TAKE GOOD CARE OF YOURSELF CHIARIANS

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HI THERE,

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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  • Posted

    You are right- Chiari is a congenital birth defect, not a disorder. 

    The pain killers won't fix it. About the only thing you can do is have the surgery to create more room in your skull for your cerebellum.

    The symptoms are a direct result of the cerebellum and brain stem being pressed against each other. The cerebellum coordinates voluntary movements such as posture, balance, coordination, and speech, resulting in smooth and balanced muscular activity. So typical symptoms are loss of balance, problems with coordination, speech problems, headache, neck pain. The brain stem controls the flow of messages between the brain and the rest of the body, and it also controls basic body functions such as breathing, swallowing, heart rate, blood pressure, consciousness, and whether one is awake or sleepy.

    I'm sorry your experience post surgery was so bad. Pain medication sometimes doesn't help.  Recovery can be up to a year. I know they recommend various therapies to help recover. The important thing is to be patient and not overdo things. 

    You are lucky to have a sympathetic doctor. Not all doctors are fully up to speed on what Chiari is and how to handle it.   The best thing I've been able to recommend to everyone is to research and get your medical records. Many hospitals have access to your tests, notes from the doctor, etc. that you can read, along with the MRI results. It is easier to handle the anxiety of having a rare condition when you are more informed. It also means you are better prepared for your doctor visit.

    It's also helpful to provide your family with information about Chiari, so they will know what to expect and can better assist you. 

    Glad to hear you are doing better!!! Hope you have a great holiday!!

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  • Posted

    Thank you for your wise and very true counsel. Eighteen months post op, still healing, and sometimes still have times where I try to live like I used to before chiari became my companion. But God has gifted me with patience I didn't know I could have. Thank you happy New Year, Elizabeth

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  • Posted

    Hey, I'm glad you're heading towards a positive direction. I'm seeing Mr Flint on Monday and was wondering whether you have any advice? Thank you.

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    • Posted

      First of all say hello from me: we are still keep in touch - jut say that your patient who live in Bournemouth sharing experience with you.

      Here what I asked hi when first time met him (I suppose you are seeing him for assesment or just appointment)?

      1. Thanks him for getting you to see him - how appreciate you are with this appointment.

      2.What does he think  about your condition

      3. Explain it to him how do you feel - (I put lots of things - as I suffered so much)

      4.How long would the operation would be

      5.What do you expect after operation - ask him to be honest with you

      CAN HE FIT YOU A S A P (seeing him for appoitnment does not mean you will be on his date for decompression) if you feel so bad (pain like me) let him know that ''YOU CANT SURVIVE WITH THE PAI''  otherwise you will be waiting for another waiting list (GOD knows how long for)

      6.In the mean time ask him ''WHAT SHOULD YOU DO'' as drug do not help you

      7. ASk his advice if he can advice you for any other thing that you need to be worried about,, while waiting for decompression.

      YOU ARE SOOOO LUCKY TO HAVE HIM.....dont forget to send my best regards to him - he will remember - tell him patient from Bournemouth - I will see him again in March - Let me know when is you  surgery

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