Journal

After being diagnosed with Severe Advanced Ankylosing Spondylitis, I was doing some reading tonight of this article sent to me by my Neurosurgeon that pretty much described to me what they found on the CT Scan at T-11 T-12 and L-1. ( not mentioned here is that I have had 10 back surgeries leading up to this and I have been fused with steel at L-5 S-1 and L-4 L-5) The article is almost verbatim to what they told me, the rest of the article went on to say there are drugs to slow the progression of this disease but they never said what they were. Additionally the article went on to say that when this develops in patients with spinal stenosis and previous fusions walking can be near impossible from the Neuropathy (neuropathic pain….burning tingling pins and needles feeling the burning being the most severe and what I have) and muscle weakness. Anyway I thought this was a very interesting article and wanted to share it with you. This last part of the article (Highlighted below) made me laugh as it explains in layman’s terms why my shoulders, wrists, hands and knees hurt so bad, and make me require an electric wheelchair. Remember me saying that I was having trouble playing the guitar because of the pain in my wrists and hands? It all comes together now.  

In advanced ankylosing spondylitis, there is:

Fusion of joints in the spine.Flattening of the normal curve in the low back.Often a flattening of the normal curve of the neck, an increase in the forward curve of the upper back, and bent posture at the hips.

Other joints can become painful and stiff, including those in the shoulders, wrists, hands, knees, ankles, and feet.   (yes to all of these  highlighted areas for me by the way)

                                                                                                          Severe or advanced ankylosing spondylitis

If, over time, the inflammation continues, it will lead to scarring and permanent damage.

Scarring in the spine causes the joints of the spine to grow together (fuse, or "ankylose"). As the bones fuse, back pain will gradually go away, but the spine will remain very stiff and unable to bend. The fused spine is more likely to break (fracture) if injured, especially the neck (cervical spine).Changes in the spine can cause problems with balance, safety, and mobility. The upper spine can curve forward until eventually the person has a hard time looking straight ahead. Also, as the spine loses its natural curves, it becomes hard to balance while standing and walking, especially if the hips are also affected.

The red highlighted area depicts total bullshit, but in a nutshell this describes why I am now in a wheelchair unable to walk more than a few feet at a time, when I fell that night, I fractured the self fusion at T-11 T-12 and L-1 which will take up to a year to heal and then the self fusion will start all over again so I am totally and unequivocally  screwed! This does a far better job of explaining what has happened to me than I could ever do so there you have it. Imay never find a reason to go on living after this diagnosis particularly because I now know this will proressively get worse bringing moe pain and sufering and knowing I will live life in a wheelchair which the insurance company has denied is making me all the more committed to ending my life but now at least I know what is wrong with me!

 

I have just come out of the hospital after a month long stay. I woke up about a month ago in the middle of the night I hurt really bad and there was nothing new in that as most of you know, so I did what I have always done I stood up to walk around the house...... then it happened I stood up and lost all feeling in my body from the waist down actually from the belly button down and fell to the floor I layed there for four hours until I got the feeling baqck I was terrified. I called the Surgeon in the morning and he got me in the next day. When he saw me he knew there was something wrong and admitted me into the hospital to do some tests starting with a myleogram. The next day they took me for the myleogram and everything was going well until they injected the dye and then bang I lost all feeling from the waist down and they had to catch me. Next they did a ct scan and then the doc said look we cant find anything wrong with where the problems have been we are going to look higher and they did another CT scan at the thoracic level and there they found the problem. I have psoriatic arthritis ( which loves the spine) it is the evil twin to rhumetoid arthritis anyway the psoriatic arthritis had self fused T11-T12-and L-1 apparently when I fell it broke and caused bone fragments into my nerve canal. Becuase of how bad my back is the Drs. all of them dont feel there is any surgicval option at all as they fear if they go in now, they will end up fusing every level of my spine as they fear the domino effect. After 8 days in the hospital I was transferred to a rehab hospital for two weeks, where I was fitted for an electric wheelchair and they worked on getting me walking again. I can walk about 10-15 feet but the Drs. prefer that I dont they want me to use the chair for anything greater than 15 feet my home is an example where I can walk and keep the chair in the back of my Suburban but when we go out as a family I use the chair. Additionally since I have been home I have been falling alot. So I have gone from looking for a reason to live as my main goal when I joined here to what the hell could I possibly want to go on with life in a wheelchair for? I have recieved so many prayers and nice messages and prayers and I love you all for that but I am getting to the point where I think it is almost time to take matters into my own hands..... I go from 10 back surgeries and walk for almost ten years to waking up in the middle of the night and in a wheelchair literally over night REALLY? My life is now seriously worthless.