Vanessa Roger's Journey to Walk Again

Update #2 : 1 week out of hospital.
I don't think anyone realizes how bad this is/has gotten/could get.
My recovery process hasnt been improving like I had thought or hoped. The way I responded to the treatments so fast was shocking to everyone. I had assumed my recovery would continue with that momentum. But unfortunately it has not. These past 2 weeks have been an absolute mind f**k. No one can diagnose what this is/could be. I just wait. Any little thing that happens im questioning it, analyzing every weakness, every pain, everything. Wondering If I should go back to emerge? Do I wait it out? Give the 5 week treatment time to work? Or am I having the symptoms of needing surgery? It's up and down. And different. I feel stronger than when i went to UofA but I'm having loss of sensation or different sensation (eg. burning feet/numbness all the way up to my torso/road rash feeling on my hamstrings/ice cold feet/can't feel my feet/mobility problems ect) So idk if I wait until it it gets worse to go under the knife? Or call and get it booked now? Why. What. When. Who. Where. It's been a lot. And at the same time I'm trying to only do so much and not exhaust myself cuz if it is Guillain Barré Syndrome, that's one of the biggest things that can progress it. I've also been getting my affairs in order as if I will be going into surgery. This whole experience has me at my breaking point, breaking down on the regular. The neuropathy is so scary. They were the symptoms that sent me to Emerge in 2022. But my mom recently read that neuropathy could also be a sign of your nerves healing. So I'm staying hydrated by guzzling Electrolytes and trying to stay positive. Today was an ok day. Hopefully tomorrow will be better.

Update:
Before the treatments started I had zero reflexes and I could barely move my legs, let alone form any kind of resistance. I couldn't stand to undress to use the washroom. After the 1st treatment of IGIV I felt so much stronger. I was able to stand up.
I was able to walk with my arm crutches out of the room and down the hall and back. After the 2nd treatment, I had my physio session where I was able to do more walking and climb stairs. As the treatments continued I developed more strength and more movements during my assessments... Which left everyone baffled and shocked. This treatment does not work this fast. Sometimes day, three or day five you can start to show improvement, and as the medicine stays in your system, you continue to show improvement over the next 5-7 weeks.... But I was regaining mobility that I didn't have 1 to 2 months before this after my 2nd treatment! So the team of 10 specialists plus physios all agreed that I would be discharged and if I showed any symptoms of thoracic trauma I could contact them directly and be booked in for surgery immediately. Because we still don't know what this is/was. There's so many questions. Is/was this GSB? How did the IVIG work so quickly? Could this be a spinal compression still? Could it be both? Could I have something entirely different that the IVIG treatment fixed but at present is unknown?

I have been home for a full day today and I'm absolutely exhausted, after doing the bare minimum. Could it be because I was laying in a hospital bed for 7 days? Or will I end up needing the surgery? I'm being closely monitored by the doctors, family, and of course myself. But the not knowing is the worst part. And I'm trying to relax as much as possible.

IVIG Treatments
Last one.....

I've been in UofA Emerge since Sunday.
Saturday I started losing mobility and it was very hard to take steps. I thought maybe I had overworked myself so I had hoped a good night's sleep would help. But Sunday morning I wasn't any better and i started getting numbness in my feet and pins and needles feeling.... that started climbing up my legs. This is similar to what happened in 2022. Loss of mobility. Loss of feeling.
I had an emergency MRI and was assessed by 7 spinal doctors and neurologists. My MRI scans don't match my symptoms so it's stumped them. They did a lower lumbar tap and tested the fluid. They also issued a second emergency MRI and a nerve conduction test.
The 2nd MRI didn't give any affirmative diagnosis. I have compression on my spinal cord at T10, however the nerves aren't compressed enough for me to have the symptoms I'm having. I have enlarged nerves at the base of my spine but they arent inflamed and didnt aborb the dye that would be consistent with the other Diagnosis they are contemplating : GBS: Gillian Barre Syndrome. My protein levels in my spinal fluid weren't high enough to make this diagnosis conclusive. However, that doesn't mean I don't have it. It could mean they caught it soon enough for the protein levels not to have spiked yet.
On Wednesday they continued to do more testing, and the 8th spinal doctor said that I should I have the IVIG treatment for the GBS, and if that doesn't work, then I would need the open spinal surgery to decompress the T10 vertebrae from my spinal cord.B The neurologists did testing on my body for reflex responses, and there were 0 in my lower extremities and upper extremities, so that is a clear symptom of GBS and I started IVIG treatment for it right away.
There will be a total of 5 IVIG treatments. The last one will be on Sunday. I had the nerve conduction testing, where i saw 2 more specialists, which also was inconclusive, but pointed more towards spinal cord injury than GBS. And... in a weird twist of fate.... it could possibly be both.
So now we wait
Paralysis AGAIN
Learning how to walk AGAIN

You know the funny thing is.... people keep saying "they should make a movie about you" "they should write a book about you".... and I kept saying "I feel like my story isn't finished tho. Like something else is going to happen". Well idk maybe this is it.

My goal has been to attend to attend Aquafit more than just once a week. Strive for every day. And my increase in mobility has been so wonderful!
I'm walking around the house without a cane or walker, just wall and furniture surfing... getting off the ground easier... walking up the stairs without leaning against the wall... was able to take 2 steps independently... This was all in less than a MONTH of making my commitment to Aquasize!!!!

I have so much more range of motion in the water PLUS the water creates a resistance at the same time. So it's harder, yet easier, at the same time! I wish I would've been doing water therapy this whole time! I wish the physical therapists at the Glenrose would've stressed this therapy and to be consistent with it! I've been preaching to everyone how amazing it is and letting anyone know they are welcome to join me!!!
SO
FREAKING
EXCITED
FOR
WHAT'S
TO
COME

So how's my recovery going?
Well a month ago I woke up and my right leg/foot was "asleep " knee down and did not wake up. Back to Emergency I went. Waited hours for doctors to assess and order an MRI. While waiting for the MRI I had an appointment with my Spinal Cord doctor at the Glenrose for my 6 month reassessment. He was severely concerned and called radiology to not only order a full imaging of my spine but also my sacrum and cuada equina. They said no and to just see what this ordered MRI revealed, but at least it was Sped up to October 25th 💁🏼‍♀️. It showed nothing, which was good meaning my spinal cord was ok and no emergency decompression surgery again 🙌. So now another urgent MRI was ordered for my sacrum and cuada equina. Which was today. They were very behind because of so many emergencies that came in today. While getting an MRI it BROKE! Yup... thats right BROKE. So I had to wait until another one was available to finish my MRI. We left home at 3:30. Four hours later....
Just my luck hey? Well stay tuned to find out if this MRI discovers anything and if it can be fixed 🙏🏼