Hi Everyone.......I am 55 years old and a female. I have pernicious anemia and went to a rheumatologist for years who said I had fibromyalgia but I really never complained about the aches and pains.
I had surgery Dec 3, 2013, and while in the hospital I wanted to ask to stay another night and I don't know why I didn't open up and request it which was a mistake. I came home on Dec 4, 2013 and the doctor said with the c3-c4 anterior fusion, I had no restrictions in having to use a neck brace in the house and said I could sleep in a bed. He was so wrong with that because when you lie in bed, you have to twist your body to get your legs off the bed and then your upper part to be able get out of bed. That day I went to lie down in bed and had trouble even rolling over and asked my husband to help me get up. He took his two hands and placed them on my back and in the meanwhile he forgot to support my head and I had my neck brace on clinging to dear life because I felt him pushing me up too fast. My face turned all red when I sat up and I started to walk out the door and I felt a bone shift to the right in my lower neck upper thoracic about c8, T1 and I felt a glove-like effect in both my forearms. Then what was a small herniation in c6-c7 became a 2mm bulging disk and from that disk I got pain up the left side of my neck to the back of my head and both my ear-drums closed. Now I get a noise "shhh" in both ears all the time, but when I wake up it is not so bad and progressively gets worse at night. I then felt my brain shake and my vision got distorted and blurry. I couldn't believe what happened and was upset and hoping it would go away. As I was recovering with my throat, I was getting horrible pins and needles to my head if I turned my head in any direction so I tried to keep it straight hoping things would get better. I couldn't possibly tell the surgeon what happened but I eventually did. Three weeks into the surgery, I started to choke on soups with spinach and this wasn't happening before that. Then I started to get burning in my mouth and tongue from after only eating 1/2 of a chicken soup. I was also getting burning in my stomach and below the belly button. Then I started moving my bowels after everything I ate. I felt very sickly and very weak all over my body and I would get uncontrollable shaking all over my body. My husband said that everything I was eating was coming out of me too quickly and I wasn't able to hold in any foods so that they can be digested. I started to lose 4 pounds a week in my weight and then I started to constantly weight myself so that I could maintain my weight. I would start to get spasms in my neck and then my whole spine and I would need to lie down on the floor and my heart would beat very fast and heavy, I had burning in my back on both sides, I could not move my arms or limbs and then I would start to breath heavy and sometimes my vision would get distorted. I went to 5 different hospitals when this was occurring the last hospital was South Nassau Hospital as the surgeon told me to go there for an evaluation. The doctor at the ER kept telling me that the surgeon didn't do anything wrong and I can't help you, like he was a guild trip or something. I told him I was not blaming the doctor but needed help and somehting was wrong with my neck. To make me happy, he gave me a CT scan of my neck which showed nothing and sent me home.
I went to my regular physician and showed him my hands as they look pale, skin is thin and fingers look veiny and blue and the palms of my hands the skin is cracked and peeling. The doctor yelled at me telling me I should not have had the surgery and that my neck looks worse than ever. He wanted me to stay on amytriptylene 10 mg which only made things worse even though it helped the pain. I got up from the chair in his office and my spine in the lower thoracic felt like it was going to break in half and then 1/2 later, all my organs started to throb on the inside. I told the doctor is doesn't look like I'm getting proper nourishment or circulation to my hands. I showed him the EMG reports from the neurologist and those tests revealed Right deltoid, right triceps, left triceps and left abductor pollicis brevis showed increased motor unit amplitude and increased motor unit duration. Also, chronic deneration in the right c6 and bilateral c7 nerve roots. My lumbar showed Left perioneal motor nerve reduced aplitude (ankle, 3.9mV). The Right peroneal motor nerve showed reduced amplitude (Ankle, 0.4 mV) and reduced amplitude (pop, .4mV). All F Wave latencies were within normal limits. H-reflex studies indicate that the Left tibial H-reflex and the Right tibial H-rflex show prolonged latency (L27.64, R27.64 ms). EmG needle evaluation of the Right anterior tibialis showed present polyphasic potentials. Chronic Denervation of Right L5 Nerve Root. I don't even know what these EMG's mean and the doctor never told me. To me it looks like neuropathy or nerve damage, not sure?
The regular doctor put me in the hospital to do a colonoscopy and endoscopy in the hospital and run some tests. The tests they did was sonogram of all my internal organs, and MRI of my brain which was done 3 times already (I don't know what they are looking for there?). In the hospital at certain times, I would get severe nervousness or anxiety form the pains in my neck and head. And the worst part, they were not doing anything for me. They kept telling me everything was coming out normal and had me see a psychiatrist. This was strange that the psychiatrist put me on a medication of the regular physician request. How's that possible that a regular MD can do that? I was frightened and scared that something would happen to me. They were not treating my neck where the bone moved as that is the biggest issue. It feels locked like a tight fist, feels out of place, and it doesn't feel like the nerves are functioning properly like they are being squeezed.
I called my regular doctor telling him I still was not feeling well, and my gastro doctor, psychiatrist and regular physician told me that they were all in agreement that I should go into the hospital to be admitted to their so called "psychiatrict facility". I became so depressed at that point feeling they were not even trying to help me and they were not listening to me. My neck got messed up so they were locking me up and throwing away the key. These are some fine doctors. If you complain enough, they just want to throw the towel in.
I stayed on my ativan 0.5 mg every 12 hours which I feel relaxes my muscles so they are not tense and go into spasm. I also stayed on remeron which I use to sleep at night only take 1/2 a pill otherwise I have insomnia. It's been 6 months since the surgery and I was told by a doctor that I have to wait 1 year before I can have surgery probably because of my problem with the brain shaking so that it could heal. I won't let these doctors get the best of me and I will fight until I find someone who will address my issues and help me. My neurologist said that the jump out of skin feeling I am getting is from the nerves in my neck. I can barely use my arms from the pains and moving my head down or side ways I feel the pressure, stiffness, and pulling in my lower neck and it doesn't feel good. I went to another doctor who deals with peripheral neuropathy and he claims that I have pain all over my body and says that he can't help me. He said that the testing the other doctor performed does not warrant me having neuropathy, which I feel he is not being truthful. He kept telling me I have pains from fibromyalgia and I disagree. I have changes in feeling in my fingertips of my hands and he never checked that. He said the only test that came out negative was in my left leg where the feeling of the needles was different than my right leg. I have sciatica problems too. I also got a glove-like effect in my left leg while walking last summer but paid no attention to it as I didn't know what it was. I also went to see this doctor because he is the only one in my area that deals with peripheral neuropathy. I also argued with him that fibromyalgia is a problem with the disks in your spine and he disagreed saying I was questioning his authority as a doctor. I told him again that it was because all the nerves exit the spine and innervate the muscles. Obviously, I have not gotten a true truthful diagnosis from a doctor. They just keep trying to put me on these neuro medications which I seem to get all the side-effects from and I don't feel well on them. He told me gabapentin, lyrica, neurontin don't cause heart attacks or strokes and are safe......is that another lie? Because on tv, it tells you what side effects they have and to be ware of these things on the commercials.
Also, if this is of any importance, I told this neurologist that the day I came home I was able to hear from my left ear very well where all other Ent's told me that I was getting older and started to get loss of hearing. the orthopaedist said that there was a nerve impingement that he fixed. The neurologist said that the nerves in the neck have nothing to do with the hearing. He is wrong again and I experienced it. This guy should listen to his patients because they have gone thru the surgeries and have experienced things that he has no knowledge of. He also told me, don't go for anymore surgeries on your neck because you'll regret it.
I am working with a neurosurgeon right now but this doctor said he was going to speak to him which I'm afraid of. I am going for a recent MRI of my neck and have to see him on June 26.
Last night I started to get a choking feeling in my throat on the left side (my right side is fine) and coughing. This is scaring me. I also woke up with my left pinky and 4th finger numb on my left hand. My hands are wrinkled up and so are my fingers and sometimes they swell. It just doesn't look right! I don't know what to do anymore or who to go and see to help me! These doctors are making me upset.