Comments on: Dr. Thomas Milhorat

By: Lisa

Lisa — Wed, 03 Mar 2010 16:09:53 +0000

Hi everyone,

I saw Dr. Milhorat for a consultation 13 or 14 years ago, when I was in my early twenties. He recommended the surgery, but I balked for a while. While I liked him, I wasn’t sold on the procedure he advocated, and I also wasn’t thoroughly convinced I needed the surgery.

After a little while of living with it, I decided I did need the surgery. While my symptoms were classic and I’d always had them, I also had been deteriorating after a series of head injuries.

When I had the surgery in summer 1998 or 1999, it was performed by the chief neurosurgeon at Brigham & Women’s Hospital in Boston, Dr. Peter Black. Dr. Black was the one who recommended the surgery for me to begin with. I had a standard case of Chiari, with a 12 or 13 mm distension of the cerebellar lobes, and no syrinx.

I can honestly say that I feel Dr. Black gave me my life back. I feel incredibly sad for those who were abandoned mid-treatment and for those who have not been successful in getting treated so far. I also feel sorry for Drs. Milhorat and Bolognese who are facing this attack for working with a controversial set of patients.

Dr. Black specializes in brain tumors and he does a more traditional Chiari surgery, I believe, without using any added membranes or hardware (at least for a patient like me). If you are stuck and looking for a doctor right now, I wholeheartedly recommend Dr. Black if you can get to him.

Sorry for this long post and best of luck to you!
Lisa

By: Julie

Julie — Mon, 06 Jul 2009 00:46:40 +0000

Does anyone know what the latest news on TCI is. Seems like we are getting put on hold but nobody is giving us info. Do they have another surgeon and are things back on schedule? I am not sure if they don’t want to deal with us anymore or they are just behind schedule. I have not given up on them yet. They are the only doctors who will even try and help. I think the news about Dr. M. is very said. I thought he was a very nice person and skilled doctor. Maybe he will return to surgery. We really need him now.

By: monica

monica — Thu, 04 Jun 2009 00:49:36 +0000

I just want to say, that my daugther 17 years of age (from Mexico city), went to TCI almost 3 years ago, and since the beginning, she was well treated by all the TCI staff. She had syringomelia and CMI surgery, who bring her life back. It is very sad to hear all these horrible things about the 2 doctors who made so much for my daughter. I think that doctors are no perfect, no Gods, and that can make mistakes like any human being. Sadly, for few of these people who unfortunately had bad experiences (that could also happened with any doctor on earth), could make so much damage to their reputations, affecting on the other hand, many patients in the need to have this complicated surgery performed by Dr. Milhorat and Dr. Bolognese, (as a team).

By: Hope

Hope — Mon, 25 May 2009 04:02:56 +0000

I had a consultation with the Chiari Institute on Friday, May 22, 2009, and it was a real disappointment to say the least. During my visits with their three physicians, I realized that they did not take the time to review the medical information that I provided to them ahead of time. The neurologist, Dr. Shelat, did nothing more than give me an anatomy lesson. He did not do a physical examination or testing, i.e., have me stand and close my eyes to see if my balance was impaired, have me touch my nose, or test for numbness in my extremeties. Neither did he give me much of an opportunity to review any of my specific symptoms with him. He had very few questions regarding my neurological complaints. He said that my MRI indicated that I had a problem with my CSF but did not tell me if it was too high or two low. He said that the neurosurgeon, Dr. Bolognese would explain it to me later. He also gave me written instructions/prescriptions to purchase and use a traction device and cervical collar. Make a mental note: At the bottom of both of these instructions is written “Dx: Chiari I Malformation.” A diagnosis would lead one to conclude that you had the condition would it not? He next offered to have the orthopedist in their office come in and talk to me since he saw some issues that might need to be addressed. The orthopedist came and began talking about pain in my lower back. I was a little lost since my primary pain is in my head, neck and upper shoulder areas. It did not take long to figure out that this guy was in the room for the money. He was in a hurry to chop me up until he was told that my lower back was not at the top of the priority list and that this patient had greater concerns with the upper neck and skull to worry about. Hhmm…My lower back problems did not have the same urgent need of intervention after I told him that the pain was not that bad and the pain I did suffer from was satisfactorily fixed by a chiropractor. The rest of his billable time was spent on answering questions I already understood. I did not find his visit enlightening. Now I have saved the best for last, my consultation with the neurosurgeon of the Chiari Institute, Dr. Bolognese. He never did tell me exactly what was wrong. He saw that I had questions written out and he immediately hopped to answering the questions. In between answering my written questions that were actually notes for me, he had the nerve to take three personal phone calls on his cell phone. This was a great distraction from the consultation. It also showed an enormous disrespect to me, especially since the conversations he was having with whomever it was on the other end, revolved around how much longer he was going to be held up in the office. After the third phone call, I was so disappointed and disgusted by his behavior that it seemed pointless to bring to his attention the inconsistencies of what little he did tell me about his findings and the ones I was told earlier in the day. Dr. B tells me I do not have Chiari but “low lying tonsils”. So why did the other doctor write on the prescription pad “Dx: Chiari Malformation” if I did not have it? This looks like an incongruency to me. I also did not get a satisfactory answer about my cerebral spinal fluid levels. I do not know if it is too high or too low, or if there is a more serious problem I should be aware of. I was also disturbed when I asked Dr. B a question about my initial MRIs and it was evident that he had not taken the time to review them. He mumbled something about it being in my chart. His response did not reflect an appropriate response to my question. As I have heard said before, “Here’s your sign!” Dr. B. never adequately explained my CSF problem to me but that might be because he was on the phone three different times during my 15 to 20 minute consultation. He said to me at the end that he would send me a report with all of his findings. He clearly wanted me out and was annoyed that I was frustrated with they way he presented or rather failed to present my results. Then he rushed me out the door. He even offered to help me put my notes into my bag so he could get out the door faster. I did not want his help at that point. I just wanted out. Now I wait for the report he promised. The question is will my results be of any value to me since I will question the validity of its conclusions based upon the way I was treated from the moment I arrived to the moment I left the office.

My advice to anyone considering a trip to New York to be evaluated by Dr. Bolognese and the Chiari Institute, let the buyer beware. The Chiari Institute has a good dog and pony show but they did not use diligence for the preparations of the patients dog show. They did not provide this person with the dignity and respect I deserved. I deserved more than the explanation that my accident was what pushed me off the bridge. Being pushed off the bridge is not the biggest problem. Dr. B. left me on a bridge named “Disrespect Over A Physician” waiting to decide if I should be a jumper.

By: Amy

Amy — Sun, 17 May 2009 23:03:39 +0000

It is because of Dr. Milhorat that I am walking and talking today. I was a victim of a TBI during a forceps delivery. Dr. Milhorat performed a craniotomy to drain a subdural hematoma while I was in a coma at 1 week of age. The odds were definately against me, however I am now thirty years old and a Master’s level teacher. I owe my life to Dr. Milhorat, literally. It is a shame that these Dr’s are being attacked in this way.

By: heather

heather — Sun, 17 May 2009 01:31:50 +0000

I’m a little torn when it comes to the drs. My mother has chiary and had the decompression and tethered cord by them. The very next day after the surgery, she developed an infection and was in the hospital for the next month following. This was in 7/06. She continued to battle infections constantly. In 11/07 she had to have all of the hardware they put in her head removed. Basically, she is back to square one. It did improve her memory and swallowing abilities, however, she now has to wear a halo every day, which is awful. In the beginning, the dr.s were both great. They were in constant communication with her and available any time she needed them. However, once the surgery was considered a failure, she has basically been turned over to the nurses. That is pretty much the only communication there has been for the past 2 yrs. Now she faces having to eventually have her rods put back in, but is terrified to go through it all again after all the misery she’s dealt with the past 3 yrs. Chiari patients I believe are guinea pigs, but mostly just because so little is known about it. I dont blame that on the drs. But it is rather hard to know for sure if they truly have the patients welfare in mind all the time.

By: Jennifer

Jennifer — Wed, 13 May 2009 19:59:05 +0000

I wish I knew where my sister could go. She has pain every second of her life and can’t seem to find anyone to help her at all. As far as them ignoring her…..that is a fact. She got wonderful treatment from them in the beginning, and I realize that not much is known about Chiari, as she was misdiagnosed her entire life, it wasn’t until 3 years ago that she got diagnosed with Chiari. I do believe however that the institute does things that they shouldn’t, while she was in the ICU after her cranial fusion last year the doctors made comments that the Chiari team does whatever they want and the rules don’t apply to them, that to me says it all. As for Megan, don’t worry….my sister was told today that there is a new surgeon there and surgeries are happening at the institute. We were never looking for 100% success rate, just a little less painand a better quality of life for her, she was better off prior to the surgeries performed in New York, it breaks my heart to see her now, and worse yet that no one will help her. Good luck to you.

By: Tom

Tom — Wed, 13 May 2009 16:44:31 +0000

As Beth said, the treatment is relatively new and there are no guarantees. The Chiari Institute performs 500 surgeries per year and not everyone will get a good result. No surgeon will have a perfect record. As to them ignoring Jen’s sister, I would be shocked if this was the case. We have always found Drs. M and B to be available. Because of what happened and the articles in the NY Daily News, it is going to be difficult for the Chiari Institute to take care of their patients in the near future. Hopefully this will be only temporary and things can go back to the way they were. Megan, I hope you can get treated very soon.

Michel did not have the cranial fusion because she has osteopenia and we were afraid that the bones in her spine would not be able to hold the metal bars. She did have the detethering which basically restored her ability to control her lower body. Earlier she had decompression surgery by a different doctor (before we discovered the Chiari Institute) and he butchered her. Drs. M and B redid the surgery and literally saved her life.

By: Beth

Beth — Wed, 13 May 2009 03:19:55 +0000

Chiari treatment is relatively new so of course it may not work. It’s still a treatment that is being perfected.

By: Megan

Megan — Wed, 13 May 2009 01:02:19 +0000

I am a 16 year old patient of the Chiari Center. I’ve been in pain since I was 12, and it has come to the point that in March I was admitted to the PICU (pediatric intensive care unit) shrieking in agony. I had numerous scans, and when the head of neurosurgery took a look at them he immediately ran and got Dr. Bolognese. Dr. Bolognese promised me that the very day I got out of the hospital, I would be worked up. He held true to that promise, and within one day I had more information and hope than I’d had in the past four years – my condition, which had been misdiagnosed as a cardiac issue, was in fact Chiari I, aggravated by a condition called Ehlers-Danlos.

Within a week from that meeting, I was in the operating room undergoing Invasive Cranial Traction – a diagnostic surgery for which I was awake. A side effect of the procedure is that it can relieve pain, and you truly cannot imagine how it felt to suddenly feel absolutely fine for the first time in years. I almost cried on the operating table. Dr. Milhorat spoke to my mother for 45 minutes, and Dr. Bolognese spoke to her for another 45 minutes. They agreed that I would undergo surgery within the month, if I so chose. I was elated, and chose to get the surgery as soon as possible. A cure was available, and for once, hopes for a normal life were realistic!

Three days later, the “abandonment” fiasco took place. Now, Milhorat has resigned and my imminent, necessary surgery has been postponed indefinitely. I cannot express how bitterly disappointed I am (that is the understatement of the century), and how truly horrid it is that the media is demonizing the only two doctors who could possibly help me (as I don’t have plain Chiari, I actually have a condition that 1 in 10,000,000 people have, which requires a surgery that only Drs. Milhorat and Bolognese could perfom.)

As for Jennifer’s comment, I’m truly sorry for what your sister has gone through, but if you can find one doctor with a 100% success rate, especially in a field so complicated as this, please do so as I could apparently use a new doctor.