icRKphJXQm-ezth8lntKydifkDg The Loose Screw: My Illness(es..es..es....)

Wednesday, March 25, 2009

My Illness(es..es..es....)

I figure it's about time to go into this subject, since I touch on it here and there in posts and in my profile. I might have to do this in a couple posts even. Here goes-as a child, I was fairly healthy. I was adopted, a closed adoption as they all were in the 60s I think! So, we had no access to medical records, conditions, anything. When I was a pre-teen, it was discovered I had scoliosis (curvature of the spine). Mine was up high between the shoulder blades, and was already too advanced for a brace to be helpful. Usually, (back then at least) they were trying to just stop the curve from worsening, not trying to correct anything. The doctor we saw suggested surgery to put in a steel rod, and I would be in a body cast for several months (9 I seem to remember). My parents looked into alternative treatments (quite surprising now that I think of it!!), and found an experimental study going on using something called a Scolitron. For about 3 years I wore this machine at night for 8 hours, with electrodes at the top and bottom of the curve, and for 8 seconds it would electrically shock my spine completely straight (I know, crazy and painful) and then let it rest for 8 seconds. It took a long while for me to get the shock up high enough to straighten for those 8 seconds, I had to increase the power a tiny bit each night, as much as I could bear. I finally got used to it, and actually at the end of the 3 years, had to wean off of it!! It did stop my curve from worsening, and they x-rayed my wrist each month to see when I stopped growing, so I could be done with the treatment. I finished growing in 8th grade, and it was really weird to know that fact!!

The reason I'm explaining all of this (beside the weirdness of it), is we really do not know how much of it had/has an impact on my spine now. Maybe I should have had the surgery. All we know now, is that the experimental treatment was not approved by the FDA, in fact was just about laughed out. Most spine specialists now have never even heard of such a thing and are 'shocked' (ha!) by it. All I know is my parents did what they thought was best for me, and I love them for that. I can't imagine putting my child through the surgery they were describing either, if there were other options. Plus, my curve did stop curving! Would it have anyway on its own?? Maybe. I ended up with the curve crushing my organs and ribs a few centimeters permanently, which is normal. Does all of this contribute to my problems now? Maybe. Probably. It depends which doctor I am seeing. Frustrating. I do know the Greatest Doctor knows all the answers to my questions, and He will answer them for me in Heaven. Until then, back to the story.....

In my 20s, things were pretty much OK, I had my two biological children. I know now that things weren't fine and that is why I had trouble with my last pregnancy and other little things. I couldn't have any other kids because my body didn't want to keep them inside me. Then about 10 years ago, my bladder fell. Now, this happens to women who have had lots and lots of babies, huge babies, etc. Neither had happened to me. Couldn't figure that one out (but we know now!), so I had the bladder surgically put back up in a little sling made out of my ligaments and all was back to normal.

Around 2001, my upper spine/neck was really hurting. It always hurt by the end of the day, and I was told this was due to the scoliosis. But this was much worse. I was working at home as a medical transcriptionist full time, so lots of computer work. This is when I found out that I have degenerative disc disease. My discs had not herniated, they had dissolved/disappeared. I needed surgery to have two spinal levels(c56, 67) fused together with artificial disc material placed in them and plates and screws. I had to have a really horrible test done in the OR while awake, that I still have nightmares about to this day. They couldn't give any pain meds because they needed a true response-yuck. So, I had the surgery in March. They went in through the front of the neck (a surprise to me), and because my veins did not cooperate I had to have a port in my chest. The recovery from that surgery was awful. I was in a hard collar for 2 months, which was so uncomfortable. Then a soft one for a few months after that. The bad news was that the pain did not go away. We kept giving it time, giving it time, but time didn't work. Finally, after a move, a new neurosurgeon (we switched from orthopedic surgeon to neurosurgeon-good move) did an MRI and said the spine never fused to the hardware. So, in 2003 I had the surgery redone, this time with a new 'miracle-grow' cell producer liquid dripped into donor bone. A plastic surgeon came in and took out my old scar, which had not healed well (another clue for later), and tried to make a better one. Also to try to encourage fusing, I wore a bone growth stimulator around my neck during the day for about six months. During this surgery was when the broken screw was noticed and could not be retrieved, hence the name of my blog. There was some question of a bleeding problem during this surgery, and a blood clotting medication was used during surgery, but at a consultation with a hematologist afterward he said there was no problem.

We moved to Utah, and I was feeling better than after the first surgery, but still in a lot of pain. I saw a neurosurgeon here, and she showed me how the second fusion did not take either! On top of that, now there were problems compounded-the vertebrae underneath the fusions had shifted, causing a 'step-down' to my spine (I still have that), bone spurs, degeneration at a level immediately above and immediately below the old fusions, and at certain movements of my head, the edges of vertebrae hitting each other. So, not good. While waiting for surgery, I had a few outpatient spinal blocks done in my neck and other fun things I can't even remember to try to ease the pain. I wore a brace until surgery, which was July 2006. Because I had been entered twice in the front of the neck, she had to go in through the back, which is harder surgically to work with. She decided to add in one of the new degenerated levels (c7-T1), but to leave the other one (c45) for later (something to look forward to-yea!). She put in mass plates at the facet joints (I think I have that right), and basically made an interior neck brace so that the unsafe movement that was happening couldn't happen anymore. Also, this interior neck brace would not count on my body to fuse, it wouldn't need to as this hardware would hold everything together. The drawbacks to having this major of hardware inserted was that she said I would forever have pain, though hopefully not as bad as it was before. Also, I could never do any athletic activities-walking was about all that was safe. No lifting over about 10 lbs. Lots of restrictions, but it seemed worth it. The pain is about the same, but its hard to tell what is arthritis (which I have now), DDD, scoliosis, or autoimmune (below).

After this surgery, my spine healed well, but my body fell apart, and we now know that the surgery triggered my dormant autoimmune disease (which we didn't know I had) to make a MAJOR appearance. I think that will be the next post, as this is getting TOO LONG. Next post-autoimmune disease, and all the fun you can have with that!

7 comments:

Christy Behunin said...

Athena.. You have been through so much. (((((HUGS)))) I knew some of the story, but most of it I did not.

I will definetly keep you on my prayer list. Thanks for taking the time to type that all up so others can start to understand what you are going through.

Blessings,
Christy

politically frustrated mamma said...

Thank you for sharing that Athena. You are an inspiration to me in how you have drawn strength from the Lord. My grandfather had major heart surgery when I was in college, 16 years ago, and it caused ALS to surface. They felt that it would have waited another 10 years if not for the surgery. It's so odd how things like that happen. My dad has Addison's disease. So serious illness runs in my family. I appreciate you sharing your story, and I am so glad that you and your family are at Lifeline!

Jennifer-Eighty MPH Mom said...

Yikes! I'm due to have cervical surgery in about a week. They will do a corpectomy and fusion (remove two discs and C5 vertebrae.

What test did they do during surgery in the OR and why were you awake?? Did they put you back to sleep afterward? I haven't heard of this...and I'm a little scared.

I'm so sorry you continued to have problems with your spine...and that is crazy about the screw!

Anonymous said...

I was a part of the Scolitron experiment too! It was soooo horrible. I was allergic to the gel for the electrodes so I basically had open sores where the electrodes were supposed to go - well, add electricity and OMG. Seriously traumatic. Didn't work, wound up with my whole thoracic spine fused and Harrington rods.

Athena said...

Anonymous, that is crazy! I've never met anyone that was part of the experiment. I can't imagine what you went through with the sores, as it was painful enough without sores. Thanks for visiting!

Amy Canterbury said...

I was also treated with a scolitron and experienced the pain and allergic reactions. It did not work and I had the spinal fusion with a harrington rod. I am so sorry about what you have to go through. I am currently on the couch down for the day from pulling my back out so I can definitely empathize with you both. Prayers that your last surgery went well.

Anonymous said...

Hi, I also had to sleep with the Scolitron device in the 1980s. I was 12 when this treatment started and I had it for 4 years. Besides, I had to do a lot of exercises. Unfortunately, I think, so little is known about the results and the later effects of this treatment! I'm okay now but lower back pain is part of my everyday life. But you get used to that! I'm a freelance translator working at home. So I can talk walks around the house if the pain is too loud. :-) Good luck! Greetings from Belgium!