs old and my daughter was 1 when I had my surgery. It has been a very challenging year but things turned out pretty well.
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Hi There,
Just thought I would post my recent expriences with Dr's Martuza and Mckenna at MGH. Everything has gone remarkably smoothly. It blows my mind that today marks 3 weeks since my surgery. In fact, as I write this, I was about 12 hours into surgery with several hours to go. Nonetheless, I feel great. Martuza was excellent and came out and talked with my girlfriend for a while even though it was quite late. He's quick to respond to emails and seems to instill confidence in a sort of unexplainable way. If anyone had to cut open my noggin, I felt good about him and his staff. At least thats how I feel. Even though I saw dr. mckenna and he was present at the surgery, I really have not had a whole lot of contact with him. However, the little contact I have had, has been positive. Dr Martuza's fellow, Dr. Abbed was also great, understanding, comforting, and seemed like an all around good guy. I've enjoyed having them as my doctors very much. I still can't belive I'm 28 and had brain surgery!
Jake
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Had FSR at Hopkins in Dec of 2001. Have had very good results. Initial swelling of tumor, but now it has shrunk to about 70% of its initial size (7mm x 9mm). I am sorry that you have had a recurrance. I have read some information about the issue of more difficult surgery following radiation is a myth, so you may want to read some about that. I wish you the very best.
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HI all,
Wanted to see if anyone had any updates on McKenna, Martuza or Barker (at MGH)... looks like (should the decision be final) that Middle Fossa is the potential way for me to go (based on current size, overall health and retention of hearing)... AN has begun it's path into the CP region, but I think it's still small enough to concur with Dr. Brackmann (he's been on email and phone with me the past few days and reading my MRI films now) that I should contemplate Middle Fossa as the surgical procedure to think about.
Does anyone have any experience with any of these dr's and Middle Fossa procedure? I have read the replies here and their abilities in subocciptal, but not Middle Fossa (unless I missed it somewhere).
Thanks all! :)
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I had middle fossa approach (in Sydney Australia) 3.5 years ago. 6 mths ago, I discovered that it had grown back. My new ENT surgeon has told me that he no longer does middle fossa. Either translab or nothing. The other alternative of course is radiation treatment.
i have documented my case on this site already so won't do so again. Suffice to say that I was not a happy chappy after my op. Ok, no facial paralysis but severe and debilitating headaches since. On the discovery of re-growth, my original surgeon who told me he got it all out, advised me that they left the "casing" of the tumor. I've not heard that before but from what i understand, the middle fossa approach does not give the surgeon the best "attack" to the tumor (depends on size and position I guess).
The supposed advantage of MF is that you retain the hearing at the level that you had pre-op. I lost a bit more but still have some.
My re-growth is still small'ish but I will not go back for surgery. I will be having radiation treatment when and if I need to.
How big is your tumor?
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thanks Larry for sharing this and yes, I spotted your other posts regarding your situation in other areas of the forum here.
Right now (as of last week's MRI), the AN is Left IAC, 6.7mm x 9mm and just now extending into the CP area/region.... thoughts are that the Middle Fossa would be best access while my hearing is still in "normal" range (as noted by audiologist in past 4 mos) and minimal facial numbness, as well as being categorized as a "healthy" human being... (gawd, they haven't seen me drink martini's yet!) :). I also have Chiari I malformation (good link for Chiari noted here: http://www.neurosurgerytoday.org/what/patient_e/chiari2.asp), which is spinal column/cerebellum so do to a sub occipital may not be the best approach for surgery. Not sure if I want the radiation method at this time, but still weighing options... have Dr. Brackmann at House Clinic reviewiing everything now as an "educated" non-face to face 2nd opinion..... his thoughts are Middle Fossa, so trying to find someone local that has had it done or know of who performs them locally... not sure if my neurosurgeon (who is a specialist in Brain tumors) does them... and will find out on the 24th when I meet with them.
Hope you are well today! :) And thanks again!
Phyl
I had middle fossa approach (in Sydney Australia) 3.5 years ago. 6 mths ago, I discovered that it had grown back. My new ENT surgeon has told me that he no longer does middle fossa. Either translab or nothing. The other alternative of course is radiation treatment.
i have documented my case on this site already so won't do so again. Suffice to say that I was not a happy chappy after my op. Ok, no facial paralysis but severe and debilitating headaches since. On the discovery of re-growth, my original surgeon who told me he got it all out, advised me that they left the "casing" of the tumor. I've not heard that before but from what i understand, the middle fossa approach does not give the surgeon the best "attack" to the tumor (depends on size and position I guess).
The supposed advantage of MF is that you retain the hearing at the level that you had pre-op. I lost a bit more but still have some.
My re-growth is still small'ish but I will not go back for surgery. I will be having radiation treatment when and if I need to.
How big is your tumor?
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Phyl,
I guess the other complications (Chiari 1) may impact your decision. However, my re-growth is similar size to yours and I am waiting. i have been told that mixed info re the growth rates of these tumors, from slow growing - potentially not doing anything for years to growth spurts that catch up on you. I guess the "jury is out" at this stage.
Would radiation treatment impact other issues re Chiari 1? if not, i would look hard at this option.
good luck on whichever path you take. A piece of advice. If you need to have surgery, get it done by the best avaliable - do not be governed by your location. Ok, there maybe a financial implication however, the risks of local and "inexperienced doctors" re causing nerve damage etc, far outweighs a bit of travel. I must say, with my op, i was home in 3 days, walking more and more every day and back at a very stressful work environment in 4 weeks. that is one advantage of MF - it isn't as invasive as the other methods of surgery.
Larry
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Larry,
Gawd, thank you! :) I'm a bit overwhelmed with it all now (see my thread in pre-treatment forum) and reviewed data on MF procedure. The Chiari I is certainly a hinderance yet, reviewing data on the radiation is also scaring the bejeezus out of me. Location won't be of concern as I'm ready to go whereever I need to go (living in medical-mecca Boston certainly is a help if I can find someone local...Dr. Barker, I may research) but health is coming first and foremost. House is also not ruled out if I need to go to CA. Hope is to find someone local first that is well experienced, especially in MF... and if not and travel is a must, then so be it.....
I really appreciate your thoughts on this... truly! :)
Phyl
Phyl,
I guess the other complications (Chiari 1) may impact your decision. However, my re-growth is similar size to yours and I am waiting. i have been told that mixed info re the growth rates of these tumors, from slow growing - potentially not doing anything for years to growth spurts that catch up on you. I guess the "jury is out" at this stage.
Would radiation treatment impact other issues re Chiari 1? if not, i would look hard at this option.
good luck on whichever path you take. A piece of advice. If you need to have surgery, get it done by the best avaliable - do not be governed by your location. Ok, there maybe a financial implication however, the risks of local and "inexperienced doctors" re causing nerve damage etc, far outweighs a bit of travel. I must say, with my op, i was home in 3 days, walking more and more every day and back at a very stressful work environment in 4 weeks. that is one advantage of MF - it isn't as invasive as the other methods of surgery.
Larry
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Hi Phyl,
My thoughts are that when trying to pick a treatment is that with surgery you are totally dependant on the skill of the surgeon, there skill and experience make all the difference. I have a friend who is an ENT surgeon, she always relates surgery to art, there are lots of people who can do paint by numbers but only a few who create masterpieces from scratch. Surgery is a skill some people can practice and get good some people are talented by nature. You should ask for statistics relating to out comes from you surgeon. House has very good information on there web site in respect to hearing, facial nerve and tumor re-growth over a ten year time table for Middle Fossa surgical approach. This is not to say that you can’t find good surgeons in other places. You will see many people talk of surgeons who where "experts" in AN surgery who had done 20 or so surgeries total, house does around 200 a year. If I decide to have surgery today I would chouse middle fossa and go to house because of the expertise.
John
5mmx5mm waiting and watching
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Hi John,
Well, I believe you and I are thinking alike in many aspects.... in surgeries that I have had in the past, I can certainly relate to your friend's comment of surgery being in art. Well, this canvas has its share of scars but overall, the work they have done on me does fall in line with your friend's comment. I have had the best in the past and my hope is to find the best for the AN.ÂÂ
I did talk to my dad last night about House/Dr. Brackmann and being the leaders in AN surgeries due to the amt that they do out there.... I know that here in Boston, there has to also be others that rank top in AN surgeries (maybe not as many as House Clinic does) and I'm trying to keep close to home for my first option. If not, then I will certainly travel, but the more I've heard about Dr. Barker, I may check him out first to see if he has experience in MF.ÂÂ
My current team have noted their past in AN removals, but never really elaborated on the procedures (I think I was too naive at that appt to probe the question further and this site certainly helped me to know what to ask now). I do, now, question if my team has what it takes to do the procedure on me, but at my last appt, my dr noted that she was more than happy to give me names/phone numbers of past AN patients so I can talk to them about their procedures and outcomes, which I feel is also important.
I really appreciate your inputs on this... and will want to know your updates as well..... please keep me posted on your decisions as well, if you decide to go to House (confirmed) and what procedure you will have (MF?). Sounds like we all need to stick together... this forum really is a terrific support for me... and us all.
Happy Thursday to you!
Phyl
Hi Phyl,
My thoughts are that when trying to pick a treatment is that with surgery you are totally dependant on the skill of the surgeon, there skill and experience make all the difference. I have a friend who is an ENT surgeon, she always relates surgery to art, there are lots of people who can do paint by numbers but only a few who create masterpieces from scratch. Surgery is a skill some people can practice and get good some people are talented by nature. You should ask for statistics relating to out comes from you surgeon. House has very good information on there web site in respect to hearing, facial nerve and tumor re-growth over a ten year time table for Middle Fossa surgical approach. This is not to say that you can’t find good surgeons in other places. You will see many people talk of surgeons who where "experts" in AN surgery who had done 20 or so surgeries total, house does around 200 a year. If I decide to have surgery today I would chouse middle fossa and go to house because of the expertise.
John
5mmx5mm waiting and watching
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I twenty-three-years-old and have just been diagnosed with a acoustic Schwannoma. The tumor did not present any symptoms until about two months ago. The tumor is already about 3.5 cm in diameter. As surgery is the only realistic option, I would greatly appreciate a recommendation of a physician My main concern for surgery is the preservation of the facial nerve and facial function. I live in MA and was beginning to look into surgeons at MEEI and MGH. Also looking into the House Institute. What would be your recommendation? If you had to do it all over again would you have chosen a different surgical team?
Any recommendation you could make would be greatly appreciated.
Thanks everyone,
Andy
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Hey Andy,
Did you get your AN taken care of yet? Sorry for the delay in response time. I'm from the Boston area as well. Had mine done at Mass General. I'll be looking for your response.
Paul
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Hi Paul,
Here in Wakefield! Great to see another Bostonian around here! :)
I hear Martuza is great at MGH... I'm working with Drs Peter Black and Elizabeth Claus at Brigham/Womans (Dr. Black does approx 50 microsurgical AN's/year). Just had Cyberknife done last week at Beth Israel... great team over there as well. We are truly lucky to live in a medical mecca.
Hoping you and Andy are doing well...... sending wishes to you both!
Phyllis
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Hi Phyl!!
I've been seeing your posts in the General catagory. Yes we are lucky to be living in the Boston area! I'm in Billerica.
How have you been feeling? I still get tired all the time and need power naps throughout the day. Aside from that, I've been doing okay. Have you seen any of my other posts? (all in the general catagory) There must be a way to group them together for easy reading.
My doctors are Dr. Barker (neurosurgeon @ MGH) and Dr. McKenna (ENT @ Mass Eye and Ear) They are "the team". And a great team they are!! Have some things to do. I'll catch up with you soon!
Paul
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Hi Paul... have noticed your posts as well! :) Billerica? Heck, we're only 10 minutes away! :)
Great team you have! Have heard wonderful about Barker.. and McKenna.... you truly were cared for by some of the best in the area. I have not met them but Dr. Claus knows them both well and speaks VERY highly of them. Thrilled to hear you are doing well.
1 week post-treatment here, so a bit slow going but hanging tough mentally. Tired as well but still on the Decadron and such (on taper mode now) so, just taking things day by day and feeling good about my decision choice and hoping for the outcome we all wish.... Let me know if you ever head toward Burlington or Woburn Malls. Would love to say hi and meet another local AN'er.
Hang in there!
Phyl
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Dr's McKenna & Barker (MGH) removed my 1.1cm AN on 4/14/06 via translab. Released from hospital 10am on 4/18. Home catching up on email. Some strength (endurance) and balance issues but dramatic improvement daily. No other problems. Hearing was mostly gone months ago.
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Mac,
Hello and welcome! Another local (Boston-based) AN'er? (Crazycat is local and so am I)
Oh, you are in fab hands with these 2 docs. Here's hoping you are feeling better soon and if you are local resident, would love to say hi at some point when you are up for it (I'm out in Wakefield/Stoneham area).
Phyl
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From Hollis, NH just up the road a bit....
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Hollis works, Mac. Sending you wishes for a continued, speedy recovery and in time, maybe some of the local An'ers can meet and say hi. The local Boston ANA support chapter just lost their support leader, but I'm more than happy to go an extra mile to meet others in the area. :)
Phyl
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Hello Mac!!
Nice to meet someone who was treated by the same team I was. You were out of the hospital in a couple of days? Not bad!!
I was in for two weeks in August with the shunt installation and three weeks in Sept - Oct for the tumor removal - 5cm x 5cm.
Doing well now. I was deaf in my left ear for six years before diagnosis so at least I'm used to it! My band plays in NH quite often so maybe I'll see you there sometime.
Paul
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Mac, how are you feeling?
Paul, you let me know when you all are playing... I'll be there! :)
Phyl
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Yes Phyl......but first we have coffee!!!! Looking forward to it. Will call you soon.
Paul
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A bit of a set-back. On 3 May I woke up with a severe headache. Went right to ER at MGH. Spent until Friday being both treated and diagnosed. Still not absolutely sure what type of meningitis I have but that's what it is. It seems to be a "sterile" meningitis possibly due to localized fat necrosis and does not appear to be infected! Treatment with broad spectrum antibiotics immediately resulted in quick improvement. Since they could not get a culture to grow to further clarify, I've been sent home, with home-care assistence, to continue the antibiotics IV treatments for 3 weeks. Not feeling too bad - weak, shakey, still some balance issues but no more pain.
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Mac,
Sorry to hear that. Glad to hear you caught it in time! Did you see Dr. Barker? I have a return visit scheduled for next Thursday. MY follow up MRI is tomorrow morning.
Tjke Care, Paul
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I saw lots of Barker and McKenna and their teams plus Dr's from the infection team. Their attention and support were fantastic. They are getting blood tests and feed-back from the home-care people so are still monitoring for potential infections hiding somewhere. I get another MRI in a couple of weeks and go back to see them all in early June.
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Mac,
sending you hugs that this issue is resolved sooner than later.. let's get you back up and at 'em so you, me and CrazyRockerDude (Paul) can meet for coffee. You KNOW you are in the best of hands at MGH and thrilled you are hanging tough.
Hang in there!
Phyl
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Here's another Boston AN'er! I'm in Littleton, MA.
After a year of the wait/watch approach, it appears that my tumor is growing faster than expected. I had a repeat MRI yesterday at MEEI and a meeting with Dr. McKenna. He's set up appts for me at the end of the month with Dr. Barker and Dr. Loeffler to discuss both surgical and radiation treatments. Given the larger size of my tumor and my age (34), Dr. McKenna is recommending surgery, but wants me to meet with both doctors before deciding. I was hoping to do the wait/watch thing a while longer, but that's not gonna happen.
If anyone has tips or advice on what to expect from consultations with Drs. Barker and Loeffler, please let me know! (I'll post this in a separate thread as well.)
Thanks!
Katie
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Hello,
I had Drs Barker & McKenna at MGH. My surgery was on 9/21/05. I just saw Dr. Barker today for an 8 month consultation. So far everything is looking good: no regrowth. I do have lots to tell about my experience. I live in Billerica, MA. Right now, though, I have to get going. I'll be happy to talk with you at length about any of this.
For the time being, look for any of my posts under the user name "Crazycat" in any of the catagories, but especially the "Genereal" catagory. I'll be back later tonight.......
Paul
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Katie,
You got the best connection in CrazyKat... I hope you have the chance to speak to him as he truly is the best to speak to about MGH and Barker, etc.... and Littleton, yep, I feel a round of coffee coming on!
Phyl
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Thank you Phyl and Paul!
I'd love to talk more. I actually spent a long time last night talking with one of my neighbors who just happens to be one of the Radiation Physists that works frequently with Dr. Loeffler. So it was great to get his perspective, although it is definitely biased towards radiation treatment. So I'd love to get your perspective on Dr. Barker to go with that.
I meet for the first time with Dr. Loeffler on May 31 and Dr. Barker on June 1. My AN was 1.5cm back in Nov 2005, but has grown since then based on an MRI this week (I don't know exactly how much), which is why I'm now moving beyond the watch-and-wait stage.
Katie
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Hi Katie!
Here is a link to the post with my MRI scans on it - if you haven't already seen it: http://anausa.org/forum/index.php?topic=1257.0
Let Phyl or I know if you'd like to get together for coffee and discussion about this. We just had dinner last night at the Outback in Burlington! Both of us have been around the block in a big way with this problem: her with the radiation and me with surgery.
You're lucky to live in the Boston area and have access to the hospitals and doctors we have around here!
Stay in touch.....Paul
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Katie,
I think we can get Paul to buy the coffee but shhhhhhhhhh... don't tell him I said that! :)
Phyl
Hi Katie!
 Here is a link to the post with my MRI scans on it - if you haven't already seen it: http://anausa.org/forum/index.php?topic=1257.0
Let Phyl or I know if you'd like to get together for coffee and discussion about this. We just had dinner last night at the Outback in Burlington! Both of us have been around the block in a big way with this problem: her with the radiation and me with surgery.
  You're lucky to live in the Boston area and have access to the hospitals and doctors we have around here!
  Stay in touch.....Paul
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Let me know where the coffee is, and I'll do my darndest to be there! LOL!
Katie
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Katie,
We'll let you know soon. I was wondering, how big is your A.N?
Paul
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It was about 1.5cm last Nov, but has grown since. By how much, I'm not exactly clear. Dr. McKenna this week did say that while there used to be a space between the AN and the brain stem, that space is pretty much gone now. He also said that while most ANs are the typical "ice cream" shape, mine is more "sausage" - it's pushing out the bony structures of the ear canal in addition to expanding outside the canal.
My only symptom is the near total hearing loss on that side (left). I seem to have no facial or vestibular related symptoms. And I'd like to keep it that way! LOL!
Katie
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Katie,
Have you met Dr. Ron, Dr. McKenna's fellow? He's a great guy. He usually briefs all the patients before they meet McKenna. Both those guys came to see me while I was in the hospital a number of times. What are they recommending for you at this point: cyberknife or surgery? My growth was so far along I had no choice in the matter. I'm glad though that it was left to them; you're in great hands with those two - Barker & McKenna!!
Paul
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I don't think I've met Dr. Ron. At my appt last Monday, McKenna came in with a young-ish Indian doctor who I assumed to be his resident (I don't remember his name, unfortunately). But McKenna did all the talking both then and when I came back after an impromtu hearing test.
McKenna is definitely recommending surgery (translab). Of course, I've also had long discussions with one of my neighbors who is a radiation physist at MGH that works with most of the AN radiosurgery patients, so he's very biased towards radiation. I can see why radiation appeals and why it's the better choice for a lot of people, but right now I'm leaning towards surgery. We'll see how I feel after my husband and I meet with both types of specialists next week!
Katie
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Katie,
The trend seems to be that if the growth is on the smaller side, then radiation is the way to go. I know that radiation works. My father, who is almost 79, had a bout with prostate cancer 5-6 years ago. He was treated with pharmaceuticals and radiation. The drugs brought his PSA down to practically zilch and then the radiation killed it. The radiation went on 5 days a week for 1 month. By the end of that period he was uncomfortable. Now he's back to normal. The doctor told him that there are two forms of cancer that nobody should die from any longer: Colon and prostate cancers. It's important to remain vigilant about these problems though. We're lucky in that the a.n. is non-cancerous!! Of course the other weapons we have are diet and exercise which also work wonders!!
Paul
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Katie,
My discussions with Dr's McKenna & Barker around radiation vs. surgery were about complete removal of the tumor vs stopping development or reducing size, effective length of time, higher possibility of re-growth, and more difficult surgery (if necessary) after radiation. I chose surgery and once it was obvious it was growing, as soon as possible - smaller is usually easier. Surgery on Friday and home on Tuesday morning...... Driving and back at "work" within a couple of weeks until meningitis derailed it all. Am now wrapping up 1 week of hospitalization & 3 weeks of home IV antibiotic and steriod treatment. Ready to spend this long weekend on the boat somewhere off the Maine coast. And available for coffee almost anytime....
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Mac,
I have to ask.. the dr you spoke to about radiation... what form of radiation did they discuss with you? FSR/Novalis, Proton (at MGH), Gammaknife or Cyberknife? Each one have the ultimate same goals but.... there are differences and good outcomes. Just curious.
Phyl
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Drs McKenna and Barker both talked about all the radiation options, at a high level. I could have taken the discussion to a more detailed level but had done lots of research and had already decided I wanted the tumor completely out.
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Hi,
I was just diagnosed yesterday with a 2.5 cm AN, pressing on the brain stem. I am also in the Boston area, in North Billerica.
I'm so confused as to which approach would be most appropriate!
My hearing is not that bad, and I don't have any headaches that don't respond to a few Tylenol. I had a bout of diziness for a few months, with some slight diziness and balance issues remaining, slight tinnitus, and facial numbness.
My PCP had some names for me - Peter Brown at B&W, Julianne Woo at Tufts, and Carter/Ojemann at MGH. I have not contacted everyone yet. I have an appointment with Dr. Carter next month, and have a call in to Greg Noren and Robert Martuza.
I would LOVE to get together with you folks!!!
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Hi Ellen and welcome! Wow! You are down the street and around the corner from CrazyKat/Paul! I'm in Wakefield, FYI. FYI, we are all getting together end July if you are interested. Please see post in "General Discussion" started by me :)
Now, Peter Black and his protege, Elizabeth Claus are my team at B/W. I know Barker and McKenna (or is it Martuza?) are CrazyKat Paul's drs at MGH. I can tell you that all noted are exceptionally versed in AN surgeries and the absolute best in the area! I can give you the B/W recommendations... Paul can give you the MGH recommendations. In my opinion, I think it's a total coin toss on which group. All are the best of the best and you could do consults with both to get a warm cushy.ÂÂ
Here if you need my good ear... or hugs... we're terrific around here for them!
Hang in there and hope to meet you next month or next time Paul and I get together for Starbucks over at Burlington Mall (Mall Road, across from Lahey!)
Phyllis
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Thanks for the info!! I'll be consulting with several doctors, including both of your recommended teams.
I know that Starbucks well. :)
Ellen
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Hi, Ellen!
I'm seeing McKenna (neuro-ENT at MEEI) and Barker (neurosurgeon at MGH) for a translab surgery scheduled in Sept. I'm pretty sure this is Paul's team of docs, too. While I haven't *actually* had treatment yet, I've been very impressed with both of them. McKenna is following several hundred watch-and-wait patients in his practice alone. And the McKenna/Barker team does an average of 2 AN surgeries a week. They've got loads of experience.
If you can consult with them, I'd recommend doing so.
Katie
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Ellen,
You are on about Starbucks! Will be great to meet you!
Katie, fabulous recommendation.. as I know CrazyKat/Paul would say the same (after my numerous talks with him about the MGH team). Also can't go wrong with the B/W gang (heck, the admin staff even gets me coffee if dr is stuck in surgery while I wait in exam room). I have also spoken to other brain tumor surgical patients at B/W in the dr's waiting room... OMG, what they share with me about the care, their procedures, their thoughts on Drs Black and Claus.
Let me put it this way.. if my CK didn't work (gawd forbid, as I'm only 2 mos post treat and waiting to see if it worked) and I have to go micro-surgery, in no way will I hesitate to have the B/W gang remove it for me.
Hoping you both are doing well and hanging tough. Sending huggles to you both!
Phyl
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Hi,
Wow, I just read through this thread for the first time in months! Amazing to see how many people in my area are being treated at MGH. I just got home after day 8 of Proton Therapy, and so far, all is going just fine. I got a little wigged out about the mask at first but as long as I keep thinking about Fly Fishing in Honduras, I'm fine. I wanted to comment about Martuza/Mckenna/Loeffler and all the staff at MGH. I've been really impressed by them. All are great to return calls, emails and address any concerns. I really never expected a group of doctors to be as caring and understanding as these guys. Very impressive with MGH all around. Even the $4 valet parking!
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Jake, there have been requests here from newbies looking for Proton info. Other than you, I really am not familiar with the process and such. Is there someway you can share your experiences at MGH for Proton? Maybe in the Radio-Sugery forum? Not sure if one has been started there.
Hang in there and thrilled you are so happy with MGH... we live in a great city for all of these options available to us!
Phyl