Chiari Online Support Group

Chiari surgeon at UCSF in San Francisco, California?

Dr. Cirricillo with Sutter Health in Sacramento recommended surgery, but my insurance won't authorize treatment. Can anyone recommend an excellent Chiari decompression surgeon at UCSF in San Francisco, California?

Dr Tarun Aurora

http://neurosurgery.ucsf.edu/index.php/about_us_faculty_arora.html

He did surgery on a friend of mine & she loved him and did wonderful.

I’ve been referred to Dr. Ciricillo too. Haven’t heard back from his office to set up appt yet but I asked my NL if I should have a CINE MRI before I see him and I was told Dr C doesn’t usually order a CINE MRI. Was that the case with you too?

Please do not be alarmed this NS doesn't order CINE MRI's upfront. I know many Chiarians that has never had one. It is an important test but any diagnostic ordered before a patient is seen, unless the Dr has gone over the patients medical records, is irresponsible medicine.



berryboys said:

Thanks TracyZ. I was concerned maybe he wasn't the right doc for me so I'll just go through the process and be a patient patient

We had a CINE MRI ordered by Dr. Zweinenberg-Lee at UC Davis Med Center, but Ciricillo only looked at the regular MRI, and focused on a thorough examination and discussion of symptoms with my daughter and I. He said there are varying opinions about reading the CINE MRI, and he does not find them very reliable. In decompression surgery he does not typically open the dura, but removes layers to thin it, and he scores it to allow it to expand. When it is thinned, he can see if the pulsations of the tonsils have subsided to determine the effects of the procedure. He said this is successful in the majority of cases, but sometimes he has to redo a surgery if there are complications inside the dura.

The UCSF Hospital in Marin created a publication last year stating they have a new Chiari facility and they require a CINE MRI to determine if surgery is the best option for a patient. My daughter was scheduled to get Botox Injections next week as a treatment for Basilar Migraines, by Neurologist Dr Gorin at UC Davis. I read up on the procedure and found it is designed to treat symptoms, and has to be repeated every three months. It may take two treatments to discover if it will work at all. Of course a migraine specialist is going to look for migraine treatments. It seems likely to me that Chiari could be the cause of the Basilar Migraine, so why not treat the cause? I cancelled the Botox treatment. All the other prescriptions the neurologists from Davis have ordered have shown no improvement, or made her feel worse. She took a six-day Medrol pack (steroids) with no effect, and the pharmacist said it may knock down her immune system. She is now recovering from two weeks of being ill with mono. My daughter's symptoms change, but she is frequently disabled by the Chiari symptoms, and was having such a day when she saw Ciricillo. I am concerned another doctor may see her on a good day and decide her symptoms are not severe enough to operate, and she will continue to suffer. It is so sad to see her spend days and weeks on the couch at 17, with crippling headaches, dizziness, nausea, blurred vision, syncope, ataxia, a numb leg, and badly affected motor skills. Other days she seems kind of okay, but only because the symptoms have subsided enough for her to cope. She is in favor of surgery so she can get her life back.

I know this is an old thread but I wanted to see if anyone is still part of the group. My 13 yo is scheduled to see Dr. Gorin at UCD in January but we belong to Sutter.

Any updated info on this. I am looking for a good doctor in Northern California for my 13 to review and compare three MRIs. I have also heard of a Dr. Grant from Stanford.


Thanks!

Hello Sydney's Mom,

Thank you for contacting me. My daughter had fantastic results working with Dr. Samuel Ciricillo, under Sutter Health. Dr Ciricillo performed decompression surgery on my daughter in February 2014, exactly one year from the appearance of her first symptoms. Of the half-dozen neurologists and neurosurgeons we saw, Ciricillo was the ONLY doctor who took the time to attentively listen to ALL of her symptoms, and provide an explanation as to what was happening and why her symptoms were changeable and progressing. My daughter's symptoms began and continued with syncope, in which she would randomly pass-out regardless of her position. Other symptoms included constant, terrible headaches, numbness in her arms and legs, blurred vision, vertigo, nausea and impaired motor skills so that often she could not walk. Although the MRIs showed a 10 mm herniation, some of these specialists concluded that her symptoms were psychological (Dr. Michael Edwards at Lucille Packard's Children's Hospital at Stanford), or they wanted to provide treatment designed for alleviating migraines. This was Dr. Gorin's response, and although his intern seemed to think a diagnosis of Chiari was worth exploring, Dr Gorin steered him away from this path, and suggested treatment for migraines that included over 30 botox injections. After reading up on the treatment and possible side effects, I cancelled the appointment. Dr, Ciricillo completed my daughter's surgery in less than an hour (he performs about 50 decompression surgeries per year). When she awoke in the recovery room, her first words were, "Mom, my headache is gone!" Within several hours she was able to walk unassisted, and after three-days she was on her way home. At her one-month follow-up she danced into Dr. C's office, and at her one-year appointment she was asked to come back for another visit in five years. Two years ago it was uncertain if she would ever be able to live independently, but I am happy to say she is 100% cured, and was able to complete high school with has plans for college.

I wish you all the best in finding the right doctor to provide successful treatment for your son.

Warm regards,

SS