Wednesday, March 17, 2010

So What Happened To Me? Part 2

Goodness, I did not think it would be a month before I continued. To be honest, this is really difficult for me. Going back over the details and reliving what happened......just so hard. But I think this will potentially help others and in the end, be cathartic for me, so here we go again.

To read Part 1, click the link:

Part 1

I had been having this “RBP” – Random Butt Pain – for about 4 months and my family doctor had no idea what was wrong. Of course, every time I went to see her, I had this huge smile on my face. As friends and family will attest, Cheri ALWAYS presents with a huge smile. It makes it difficult for medical professionals to assess how I am really doing, because while I am stating how horrible the pain is, how my leg keeps going out and I’m falling, I’m glowing with this huge smile. Anyone else do this? I’ve tried wearing no makeup, thinking of something I am angry about, anything to wipe that smile off my face! Sigh…..

My pain had started out in just honestly the center of my buttock, but as the weeks wore on, the pain started radiating down my thighs. When it got to my feet, I knew it was worsening. Sometimes it ached constantly, but I would get what I call "lightening strikes" that shoot through my body, from buttock down and out my toes. These "strikes" can knock me off my feet. I cannot find the words to describe these pains. I do get these occasionally to this day. And I live in fear of them, honestly. Was it just sciatica?

My doctor finally sent me to physical therapy to see if that would help the pain. In less than 5 minutes, the therapist told me she was certain I had a blown disc, most likely at L5-S1. I was incredulous that I did NOT have a back problem! Never had back pain. I had a BUTT muscle problem, darn it! A quickly ordered MRI showed a massively herniated disc at L5-S1. This meant that a major portion of the disc material at that level has protruded out into the vertebral space where it is NOT supposed to be. This can not only put pressure on adjacent nerves but can cause chemical changes to the nerves. This damage to the nerves can be temporary or permanent.

First order of business was 2 epidural steroid injections (also known as ESI), which is where steroids are injected into the problem area to help relieve inflammation getting the disc off the nerves. For me, there was no relief.

At this point, an orthopedic surgeon recommended a laminectomy/discectomy – a minimally invasive procedure where a small part of the lamina is removed to access the disc, and the excess protruding disc is cut away.

This link does an excellent job of explaining the procedure with diagrams.

This is intended to relieve pressure on the nerves. I had heard so many horror stories about one back surgery leading to multiple back surgeries and I wanted to wait and to be honest, I was honestly in denial at this point. I made it a few more weeks, until one day, I was almost fainting from the pain. I was training agents again and I just could not fake it anymore. At this point, at the end of my training sessions, my husband would meet me to pack up everything entirely for me. He was no longer letting me drive as my leg was not reliable and might go out at any moment. As soon as the last student left, I would immediately hit the floor. Andy finally begged me to get the surgery as it was killing him to see me in this much pain, knowing my pain tolerance.

I went in for this surgery in December, 2005, with a highly recommended orthopedic surgeon. When facing this type of surgery, you either choose an orthopedic surgeon or a neurosurgeon. -I believed I was in capable hands. According to the after surgery update that Andy received from the surgeon, that MRI had not shown my damage clearly. He told Andy I had one of the most squashed nerves he had EVER operated on and frankly did not know how I had been walking. He said the nerve was completely flat and should have had functional issues as well as pain. (This explained the leg giving out all the time!) The surgeon hoped my nerves would heal. As it would turn out, they did not.

Unavoidably, a month later in January, my husband moved to another state with a new job. This decision was made assuming my back was fine and I would be back to normal soon. The plan was for the boys and I to follow at Spring Break in March. That was not to be. By the middle of February, I was a mess. After being disabled with a horrid case of vertigo lasting 2 weeks, my family doc sent to physical therapy again to be evaluated. Thankfully, the PT office was able to “cure” the vertigo, but recommended I then have some exercises done to assess my balance (or lack of).This is where my life took a turn for the worst.

The therapist had me doing different things and at one point, had me sit on what I call a Fit Ball.

She asked me to sit and rotate my hips around and around and see if I could maintain my balance. REPEATEDLY I asked her if I should be doing this, as I just had surgery a month ago. She told me I was fine every time I asked. Since this did not hurt, I trusted her. The next morning, I could not get out of bed. FIRE shot through my legs. I was panicked and had no idea what to do. A few days later when I was up and functioning again, I went to the original surgeon for another visit. He ordered another MRI and sure enough – I was not only massively herniated AGAIN but this time I had what is called an EXTRUDED/SEQUESTRATED disc, where disc material has broken loose and is floating around in the spinal fluid. This was a disaster.

While deciding what to do about this on whether I should have surgery before I moved, I ended up with several trips to the ER in unbelievable pain. Our oldest son Ryan, then 16, was the “man” in charge and took me to the ER each time. My best friend Amy would meet us there and take over with me and the docs. There wasn’t anything anyone could do besides medicate for the pain since surgery was needed. One night, I was given WAY too much medication but it was not obvious until after Amy went home for the night. God was looking out for me that night, as I feel asleep sitting up, because at some point, I vomited in my mouth. Had I been lying down, I might have aspirated and stopped breathing.

A few days later, Andy was home for a visit and when he hugged me, could not believe what my breathing sounded like. It freaked him out as I sounded like a freight train! He rushed me to the ER again where I was immediately admitted for of all things, Aspiration Pneumonia (from the inhalation of the some of the vomit days earlier)!!! Isn’t this sounding like a soap opera at this point??I spent 2-3 days in the hospital getting respiratory treatment and was finally released. At this point, Andy was DONE. He could not face leaving me alone with all these problems and decided to move us all with him that weekend!

He quickly rented 2 moving trucks and started packing us up hastily, pretty much by himself. The boys helped as much as 13 and 16 year olds can really help. I was still in terrible pain and spent most of my time laying down as sitting, standing, basically any movement or position hurt terribly. We had no choice but to have Ryan drive one of the moving trucks, with Andy driving the other pulling one of our cars. There was no way I could make the trip in a truck, and we needed our vehicles. I HAD to drive one of the cars and this would prove to be a bad idea, but we had no choice. We simply prayed that things would go well.

Within 3 hours of our destination, we stopped to eat before we started getting into the really rural, curvy roads. As we left the restaurant, Andy and the boys took off ahead of me to get to their trucks which were parked quite far off. As my bad luck would have it, I did not make it to my car. I did not know until this time that I was almost dragging my feet due to the nerve damage and some uneven pavement caused me to fall. HARD. I hit the ground with the fall shattering my plastic cup and jarring me head to toe. As I gathered my senses, I just started hysterically crying. I was in the middle of a parking lot in the pitch dark of night, alone, bleeding and bruised with no idea where the guys were. I just started yelling out between sobs. I had no idea if anyone even heard me. After 7 hours of driving with 3 more to go, I was just defeated.

No one was around, but Holt thought he heard something even though it was very windy. The three of them came running, following the sound of my voice having no idea where I was. When they found me, Andy was just crushed and his eyes filled with tears. I’m sure it terrified him. The boys were speechless. I was sprawled out in a big mess, knees bleeding, just broken and devastated and in even more pain. We had no choice but to have me drive to a nearby gas station where there was light to clean me up and assess my new injuries and gas up the moving trucks. Our plans were to stay in a local hotel for several weeks until our house was ready.

Within 3 weeks of arriving to our new town, I was in surgery AGAIN. This was 3 months exactly since the first surgery. This time, we made a VERY bad choice of a surgeon and he butchered my back. He had just moved to town to be near his son and his reputation was great.  By the time we realized what he had done to me, he was on the move again, as his malpractice past had caught up to him in our town.  He actually did a fusion without hardware, and this is rarely done as the 2nd surgery in back patients. In a fusion, the damaged disc material is removed and one of two options:Grafts made from pieces of bone (usually taken from your hip) or bony material. A small metal cage filled with bone graft material. My doctor used both my bone and a product called BMP - Bone Morphogenic Protein. There is some growing controversy over whether the BMP can cause additional nerve damage. Definitely research this if you are allowing this in an upcoming surgery.

My extruded disc was only worsened during that fall, and my nerves were severely compromised. This second surgery was not only poorly done, but had a major complication that went undeclared as this doctor "pretended" I was healing nicely. Looking back, I think we were just overwhelmed with everything and I was in so much pain. The nearest “civilization” to interview any other doctors was a 4-hour round trip on rural.curvy roads. Not a great excuse, but the level of pain I was in was just indescribable. I just could not face this. By this point, I could not sit, stand, walk or do much of anything for more than 20 minutes at a time.

My life consisted of living in my recliner, fully reclined. I am going to post a picture I don't think anyone has seen. This was my life. We were living in a hotel for over 2 months - primarily because with the stress of working full time, taking care of me and the boys and getting the house ready to move in, Andy was overwhelmed. And he thought moving to the house would be worse for me. Keeping me in the hotel, in my recliner and contained made him feel "safer" that I wouldn't hurt myself again.   He had a complimentary hot breakfast every morning, maid service (such that it was) and I was contained.  Going crazy, but physically contained.  Sounds mean, but he was trying to keep it all together while starting a new job, no less.

So every day, as the boys went to school and Andy to work, I stayed fully reclined in my chair for 23 hours a day. I slept there, ate there, lived there. If I got up from the fully reclined position, I died from pain. It was just awful and here is a photo to prove it. My chair is in the center, with 2 tables right up against it so I could reach everything I needed and not have to get up unless to go to the bathroom. Andy came home every day at lunch to get me food and check on me, get me anything I needed. Rinse, wash, repeat for over 60 days. (That was our "kitchen" in the back right corner.)

Yes, it looks like a frat house, because 3 boys/men were in charge. The only girl, ME, could do nothing. Barely could use the bathroom by myself. Everyone who knows me in real life knows I am an organized, super clean gal....and living like this, crammed in....and with no physical ability to tie my own shoe, let alone clean up was demoralizing. Thankfully, the boys had their own adjoining room so we weren't all stuffed into one hotel room.Why do I have pictures of this nightmare? Well, I always take pictures of my "homes" and this was no exception! lol

This was my "view" daily and I can promise you, I watched that door longingly for someone to come home. It was pitiful. Can you see Sweety on the bed? lol  Always keeping an eye on me, as she knew something was really wrong with her Mama.  I was "up" taking this picture and I didn't GET up.  She was on alert.  The open door past the TV was the door to the boys room.  Thankfully, I have no pictures of that room!  lol

When we moved to the house, I was one happy girl, even though it was literally months before we had most of the main floor unpacked. I'm telling you ladies - imagine moving and having NO input. No packing, no unpacking, no nothing. And just waiting until any of the guys had time or "felt like" unpacking, let alone decorating or even decluttering to a female's standards. A dark time in my life, but I was also SO appreciative that I had such a wonderful husband who took on all this extra load without a single complaint. I kept my mouth shut as well, not criticizing or pressuring. I was just thankful to be in a home with windows and trees instead of hotel walls. Let me tell you.

During this time, I needed help in and out of my chair. The boys or hubs were having to get me anything I needed, from water to food to whatever. I felt so helpless. but if I got up to do anything myself, I had such horrid pain. It would be months before I found out why.

Although this 2nd orthopedic surgeon told me I was “fine” at every follow-up visit, I knew I was not. Not only was the pain not better, it was worse. And I could not walk properly. He offered me more epidural steroid injections, but I knew better. Finally, I just demanded my records and fired him. My gut told me something was really wrong.

And it was.

To be continued…..



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