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Keko
Keko

I somehow ended up on this website and felt compelled to sign up so I could reach out to you all. 

I have Chiari and POTS. I was decompressed in 2013 by a chiari specializing neurosurgeon. I have that 'pay it forward' mentality, because I remember being newly diagnosed and running hoops with clueless doctors. 

I co-admin a chiari support group on FB with over 1300 members and growing. It is a closed group - so your fb friends will not see your posts, which is nice to have that bit of discreet about it. Our chiari community is bully-free and has so much knowledge, love, support, and understanding.

Please feel free to join us. There is always someone there to help. You are not alone.

you can find us by searching: Chiari is for Real

2 likes, 8 replies

8 Replies

  • b2wc97455
    b2wc97455 Keko

    Posted

    Hi Keko,

    Very helpful information thank you

  • b2wc97455
    b2wc97455 Keko

    Posted

    Hi Keko, I really want to join this group but cant find it on the FB...anyway..how do you feel now after the OP..did you glad that you have the OP done..what medication did you take before and after the OP..did the OP change your Quality of Life for the better? please let me know.

    Thank you

    • Keko
      Keko b2wc97455

      Posted

      I consider my operation a success because my symptoms are less frequent and less severe. I am glad I had surgery. I saw one of the leading CM specialists in the US. Before my surgery I was going to pain management and was taking about 100-120 percocet 5s and idk how many muscle relaxers a month. My NL also had me on a terrible drug no one with CM should take.(topomax) It was supposed to help prevent headaches but it was not made for chiarians. CM is a mechanical issue so there is no preventative for us. My NL kept upping the dose until I suffered all the side effects which are coincidentally chiari symptoms - so I got to the point where I didn't know what was the pill and what was chiari; yet my NL refused to take me off it...insisted insist needed yet another up in dosage. I quit that med all together against her wishes.

      Now I have fioricet which, if taken at the start of a big cm headache, can help lessen, or all together kill the headache. I also have a muscle relaxer but I rarely take either. Mostly I just cope with the pain. I push through hoping and waiting for it to get better. Even so, I can do the things I need need to do in a day. Slow and with limits. But I can get it done. To me, that's great. Because now I am vertical. And that means I got my quality of life back...my sister relocated to help me with the things I cannot do, and help with my kids.

      As for my CM group, you should just type in the search field

      Chiari is for REAL

      It should show up for you. we are 1800 members strong. Please feel free to search us again.

      I hope I was able to answer your questions without being too long winded.

      All the best.

      Keko

      Emis Moderator comment: You can use the private message service to exchange direct links if this helps.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • b2wc97455
    b2wc97455 Keko

    Posted

    Hi Keko,

    Thank you for this information it really helpfull, what I dont understand is after operation why you are still taking the medication....so even after the operation you still have a limited thing to do..would you be to work...? anyway is topamax the same is topiramate?

    • Keko
      Keko b2wc97455

      Posted

      I do believe they are the same. You could Google it.

      Please understand....there is no cure. Surgery does not cure you of chiari. It merely helps lessen symptoms and if done correctly, takes the compression off the brain stem.

      Many chiarians post op take meds. And for many reasons including having comorbid conditions like EDS CCI IH and such.

      Me personally, I have a headache medication because I still have plenty of them. And a muscle relaxer for my neck which is in pretty bad shape.

      There are limitations after surgery because the head and neck have been operated on and you do need to be careful not to do certain things that can hurt you or cause what I call a flare. When your symptoms come on strong for a length of time.

      As I said, Chiari has no cure. Idk if anyone has surgery and walks away from it pain free for ever....fixed. but there is the point that your symptoms are lessened, less frequent and severe; and maybe a few could go away.

      On the flip side, opting not to have surgery, the chiari wont get worse but the symptoms will because the brain will continue pressing on the brain stem and that will continually wreak havoc on your body.

    • Keko
      Keko

      Posted

      I mean to say, I still take the headache meds because I still have plenty of ***headaches.
  • b2wc97455
    b2wc97455 Keko

    Posted

    Thank you so much Keko, did you think you make the right decision by having that OP?...why you still keep having headache..is it something else..nothing to do with your chairi?
  • b2wc97455
    b2wc97455 Keko

    Posted

    Hi Keko, can you share with me how is your condition now, are you glad that you have operation, if you could response to me immediately I would be most grarteful I AM SEEING MY NEURO SURGEON ON THE 9TH, IT SEEMS there is no one I can ask or share any where a part from this site, Laura (farmer lady) had given me a great advise , but I WOULD like to hear more from others, please please if you read from this message can you reply as ,.....ap..thank you
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