Before decompression?

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Hello everyone

I'm now at last going to see my neurologist to clarify all the results from MRI EEG CT and other tests I can't remember some ultrasound on the neck.

I've only spoken to the receptionist today and she has read the letter being sent out to me asap it has a lot of medical literature on it which I didn't understand and possibly couldn't hear properly , I know she said MRI showes 3mm h tonsils and there are other complications shown two, usless I know I forget things a lot sorry .

My question is as I know I've got to see a neurosurgeon after how many of us CM's have been successfully reduced the symptoms without other complications after surgery .

Also as I've not found any other pain relief for the extreme headache and neck pain is there a possibility that this could be controlled another way?

To be honest I'm trying to look at the quality of life if I do have surgery and how to ask the neurologist about alternative solutions .

I know there have been a lot of support from you all who have had surgery and I admire you for that , I would so so like to get back to somewhere near I was which was extreme sports and a lot of physical outings as at the moment I'm housebound.

I'm very possitve in life as a problem is just finding the right solution .

If it has to be surgery then so be it but if I know the pros and cons I can take it with me to the neurologist.

At the moment I have constant headache and neck pain every day with bad tinnitus and loss of hearing in both ears.

Weaknesses in my legs and constant dizziness feeling drunk .

I collapse loosing all body functions and loss of speach .

I also shake most days some worse than others and get shadowing and black spots on my eyes if that makes sense and numbness of face and tongue.

So any information I can take with me would rely help make my decision .

A big thankyou to everyone take care Paul.

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6 Replies

  • Posted

    Hi Paul,

    I have a daughter who was diagnosed last year.  She had surgery shortly after as her quality of life was very low.  She's one of the fortunate ones from what I have read on this web page.  She had and still has numbness/tingling down her right side.  She still gets headaches (controlled by ibuprophen) other symptoms have gone.  She has been told no contact sports whatsoever just in case she has an injury to the area.  My advice to you is speak to a neurosurgeon ask him for his thoughts on whether it would be better for you to have the surgery.  good luck.

     

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    • Posted

      Hi whodatbritchick

      Thankyou for that it means so much to hear someones opinion I do hope your daughter stays safe and well many thanks Paul.

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  • Posted

    Hi paul,

    I have posted before on ur previous concern.

    Just to advise u that doctors really can not guarantee the out come of the decompression.

    It could help u with the headaches and the symptoms u r experiencing. Getting back to ur life after surgery, it can take time to recuperate, maybe weeks, months or years. Everyone is different. There really isn't any meds or treatments for chiari. The only answer is decompression, but of course the decision is yours. I don't know if ur docs have told u that the symptoms r going to get worse and development new ones if u don't get surgery.

    I'm going on my 7th yr since my decompression, I still experience some difficulties but nothing like before. I also was very active in sports and had a great career. I have accepted what I am able to do, every day I am able to do more. I do not regret having surgery and so does my family and friends.

    What ever u decide to do, I wish u luck.

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    • Posted

      Hi hope

      Good to speak to you again no one has told me all the symptoms can get worse and I thought surely my body couldn't produce any more symptoms lol.

      Your right it's a big decision and this is why I'm checking in with the people who know your experience has shown me that it is the right way, so a big thankyou again will keep you informed as to when and what has next do take care stay safe Paul.

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  • Posted

    Hi Paul, I think we may have communicated in the past.

    Your post tells me one thing, and that is you are having a really rough time of it. It would be interesting to see what else is in your letter, as it sounds like possibly more than just Chiari.?

    As  'hope' mentioned, the biggest outcome for decompression is to hope that your symptoms do not progress and that your headaches are relieved.

    You mention extreme sports! Well, need I say anymore! 😃 The last thing you need to worry about is that. Focus on trying to get back some level of comfortable normality first, before leaping out of a plane or something wildly exciting like that 😂

    I am 11 months post op, I was told to give myself 2 years for recovery. Even though the outside of the wound has healed beautifully, inside is still healing. I still have teething issues, but consider myself very lucky & I am content with that.

    So, be gentle with yourself after the op for quite some time, if you decide to go ahead with surgery.

    Let us know how you get on.

    All the best...... H

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    • Posted

      Hi Hayleybell

      Good to hear from you again the world I knew so well has crashed and lots of new things to resolve .

      In my line of work people used to say oh no what a problem and my answer was always problems are there to be resolved and never left so I'm treating this as the same .

      Your so right I need to think about now and not after and is so much easier with great people like yourself to look up to for a little push as I said to Hope I do admire your spirit.

      It's certainly a puzzle as to what else is wrong but I do know I've got to have a 24hr ECG and a heart scan this was requested by my neurologist so hopefully she can spread some light as to why I'm required to have this.

      Again so great full for your input and I'll keep you informed of any news do take care Paul.

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