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    Old 01-17-2009, 06:45 AM   #1
    jellebeans
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    chiari

    hi,ive heard somewhere before that chiari can cause stomach problems but i cant find out any imfo on this. does anyone know if chiari can cause stomach probs and if so what sort of probs?? thank you

     
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    Old 01-22-2009, 08:11 PM   #2
    scout316
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    Re: chiari

    hi there "j"

    I haven't been on the boards in a long time....wow lots of new posters!

    Anyways...as far as chiari causing stomach issues...I really have not heard anything about that.Actually I think the chiari is not responsible for most of the symptoms everyone with chiari has.Sorry,but that's just my gut feeling...and from my own experience I think the whole chiari thing is crazy.My symptoms are just about completely GONE...so I know my low B12 was the cause of my symptoms along with the lovely menopause that put my mind & body thru torture...I'm Serious!

    I'm not saying chiari doesn't cause any symptoms...what I am saying is that as for myself I really doubt that the chiari caused me to have some 30+ symptoms...that are all gone now except for the occasional hot flashes.

    And I also thinks it's very,very odd that nobody with chiari seems to have the same symptoms.....well it's just a mystery I guess,but I have researched and asked tons of questions and my conclusion is>even the drs. don't know if chiari is the culprit in the variances in herniation and symptoms<

    I put my faith in God and I also don't have to put a load of cash in some greedy surgeons wallet....

    Sorry to be so blunt,but I hate to see innocent people being taken advantage of.Your symptoms may very well be from chiari,but who knows,because your drs. probably didn't do their part in thoroughly investigating your symptoms so the only hope you have now is that the chiari is responsible for all your symptoms.I'm so sorry you have been suffering for so long and I hope you will find the healing that you are looking for~
    hugs,Deb

     
    Old 01-22-2009, 11:28 PM   #3
    Benit
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    Re: chiari

    Quote:
    Originally Posted by scout316 View Post
    hi there "j"

    I haven't been on the boards in a long time....wow lots of new posters!

    Anyways...as far as chiari causing stomach issues...I really have not heard anything about that.Actually I think the chiari is not responsible for most of the symptoms everyone with chiari has.Sorry,but that's just my gut feeling...and from my own experience I think the whole chiari thing is crazy.My symptoms are just about completely GONE...so I know my low B12 was the cause of my symptoms along with the lovely menopause that put my mind & body thru torture...I'm Serious!

    I'm not saying chiari doesn't cause any symptoms...what I am saying is that as for myself I really doubt that the chiari caused me to have some 30+ symptoms...that are all gone now except for the occasional hot flashes.

    And I also thinks it's very,very odd that nobody with chiari seems to have the same symptoms.....well it's just a mystery I guess,but I have researched and asked tons of questions and my conclusion is>even the drs. don't know if chiari is the culprit in the variances in herniation and symptoms<

    I put my faith in God and I also don't have to put a load of cash in some greedy surgeons wallet....

    Sorry to be so blunt,but I hate to see innocent people being taken advantage of.Your symptoms may very well be from chiari,but who knows,because your drs. probably didn't do their part in thoroughly investigating your symptoms so the only hope you have now is that the chiari is responsible for all your symptoms.I'm so sorry you have been suffering for so long and I hope you will find the healing that you are looking for~
    hugs,Deb
    What about me and my B12 (and recently several cofactors) supplementation for 1.5 months? I can't say any of my worst symptoms have gone anywhere. Not yet anyway.

     
    Old 01-28-2009, 02:46 PM   #4
    Dpatt491
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    Re: chiari

    Hi there,

    the old timers are awakening!

    It's been a long time since I've posted anything, and the main reason why is I just haven't been feeling good enough to do it. I've had a rough chiari journey over the last few months. After my initial decompression, everything looked good, but I was still getting faint chiari headaches, so my surgeon put me on a medicine called diamox, he said that I had hydrocephelis and the medicine would help. It gave me migranes and caused brain fluid to build up in the back of my head, ballooning out.

    So my surgeon decided that I needed a vp shunt, which was my second surgery and is now protruding out the top on my head, whether it's working or not, I don''t know, but I do know that it took forever for the incision on my head to heal, and it still feels like if i smile too hard, I could split it open. Meanwhile, about two weeks after the surgery, the fluid build up was back, the doctors thought that the shunt may not be working or that there was an opening in the protective patch they put in during the first surgery. If it were the latter, they figured that it would seal itself up in time, but they wanted to take the extra pressure of the fluid build up off my head, so I went in to have a lumbar spinal tap.

    Now, don't read this if you have a weak stomache, but they wanted to do the tap, and put in a catheter, and drain the fluid out of my head. After the first tap, the doctor could not get the tubes to stay in my back, so he did another tap, then another, then another, yes four spinal taps at one time! Needless to say, I was suffering from the nerve damage then, and I still feel the effects now. They drained the fluid out, sent me home, and about two weeks later, the fluid was back. So I got another CT scan and it was determined that there was a pin hole sized leak in the artificial patch they put in, so the reopened my first incision, yes another surgery, in order to close the leak.

    I'm at home healing from that now, but I have a wierd feeling that this aint over. If anyone reading this has had this symptom, please let me know, because even my doctor hasn't heard this one before. I can tilt my head side to side and I feel fluid, like water, moving back and forth, it's as if everything's out my head, and it's filled half-way full of water, and I can swish it all around, my wife could even hear it swishing back and forth, it's the weirdest feeling.

    That's my story, sorry for not writing sooner, and again, thanks for all the encouragement and support.


    Derrick

     
    Old 01-30-2009, 07:29 AM   #5
    cindys601
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    Re: chiari

    Hello all of my board friends!!

    I have been away but have been thinking of all of you, Jellebeans, Scout and you too Derrick. I popped on today o find all 3 of you on one post. So great to see you all here again.

    Jellebeans, how are things? I feel I've deserted you in your time of needing support but I've needed the rest.As far as chiari and stomach issues, I know for me, I had severe gastro issues, pain, constipation, gas and it was horrible. I'm not sure what kind of stomach issues your having but I do know that chiari can cause bladder and bowel disfunction and that can case a mess in our tummies. My issues have nearly resolved since my tethered cord surgery. These issues were caused from the spinal cord being restricted and once that was released, I returned to almost normal. But depending on the problems your having. I know you were dealing with pain before. Does it seem to be caused from something in particular? I would be in pain if I ate salad. I love salad too but had to avoid it. Now I LIVE on greek salads. Once in a while I have pain but I take a gas relief product and it helps. If I can help, you know I'm around. just don't post all the time. But I do get an email when you leave a post. So if you need me, I'm an email away!! I'll leave a post and update you on my crazy life but I want to leave a message for Scout and Derrick too.

    I hope your getting some resolve!! Take care~ indy

     
    Old 01-30-2009, 07:39 AM   #6
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    Re: chiari

    Scout, my long lost friend!!

    How are you? Its been a long while but you have been on my mind. Things have been not so good over here with my pain so I haven't been able to keep the communication going.

    I'm glad to hear the B12 has helped and your feeling better!! Thats great news. And you know, maybe the B12 is your main issue and chiari is secondary with little symptoms. Everyone varies in how it affects them and many people go through a life span without ever having symptoms. And with that said,I think surgery should be done when the disease has progressed to the point of it affecting the quality of ones life. But thankfully, your not there and if I were you, I would be sceptacle of surgery too. For me, I need to try to regain some sort of quality of life because my disease has progressed quickly and fiercely!! I wish I had a choice as you do.

    I'm glad I got a chance to touch base. I've missed our chats. Hope all is well with the family!! I'll talk to you soon. Gonna go post to Derrick!! Yeah!!! He's doing ok. Take care~

    Cindy

     
    Old 01-30-2009, 07:48 AM   #7
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    Re: chiari

    Derrick!!

    Thank goodness your OK!! Scout and I have been very worried that we hadn't heard from you and assmed something was wrong. But here you are and your alive and got through all that mess!! I know its been rough but you survived it and I am so glad for that.

    I am so sorry that you have had such a mess since the surgery. It would have been sweet if you had the surgery and recovered to go back to life as it was. Are you going to have to go through any more surgeries at this point of are they just monitoring you?

    As far as the fluid in the head, I don't feel a sloshing around but if I press my head (anywhere) I can feel the fluid seeping into my sinuses. Weird this chiari is, isn't it? and everyone experiences differant things too.

    I hope you recover quickly Derrick. Try to rest and take things slow. You've sure been through alot!! I'll be sending you my warmest thoughts for a speedy recovery!! Take care

    Cindy

     
    Old 01-30-2009, 08:17 AM   #8
    cindys601
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    Re: chiari

    I figued I'll send along an update of my lovely life!!

    I thought life was tough before. I could only be up for an hour or 2, then down for relief. I hated being so limited with my life.

    So a while back, my GP decided I should be on an antidepressant. He has no knowledge at all about chiari. He thought, give me an antidepressant and my pain would go away. Another Doctor who believed anxiety and depression must be the cause. So I took it to appease him. Not much changed because for one, I'm not depressed. So he upped my dose. He then realized that the pain I was dealing with was real and said to me "thats not living Cindy" no kidding doc!!

    A week into the higher dose, my life that I thought was doomed, got worse!! Before, lying down gave me relief. Now, I was in pain up, down and all day long, no reprieve!! I was getting so frustrated. I have oxycodone but as most of you know, I'm very careful in my usage because I fear addiction. Well, even those didn't let up the pain.

    It finally donned on me that something had changed for me and what I would give to go back to my life of resting for relief. I figured the only thing differant was the zoloft, the antidepressant. Looked up the side affects and guess what? HEADACHES!!! GRRRR!! And tingling sensations and other neurological things that I l've with all the time.

    Knowing my Dr wouldn't know if this was what was causing my pain to increase, I emailed TCI. I did get a response that my nurse would ask my Dr. Of course, I never got an answer. So I decided I needed to take matters into my own hands. I stopped the Zoloft. But, Zoloft takes weeks to build up in the system and weeks to leave it as well. Its been 2 weeks and I'm finally able to lie my head on a pillow without it killing me. The good thing is it makes me appreciate that although I have to rest often, at east I can maintain a level of relief. So I'm greatful for that!!

    my fusion surgery is February 18th. Only a couple weeks to go. I'm definately not looking forward to the recovery but I am going in knowing at TCI I am in good hands. The tethered cord surgery was successful so I have hopes this will be too. I quit smoking almost a week ago. It was a must in order to heal from the surgery.They are putting a substance on the rods to hold up my skull and this substance will eventually grow bone over these rods. Smoking may prevent the growth so I decided to do it right and quit. Its actually been pretty easy. But when you know your health depends on quittin, It does make it easier.

    So thats my update. Life is surely interesting and ever changing living with this illnes but we get through somehow

    One more thing. I finally swallowed my pride and applied for social security. The intake person was awsome and very optomistic!! So theres hope.

    Everyone have a great weekend. Lets focus on our famlies and the good things that life has given us!!

    Cindy

     
    Old 02-04-2009, 01:52 PM   #9
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    Re: chiari

    hi everyone,thanks to those who answered the post about chiari/tummy probs.
    HI CINDY!!!! how are you? hope te non smoking is going ok for you,i too have stopped completly and feels so much better for it!
    i have app with neuroligist on 6th march and my doctor seems hopeful that i will get another mri which is great news for me as i wont be satisfied until i have a new one to compare against the mri i already have. as far as stomache problems go im sure they not chiari related,but im more worried about them than my head at the moment!! and cause it stomache and back pain i thought possibly it could of been the cyst thing in the spine but now i know it wouldnt be!ive had ultrasound done which was clear and am back to docs tomorro. im so sick of ill health and it seems when i do have a problem its nothing ever straight forward!!!! but i will keep you updated as usual as i really would like you to know the outcome at the end!!! it seems so strange to actually be getting somewhere with all of this after all these years,as long as neuroligist send me for mri i know ill be getting my answer ive been waiting for! and if its not chiari..who knows!!!...im sure the doc will say STRESS!! he he!!!! anyway i hope your op in feb goes well,will be thinking of you xx

     
    Old 02-04-2009, 07:39 PM   #10
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    Re: chiari

    Hi Jellebeans~

    It sounds to me like your Dr is really listening to you and willing to help.Thats great news!! Another MRI would be great. Maybe this one will be clearer. But as yo ualready know from your commnication with Dr B, there is something there or they wouldn't have suggested an appointment to you

    Its funny but when we dont have a name for our problems, its ust so frustrating to have people think we are crazy. Once we know there is a cause for why we are sick, it gives us peace of mind. Unfortunately, since my diagnosis, not much has changed for me but just knowing why its happening is a help!!

    I am so happy for you quitting smoking!! I did stop for a week but as the days get closer to "Doom Day" I am getting very stressed. I have heard some disturbing things about the fusion surgery and really feel like backing out. But deep in my heart I know that my health is declining and i have to intervine and try to help myself. No matter how scared I get. So I am smoking, but not like I was, 2 packs a day. Just a few a day. It calms me. And I need calming right now I'll be in the hospital 3-5 days so I know its over then. But you, keep it up!! You know thats one less health issue we have to think of when we dont smoke!!

    Your stomach issues really could be a chiari thing. But making sure everything else is ruled out, is very important. It does affect the nerves in our bodies so anything is possible.

    I am really glad we got a chance to touch base. You've been on my mind even though I've been off the boards. I hope your appoinment goes well. Let me know.

    Take care

    Cindy

     
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