Moving On

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Saw my GP today for annual checkup. Doesn't think there is much more that any doctor can do about Chiari:

A. It's a rare defect. Hardly anyone has it, except those of us in group forums across the globe.

B. Doctors don't know much about it so they try to treat what they can.

C. Fewer Doctors are going into Neurology. So fewer to choose from.

D. Even if scar tissue is causing some symptoms post surgery, there is nothing anyone can do about it. If you try to laser scar tissue it comes right back.

E. So, my GP is looking at what other drugs I am taking that could be causing my dizziness, etc. Going to start going off meds- one at a time to see if I need to be on them and see if going off them makes a difference.

F. Next: Find ways to cope with having Chiari. . . . .

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  • Posted

    Hi I'm still suffering 4 years April just gone ....

    I also in April just gone ended up in hospital very poorly with viral meningitis on the brain with sepsis , ... since April i now no longer work and now rely on government benifit my husband does work full time though .

    Since my surgery 4 years ago April of Arnold charging malformation with sprynix I have in truth suffered .

    My wrists and hands are swollen every day .

    It originally took me a year to get back to work then four years later I no longer work .

    I have suffered with headaches tightening and sharp pains in and around my head.

    My elbows are now very painful and my shoulder .

    Is quiet painful .

    I have been told that there is some what brain tissue damage from the sepsis , viral meningitis and the surgery .

    I am now apparently open to get viral meningitis again and sepsis !!

    The neurologist is taking my case to his next

    meeting as there is he said s pronlem and he cannot see what to do as to go in and investigate would quiet possible be detrimental to me , so he is going to see if his colleges have any suggestions .

    I suffered alot and for some reason about 4. Months ago all pain relief drugs do not seem to do a thing to help me ! I can't take morphine , they have tried nearly every drug going but nothing takes away the pain . I manage it considerably well but if my back and stomach start at the same time I feel it's best in impossible to deal with it .

    Please excuse any errors in typing but quiet difficult going this some times

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    • Posted

      Hi yes 4 years ago April just gone I had 7 plus hours of surgery for arnorld charhimalformation with a sprynix decompression also with in that operation .

      Then April this year I got viral meningitis on the brain with sepsis on the brain .

      I have been told I'm now open to getting viral meningitis on the brain and sepsis again .

      Pretty crap really !

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  • Posted

    Before I knew I had Chiari I would have the dizzy spells every single time I would go from sitting to standing. I would have to pause for several seconds before proceeding with walking. My blood pressure would drop every time I would stand and it felt like a burst of pressure would rush to my head, almost like I was a bobble head lol. This was all day every single day for several years. Since I didn't know I had Chiari of course every doctor I went to prescribed me antidepressants which made me feel even worse so I would try the meds for 1 month then stop taking them when I didn't see improvement. I went to another doctor and told her that my GP had tried like 5 different antidepressants and they made me feel like crap so she suggested Vyvanse or Adderrall. She said most times people that don't do well on antidepressants do well on stimulants. I have tried both the Vyvanse and the Adderrall and my dizzy spells went away completely. Every once in a while (like once a month) I feel the pressure when I stand but nothing compared to what was happening before. It made my head feel more clear (less foggy) and helped the fatigue tremendously. I think it raises the blood pressure some and for me this helps to keep it from dropping so low when I stand. This is my theory anyway. At the time, we thought I was ADHD but now that I have an answer I know it's Chiari. Regardless, the ADHD medication is the only thing that I feel has helped me. I hate taking medications, hate pain meds- would rather be in pain than to take them, I don't drink alcohol or do drugs of any sort so if I don't see drastic improvement I will not take it, so for me to take anything it has to be a lifesaver. I am planning to have the decompression surgery next month and hopeful that I can stop taking the Adderrall. It is the only medication I take and even though it has helped I am ready to be done with medications. I am not sure what is the cause of your dizziness but if it's your blood pressure dropping then I wanted to share with you what helped me. Best of luck to you. Chiari sucks!

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    • Posted

      IT DOES SUCK!!!! The dizziness I have is probably an after effect of the surgery that didn't quite fix everything

      Today I had a total meltdown. Thought about taking an overdose of my Hydrocodone. Daughter talked me out of it. Sometimes Life just seems so freaking pointless.  I can't really overdose on that anyway cause it makes me itch too much. Then I have to take benedryl. 

      I can't think of anything positive to say- Guess I'll go troll people voting for Trump!! At least that can be somewhat amusing and god knows there is not much else going on that is amusing!!  Although Newt going after Megyn was pretty funny!! 

      OK: Here is my positive observance of the day. I got my dog a new toy that is a black cat with a noisemaker inside. It sounds like a squealing cat and then goes screetching. My dog loves it!! So she was playing with it and then started howling or "Singing to it!!!" 

      Take Care!!!

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    • Posted

      I hope your feelings and mood should pick up , although unless your a happy freak of nature it is hard some days very hard . I'm totally in agreement on that one !

      I get peed because I spend so much time at home I don't drive maybe a good idea I don't other wise that could be more of a depressing thought !

      I wish there wa more positivity in me but there isn't.

      I randomly get stabbing Sharp pains In my head and they bloody hurt .

      Get fed up of no drugs helping me at all , I'm on the list for January again to start the pain management course I'm praying praying helps . 😣

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  • Posted

    Hi Linleel,

    I had my surgery in May. I thought it was getting better. But my symtoms keep coming back. Just had botox (31 shots) in head and neck. I am not having my usual stroke like symptoms but the headaches haven't gone away. My nuerosurgean is sending me to pain management MD for occipital nerve block. and not sure what they will do about the bulge disc in my neck? I don't take any pain medicine, except ibprofen. I can't stand the way they make me feel, but my headaches are getting bad again and I don't know how much longer I can stand it. Coping is hard, but I just keep going, trying not to think about it to much. I work full time, come home and rest. My days don't include to much activities anymore. 

    I just keep hoping that the treatments will help.  I wish you the best and I will pray for you. Best Wishes 

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