Dr. Kassam at UPMC - Reputation?

[LisaA]

Hi everyone,

I'm starting to narrow down my decision to a handful of doctors, and was wondering if anyone has an opinion on Dr. Amin Kassam at UPMC - I did a search on this board and came up with only a few results, one of which was from a member named Becky, who doesn't appear to have posted since mid last year.  She says she doesn't recommend him, but I've heard tons of great things about him.  Does anyone recall what Becky's experience was?  Does anyone else have experience with Dr. Kassam?

Thanks,

Lisa

[Zoe]

Hi Lisa,

I don't know Dr. K, but this past Fri I had a consultation at UPMC with Dr. Barry Hirsch.  He recommended that I also see Dr. K who works with him.  He spoke very highly of him.  But Dr. K was not available the day I was in Pittsburgh, so I didn't get to meet him.  If I should decide on going with Dr. H, I will call and make an apptmnt to see Dr. K first.  Dr. H was strongly in favor of cyberknife for me and not surgery. 

How are you doing?  Where are you now in the process?  I hope you have more clarity than I do.  I am so confused and bewildered.  I have had 3 consultations so far and have another one this afternoon at Univ Hosp in Clev with Dr. Megerian.  I met with Dr. Chen at Allegheny Gen Hosp in Pittsb on Mon and with a Dr. Peter Weber at Clev Clinic last week.  Each one has a different opinion and "contradicts" the one before that I heard.  So I don't know what to do.  I am scared of either option - radiation or surgery. 

Keep me posted if you get any more info on the drs.
Thanx,
Zoe

[LisaA]

Hi Zoe,

I know what you mean.  So far I've learned that full endoscopy is probably not the greatest idea right now.  At first I was thinking of it as some magical solution that would hardly even be like having surgery (I think this was my way of mitigating some of the abject fear I was experiencing over learning that I have an AN).  But on researching it, I've only found a few doctors that do it (and how hard is it to find out about which doctors are good at what??), and the two that looked promising did NOT have backgrounds that I needed in order to feel comfortable.  One of those doctors was Dr. Hrayr Shahinian.  He is board certified in GENERAL surgery, and is NOT a neurosurgeon.  EEEK!!  No thank you!!  The other doctor that I'd heard a lot about in terms of fully endoscopic surgery was Dr. Kassam.  He's a neurosurgeon, but is NOT board certified, and that makes me nervous.  Also, I think the effectiveness of endoscopy is going to have a lot to do with the placement of the tumor.  If it's fully inside the ear canal (like mine) then I think it's trickier to deal with in a fully endoscopic procedure.

As far as hearing different things from different doctors, I'm in the same boat.  House Ear Institute recommended Middle Fossa for me.  But I've just learned about Dr. Fukushima, a world-renowned neurosurgeon with whom I have an appointment on 9/22 - and he does retrosigmoid, and apparently does it WELL.  His outcomes/statistics are better than House Ear!  I'm SUPER EXCITED about meeting with him - I just wish it wasn't a month away.  In the meantime, I'm trying to learn as much as I can about him so I can feel comfortable that he's as good as he sounds.

So, so far, I've had one phone consultation.  I have another consultation at Duke this Friday with Dr. McElveen, and then another one set up with Dr. Fukushima in September.  I'm really just desperately trying to find out who the best neurosurgeons are for ANs.  Why is that so difficult?  Couldn't there just be a list out there of top neurosurgeons, their specialties, and their individual sets of statistics on patient outcomes?

Sometimes I feel like I'm making headway in this decision-making process, and sometimes I feel like I'm at a standstill.  I just want it all behind me.

[Zoe]

Wow, it's like you are reading my mind.  You expressed so well exactly what I am feeling too.  Glad to hear there is at least one other person out there experiencing what I am.  Let's pray for each other and share any info that we each get. 

Okay?
Zoe

[MAlegant]

Zoe,
Let me know what you think of Dr. Megerian.

Lisa and Zoe, 

I'm sorry you're getting conflicting opinions.  For me it was easier because the doctors basically agreed on everything.
Good luck,
Marci

[LisaA]

Hi Zoe,

Just wanted to drop you a line and give you an update...I have scheduled a surgery with Dr. Fukushima on 9/26.  I spoke with a woman who had her surgery with him several years ago, and that conversation was such a relief.  She couldn't come up with enough superlatives to describe him.  Dr. Fukushima is apparently one of the top neurosurgeons in the world, so I'm much more at ease with the whole thing.  I'm no longer worried about all the things I've read which could happen during, or as a result of, surgery...except the balance issue - which is unavoidable no matter who your surgeon is, or which surgery you choose, since the vestibular nerve is always going to have to be severed. 

In regards to the discussion we were having about getting conflicting opinions - I've spoken with at least 4 neurosurgeons/treatment centers, and I've gotten recommendations for middle fossa, retrosigmoid, and radiosurgery.  Each of these recommendations were from very respected institutions (House Ear Institute, UPMC, MD Anderson, McElveen at Duke, and Fukushima).  Not only were each of those treatments recommended to me, but nearly all of them recommended against the other options!  One would recommended Middle Fossa, and strongly advised AGAINST radiosurgery.  Another would recommended retrosigmoid, and strongly advised AGAINST Middle Fossa (and radiosurgery). 

In the end, it came down to the research I had done and what I was comfortable with.  And one of the things that really has stuck with me throughout the research is that your choice of surgeon means everything.  If you have an excellent surgeon, it is at least as important as the surgical approach you choose.  Of course, part of what makes your surgeon the right one is not only that he's very well respected, but also that he's done a LOT of AN surgeries.  That's really KEY.  Make sure the one you choose has done A LOT of them.

I hope you're doing well, and that your research and decision-making process is going smoothly.

~Lisa

[CROOKEDSMILE]

Stay away from Dr. Kassam and Dr. Jannetta. I currently have a suit against the 2nd one. The care at Allegheny is horrible. Can't go into details.

[Zoe]

Glad you were able to make a decision and also feel so good about it.     Where is Dr. Dr. Fukushima from - which hospital and city? 

I am still in the "DMF" stage of the process - dragging my feet, that is, about making a decision. 

Hopefully, some day soon, I will be where you are now --- a person with a decision!   

Special prayers for you on 9/26.  Keep us posted.
Zoe