In Their Own Words – George Florea

I was diagnosed with TM on October 12, 2013. I am hoping to learn more about this disease from others affected by it directly and indirectly (family coping is a big part of what I want to learn more about, to help my family and friends along the way as they support me). A little bit about me – my name is George and I am 36, married with three lovely daughters. I’ve always had a positive outlook on life and would self-categorize myself as a complete optimist. Even at times when I shouldn’t have been, I was. I really enjoy people and look forward to communicating, absorbing and understanding different perspectives, life experiences and cultures. Professionally, I work for an IT company and help lead a group of tremendously smart and passionate people toward delivering hosted & managed IT services. I love what I do, it’s part of who I am and I especially love the people I work with. I was raised by my mother in a single parent home and have a twin brother (fraternal). People say I’m verbose and should often cut to the chase, but I process multiple layers of detail. It’s just who I am. I will however fast track through what led up to joining this group with enough information to help appropriately share my story.

This really goes back about two months ago in what started as mild lower back discomfort. I eventually went to the doctor’s office and was prescribed muscle relaxers along with a 5-day steroid pack (10mg). After a week and no real changes, I went back to the doctor. Upon my second visit, I had also developed some numbness on the left side of my left foot (tingling primarily). The doctor suggested I explore outpatient physical therapy as well as get an MRI, just to get a better look under the hood. I started the physical therapy (at this point I am 3 weeks into the evolution of this) doing several sessions a week. The back pain subsided, but the numbness continued to move up my left foot, then lower leg and eventually the right foot started to feel some numbness also. Never anything but numbness, no pain at any point. I went back to the doctor and told him I needed to see a back specialist. He put me in touch with a reputable one in the area. I went to see the back specialist with my MRI in hand. Within minutes the back specialist was able to tell me that there was some “cloudiness” in my spinal sac. He ruled out any inflammatory disc or other routine swelling and then presented the possibility of MS. Naturally, this was devastating. He instructed me to start an entire new set of MRI’s (full spine, brain with and without contrast), which I was able to get done within 24 hours of seeing him. Upon my follow up visit with him, he indicated the brain appeared clean and healthy, but he still could not zero in on the “cloudiness of the spine”. My condition continued to worsen. At this point I had numbness in both legs, and it was slowly traveling upward through the groin area. The back specialist referred me to a brain surgeon in the area.

I saw the brain specialist a few days later. He too was rather stumped and thought MS was likely; but it didn’t present in the classical fashion (again, the brain was completely clean). At that point and considering I’d been going through this for what was 5 weeks, I asked him to point me in the direction of the best neurology hospital in our area. Hands down the decision was made to go to Northwestern Memorial Hospital, Chicago (ranked 7th nationally for their neurology practice).

I checked myself into the ER on Sept 27th (having walked in on my own accord with no assistance). After a dozen MRI/MRA’s, several CAT scans, blood tests and spinal taps, they suspected a Dural AV Fistula (basically a stroke in the spine that bleeds into the spine causing the “cloudiness” which created the conditions I was experiencing). The explanation was that the spinal cord was high value real estate with no free parking and the added blood in there was displacing nerve matter, creating the swelling and my mobility and sensation issues of the lower extremities.

Reasonably, I was completely bought in and was beyond happy that we had some direction after all of the testing. The NMH team scheduled an angiogram to explore the vessel network feeding the spine and identify the anomaly, laser it and start the path to remediation. After having gone through this lengthy procedure under anesthesia, I awoke to news that they did not find what they were looking for and all looked normal. At this point, the diagnosis indicated I should start seeing improvement and physical therapy was the next step. The NMH team explained to me that in some cases these anomalies clot themselves and that is what they suspected happened in my case. I was released from the hospital on October 3^rd, with a handshake and a smile.

The following morning, I received a call from NMH asking that I come back in ASAP to perform another angiogram of a “suspicious area”. Naturally, I was all over this in the event something was overlooked. I scheduled the second angiogram for October 7th. Between Oct 4^th and 7^th, my condition deteriorated massively. I was walking with a cane, but the ability to take any step required massive concentration, my mechanics were completely off and my balance was almost nonexistent. I was convinced the bleeding they had suspected “self-corrected” did not, and I couldn’t wait to get back in to finally identify and resolve this issue. On Oct 7th, the day of the second appointment, my wife drove me down to the hospital and I actually asked that she use a wheelchair to transport me into the appointment. The gravity of the situation had escalated to an entirely new level as I could barely feel that I was placing weight on my legs; they were literally like jello. After the second angiogram, I again received the same news that nothing was found. At this point, I told the doctor I need to be readmitted into the hospital, as the diagnosis they suspected is not the case. If it were, I would be just the same or possibly even getting better with time, not quickly declining as I had been. He agreed and I was admitted and started with a whole new series of tests.

On Oct 12^th, I was diagnosed with TM and an aggressive steroid cycle began (1 gram IV for 5 days). This did not help in any capacity. By this point I had zero lower torso mobility, wiggling my toes wasn’t even possible. I required lifts/cranes to be moved from bed/chair/toilet. This was obviously devastating for my family and me, but I kept as positive an attitude as possible. My solace was the fact that I’d been tested for every other disease, cancer and such and everything had come back clean. I was breathing, my mind was well and my upper body had no issues. I knew I was in a good place and the only evolution was to an even better place. I mentally accepted that a chariot might be a permanent fixture for the next part of my life. The focus was on understanding how to make the best of it. After NMH did all they thought they could do, the next step (pun intended) was to move to rehabilitation and determine how much, if any, of the lower body I could reclaim. I chose Marianjoy in Wheaton, IL as opposed to Rehabilitation Institute of Chicago (RIC). Although RIC is rated as the number one Physical Therapy facility in the country, I just needed to get out of the concrete jungle and actually get some place where I could see some trees and breathe fresh air. The likelihood of having trips outside seemed a like a clearer reality at Marianjoy. Also, I heard fantastic things about them. On Oct 14^th, I landed at Marianjoy and in the last week have really seen massive progress. I actually started moving my left foot, and can lightly swing that leg. This is GIGANTIC progress in a matter of days. At this pace, I may buy a left footed tap dancing shoe and put on a one-foot show! The right limb isn’t progressing as quickly, but I am able to perform mild ankle pumps and see some signs of improvement. I am doing about 3.5 hours of therapy a day (strength training, OT/PT and other group sessions). The people here are top notch and besides knowing their profession, they just whole-heartedly care. When you mix knowledge with compassion, it creates for a powerful experience. I am by no means out of the woods here, but my trajectory looks good and I know I can control if not altogether conquered this. I’m looking to share my progress as it continues, and network with others who are going through or have battled this ailment. I feel that with the right amount of time, hard work and my faith, I will overcome this. My double chin is up high and I really have a whistle in my heart – that along with the support of my family, friends and this ridiculous staff at Marianjoy makes for one intense core. The first step is completely up to me and everything else is in God’s hands.

~ George Florea