Monday, May 11, 2009

Milhorat gone- Where does this leave us?

Surely anyone who has found their way to my blog has already heard that Dr. Thomas Milhorat has retired after outrageous claims and a susbsequent suspension of his license.
I refuse to post the articles, because I won't give that rag (The Daily News) an ounce of legitimacy.
I'm writing here now because I'm saddened that this topic has been placed "off topic" (not allowed to be discussed or mentioned) at most leading Chiari Support sites.
I can understand not wanting to pass misinformation during a time when the full picture has yet to be seen or known.... However, I know that many of us are looking to bounce ideas off one another.. We're looking for support and to share our concerns.
Regardless of what comes out this week about Dr.Bolognese, one this is sure- The Chiari Institute as we know it is in dire straits. Without Milhorat, many of us are left not knowing the fate of who will ever perform future surgeries.
Dr. Milhorat is the lead surgeon. Dr. Bolognese is the intraoperative doppler guy. While Dr.Bolognese is brilliant, I'm not so sure he'll be enough. He's like the jelly without the peanut butter.
Many of us (or our family members) are awaiting surgeries. Now what!?
Will TCI remain open? Who else is there? I've always hung my hat at TCI's door. I know the names of many other Chiari experts (Oro, Benzel, Frim, Menezes etc..) but which of them are the best? Which of them had faith and support for TCI docs?

I've made my opinion clear to many about the April 10th incident to many...and I've been vocal about it at the Newspaper's comments sections. I don't want to rehash it here if I don't have to.
I have respect for both of these men, while I have no respect for the press. There is much more to this story and I doubt the truth will ever be told in the Daily News print. North Shore University Hospital also has a lot to lose by allowing the real story to leak. At the very least, NSUH was (and has been) complicit in allowing Universal Safety Protocols to be ignored for the sake of expediency($$$). There is absolutely NO EXCUSE for placing a patient under general anesthesia without the surgeon at the very least scrubbing.

Obviously much more is to be revealed, but I felt that it's impotant to have a place where people are free to post their thoughts and fears without being told it's "off topic"... because we're all left high & dry at the moment. We're used to being left high & dry by ignorant dismissive doctors who know nothing about chiari, but dismissal by our very own support base is inexcusable.

Don't ignore the elephant in the waiting room.


Allen Y. said...

Good for you.

I know Laurie and I have been in shock since the story broke and now that Dr. Milhorat has left we are wondering what will happen at TCI especially since Dr. B is still under suspension and I think the lawsuit count is at 12 right now? While on one hand I can see why the boards have blocked this discussion but on the other hand think there should be a place where this topic should be allowed.

I wonder what is next...and if all 12 lawsuits go through what would lie in store for Chiari patients after that?

Kristen said...

My son see's Dr. Frim and we love him. I'm not sure what's next for TCI, but I would recommend Dr. Frim anyday. There are other options out there. Excellent options! I'm sorry for the hassle this may cause you and many other patients but you never know, this could be a blessing in disguise. Don't take that to mean I'm bashing anyone's names because I'm not. Like you, I don't know the truth or what happened but I do know (and firmly believe) that all things happen for a reason. ((((HUGS)))

Carolyn said...

Thank you for posting this. I've written similar posts in my blog the past few days. I'm disgusted with the media and with the frivolous lawsuits and with the hateful slander against the leaders in our field.

It has also left me lost and confused. I don't know what to do with myself, knowing that the next surgery should be the last one...the one that puts me closer to "normal". But when can this surgery take place?

I'm lucky. I have to wait for surgery anyways, because I'm waiting for my bones to grow more dense before my fusion is revised.

But others are ready for surgery now, and for ridiculous reason, they can't have the surgeons they trust perform them.

The hospital is clearly at fault for the scheduling situation, in my uninformed opinion.

I don't think I could see another Chiari "expert". I've seen Dr. Heffez, and been gravely disappointed. I can't handle to be disappointed by doctors anymore. I guess I'd rather just wait this one out...

Helene said...

If you are a person with a connective tissue disorder, like my daughter, the Chiari Institute is the only place to go. If you have decompression without the fusion and titanium rods to support your skull you are just making a weak structure weaker. A friend of ours daughter went to Dr. Heffez and he did the surgery without the support and this teenager is so much worse off than before. I'm so glad that Dr. B has been reinstated.

Anonymous said...

I am so upset by about how the press is trying to ruin two good mens names and credibility. Dr. Milhorat is a great doctor, and no one should question that. I am 17, Milhorat and Dr. B did a brain decompresion on me in november '08.
I am so thankful to both of them! Thugh I had a to have a shunt put in a few weeks ago because of a csf leak in my head from Milhorat not getting it closed all the way. I don't blame him though, my dura was just to thin, nobody could have got it closed. Dr. Insinga did the shunt surgery, he works for the chiari institute also and is SO AMAZING, I recommend him to anyone!

Anyways I don't know whats next for TCI, I just know they are loosing one hell of a surgon, who we will never be able to full replace.

Miranda T.

Anonymous said...

Hi Laurie,
Please give those of us who have been crippled by Dr. B a chance to prove our cases. Dr. B performed surgery on me for tethered cord. All I had on the before pictures was a herniated disc. My after pictures are a train wreck. He associated my chiari (caused by an accident) with a tethered cord? Well, if you would see the before and after, you would not let that doc near you for a tonsilectomy. The proof is in the MRI~
Dr. B is not the best Chiari doc in the country, they just don't use PR firms!

staceinspace said...


I live in Michigan and I have been diagnosed with a 15 mm chiari and suffer from symptoms that is making my life a deteriorating mess. I have been in contact with the Chiari Institute but cannot afford the travel expenses to go there from Ann Arbor. Can anyone recommend the surgery to me if there CSF fluid is blocked on one side? I do not know what to believe about the lawsuits as there are so many ambulance chasers but I do know the institute is needed. Docs here in MI are not very familiar with chiari even at the U of MI where I go. I would much rather be operated on by people who do it all the time.

Nice to meet you.


breuddwydiol said...

My daughter has also seen Dr. Frim with whom her pediatrician has a professional relationship. Dr. Frim did not recommend surgery at this time, as her symptoms were not clearly requiring surgery, but instead he recommended a wait and see approach. He seems to take a more conservative stance on neurosurgery, which I wholeheartedly support.