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    Old 08-13-2008, 08:46 PM   #31
    Bearygood
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    Re: Chiari symptoms

    prtybleys, what a great, hopeful story! Glad you're doing so well.

    Cindy, I'm fine, thanks for asking!
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    Old 08-13-2008, 09:27 PM   #32
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    Re: Chiari symptoms

    Hi prtybleys~

    Your story is hopefully an inspiration to others out there who suffer from Chiari. Surgery is our only hope to stop the progression. You are very lucky that your journey ended there. Its so nice to hear that there can be light at the end of the tunnel.

    Thanks for sharing

    And Bearygood its great to see your doing well!! Its always nice to see you visiting and chiming in!!

    Have a great night

    Cindy

     
    Old 08-14-2008, 09:22 AM   #33
    Dpatt491
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    Re: Chiari symptoms

    Hi everyone,

    Thanks for the encouraging words, sorry I didn't respond sooner. I feel good about the surgery, I had a consultation with my ns and he actually is very experienced dealing with chiari and assured me that everything should be ok. It looks like I'm going to schedule the surgery for the middle of September. He did tell me that I have an impressive MRI, meaning that it's more than a cm herniation.
    I missed all the shows, the only thing I did see was the mystery diagnosis with the young girl, but I saw that before I knew what chiari was, you never know when one of those shows will touch you personally.

    Scout, I should have paid more attention to where my syrinx is, I think he said between C3 and C4, I'm not sure where that is, but I think it's high. When I turn my head, I feel pain in my upper back going up to my neck, so I think it's there.
    To bearygood, I just want you to know that I'm a big fan of yours, how you and cindy take time from your schedules to answer questions and give encouragement, despite the fact that you're in pain and at times need encouragment as well, is from God, we need you, and thank you.

    Derrick

     
    Old 08-14-2008, 06:31 PM   #34
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    Re: Chiari symptoms

    Hi Derrick~

    I am really glad that your comfortable with the ns. Did you end up going to Dr. Batzdorf? September is right around the corner. It'll be here before you know it. Keep us posted on things.

    You'll be in my thoughts!!

    Cindy

     
    Old 08-14-2008, 07:24 PM   #35
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    Smile Re: Chiari symptoms

    Hello, I'm new to this board and would love some help reading my mri. I've been diagnosed with a chiari malformation of 6 mm. I'verebellare suffered from headaches since I was around 7 yrs old and was diagnosed after a spinal fluid leak 3 yrs ago for no reason. I've had a cine mri which shows normal csf flow but I'm in so much pain every day now. Severe headaches and pressure in the back of my head from laughing, coughing, bending over, lifting.... My vision is blurry most of the time and my hearing is impaired from this. My neurologist says I'm not a candidate for surgery since the csf flow isn't being blocked so am I supposed to live on pain meds the rest of my life?? I'd love some feedback from anyone out there with the same symptoms.
    MRI states
    Cerebellar tonsils with slight protrusion through foramen magnum 6 mm. Several subtle increased signal foci on flair images, subcentimeter at periventricular white matter bilaterally, particularly at frontal horns. Major vessel flow voids identified with dominant vertebral arteron right. mastoid air cells unremarkable. Minimal soft tissue thickening of paranasal sinuses. Limited cervical cord with uniform contour.

    If there is anyone out there that can decipher the above for me I'd appreciate it so much !!

     
    Old 08-14-2008, 08:02 PM   #36
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    Re: Chiari symptoms

    Hi Susie!I am not an expert,but I also have a 6mm hernation and my last MRI in Dec.2006 also showed a thickening of the sinuses.At that time I was having lots of headaches and what feltlike pressure...I think inmyopinion it was from the sinuses,because I was dizzy for over 6 weeks.Did you think about seeing a sinus doctor....I only have a couple headaches a month now so I tend tothink the Chiari is not responsible for the pain...I have hardly any pain and we both have a 6mm herniation.Hope this infohelps you in some way.Take care. Scout

     
    Old 08-14-2008, 08:14 PM   #37
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    Re: Chiari symptoms

    Hi Susie~

    I am so sorry to hear that you are suffering so. Chiari can be a very painful illness. I would encourage you to seek out another opinion from a chiari specialist. I went to The Chiari Institute (TCI) in new york and they determine alot of factors as to weather surgery can be benefitial. I had to fill out questionairs and my quality of life was being greatly affected and surgery was offered.

    There are also many related disorders to Chiari which they also evaluate. I had a tethered cord as well, pulling my brain down. I was also diagnosed with cranio cervical instabiliy, causing me alot of nerve pain.

    So my advice is, alot of neurosurgeons are not well versed in chiari and if you are suffering, do get another opinion!!

    I'm not a specialists and cant help too much with the terminology from the MRI, but I am a fellow Chiarian who lives with daily pain. Its tough but there are specialists who are learning more about this illness and current treatments available to help.

    My heart goes out to you because I was where you were, being told there was no help available. I've had my 1st surgery and in less than 2 months, have seen a great improvement. I'm not done yet and do have more surgeries to get through but I'm fighting the battle!!

    Rest is the best medice. Try to take it easy until you can get proper care!!

    Take care~

    Cindy

     
    Old 08-14-2008, 08:20 PM   #38
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    Re: Chiari symptoms

    Hi Derrick...Thank you for the info...and I know that C means cervical spine(neck),because I have a slight buging disc in my cervical spine.Anyways I wish you well with your upcoming surgery and I will be saying prayers for you(happy to know that others here have faith in God).Thanks again~Scout........also I want to say Hi Cindy! and Hi Bearygood!Hope you are both having a good week....take care always.

     
    Old 08-15-2008, 01:46 AM   #39
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    Re: Chiari symptoms

    Hello,

    First of all to Susie, I'm no expert either, but from everything I read, a 6mm herniation is considered chiari I malformation, and I agree totally with cindy, there are not a lot of informed doctors out there, and it would serve you well to get another opinion. For me, so far surgery has been the only option, I'm not even on any meds! I take a couple of excedrine when I'm feeling bad and go from there.

    To scout, I had a feeling the "C" stood for cervical, my neuro gave me a dvd of my cervical spine MRI, but when I look at it, I can't see anything, I don't have a doctor's eye. I don't know doctor talk either, I was looking at susie's post and all I could say was "huh?"

    To all of you, again I say thank you! I am very nervous about the surgery, I don't know if anyone else watched the surgery on *******, but I did, and needless to say, I was grossed out. But without it, I know that I would probably go downhill with this disorder, I feel ok right now, but I do feel this ailment progressing, and I don't want to end up permanently disabled. So I'm ready. Thank you again for keeping me in your thoughts.

    Derrick

     
    Old 08-15-2008, 04:25 AM   #40
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    Re: Chiari symptoms

    Hi Derrick~

    I know its very scary going for surgery. And watching the videos really puts things into perspective. I was thinking the worst when I had my tethered cord surgery but in all honesty, It really wasn't as bad as I had antissapated. And i was back on my feet quicker than I had thought.

    We stayed at the variety house before and after my surgery, somewhat similiar to the Mcdonald house, which was right across from the hospital. Everone there had chiari and was having surgery. My hubby and I stayed a total of 10 days there and it was very inspirational to see all of these people come back after surgery and were doing surprisingly well.

    IMHO, it is worth going through it all and I'd do it again in a heartbeat!! As you said, it can be progressive and for me it has been. I was a very active woman, working 7 days a week, mom of 3 and on the go all the time. My life has changed drasticallyover the last 2 years and I am no longer that woman I used to be. If I make it to a grocery store in a day, I'm having a good day.

    The Chiari Institute treats tethered cord 1st so the decompression surgery will be down the road for me and I am ready to fight this illness and get my quality of life back.

    For you, Derrick, you are very lucky to have intervention early on and VERY lucky for an early diagnosis. I had a very long journey for a diagnosis and things went down hill quickly for me during this time. The Dr's at TCI believe that an intervention within 2 years of the onset of serious symptoms can be the most benificial. If the nerves are compressed for a long period of time, there can be permant nerve damage. So I encourage you that your being pro active and I'm rootin' for you all the way!!

    I'll be looking forward to your updates!! Take care~

    Cindy

     
    Old 08-21-2008, 01:18 PM   #41
    Dpatt491
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    Re: Chiari symptoms

    Good afternoon chiarians,

    Just thought I'd let you know that I have the date set for my surgery. It's going to be on September 16th, with some pre-op consultations on the 10th. Today I went to the hospital to take a "swallow" test. They wanted to do a before and after examination of how my swallowing has been affected by the chiari. The test wasn't that bad, but the stuff they give you to drink is pretty thick and nasty! Baryum I think it was called, should be called baryuck! Anyway, I survived it, and the countdown is on.

    Keep strong you guys, especially you cindy, I find it hard to answer people on the board because I have limited knowledge, but I realize that just somebody willing to reply, and say positive things, makes us feel better.

    Derrick

     
    Old 08-21-2008, 01:47 PM   #42
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    Re: Chiari symptoms

    Dpatt,

    Hello, I was diagnosed with Chiari 10 years ago when I was 18. I had my craniectomy in 2005 and did GREAT until I was in a car accident and was rear ended. I was in my husbands brand new truck (not even 2 days old) and she was going so fast that she actually ended up with the front of her car under the truck past the rear tires. It was not a fun time. Since then I have not been able to work and I am still fighting to get disability. I was a social worker and was in the field driving a lot helping people who where disabled and on medicaid.

    I get a lot of pressure when laughing, bending, stretching, etc. Even when I tilt my head to try and put on my makeup I get pressure build up in the back of my head where the skull was removed. I still can not lay flat on my back at night and I have found that when the pressure is too much I will sleep in a recliner and that helps ease it some. I do not regret the surgery in the least; my husband does not think that I would be here without the surgery; the pressure would build to the point my blood pressure would sky rocket and my nose would start to bleed. I even stroked out one time from the pressure making my blood pressure go up. This is not good for the body. The Dr stated that the minute they opened the cranium my blood pressure dropped and from that day since I have not been on blood pressure medication. It is amazing what can and can not be related to Chiari. I would be careful with straining; this can lead to problems. I fell going up the stairs (yeah, going up) because my stability is poor right now and I caused a small bleed on the brain and strained my occipital nerve. So be very careful!

    I know that this may sound cruel but I got a good laugh, so I hope that you will too........ The last time that I fell and had the bleed on my brain my husband went and bought me a bike helmet as a joke. I laughed so hard that I did give myself another headache. Don't get me wrong there are days when nothing is funny and I whine but there are times that you just have to see some kind of humor (even if a little twisted). It can help you out a lot.

    ( removed ) Just make sure that you stay up to date on things. I keep a daily pain journal to help me and my Dr figure out what has to do with Chiari and what does not. This has really been helpful. And always listen to your body, it will tell you if you are doing something you should not or if something is not right. Trust yourself and your judgment and do not push yourself; it can be overwhelming at times!

    Take Care,
    Niki

    Last edited by moderator2; 08-22-2008 at 05:33 AM. Reason: posted disallowed website(s)

     
    Old 08-21-2008, 02:24 PM   #43
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    Re: Chiari symptoms

    Thanks Niki,

    I appreciate the encouraging comments. Wow, you're still pretty young and making it through the pain with humor, I know I can do the same.

    I've been blessed with nagging, but not debilitating pain, I'm 33, and I have the intense pressure headaches, and sore neck, upper back, and shoulders, I get spots and halos in my eyes at times and have nerve pain in my hand, but despite those things, I feel like I can go out and live a normal life. By listening to you and cindy, I definitely know to stay away from auto accidents!!!

    The only time I experienced dizziness was about 10 years ago, I couldn't go from a lying position to standing without totally glazing over and falling. I almost killed myself while working on a 20ft. ladder, I went dizzy, thankfully my arm locked into one of the rungs and I was able to hold on and ride out the spell. After that I went to the doctor and they couldn't figure out what was going on, so they gave me some dramamine for motion sickness. Fortunately, (or unfortunately) the spells went away after about a month, and they've never been back since. So I've had symptoms for years, but was diagnosed in July.

    The advice on not pushing myself is very important, my doctor put me on restrictions, not to lift more than 5 pounds, but I have a 1 year old that loves being in her daddy's arms. Some things are worth disobedience. But I should be careful, better to not lift her now, than to take her for rides in my wheelchair, right.

    I will admit, I'm tired of doing research, there's so many different opinions of what to do, what not to do, have surgery, don't have surgery. The good after surgery, the bad after surgery, there's so much out there, but nothing definite, just opinions, I'd rather talk to you guys, who've been through what I'm going through, just makes me feel better.

    Derrick

     
    Old 08-21-2008, 06:31 PM   #44
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    Re: Chiari symptoms

    Derrick,

    Hello, we must have been posting close to the same time; I just saw that you are scheduled for the surgery in September. If you do not mind my asking who is your surgeon?

    I can also understand that there are times that you must lift more than 5lbs; that is my weight limit too. I can not seem to say no to my niece either when she wants to be picked up; I just try to head straight for the couch or chair with her. Sometimes it is worth the pain!

    If you have any questions at all about after surgery, please let me know. It can be a hard and scary time. I have had 8 surgeries (for multiple things) and I am facing spinal surgery; I still get nervous. A good hint; keep your hair short since they will be shaving the area. I went from having hair that I could sit on; to very short hair. The good thing was I gave over 24 inches of hair to Locks of Love. The short hair helped me keep the area clean and airy, since you can not get the area wet until the stitches come out.

    And you are right in the fact that there is a lot of information out there. I also find that talking to people who are going through this is a lot better than just reading online; sometimes it is more scary to read about it than talk to someone who understands.

    Take Care,
    Niki

     
    Old 08-21-2008, 07:19 PM   #45
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    Re: Chiari symptoms

    Hi Derrick~

    September is right around the corner. Think of the surgery as a step towards fighting the battle and you'll be fine. It is a scary venture but try to focus on something besides the fear for now. I know for me, I had thought my surgery would be worse than what it was. So I was very happy that I fealt so good so quickly. The barrium is definately yuck!! Like drinking chalk. But you made it through that and you'll make it through the next one too!!


    As far as lifting, Derrick, your little girl can enjoy her daddy's arms while you sit and hold her. I have neices who I used to always pick up but since I got sick, they wait for me to sit then clinb up in my lap for their hugs. Definately not something you want to miss out on. But on the other hand, when you do have to lift her, try to use your legs to lift, it takes the pressure off your head and neck. Enjoy your little girl while you can. They grow fast!!

    One last note. You definately don't need to have alot of knowledge to show support here. I'm sure others as well as myself, are just greatful to have someone to relate to that understands. Its a lonely world out there. You tell people you have Chiari and they just don't know how to react to it because most have never heard of it and they just put on a baffled face. So speaking for myself, the support we can offer here is like none other. Its just nice to have a place to go to share!!

    Keep us posted with any updates. You'll be in my thought!!

    Cindy

     
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