I read the please read and FAQs. I haven't posted as I was confused on a few things and wrote a moderator but I guess in the holidays it got lost. So before I talk on me I have a few questions maybe some of y'all could assist me with. There is something about putting something small in the signature line, there is mention of a health history [form]? How do I use them and more importantly , how do I find them. Also it says not to make post too long, so I will do a very basic bit for my back from age 13-42. Here goes.
At 13 I started getting severe hip and right leg pain. Six months later, I had an emergency surgery following a myleogram. Two discs,L3-L5 were in trouble. L4-5 caused the emergency with a large central protrusion closing off the canal,crushing large truncation of nerves. At this point I was diagnosed with congenital premature DDD. I underwent another five surgeries with more ruptured discs and fusions with my last surgery being in ~1994. I ended up fused with discectomies from L2 - S1.
I never left home, except for college, since this was diagnosed before my 18th birthday and Insurance determined me to be an incapacitated minor. This has good and bad things. The good is I have health care all my life as long as I don't work and I don't marry. The bad was that there was no sense in meeting men because I couldn't afford to lose my heart to someone and with that my insurance of which I have needed every day of m life since this started. Holding down a job wouldn't have worked either due to my back so that wasn't an issue.
I managed to get through high school missing half a year every year and I had to leave college when my pain pill consumption skyrocketed trying to get through classes. Once returning home, I have had ,and still do,great parents. I always did my best to help out with everything I could. From about age 21-42 I could do most anything in household chores,gardening, plumbing,wiring,arts,crafts,etc. I could not do anything in great spurts of time and I required 1-4 Darvocet a day to hide the pain so I could do it. I was very proud of myself being able to accomplish all I could.
JUST PRIOR TO LIFE ALTERING EVENT
In March of 2006, after my last elderly relative died to whom I had been caretaker (4elderly grandparents) since I didn't work, I decided to make my health my priority. I would walk 2 1/2 miles daily at about 3mph. On alternating days, I would do Wii EA Sports Active which toned me up considerably. I would follow the 45 minute era with 20 minutes of Wii Just Dance. The other day was an hour of Just Dance after the walk. I dropped thirty pounds and I looked and felt great. However due to the increase in activity, I ended up going basically to 6 Darvocet a day. My PCP just couldn't understand that just because I lost weight my pain pills wouldn't go down, so he had me go to PT to see if we could reduce it one.
On the evaluation day at PT, the therapist gave me one exercise to do in his office and that started my descent into hell on earth.
SEPT 2010 - JAN 2012
Within two days of that PT appt. I could no longer walk if I stood up straight. My doctor saw me on day two gave me a steroid injection and put me on round the clock 10/325 Percocet and 10mg Valium. He suggested I do my best to keep up my activity. The only way I could walk was like a monkey, severely bent knees and leaning way forward. Within two weeks, my parents followed me on our walk with a wheelchair so when my muscles gave out, they would wheel me home. We saw local doctors arranged by my PCP for EMGs and always was told good news, sorry you are in terrible pain, but it's not my problem. In late Dec 2010 an Orlando doctor put me into a brace and arranged for an immediate spinal epidural. After the epidural of which I jumped in pain with the needle in me, the nurse and doctor left and said I could go once I got dressed. I virtually crawled along furnishings until I reached the door were my father basically dragged me to the car. This was a Friday. Between Sunday and Monday, I could hardly walk at all and I couldn't urinate. My Dad rushed me up to Jacksonville to a well respected hospital. The ED did another MRI to rule out caudal equine syndrome. They were going to send me home in this awful condition until dad made them understand that I hadn't voided in more than 24 hours. That set me in hospital for a few days.
Fast forward, neurologist says the pain and inability to void was due to long term use of Darvocet and i needed to go to their pain rehab in Minnesota. I refer to this as it is in your head. Neurosurgeons can't see anything wrong, PT can't help and in fact declined to work with me unsatisfied with what doctor wrote as diagnosis. Pain was at suicide levels. PCP was doing all he could on that front, 100mcg/hr fentanyl along with closer together around the clock Percocet and Valium. Pain on this still at 7-8 levels. My dad was left to play detective before I took my life. He found enough info to make him think it could me piriformis problems. We found a world renowned doctor who did a MRN, like a MRI but it excites the nerves to be seen instead of the normal images from a regular MRI. This looks for impinged nerves not in the spinal canal, peripheral nerves. I flew to CA desperate for anything. He came in did an exam. He hit a point on both sides of my legs that made me drop to the floor despite being between bars. He told us at first he didn't think he could help from the MRN, But after the test thought he might be able to. He did a bilateral resection of the piriformis muscles. After surgery he came in to see me get up and walk and now my legs didn't work at all. We stayed in CA for four months to recover to fly home.
Dad in his constant research came across a doctor on the Internet who answered MRI questions for med students. Dad wrote him about another idea that he thought could be wrong with me and asked how we would find out. This doctor emailed back and forth for 20 min and offered to see me in his office in Vail, CO. We flew there in October and after a two hour examination and a 3T MRI, he came in with a definitive diagnosis of a sagital plane imbalance requiring a pedicle subtraction osteotomy. I had developed from my fusions,before hardware was used, flat back syndrome. The exercise I did in that PT session changed the coping mechanism I had developed over the years.
Think of the sagital plane imbalance as scoliosis, but instead of the wrong curve going side to side, it goes front to back. The pedicle subtraction osteotomy required the removal of the old fusions, they then cut a wedge shape out of the L4 vertebrae and then bent me back like a rack of lamb holding it with hardware. I had to get clearance from a shrink because it was life and death. At that point death would be is fine. The doctors promised nothing but hoped the one thing it would likely give me was the ability to sit in a chair again to do some crafts, play piano. Due to not having had walked for two years they sent me to a rehab hospital when I showed signs of walking after surgery. I returned to FL in late Feb. the few PT's I found were too aggressive and not very willing to follow my doctors rehab instructions. So in June 2012 - Oct 2012, my family returned to Vail for therapy with the therapist who worked with my doctor on the aftercare program.
SORRY FOR LENGTH, WHERE I AM TODAY PHYSICALLY AND MENTALLY
it is now January 2013, just shy of the one year surgery date. Compared to how bad I was, I am thousands times better. I can walk with a cane for 20-25 minutes twice a dayat about 1mph. I can do two PT sessions on my own for about 30-40 minutes each daily. I can pee now-huge change, no longer meed my Dad to wheel me and stay with me in the bathroom. some dignity retrieved. I still can't sit without pain coming on fast.
Compared to where I was when I got so fit, I am about 20% of that person. I still am on 80mg Oxycotin twice daily,10/325 Percocet for breakthrough, 10 mg Valium for breakthrough, we stopped the fentanyl patches and replaced them with a medi-equivalent of additional OxyContin after my skin got so disturbed. I also am on 200mg Celebrex ad 5%lidocaine patches for trochanter bursitis caused by how I walked in the beginning. I am taking pristique for depression which shows how desperate things got. In the past they tried anti depressants on me for pain and they made me very suicidal, got me cutting myself,etc. luckily, his one hadn't affected me this way. An early try of Cymbalta immediately triggered cutting again, so it was stopped after two doses.
Now my real issue for me is that of quality of life. Being unable to sit and do anything more than the two walks and two PT sessions isn't much of living. I have been told to give it two years to see for sure all I will get back, if anything else. Whenever I try to add something new such as 10 minutes cutting veggies, my breakthrough meds get pretty much used up for the day. I try to keep it at 2 Percocet but some days I get to 5. I am truly devastated that I am now only a drain on my family. I provide them with NOTHING but my presence which isn't always joyous to be around.
What I hope to find out here is for people who are trapped in their bodies, unable to sit, how do you get along? How do you get to like your life? I understand from a nice woman who sent me a PM that no one can give me the answer, but ideas on how to cope would be appreciated. I have no plans to change my life's direction by my own hand for at least that extra year, but I so would like to be able to say that life is good and worth it when the two years is up. If it hadn't have been for the great doc n Vail and the great PT there as well, even my PCP knows I wouldn't have made it to be here writing this.
Best to all. Once again, I know they said keep it short but I see no way to get the facts of all that transpired without this long letter. Sorry to the moderator for breaking his rule.