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Which one do you suggest;have a spinal tap every 3-4 months to relieve the Spinal Fluid pressure or have surgery to have a little window cut into the optic nerve of each eye to drain off excess spinal fluid?

Question:
While I was living in Japan, I met and later married a very special man, a �one in a million� kind of guy. Our third anniversary was last week, but I have been alone since August, as the Air Force sent my husband to Korea for a year. But, on the upside, we�ll be moving to Arizona when he returns to the states in August. I feel very fortunate to have found this group in January. Jennierose�s postings reminded me to smile and I am trying to educate myself about Fibromyalgia, so I can give all pertinent info to the doctor, who simply has no clue at all. I am not being treated for Fibro, as I have been told that no doctor here at Minot AFB is familiar with it. Another base doctor added that if I wanted any help at all I was gonna have to find it on my own.

I have endured the strange symptoms of fibro since about 1981 and all I�ve gotten from military doctors has been the run-around. In 1994, I finally found a civilian doctor, a Rheumetologist, in Illinois, that actually believed me and didn�t look at me as though I were stupid. This doctor had a name for my pain, and he acknowledged that my symptoms were indeed real. I finally accepted his suggestion to take an anti-depressant, though I did not think myself depressed, just very tired of feeling bad so much of the time. After a few prescription adjustments, we found a combination that worked well for me. I did not realize how bad I had been feeling, until I began to feel better. I still have the pain and the never ending parade of weird ailments, but I feel more like my ol� sweet self again. I am a determined woman; the physical discomforts and limitations that I experience will not be allowed to define who I am. However, as they say in Japan: �Sometimes, even a monkey will fall out of a tree.�

This brings me to the reason I am posting to this website. I would really appreciate some input and ideas from my FMily to help me get through my latest flare of strange symptoms and pain, as I am getting no answers, relief or reliable treatment from the (Air Force, military) doctors. I am alone, far from family and friends and I need some answers... (If you feel the need to stop reading and wipe away a tear, I understand)

Last May I had a routine eye exam. The eye doctor said that the rear area inside the eye, where the optic nerve connects to the eyeball, was raised and swollen, with areas of hemorrhage in both eyes. He ordered a spinal tap. I went to the emergency room on base where the technician on duty made three separate attempts, without success, (or local anesthetic) to perform the tap. I was invited back to try again the next morning. In a nut shell, I was finally told that my spinal fluid pressure reading was 44, but normal was 22, so I had twice as much spinal fluid as I should have. (Whether this measurement or the diagnosis is correct or even accurate, I don�t know, but this is exactly the story that the doctors gave me.) The eye doctor called the condition PSEUDO BENIGN CEREBRAI and said something about extra body weight putting pressure on the spinal cord. He said that excess spinal fluid that was causing the pressure in my eyes and that if it could not be controlled by a short-term course of (Dioxipin) medication, I had two choices: I could have a spinal tap every 3-4 months to relieve the pressure or have surgery to have a little window cut into the optic nerve of each eye to drain off excess spinal fluid! Has anyone in the group heard of such a thing? Dr. Nye???

For nearly a year, since I had the spinal tap, the small of my back swells up and I can hardly stand up long enough to fix myself a sandwich before stabbing lower back pains make it impossible to stay on my feet. I told the base doctor and he ordered an MRI to look for spinal leakage. He said my MRI showed nothing abnormal and he had no clue what the problem might be. He dropped it at that.

Now, over the last couple of weeks, both my hands began to tingle and get numb, swelling more each day. My palms are red and my fingers look like stuffed sausages. This has occurred several times over the last few years, but this is only the second time that the pain and swelling has been so intense. The first time, my entire hand, except for my little finger, swelled up until it resembled the hand of Mickey Mouse, the one in the Macy�s TD Parade. It was horrible! At that time, also, the doctors just scratched their heads and I just had to suffer until it went away on its own, after 2-3 weeks. This time, at it�s mildest level, the pain is like having slammed your hand in a car door, just before the doc has to lance your nail to relieve it the pressure. At worst, it feels like I have my hand in a bucket of ice water. The ache is bone deep now and has spread up my arm and into my collar bone. Often, an additional pain makes it MUCH worse, it feels like I�ve had a saber run through my chest, back to front. Additional pain swells up under my breast bone and radiates up through my throat, into the roof of my mouth and into my eyeballs. It makes me think of trying to swallow a very large, sharp piece of ice, you know, brain-freeze. When it gets this bad, I don�t have the strength to move or call out for help. The doc gave me Pepcid... As for my hand, the doc finally tried telling me that it is carpal tunnel syndrome, which I have had once and I remember that it felt nothing like this! He said it often affects both sides of the body at once. This diagnosis just didn�t seem right to me. Last week he had me try Percocet, which was no help at all and yesterday he gave me some Tylenol #3, which works fair. I just don�t understand, isn�t there SOMETHING that can get rid of this pain? I told the doctor yesterday that I had surpassed my pain endurance and was at the end of my rope. I�m tired of begging for help, so, if he should decide to prescribe euthanasia, I wouldn�t put up much of a fuss. His answer was that he doesn�t know what to tell me and basically just shrugged his shoulders.

While I realize that I probably just need a good hug, I would surely appreciate any feedback anyone can give me, the pain is really starting to get the better of me.


Answer:
How terrible! I wish I could help more, but I can only tell you my opinion about this one little piece of it. This sounds like I felt for the eight years it took to get my hiatial hernia diagnosed. This is a common condition where the muscle at the top of the stomach is streched, and acid rises up into the esophgus. I used to describe it as a rising pain that felt like someone had stabbed an icicle down my throat. I use over-the-counter Tagamet for it. There are other treatments.

Another thing that might provide you with a clue to tell your doctor. I have since developed an additional unrelated problem of esophageal spasms (not diagnosed, but I'm pretty sure that's what's happening.) They happen while I'm eating. I deal with them by not swallowing anything (even if I have to spit out a mouthful of food.) I then procede at speed to the bathroom, and try to relax my throat and diaphragm, and encourage whatever food is on its way down to come up again. I'm not trying to throw up, really. I just want to relieve the pressure of food in my esophagus so the spasms can relax. They can be terribly painful, but I don't have them often enough to have asked the doctor for help.



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