And The Surgeon Says???

Guess what? It's a boy! His name is Horatio and although we don't have a weight yet he measures in at an astonishing 55.9mm x 43.4mm. He's big! He's playing shy and he's a stubborn one just like his Mom and he isn't ready to come out yet!

Anyways, I met with my Surgeon today and obviously I am at home at the moment. We reviewed the MRI together and I have to say that I was and still am in shock of the size of this thing. It literally takes up what looks like at least a quarter of my brain. My Surgeon said he doesn't know what it is, so yes I am an enigma. Imagine my sheer frustration when I heard the words uttered from his mouth, "I don't know what it is." And he knew it, I kind of huffed and said, "I'm sorry but you can imagine my frustration when that's all we've been hearing." He said that he wanted to consult some other Surgeons to get their opinions on the MRI before he proceeds because he isn't a "rush to surgery" kind of Dr. Fair enough, and quite frankly I appreciate that! So the Good, The Bad and the Ugly Truth is below.


The Good: He said that since the MRI didn't pick up any of the contrast dye (which highlights cancer cells) and because of the size of the lesion if it were cancerous I'd probably be a lot worse off physically than I am and producing worse symptoms. But of course they can't say definately that it isn't either. Now he referrenced it as a lesion because they just aren't sure of what it is. He said it could by Cystic which just means it's a cyst, but again they don't know. He said looking at the MRI one could easily assume it's cystic by how it is showing up highlighted totally white on the MRI as though it's all fluid, however having done as many surgeries as he has he said he's learned that oftentimes when you think it's cystic and you get in there you are wrong.

The Bad: Horatio (as we've so unlovingly named him) is freaking HUGE. We just had to name him so I had something to curse out when I needed to:) My God I was and still am in shock after seeing it on the MRI. Further to that, the lesion is deeper than they first thought which is another reason they are not going to rush into surgery. He explained that obviously the deeper it is in the brain the harder it is to get at everything that needs to be removed and the more issues you can run into in the end in regards to problems during and after surgery. Horatio really is a big ugly nasty univited house guest that I want evicted.

The Ugly Truth: The Surgeon placed me on Seizure Medication for the seizures I've been having and whatever this freaking thing is it has to come out. My Surgeon is away next week but said his office will call me the following Monday with an appointment for a Biopsy, he said depending on what he finds after reviewing the images further with his colleagues that they may operate at that time. He also said that he would need to do the Biopsy with me totally knocked out because of where the lesion is located. To give you an idea of how large this sucker is, read below.

The average Adult Brain measures 140mm in width by 167mm in length. And Horatio measures 43.4mm in width by 55.9mm in length, he's pretty much occupying a good chunk of real estate in my Right Temporal Lobe. Nasty squatter!

I'm very frustrated that I still have no difinitive answers. I feel like I'm in a very bad nightmare and can't wake up from it, and as you can imagine this is all emotionally taxing. I also feel like a Medical Enigma that no one can figure out! Anyways, we are pretty much exactly where we've been all along. Very little info, no difinitive answers and a hell of a lot more waiting. I will update this blog as I get more answers, you know other than, "We don't know what it is!"

And we finally have a date! Sort of LOL

Here are the details: Tomorrow (Thursday) at 12 noon I have a consultation with my NeuroSurgeon at the Hamilton General. There is a possibility that I could be admitted at that time but after reviewing my chart the woman that I spoke with said it's more likely that I'll be short listed for surgery within the next 2-4 days. At least I finally have some information on what's going on and things are moving ahead.

To let you all know

To clear up any confusion the Drs do have some idea that my tumor could be a Ganglioma which is the reason they want it out A.S.A.P. since Gangliomas attach themselves to the nervous system. If there is any good news to come out of this, according to my research if it is a Ganglioma they are usually Benign, recovery rate is high and the recurrance rate is low.

Have I said yet that I hate waiting? lol

Surgery so soon, this really sucks!

I went to my Drs Friday morning and the results of the MRI are inconclusive. I was told they can't get a good idea of what they are dealing with other than it's a tumour. So I am on standby to go to Hamilton General (out of town Hospital for those that aren't familiar with the area) to get it removed within the next few days. He said the Surgeon will call me with an immediate appointment for a biopsy and to expect to be admitted right away to get it removed. He said that instead of doing a biopsy one day and coming back another day to remove the tumour that they would probably do the removal and biopsy of the removed tumour in the same shot. He figures that whatever the tumour is (malignant or benign) it needs to be removed due to the fact that it's effecting me physically already and why put myself through anymore potential health issues. So they will just remove it.

My MRI listed the little culprit as a suspected Ganglioglioma. From what I was told and from what I have researched that is a tumour that decided to embed itself in the central nervous system. That's right folks, when I do something I do it well! lol Anyways, I have my Hospital bag packed and ready to go when they call but I'll be honest, I'm not too happy about all of this.

I'm trying to stay positive as is my Hubby and those around me, but today was hard. I knew it was more than likely a tumour and I knew it would have to be removed which again isn't something I'm happy about. BUT, what I wasn't prepared for when I went in this morning was the prospect of undergoing major surgery by Monday Morning. It's a lot to take in within a short amount of time with no real time to prepare, especially emotionally. But we are rolling with the punches. It's an hr to hr state we are living in at the moment and another waiting game. This time it's for the Surgeon to call and tell us when to come.

Waiting is the hardest thing

I get my results of my MRI on Friday, really I get my results in less than 26 hrs but it's driving me crazy waiting for them. I am constantly trying to disect my thoughts/feelings and can't come up with too much lol I mean whatever the Dr says on Friday it doesn't change much really does it? I know I have a mass on my Brain that needs to be removed and that will still be the case on Friday. Right now though the mass is an entity, and I just want to know exactly what I'm dealing with. Soon. I will know soon.

And now we wait

My MRI is done and I will get the results on Friday of my test. So now we wait some more:)

Drs, MRI, Results, oh my!

So it's Sunday and tomorrow I have an appointment with my Dr. I think though he expected my MRI to be done by now and able to review the results with me but I also know he wants me in either weekly or bi-weekly to go over any new symptoms I might be having. Thankfully this week I haven't had any new symptoms and I haven't had a Seizure since Tuesday but there is no rhyme or reason as to when I have them. I can go a week without one and then they come in waves where I will have 6-10 of them within a few days. We don't have a follow up date for my results yet but I will book one tomorrow for sometime this week.

So to sum up what's happening this week for us:

Monday September 20: Drs appointment
Tuesday September 21: MRI
????? September ???: Followup for results.

How it all started

For those of you who are interested in knowing how I ended up where I am today with a mass on my brain, read on.

About 5-6 weeks ago I was laying in bed just waking up and I experienced what only can be described as a "Deja Vu" experience. I was recalling things that happened the previous day and as that was happening I started to smell a very chemical like smell that felt like it was stuck in my nostrils. Wondering what the heck was happening I than started feeling what felt like a hot liquid moving around in the right side of my chest. It seemed very odd and passed within a matter of about 30 seconds, and while I was disturbed by what happened I didn't think much of it.

The next day I was out with my Mom to wheel her around to her Appointments and the same episodes happened 2 times while at her Hairdressers and 1 time while shopping so I called my Husband and tried to explain what was going on and he said it sounds Neurological. When I came home I decided to consult my good ole friends at WebMD.com and also just started searching my symptoms on the Internet and what I was experiencing seemed to narrow down to Seizures/Epilepsy or something going off in my brain and of course I start to panic so I decided to call TeleHealth. They informed me to see a DR within 3 hrs or immediately if I have another episode or they get worse. Well I ended up having another one but going to Prompt Care instead of the ER.
I'll skip the long story of my Prompt Care experience but I will say that I left there feeling crazy like everything was in my head. The Dr there essentially told me there is nothing he could do for me and sent me on my way.

My Prompt Care experience was on a Saturday night and on that Monday morning I went to my Dr who ordered an EEG and a CatScan. My CatScan showed a Mass on my Front Right Temporal Lobe that measures 5.4cm x 4.5cm which is a bit bigger than a Golf Ball. My Dr said that I would need an MRI to determine exactly what the mass is but whatever it is does need to come out. Once the results are back from the MRI I will meet with a NeuroSurgeon to discuss the next step. And my "episodes" have indeed been Seizures. They are actually "Silent Seizures" due to the mass on my brain, now my Seizures haven't manifested themselves Physically thankfully and seem to be more sensory but they are still frightening all the same.

I have an MRI scheduled for Tuesday September 21 in St.Catharines and I'm going crazy waiting for the appointment. My Dr has said that because my Seizures are becoming more frequent and more intense that I am not allowed to be alone, I'm not suppose to Climb anything and I can't have any Alcohol as it will only make the Seizures worse. So I suppose as long as I don't wander off alone and climb a tree with a bottle of Tequila I should be ok:)


I will update this blog when I get my results. Here's hoping for the best.

All the medical info

I've had this blog for a bit and it was usually just my ramblings about life, celebs, etc however I decided to blog about what I am now calling, "My Medical Journey". If you are here at my Blog it's safe to assume you know what is going on in my life Medically at the moment, however I figure that there are many people who have asked what has happened, how I've ended up where I have and are interested in keeping in the loop of my tests/results and the next steps in my journey that I will keep this blog up to date with everything going on. This way it's all in one place for you to read at your convienance and also so I don't blow up facebook or twitter with my constant updates lol If you have any questions about things you all know you can Call me, Text me, Email me, Message me here it's all good.