Ponsy

......

Publication on the same type of cancer by Iranian researchers

Good luck!

//www.springerlink.com/content/26k64788544273...

Thanks Dr. Amir

I also have limited information on the details of his past treatments but I believe as you mentioned the radiotherapy and Gamma Knife are the only options at this point.

Ponsy

Based on what you're telling me, it appears to me that perhaps maximal safe surgery has been done. I think at this point that radiotherapy and Gamma Knife radiosurgery might be explored. Radiotherapy is probably a more standard treatment and perhaps safer too (though, of course, every treatment has side effects). I hope that helps. The National Cancer Institute (NCI) has a good website.

Check out this link:

//www.cancer.gov/cancertopics/pdq/treatment/child-brain-stem-glioma/Patient/page4 

Thanks Maziar, Amir, Pedro, and Emrooz

For your wonderful support.

Dr. Amir,
I believe Dr. Samieii is the one who performed the first surgery but the information you provided is of great help.

I don't have my full internet access now that's why I try to be breif.

Thank you all very much.

Ponsy,

I shall remember him in my prayer. May he recieves the best treatment available, and wish his total recovery.

Bani adam aazaye yek digarand

Ke dar afarinesh ze yek goharand

Cho ozvi bedard avarad rozegar

Degar ozvha ra namand gharar

prayers and hope

thanks AMIR ,I was going to suggest Memphis,TN                              But you mentioned it already it's highly recommended also Dr. Amiri should be on team.   Maziar

I am an oncologist

In fact, I even gave a talk on Pediatric Brainstem Gliomas (although I am not a pediatric specialist). Needless to say, I cannot make a full recommendation without being involved in the case. Moreover, I specialize in adult tumors, though I have some exposure to pediatric tumors. Here is what I know:  

However, there is no documented advantage to very aggressive surgery (& no prospective data in these patients). With surgically inaccessible tumors, radiotherapy provides long-term control of 50-75%•     

     Weekly Carboplatin and Vincristine chemotherapy is active in limited numbers of young patients. 

One could try to go either to St Jude Children's Research Hospital in Memphis, Tennessee or University of Pittsburgh Medical Center. I did a 6-week rotation at St Jude during residency. It is a world leader in pediatric oncology. If they accept the child, the family does not have to pay for treatment from their own pockets. Boston Children's Hospital and Massachusetts General Hospital are other possibilities. With respect to Gamma Knife, the leading center in the U.S. is University of Pittsburgh Medical Center. I believe that Tehran has a Gamma Knife unit, though I cannot attest for or against the expertise of the doctors there (they might be very good, but I just don't know). Gamma Knife radiosurgery can be tricky in the brainstem of a child and an expert opinion should be sought.

Dr. Majid Samii in Germany is one of the world's most famous neurosurgeons, and he may also be of assistance to you.

Good luck. Let me know if you have further questions.

I am praying

I am praying for this young child. I truly hope we will hear of his wonderful recovery very soon.

You may want to look into this even if it is just for consultation, since Dr. Samii is out of the country.

//www.societyns.org/society/bio.aspx?MemberID=15543

Thanks Yolanda

My email should be on its way. Thanks again!

Dear Yolanda,

I think the first email is through iranian.com system but as soon as i receive your email I can send you mine.I also check my email frequently.

Thanks and sorry for the trouble!

Thanks Bajenagh Naghi,

I am sure his parents are looking up an also down on earth to find the right answer/treatment. Usually we are clueless about these stuff until it hits us unexpectedly. Thank you very much for your comment!

.........

Hi! Ponsy,

     I clicked on the "contact" button, but I realized that there is no "attachment" feature.......if there is one, I just don't know where it is, please let me know......I really want to send you the info.....hopefully they can find the right treatment soon!

Ponsy jan

I am not a physician but due to the nature of my job, I come accross a lot of people who have surgery, including brain surgery. I am amazed at what surgeons are able to do these days. With new technologies these professional "miracle workers" are able to remove tumors all the way deep in the brain and their patients are up and walking in just few days.

I will pray for the little one and I hope he will receive the very best care that is possible.

Thanks Yolanda

I am also at work ;O) but frequently checking this website. I don't want to miss any of the comments.

Thank you very much!

......

I e-mailed your blog to a relative of mine who does brain tumor research....he said that Pilocytic tumors are easily treated........he even e-mailed me his research publication....I will send you the publication after work 'cause I can't access to g-mail (my private email) from work......

Good luck! There is hope and hang in there!

yolanda 

Thanks Monda,

We sure will need all the prayers along the medical means. 10 is awfully a short life time to be cut. I will keep posting about his conditions as I get updates. Thank you very much!

Thanks Anonymous

It's a good link. I am collecting all these information but still wondering if the Gamma Knife is the only option. The link says, there are 45 Gamma Centers in North America, that might include Canada or possibly Mexico but seems Boston Gamma Knife Center is one of the good ones.

Keep us posted

My hope in his recovery is all I can offer. 

Type the title of this blog as a question in google for more

I typed it in and the first link is for this blog but this one was for gamma knife like you said:

//www.jonathanborden-md.com/gamma%20knife%20mass%20dental.html

By the way I'm don't know anything about medicine or anything like that, just a well wisher 

Everything is sacred.

Thanks Jahanshah,

I will check the link you provided.

Thanks vildemose and Anonymouse

I am following your links now. As a side note, the patient was treated by one of the most well-known neuro-surgeons, however the symptoms have come back with further progression. That's why the only option might be the experimental treatments through non-invasive surgery such as Gamma Knife or any other technologies at research phase.

Another specialist

You may also want to get some advice from Dr Jamshid Ghajar:
//www.ghajar.net/

He can be reached here:
//www.braintrauma.org/site/PageServer?pagenam...

I wish him get better. Georgetown Univ has good pediatrics

There was a good pediatric neurosurgeon in Georgetown but I think he is gone, can't remember his name, no name shows here that sound familiar.  But these links from the hospital may help.

Good luck and best wishes.

//www.georgetownuniversityhospital.org/body.cfm?id=607

//www.georgetownuniversityhospital.org/body.cfm?id=660 

Everything is sacred.

contact any of these two brilliant doctors:

Nader Pouratian, M.D., Ph.D.

Assistant Professor and Director of the Neurosurgical Movement Disorders Program. Dr. Pouratian specializes in surgeries to restore and preserve brain function, including deep brain stimulation for movement disorders (and other emerging indications) and surgeries that require brain mapping. In addition, he treats peripheral nerve and brachial plexus injuries and tumors. His research focuses on developing novel interventions and technologies for neurological restoration.

Linda M. Liau, M.D., Ph.D.  

Professor and Director of the UCLA Brain Tumor Program. Dr. Liau's clinical expertise is in intra-operative functional brain mapping and use of intra-operative imaging for resection of brain tumors (gliomas, meningiomas, and metastatic tumors). Her research efforts are focused on the molecular biology of brain tumors, gene therapy, immunotherapy, and brain cancer vaccines. Dr. Liau is the current Editor-in-Chief of the the Journal of Neuro-Oncology.

//neurosurgery.ucla.edu/body.cfm?id=19

Thanks AO

Desperate times call for desperate measures. You comment means a lot!

I am not a doctor

and unfortunatley cannot offer any advice, but I hope the best for this child and wish him a full recovery.

Thank you Phantom!

The progress rate of the tumor and its location has made his parents to resort to more aggressive treatment options.

He will be just fine

As a layperson, with  the most sincere wish for his ultimate well-being, I can only suggest considering the Mayo clinic.

//www.mayoclinic.com/health/brain-tumor/DS002...

I appreciate all the information I can get

form people who are aware of the treatment options other than what has already been done to this little boy.
Duke and Stanford medical schools possibly can offer experimental treatments, in which to my understanding, they are the only treatment options left.
Please feel free to leave a comment or contact me via Iranian.com email system.
Thank you!