Connections and a Second Opinion

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

Division of Pediatric Neurosurgery

Johns Hopkins Hospital

600 N Wolfe Street, Phipps 556

Baltimore, Maryland 21287

gjallo1@jhmi.edu

(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.)

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. 

 https://www.youtube.com/watch?v=iZf8XCcJsLc

-Eileen

" It smells like health" and the Naturopath

Coincidentally enough or because all things align at the appropriate time, about a week after my diagnosis a co-worker of my husbands came up to him and started telling him about a farmer in Stouffville ( the town I'm from which is not too far from Toronto) who grows wheatgrass, his co-worker had no idea what was going on with me, as my husband still hadn't told many people at his work. My husband had no idea what wheatgrass was and didn't know anything about its benefits. He did some research and thought "wow, this is exactly what my wife needs right now". For those of you who don't know anything about wheatgrass ( don't worry I didn't either) here is a link to all the amazing benefits it has to offer . . .

http://hippocratesinst.org/wheatgrass/benefits-of-wheatgrass ,

 and here is another link to the farm where we buy our wheatgrass -

http://www.dynamicgreens.com/.

I drink wheatgrass everyday now, probably 3-5 times a day. The main selling point that caught my attention was that it is known to shrink tumors and fight cancer cells. If by some miracle my tumor shrinks, I'm giving credit to the wheatgrass, and to all of those who have been praying for me. Wheatgrass is AMAZING! The first time I tried it, it honestly tasted like someone mowed the lawn in my mouth, so if you like the smell of fresh cut grass then this drink is for you. After a few days of drinking this stuff, I was feeling great, I had more energy, wasn't so tired, had an overall sense of well-being. My body actually craves it now and I love the taste of it. You know that 'healthy feeling' you get when you're eating vegetables or a nice fresh salad, it's like that feeling, but way better! I love it and recommend it to everyone. Even if it doesn't shrink my tumor, it is helping my body prep for my surgery and recovery. We had some friends over this past weekend and one of our friends smelled my wheatgrass juice and he said " it smells like health", which is the perfect description for it, I swear it's the 'fountain of youth' in a grass! Hubby and I are thinking of growing some of our own. I'll keep you all posted on how that goes.

So I started to see a Naturopath. I have mixed feeling about this Dr. My first visit was amazing, she really seemed to be in-tuned with me, very empathetic about what was going on, and very caring overall My session with her was pretty straight forward. I had to answer a ton of questions, one of which included what my goal was in regards to my tumor, I told her my ultimate goal would be for my tumor to shrink and not to have the surgery ( Dream Big right!?). So she recommended me to visualize my tumor shrinking, she told me to continue to drink the wheatgrass and she gave me a homeopathic remedy called Lymphadiaral which is supposed to help with the lymphatic system, she's hoping that this could perhaps naturally drain the cysts that are above and below the tumor. I'm not sure if this remedy is working on the cysts but I have had swollen lymph nodes for quite some time now and the swelling has definitely gone down - so that's a big plus! I left my first session feeling great and with high hopes! I did my homework and filled out my food journal that she recommended for an entire week and then went back for a follow-up. When I went back for my follow up visit I didn't have the same vibe that I got the first time around - My second visit with the Dr. felt as if she was just looking for anything else that could be wrong with me, nothing that had to do with my tumor. I felt like she was just trying to sell me all of her products and since I was in such a vulnerable state of mind that I would buy anything that she recommended to me. "even if it doesn't help, it won't hurt to try it" is pretty much what she was saying about every remedy that she laid out on the table. She even tried to tell me that my husband and I can't afford to get sick so she was sticking another remedy in my face trying to sell that on me. For those of you who know me, know that I hardly ever get sick, my whole family can have the stomach flu and I will not get it, I just don't get sick - I have no time for that. Anyways, once I started denying the products that she was trying to sell me, I could sense that our bond was dwindling. I have one more appointment with this lady at the end of the month so I'll give it another go, but if I feel like I'm just being taken advantage of then I'll probably stop going.
Anyways, this was just kind of a rant post with no real emotion put into it. I really just wanted to rant and rave about wheatgrass and how I think you should all try it!

Keep in mind that April 10th is Ependymoma Awareness Day, please help raise awareness.

-Eileen

"Google it"

Contrary to the advice from my friends and family, I Dr. Googled.  (Dr. Google: term for using google as a medical resource ... usually resulting in incorrect self diagnosis and unnecessary anxiety.)  After finding out I had an Ependymoma I probably stayed up till at least midnight researching this type of tumor.
Majority of the sites repeated themselves, and this is what most of them said:

• a rare type of primary brain ( children) or spinal (adults) cord tumor  that starts in the Central Nervous System. 
• much more rare than brain tumours
• most common symptom is generalized  back pain and neck pain
• there are three locations of ependymomas -
• extradural (55%). - between the vertebrae and the spinal cord (risky). 
• intradural-extramedullary(40%)  - within the outer layers of the spinal cord but not inside it (high risk)  and
• intramedullary (5%) - inside the spinal cord (very high risk).
• most people aren't diagnosed until they start to lose motor control (an interesting fact that I came across a few times was that people with it high in their cervical spine are usually first diagnosed with carpel tunnel syndrome - I've notice from time to time that I will get pains in my left wrist, but  when it (i.e the pain) does happen I have always blamed it on the fact that I am left handed)
• details of the surgical procedure ... you can even watch it on YouTube - but it is not for the weak of stomach so don't say I didn't warn you. 

I went on to read that these Ependymoma tumors are the most common type of brain tumor in children. About one-third of pediatric brain tumors are diagnosed in children under the age of three. 

That hit me in the soft spot- HARD! As most of you know I have four children, I could not even begin to imagine any of my children having any serious medical disease, let alone a brain tumor, my eyes well up just thinking about it. For the record an Ependymoma is not genetic, so the chance of  any of my chldren having this tumor is extremely slim. If anyone in our family was meant to get this disease  I am glad It was me and not one of them. I am sure parents of the helpless children who fall victim to Ependymoma's probably wish they could have the tumor instead of their sweet angel child. 

I went on to discover the CERN Foundation ( Collaberative Ependymoma research network), A network dedicated to nothing but the research and awareness of Ependymoma's. 

As I navigated my way around their page I learned that there will be an International Ependymoma Awareness day on April 10th 2014. 

According to their website, the “CERN Foundation will commemorate Ependymoma Awareness Day with a mass butterfly release that will take place during the semi-annual CERN investigator meeting on April 10, 2014…The butterfly release will be streamed on the internet so that supporters around the world can participate and share in this event “.

I was in awe when I discovered that the symbol for an Ependymoma was a butterfly, I am pretty sure I even started to cry when I found out. And this is why:

 I have been planning on getting a butterfly tattoo for quite some time now, but wanted to wait until I was done having children. To me the symbolic meaning is : the purpose of  the life of every butterfly is to set everything that was once known aside and to embrace an entire new way of being. 

If this isn't a sign for me to have faith, than I don't know what is!?

This is the tattoo that I have always wanted, and will most definitely be getting once this journey is over, especially now that it has even more significance and meaning behind it. 

So of course I went ahead and I bought a butterfly which will be released by people from all across the globe that have been affected by an Ependymoma. I will most definitely be watching the release online, and so should you! 

For more information on where you can purchase your butterfly visit the CERN website. 

https://cern-foundation.org/?page_id=4882

Hopefully this video will make you want to buy a butterfly and support ependymoma research. https://www.youtube.com/watch?v=Wnkz5H3jrhY#t=61

I hope from this day forward whenever you see a butterfly, you think of me and my family, and all the other families that are and will be affected by an Ependymoma.

-Eileen