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i SUFFERED AND DIAGNOSED WITH CM1 two and a half years ago, I used to be Medical representative for a big pharma company and never like taking any drug due to the potential side effect of any drug(It is chemical-foreign substance to be injected or swallow through your body) I believe that if every person live in a healthy life you bound to have a great wellbeing - so I dont drink/smoke/free gluten etc, drink plenty of liquid, exercises at least 20 minutes - but one day I blacked out - taken to the hospital - found out I am very healthy person a part from suffered from Chiari - it is not disease - it was techinical problem in my body - despite my ademant not taking any drug I could not stand the pain-so I have to take the drug (drug that I used to promote to all health care professionals- really that were for anti depression - however my condition getting worse- I even becae a housebound as the chiari symptom were horrendous - my NS advice me to have a surgery - I refused it at first -but I was keep getting black-out even breathing, laughing, became an obstacle - I could not even walked properly w- if I walk for 3 minutes I would stumbled and fell. I finally surrender and undergone decompression - it should only be 6 days at the hospital, but I was at the hospital for 6 weeks, as the pain after surgery was unbelieble - I had to take some drug such as: steroid, opiod, normal pain killer would not helped at all, but my NS Mr Flint - he was fantastic - he suggested me to be patient accepting what I have, he also told me that patient who are not patience to get back on their feet 3-4 weeks after surgery nornally can go back for 2nd surgery - as the wound still not healing, you have got scars tissues, your C1 being cut - it will take at least 6-9 months before I could do slow exercise, but it does mean that you do not do any movement at all - this is a must, but my health care professional team, were really excellent - I was referred to pain management - I go 4 times a week for gentle exercises (Yoga, tai chi) then slowly taking a strol of being human and normal again, I am on 7 months after surgery - I am seeing Mr Flint next year - I still keep in touch with my primary care gp, I also keep in touch with my neurologist to keep him up to date how I am getting on - I take Mr Flint advise to take time and be patience - here I am - PAIN/ DRUG FREE. If I am worried of something - I will call either my gp or neurologist - and they are there happy to support me.
SO what I am trying to say here is:
1. If you are having this condition, please read on the website what is our condition is all about.
2. Express to your health care professionals how worried you are and how helpful if they can support you no matter whether they are unaware of this condition (my health care team - were really honest - that they know little about our condition- so we learned together)
3. Giving them a feed back of your condition weekly and the effect/impact on the durg you take will have lots of sympathy from the gp/NS/Neurologist because they feel that youare taking charge of your health.
4.Takin their advice after surgery also keep them up to date with your condition also will show your appreciation of what have they done to you
5.Reducing the take of the drugs as well as keep maintaining living healthly - if need be try to get some supplements that might help your healing process - but check with your health care team wether if that will interact with your medication.
LAST BUT NOT LEAST - ALWAYS FEEL POSITIVE - TAKE YOUR TIME NO MATTER WHAT YOUR STATE AT PRESENT - TAKE CONTROL OF YOUR HEALTH BY BEING ASSERTIVE AND PERSISTENT WHEN TAKING TO YOUR HEALTH TEAM. ACCEPT OUR CONDITION WITH THANKS - AT LEAST WE WILL SURVIVE - AND DONT FORGET TO KNEEL DOWN AND SAY GRACE TO OUR HEAVENLY FATHER.
MERRY CHRISTMAS AND HAPPY NEW YEAR - I HOPE THAT YOU ALL WILL GET BETTER (I AM SURE YOU WILL)
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