Chiari Online Support Group

The life I leave with a Chiari


#1

Hi, my name is Debra! I got on for a while but it’s been a long time! I have learned a few things that I want to share in hopes it might help others! I had 2 MRI’s done on my Chiari after I found out for sure I had one and both came back normal! Mine showed up on an EEG and we moved so the doctor up here looked like she did not believe I had one till she got my records! But she is a great doctor and knew I was telling the truth when she got results! So if you think you got one ask Nero for an EEG. Better yet, demand it! I am so very lucky that I have learned how to deal with mine myself without surgery! I went to chiropractors and physical therapy for 20 years before I started having worsening mental problems! I just had a doctor tell me that could have killed me, I know that now!!! I got lost going to my lung doctor who sent me to the neurologist to check for Alzheimer’s and Dementia and he found the Chiari. If he told me that day, I never remembered it but I don’t think he ever told me! It was 3 yrs later before I found out! I realize I am one of the lucky ones and thank God that mine is as much mental or more than pain! I have had to stop stressing!! It is something that has taken several years! I lost my job of 18 yrs and then 5 more in the next couple years. I would forget how to do what I was doing while I was doing it! My eyes would go out of focus and I would get a headache then my neck and shoulders would start hurting! I finally got disability after 2 yrs but that was 5 yrs from when I started going to neuro! But for those that have this and it is something they do not want to do surgery, here are a few pointers! Never get in a hurry! It is hard but if you push the worse it gets! When I am cooking and get too much going at once, I mumble under my breath and my husband has learned I need help! Now he just steps in like I ask him but I never said anything! I always start getting ready several hours before I have to go anywhere! I tell my husband when I am getting ready to pay bills or do anything that take concentration to leave me alone until I finish! Then I go back next day and check to make sure everything is right! I learned that Naproxen (takes swelling down) and muscle relaxers are the best meds for mine! I do not like pain meds but I take those 2 and a sleeping pill every night! I have learned that a massage is worth a million dollars but tell them what you have! I know this will not work for most of you but it has truly helped me! I still have a lot of brain farts as I call them but I decided I was not letting it over ride my life! If I feel myself tightening up I stopped what I am doing and take a muscle relaxer! I can take 3 a day! I usually only take it at night now! I love woodworking with a scroll saw but now I only do it for 10 or 15 min at a time! Also, getting on a computer or filing make me hurt! I was lucky that a general doctor saw on my notes from the nuero that I had one! He never agreed that was my problem and gave me all kinds of mind altering drugs which screwed me up more! I was an emotional wreck for 3 years! My doctors are amazed here because I smile a lot and laugh a lot but that’s what it takes! I have learned to laugh at the stupid stuff I do and I still get lost at times! But I always come out somewhere lol I am 61 years old and recently had an UTI, kidney stones, and a secondary infection! Later I realized I also had a pinched nerve in my back! I thank God for the pinched nerve because it saved me a lot of pain! I use a lot of ice and mineral ice and heat throw and pad and for the restless legs that goes with this in my case, I found Restful Leg Cream from CVS has helped a lot! Praying for you all!