Getting a blood patch for CSF leak

July 12, 2018July 11, 2018 ~ msgracefulnot ~ 15 Comments

This is the last part of A very long walk.

For those of you who have been reading along and commenting…there is a happy ending and an even better future

The PLAN was that my dad would drive me in my van with the seat laid flat, and my mom would follow in their car. Decatur Memorial advised my local hospital that I would be arriving later that day and that I needed a BLOOD PATCH. They even printed all my records for me to take with me. Yah should be pretty simple right?!?

NOT EVEN A LITTLE BIT!!!!!!!

While we did make pretty good time getting there, ( a little over 4 hours) the hospital could not just admit me because I had declined the ambulance transport, instead they tried to seat me in the waiting room.

When you go to the Emergency Room, they take patients in the order of the severity of their injuries, I get that… Unfortunately a “headache” doesn’t rank very high on the list.

I don’t know if you have ever had the kind of headache that comes with a spinal fluid leak, but I promise you, it’s enough to make you think you are losing your mind. I still can’t quite explain it either.

Maybe kind of like the spins, after a night of too much drinking combined with someone smashing your head between two symbols while trying to speak to you in 3 different languages at the same time?

I really think I must have looked like I was losing my mind because I literally laid on the floor in the emergency room to try to stay horizontal. I’m really not a germaphob, but even I would draw the line at that normally.

I was frustrated, my parents were frustrated why couldn’t you just do this blood patch thing?!?!? I don’t remember all of the details that followed other than, I left and went home. Well my dad drove me home and they both stayed at my house with me.

I think some of the difficulty was that it was a holiday weekend. Another issue was that they were not sure where I was leaking cerebral spinal fluid from, and doubted the effectiveness of a blood patch if they didn’t find the right site.

Once the weekend was over, my mother was able to contact the neurosurgeon that had performed my thoracic laminectomy from a few years prior, and he said to bring me right into his office and he would do the blood patch immediately.

So what is a blood patch?

An epidural blood patch is an injection of your blood into the epidural space. The epidural space is not an injection into the spinal cord itself. The spinal cord and spinal nerves are in a “sack” containing clear fluid (cerebrospinal fluid). The area outside this “sack” is called the epidural space.

This is a great link explaining it in more detail. What is a blood patch?

I remember being terrified to stand up after the procedure. I had the doctor on one side of me and the nurse on the other, and I slowly stood up….. Nothing happened!!!!! My head DID NOT explode, there was no projectile vomiting!!! I was still sensitive to the light, but I could handle that. OMG it worked!!!! and almost immediately too!

After going home, I still continued to chug coffee and laid in bed for the next couple of days….just to be sure.

For the next month or so, I would continue to get migraine like headaches, but they were not positional and could be managed with medication.

While I thankfully no longer suffer from those headaches, I plagued myself with the fear of walking alone. When I walk in my house, I grab everything, walls, furniture, people. When I walk outside, I always have someone with me. What I did was to make myself a prisoner to my fear.

Prisoner no more

If you have been reading my blog posts for the last month, you know that I have been in a dark place both emotionally and physically. I don’t want to feel that way anymore!

So I started to force myself to “hit the road” again…. God let’s hope not… I mean walking again.

A long walk (part 3)

July 11, 2018October 5, 2018 ~ msgracefulnot ~ 19 Comments

This is a continuation of A long walk parts 1 and 2

When I woke up the next morning, I couldn’t stand the light…in any form.

Okay now I was getting really scared.

I asked Einstein to take me to the immediate care center. His license was suspended, and he refused to risk it, so I drove myself. Before I left though, I called my parents and told them what had been happening to me, just so someone else knew.

By the time I arrived at the office, my head was spinning again, my vision was blurry, and the nausea was overwhelming, so I just laid in the car for a few minutes. Even with the air conditioning on, the car was too hot to stay for long, so I forced myself to walk in the front door. I made it to the counter to register, uttered my name and collapsed on the floor. When I came to, I was in the emergency room at Decatur Memorial Hospital.

Thankfully I carry a sheet of paper in my wallet (right next to my driver’s license) with all of my medications, surgeries, doctor’s names, and emergency contacts on it. The hospital found the list, and had already called my parents. They were on their way down. The doctor was performing a spinal tap on me in the emergency room when my parents arrived. Several MRI’s were performed, the Lumbar puncture, and it was concluded that I had a CSF leak.

I was in the hospital in Decatur for a week, receiving a continuous supply of caffeine and sol-medrol via iv. I didn’t feel like it was helping at all, in fact pumping that amount of stimulants in my body while telling me I had to lay completely flat was making me homicidal. The hospital listed me as a fall risk (no surprise there) and set alarms on my bed to prevent me from getting up to use the bathroom on my own. After wetting the bed a few times while waiting for assistance, I suggested that they put a foley catheter in instead. They didn’t. Instead they put a ‘GPS tracker’ on me.

I was livid! So much so that I really began to show my ass. I informed them that I was leaving their backwoods, no brain hospital, and going home to where doctors actually had some brains. (I didn’t know how I was actually going to do it, but I was leaving)

In fact, just to show them they couldn’t “hold me”

I slipped the tracker off my wrist without breaking the band and threw it at the nurse when she finally came in to respond to another alarm I had set off.

Yes I CAN be quite the asshole, when I feel trapped. and NO, I am not proud of that, but it is true.

The hospital began trying to arrange an ambulance transport back to Chicago…. like insurance was going to cover that…. No no, just sign my discharge papers and I will be on my way.

I called my neurologist in Chicago, and he asked, “Why don’t they just do a blood patch?” I responded, “because they are idiots”. (not that I knew what a blood patch was either or where I could “pick one up”)

I would soon find out……

A long walk (part 2)

July 10, 2018October 5, 2018 ~ msgracefulnot ~ 17 Comments

Part 2 of A long walk

So there I lay on the floor in my kitchen. Apparently I was able to call my daughter’s name before I collapsed. When I “came to”, she was crying, yelling my name, and attempting to clean up the blood on my face and legs. She told me she had called 911 and asked me what had happened.

The paramedics arrived quickly and suggested that I let them take me to the hospital. NO!!!!!! This was not my first rodeo, and besides that how would I get home and who would stay with my daughter? After passing their “awareness tests”: “What day is today? What’s your name? Where are you? Who is the president?”, they gave me a list of symptoms to watch out for and left.

I let Thing Two put a contraption like this on my face/head for a few days, and I slept ALOT. ( being woken up by someone every couple of hours as the paramedics recommended) After about a week, I was left with remnants of a black eye, the swelling of my chin in the above picture and a bit of road rash on my hands and knee.

I tried to begin walking again after a couple of weeks, but I couldn’t bring myself to leave the house on foot. I was terrified that I would fall again and wouldn’t be able to make it back up. My neighbors and my kids had done enough “babysitting” ,and I didn’t want to be a burden any longer. I found myself on Amazon ordering a complete set of protection gear including hand/wrist guards and knee and elbow pads, but it would take a couple days to arrive.

Time for a road trip

Thing two went to stay with a friend for a couple days, and I hired someone to dog sit for the weekend. As I was making the 3 hour drive to Einstein’s current house, I started to get a headache. I popped a couple advil and continued on my way. (Advil tablets are a permanent staple in my purse, along with bandaids, xanax etc)

When I arrived at Einstein’s I immediately went to lay down and fell asleep quickly. My MS Bladder woke me up after about an hour and I tried to sit up. TRIED being the operative word. My head felt like it was going to explode, and I quickly laid back down. What the fuck was that?!?!?!?

After lying there for a few moments, the pain in my head disappeared and my bladder started screaming again. Once more I tried to sit up. This time my head did explode in the form of projectile vomiting. I managed to crawl into the bathroom, empty my bladder, and slept on the floor for the next few hours.

When I woke up, I cleaned myself and the mess up and crawled back into bed, where I stayed for the next two days.

What the fuck kind of ‘flu’ is this? Why did my head want to blow up everytime I sat up, and then the pain go away almost as soon as I laid back down? How was I going to get back home?

to be continued……