Among all the googling I had done soon after my diagnosis I came across a website called the Spinal Cord Tumor Association. They had a forum on the site where people who have and/or had spinal cord tumors can share their stories and experiences. As I read through people's posts and stories I kept seeing this one paticular Dr.'s name come up over and over again -Dr. George Jallo. I had read that if you send him your report and your MRI scan that he would review it and give you his opinion. So I found his e-mail address and thought it wouldn't hurt to at least to try to reach out to him to see what he would have to say. So I e-mailed him my story along with my report and MRI scan. Within 12 hrs. he responded:
" It is hard to comment without seeing the contrast study. It appears to be a benign tumor with a larger cyst. I would favor surgery as well, as the cyst will most likely grow over time.
If you send a copy of the contrast MRI I would be happy to review"
George
George Jallo
(I included Dr. Jallo's information for those of you who also have a SCT or Ependymoma of the brain which has not yet been treated. Definitely consider sending your information to him for a second opinion. Note: his information is on many websites, so I am not publicizing his personal information, it is out there on the web and easy to find.)
Division of Pediatric Neurosurgery
Johns Hopkins Hospital
600 N Wolfe Street, Phipps 556
Baltimore, Maryland 21287
gjallo1
I couldn't believe he responded to me so quickly (I can't even respond to my e-mails that quickly). This guy is one of the top Neurosurgeons in the states, I can only imagine how busy he is, so for him to respond to me so fast was truly amazing. His answer was nothing I didn't already know, but it was comforting, for lack of a better word, to know that he was also suggesting surgery.
In the meantime, people were reaching out to my husband at work and making connections. A connection to Visualase was made through one of his co-workers. Visualase is a new age MRI guided laser technology that can destroy tumors mostly in the brain without having to do a major invasive surgery. http://www.visualaseinc.com/. My case was sent to the neurosurgeons there to see if anything could be done for me using their technology. Unfortunately a Visualase procedure on a tumor within the spinal cord contained within the dura has some potential challenges due to the release of heat and swelling within the membrane.
Another connection through my husband's work was made to a company in the states called PinnacleCare, which is a private health advisory company. This company will give you access to the finest doctors, hospitals, medical institutions and specialists in the world that are best suited for your case. After discussing my case, PinnacleCare came back with the best surgeons in the states that would be the best recommend to preform my surgery, and since we live in Canada we asked them if they could do some research on the Neurosurgeon that is currently working with my case - all great reviews on him as well, so that's a plus!
After telling my husband that I got in contact with the Dr. at Johns Hopkins hospital, he remembered that he had an old friend who is a Dr. at that very same hospital. He immediately reached out to him, asking him if he could somehow get my report in front of the eyes of the Neurologists there. So hubby's old friend pulled some strings and has a team of Neurologists lined up ready to review my case once I have my contrast MRI done (April 24th), and one of the team members just so happens to be Dr. George Jallo.
I am so very grateful for all the people who have helped to make sure I will be getting the best possible care during this challenging time.
" It's not what you know, it's who you know". I am so truly blessed to know so many loving and caring individuals who want nothing but the best for me.
I leave you now with some words from Dr. George Jallo himself, discussing some facts on Spinal Cord Tumors.
No comments:
Post a Comment