Boston doctors Mckenna and Martuza/ FSR at John Hopkins

[Peanut]

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

[krbonner]

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

[Jack Palmer]

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. 

[Jack Palmer]

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

[ppearl214]

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. 

[steph]

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.

[BostonJake]

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

[julie]

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.

[ppearl214]

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!

[Larry]

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?

[ppearl214]

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?

[Larry]

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

[ppearl214]

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

[targa72e]

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

[ppearl214]

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. 

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. 

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