Please help. I have been tested for lots and lots of different things like Tethered Cord, etc. but the doctors can't seem to find out what is wrong with me. My problems keep getting worse and worse. I'm worried I'm going to go blind soon and/or end up in a wheelchair. I have had a Chiari Malformation Decompression Surgery in 2007 to cure a 13mm Chiari, but even after surgery I still had Vision problems and that. The Only thing it cured was the severe headaches I got when I laughed.
F. Myalgia was ruled out, as well as other conditions according to the doctors. I feel like it might be MS or something along those lines, but they said that would of showed up on my MRIs. I had my head, I believe neck, and Spine MRIs but nothing according to the doctors was found. Had EKGs, as well as other tests I don't remember their names, but I was tested numerous times for Seizures all came back Negative, I had a test where they shocked my legs and also where they jug me with needles in my legs to test the nerves and shocked me. All came back negative too, according to them. They tell me it is Stress, and I say it most certainly isn't. If anything is giving me stress, it is not knowing what is wrong with me - not the opposite way around.
Post Continued....... (Please see first comment for list of Symptoms) *Wouldn't post, said I went over the Character limit. *
Hi there and thanks so much for posting this interesting question!
Please be free to post the same question in the Neurological forum at this site if you are looking for a more detailed neurological assessment.
Yes sorry to hear your ordeal since I agree with you it is very frustrating to not know what is an accurate diagnose and according to medicine sometimes they "rule out" different conditions in order to get an approximate condition.
According to the Mayfield Clinic Chiari I malformation is a condition in which the bony space enclosing the lower part of the brain is smaller than normal. Crowding causes the cerebellar tonsils to push through the skull and down into the spinal canal.
According to the National Institute for Neurological disorders and stroke What are the symptoms of a Chiari malformation?
Individuals with CM may complain of neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
The symptoms you are describing although frustrating are considered normal and what you need to monitor if they are getting better or worse. As you may know the Cerebellum stores 50% of the total neurons in the brain affecting mainly motor functions such as balance, coordination, speech or timing. However, what we tend to forget is that the cerebellum communicates very powerfully with the frontal lobes through 40 millions of nerve fibers (40 times more than the optical nerve and frontal lobes) in addition vision is located in the back of the brain so If you have been removed a section there it may be affecting at the beginning some vision function.
I know that you are stressed about not knowing an accurate diagnose and treatment but i can sense from your words that stress may not helping you mitigate those symptoms, since stress and anxiety can trigger powerful mechanisms in the brain making the symptoms to never go away. What you should really be focusing if possible is the plasticity of the brain. Your brain will regenerate neural pathways, creating new connections, strengthening existing circuits and helping to balance chemicals.
My advise it would be:
-Follow your doctor recommendations.
-Ask for a second and third opinion
-Follow healthy lifestyle choices reducing stress and anxiety. How: Add meditation techniques: 3 times a day 10 minutes each time
-Follow these movements: 1. Raise opposite arm and leg raise for balance, coordination and motor planning (left vs right brain hemisphere) 10 times. 2. Start tapping your feet at the same time you are clapping. As fast as you can for fifteen seconds. 3. Balance: From a standing position, raise one leg and hold the position for ten seconds. The change legs. 4. Follow the previous exercise with the eyes closed. 5. FInalize with lower back and upper back stretch. Do it twice
Again I am providing alternative treatment for a better brain body performance and see if that helps you mitigate the uncomfortable symptoms. When you train the brain in different areas simultaneously not only affect to different brain areas but also different chemicals.
Horrible Colors in Front of my Vision Field 24/7. Looks similar to TV Static, but in lots of different colors. See it worse at night or in a dark area. Never Goes away and I see it with my eyes closed too. Eyes have been getting 100% worse, and now it is sooooo hard to see objects close or far away. I feel like I'm both Near-sighted and Far-sighted now, when I was originally only near-sighted. Computer is so blurry can't hardly see it or read anything without having to strain my eyes to focus. Signs are blurred too, but not nearly as bad as back-light ones. It seems if something has a light on the sign/screen/etc. it is very hard for me to read it without getting pretty close to it. Regular non-back-lit stuff is easier to read that lit up stuff, but I still have a challenge. I see after-images too really bad when I look at certain things. Been to Eye doctors and they tell me it isn't a problem with the eyes.
Severe Joint Pain and "Pressure" ("Pressure" feels like someone is taking an air compressor and pumping my joints/bones up to the point where they would explode. Pain comes and goes, but the pressure never goes away.) Affects my Ankles, Knees, Hips the most. Sometimes it appears in my hands, but very rarely. Normally stays at my lower sections like I said earlier. Right now as I write this, I have severe pain only in my Left Knee and severe pain in my left ankle, and I have the horrible pressure in both ankles, worst in the left. I can also feel the pressure mildly in my hips, not sure about my knee as it hurts soooo bad (Worst than my ankle right now). Right knee seems fine though, but it acts up too at times.
Severe Brain Fog (Began as just annoying. It felt like I wasn't here, but it didn't really affect my daily activities. Now though it is SEVERE! It literally feels to me as if my brain is rotting. I feel like the whole top half of my head when my eyebrows are - up is totally non-existent. It feels like I'm missing it. I feel like I have no brain or skull at all for that matter. I'm scared to talk to others due to my severe Social Phobia, and this just makes me even worse. I can't think clearly, I have to strain in my brain to even think to myself. It's weird/hard to describe, but it feels my brain is full with something. So full I can't even think straight. I'm often in a daze. It's like a Blank Stare, but I know I'm starring. It just comes on, and for some reason it feels good until I get a horrible sensation in my head that feels like someone is rubbing sandpaper over my brain. I get that feeling even when I don't stare too though. I also get electric shocks that run down my spine or maybe even up it into the back of my skull and it makes me jump and holler/gasp out loud. Horrible sensation that I can't control.
Speech gets messed up to when I talk. (Began very minor with only maybe saying something different than I meant maybe once a month or less.) But now it is SEVERE. Every day, no just about everything I say has a chance for me to mess it up. I'll literally try to say something like, for example: I need to get the dog some more food, and it could come out like this, for example(Actual phrase that came out): I dropped the banana in the commode. WHAT???? I have absolutely no idea why that phase came out of my mouth. The doctors told me I must of been thinking of something to do with that phase that I said it, but I wasn't thinking of anything at all on those lines. Besides why in the world would it come out that way. If I was hungry, like they said I might of been, and wanted a banana why wouldn't it of come out as I want a banana or look at the banana or something along those lines???? I can't even talk to people without the fear of saying something stupid like that. I always end up doing it around my mom, and I know I'll end up doing the same in public or on the phone, so I avoid those situations. I was told if that would happen, just laugh it off and say I don't know where that came from. Make a joke out of it, but I have Asperger's Syndrome too and I really don't understand or feel comfortable trying to joke around people especially when I'm already stressed from my phobia. Being bullied pretty much all of my life in Elementary School up to High School didn't help anything at all that's for sure.
I could add other stuff too, but I'm trying to keep it as short as I can. Just a note that I'm having problems with my Bladder and Bowels too. Have a large Rectocele. Also have Spasticity in my legs according to a doctor I went to, and now my Chiarpractor told me in November that my lower back has no movement at all when she tried to do an adjustment. My upper back moved, but lower back wouldn't even give a little and she said that most certainly isn't normal. Especially for a 20 year-old.
Please help me with whatever info you could provide me with. I've been searching for answers for years but haven't got anywhere yet. Please HELP ME! Thank you so much, I greatly appreciate it!
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