Hypothalamic Hamartoma Center
organizational issues within the hospital
For the parents and their child with a hypothalamic hamartoma Welcome to our Center for hypothalamic hamartoma!!
Niigata Japan, We established a surgical procedure using magnetic resonance imaging (MRI)-guided stereotactic radiofrequency thermocoagulation (SRT) for epileptogenic hypothalamic hamartomas over 15 years ago in Epilepsy Center, Nishiniigata Chuo Hospital. Patient numbers topped the 100 mark for the first time in September,2013.
Our SRT procedure has favorable efficacy, and is minimally invasive. It has no adaptive limitations, regardless of the size or subtype of the hypothalamic hamartoma, and it is particularly applicable for parahypothalamic-type hypothalamic hamartomas (Figure 1. A:preoperative MRI, B:postoperative MRI, CDE:MRI-guided target planning). SRT has an immediate effect on gelastic (laughing) seizures (GS). Now we have treated 105 patients with hypothalamic hamartoma (maximum diameter: 5-80 mm). A large number of patients achieved complete seizure freedom (over 80%) and there were favorable outcomes for the otheres. There have been no permanent complications (up to November 2013).
SRT leads to additional improvement in other types of seizures and in intellectual and behavioral status. We therefore recommend this SRT procedure as a valuable therapeutic strategy for intractable GS associated with hypothalamic hamartoma. SRT is recommended early in the course of the disease.
Reference:
Kameyama S, Murakami H, Masuda H, Sugiyama I: Minimally invasive magnetic resonance imaging-guided stereotactic radiofrequency thermocoagulation for epileptogenic hypothalamic hamartomas. Neurosurgery. 65(3):438-449, 2009
Letter from Bulgaria. (November 2nd, 2012)
Miss Stela,7-year-old, lives in Bulgaria. She has hypothalamic hamartoma. So she underwent SRT in this Center on May 2012. Her mother sent us a letter about her condition.
Hi Dr. Murakami, Dr. Kameyama,
I would like to give you update on Stela's condition. SHE HAS HAD NO SEIZURES, as we know them, for four months now! Some times her face would turn red and she will become hyperactive for several seconds, but this condition can be interrupted. These moments were more common in the summer than in the last couple months. We had a 30 minute EEG in September that showed "no signs of epileptic activity". She is on treatment with Lamotrigine, which we switched for Depakine because of its many side effects. We go to school part time every day and Stela has a girlfriend already! We have much to catch up with the school material but I don't worry about this. She still has some behavioral problems but these will improve, I am sure. Everyone that used to know her before says that she is a different girl now. We have talked with my husband that you can write down for Stela's case that she is 100% seizure free!
We expect to have the MRI after the 6-th month sometimes in December or January. Dr. Minkin will have us give another EEG at the hospital and then we will send you the results. I can't tell you in words how grateful we are every day for all the care you have given us. And because we all know that it all happens in God's will, I also thank him in my heart every day, that you exist, and do what you do to help people. We expect our baby to come in the middle of December. Depending on the condition of the kids we will plan to visit you sometime during the next year. This is all for now. Please, give our greetings to everyone that knows us, all the medical staff that took care of us, Mrs. Kameyama and her girlfriend. We will keep in touch and wish you all the best, Aneta, Stela, Angel
P.S. You have my permission to use my letters to inform the public of our case and how successful is your treatment. If there is anything else that I can do to in this matter, please let me know.
PATIENT FROM ABROAD
In order to receive contemporary treatment, a lot of patients from all over the world has come to our Center.
We received a memorial photo of Russian child from Kazan city,who had Hamartoma Hipotalamus surgery in our hospital (front row the picture is three patients of our hospital).
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If you have any questions, opinions or requests, please contact us!
We kindly request, when you would like to send the first letter to the hospital,
write: full name, date of birth, place of residence of the patient.
Briefly describe the problem of contacting our hospital, but do not send any files containing
MRI, EEG and other images that may not reach the addressee due to the large amount of information.
Technical issues are resolved in the process of further correspondence.
Nishiniigata Chuo Hospital
1-14-1 Masago, Nishi-ku, Niigata, 950-2085 Japan
TEL: +81-25-265-3171 / FAX: +81-25-231-2831
224-hh-center@mail.hosp.go.jp