Friday, January 13, 2012

Letter I wrote to a DOC, trying to find some answers on where to go to find an answer

There has to be an answer somewhere...and u don't get anywhere, IF u don't ask...u know?:)<3 K


I have been suffering for over 5 years, but the last 3 have been utter hell on Earth. I have so many symptoms, but I have been to several Neurlogists and a couple of Neurosurgens and have dx's, but I am not getting better and feel there is some other underlying cause that they are just not finding and need help bad discovering what this is.
Okay, I have had a couple of things happen to me, in the past that I feel could be responsible and I will list them first, then list what symptoms that are the worst and that scare me. I have had a surgery on my left jaw bone, removed a bone spur(my jaw would lock, so the doc, a Maxillofacial surgeon fixed this back in '89). I do have a knot that is protruding over my left ear area. It feels the size of a pea and the bad thing is that I can't reach the doctor who performed this surgery. I must say that one of the symptoms I have is complete numbness on the left side of my face and feel that this could be responsible. I have numbness from my left side of forehead down to my collarbone almost. It does stay that way and sometimes, I feel like my face is being pulled downward toward my chin and am worried @ having mini-stroke or TIA's. I am only 46, but it could happen.
The second surgery that worries me, because ALL of this started after this particular surgery. It was an ACD & F spinal diskectomy of my C5-C6 and they did it on the left side since I am a professional vocalist. (Thank God, I still have my voice, but could do w/out this PAIN) I was doing well from this surgery, until around the 3rd month following it. My right arm Bi-cep would ache and burn. I went to the NS that performed the surgery and he even said that it was my C5. How is that possible, unless there is a problem, since he did surgery on it and I went to see him 9 out of 11 months, the first year, but he kept saying that he couldn't see a problem....Yeah,  but I felt it.
After suffering with what I thought was pain for that first year, I went in to see a Pain Management doc and he recommended that I receive a series of (3) nerve blocks. He called them Epidural Steriod Injections. I did fine for the first two, which were given in my Cervical, but when he done the last one, he hit something that made me jump so hard on that table. He was shook up, I could tell. He got right in my face and asked me, "Do you have heavy breathing, are your ears ringing?" I knew something must have been wrong, for my hands and feet were completely numb, like I had just the soles of my shoes on. He kept me over an hour that day and observed me with monitors for blood pressure and heart rate. I noticed them passing outside my door, but they seem concerned that something was wrong. IT is. I am still numb and it has been since Dec 26th 2006, when I had that last ESI.
I started having all of the terrible leg pains, but they were gradual, not suddenly. I would feel things happening to me, like one day I was just setting in a chair and it felt like someone had just went by me with a knife and sliced me. I reached over to touch the place and it felt as if, I had really been cut. I did have a blistery bubble,(size of a nickel) come up right where I felt sliced. I then, started to getting pinches, pokes,stabbing or axe in the middle of the back(between the scapula) and my hair would feel like it had been pulled and was so sore on my scalp.Now, I must admit that I did get into a car accident, but was the passenger. The car went over a boulder in the road and my head went into the roof...hard. We succeeded to go to our destination, but when we arrived, my head hurt too bad to have wanted to stay and we were at a casino. At that time, I wouldn't have left, unless there was a good reason and my head hurt really bad. I don't even gamble, at all, for these days I do well to get up and walk outside and sit on my back porch.
I did pull a tick off of me too, back 3 yrs. ago and thought it could be Lyme, but I have been tested twice for it and it was negative, but then again, I live in a small town and feel I haven't been fully tested for that disease. I heard a person has to go see a specialist in that field or it is hard to get dx'd. So, I have battled trying to find a specialist in that field, to get tested again to make sure. I sure don't want to be dx with Lyme(or Lupus), but since my symptoms cover almost every ONE, of the symptoms on the list, I think it is still a possibility. I don't understand why no one can give me an idea of what this is?
There is a lot more that I could say, but this story, I am sure most people have probably heard off the net. I look up my symptoms a lot, for I can't seem to go much or do many things. So, I pray that u could tell me which one of these could make a person's skin burn, ache deeply, cramp in every muscle of ur body, be paralysed on the whole left side of the body(even called 911, bc I thought I was having a stroke), my brain feels like it swells. This is everyday and if, I have a good day, I am limited because I will pay for it another week, but I am a go getter and someone who loves to work and can't.
Oh, I must tell u that where I got hit on the head, I get knots there and on the side of my temples.(mostly left-but then again, that is where I had that bone spur removed from the jaw surgery, back in '89) I am lost and desperately need to get a dx, to know how to find my way back to me....and THIS is not just Fibro...I can tell u that much.
I need to tell u that I am a complex case and have seen so many doctors for this, but have gotten no where. I have been dx'd with DDD of cervical, Lumbar & hip/joint, Spondylosis, Fibro(all 18 out of 18 tender points), VA(Venous Anomally-do they suppose to hurt?MINE DOES), CM(Chiari Malformation). There are more, but the aren't related to skin erruptions, boils, blisters(on face),soreness that takes my whole body over like worse than being run over by a truck. My left arm aches and hurts all the time and I am afraid it could be heart related and it is bad when it take 3-6 months to get an appointment to see someone to help u. Thanks.:))<3 Karen
                                                                                                                                                                                          
I run accross this picture...and remembered how good I felt here. It was a wonderful time, in my life...to where I could do almost anything that I wanted.
Now, I don't even look anything like that  anymore...and I sure can't move like I once did...not anymore...not to me.:((
I even had my own nails here, not some put-on ones, so the nubs won't show. Ever since, they became numb and the nails began to cracking and peeling...I have had to get nails put-on, but I am still hopeful that things will go back to normal. It is only going to take time.:P
My hands  and feet have been numb, since i got hit by the nerve block back in '06. Ever since, I had my surgery, things have been really bad...and what the bad news is...IT is getting worse.
Not only do I have the numbness...I have a plethura of symptoms that could fill a wastebasket. I really do have a reason to be drepressed, but I keep trying to find me way out of this hole....and one day, I will.:)

The day, that "wet tap" got me...:(( ...my life cmpletely changed. The procedure was called an Epidural Steroid Injection and I wouldn't recommend it to anyone. I want to tell others that it is NOT the way to go. Don't take the chance of losing the feeling anywhere or having this horrific pain, (Neuropathy)...like I do, in my whole body, to be able to grab u.
If only I had listened and not went that day, but we can't go backward...unfortunately....but, we can try to make each day...as good as a day, as we can have. We have to have FAITH...that there is a better day waiting for us...and guess what, there is.:D
God Bless always.:))<3 Karen










Pain is a humbling experience.Here we vent our frustations to therapeutically deal with our situation. Some of us deal with so much pain that we feel down and depressed from it, but if we would focus our minds on The Lord, He will help us through our days.:)))<3 K