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    Old 08-22-2008, 02:47 PM   #46
    Dpatt491
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    Re: Chiari symptoms

    Niki,

    Hi, thanks for the reply. My surgeon's name is Dr. Michael Dogali, he works out here in Fresno, and he is a chiari specialist. He made me feel good about his credentials, saying that he does about 10 of these surgerys a month, so now I'm in his hands.

    As far as my hair, that's one things that as a 33 year old balding man that I'm not too much worried about, actually I was thinking about shaving all my hair off in order to save them some time.

    Anyway thanks for looking out, and you all try your best to have a pain-free day. I'll keep you posted.

    Derrick

     
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    Old 09-12-2008, 03:29 PM   #47
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    Re: Chiari symptoms

    Hi guys,

    Well, the 16th is almost here. I've had my final pre op visit and check-ups. It seems as though these last few days have been the most painful for me. They told me that the only headache medicine I could take was Tylenol, but that never seems to work well for me, so I got the PM kind and use it to sleep. If there's anything any of you have used before your surgery that helped you out, please let me know.

    Derrick

     
    Old 09-12-2008, 04:33 PM   #48
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    Re: Chiari symptoms

    Hi Derrick~

    The count down is on!! Hopefully soon you will be getting some resolve to all that you've had to deal with and you'll be feeling better real soon. As far as the headaches, I can comepletely sympathize with you. I have been in a bad way these day with the pain and pressure.

    Up until this point, I have refused narcotics for pain because I don't want to get dependant so I've taken none. I was prescribed neurontin which is for nerve pain. It doesn't help. Neither does tylenol. I have been lucky enough to have been able to manage my pain by laying down before it gets out of control. If I stay up when the pain level is increasing, I'm done for and can't get rid of it even laying down.

    I have found using Ice packs do helps. From what I've learned, the brain can only feel one sensation at a time. It can't feel pain and cold at the same time. So this is very helpfiul. But of course, once you remove the cold and you become normal body tempature, the pain does return. I have a freezer full of a variety of ice packs so I can alternate them. I even bought ones that strap on, to be used on the body with velcro. I wrap them in various positions on my head and neck. My family tease me about how foolish I look and even take pictures just to give me a hard time. My response is at this point, comfort is more important than beauty.

    For the past month, I've really been in pain. Rainy stormy weather does me in and in the south east, we've had too much of this all summer. I finally decided I just can live like this any more, lying down all day and it affecting my quality of life. So when I get really bad, I've used oxycode, which the hospital gave me after my surgery. They're only 5mg and really just take the edge off, but they definately don't make me pain free. But I've had to do something.

    So I went to my PCP on Tuesday to discuss this with him. I told him I'm at the point where I need help but expressed my fear of dependancy. He agreed comepletly that I should ony use the oxy in an emergency bad day level. He gave me a high dose of naproxin which is an anti inflamatory and told me to take this consistantly and in a month, if it hasn;t worked, come see him and he has some other tricks up his sleeve.

    It has helped some, again taking the edge off. He said that I will most likely have to deal with some level of pain but if we can lessen it then we should be happy with that. So the last few days, that has been going ok. This afternoon, the pain hit me hard!! I tried to hold out but in the end, took an oxy. My hubby called me from work and I told him I'm in a bad way and sure enough, he said a storm was heading our way. So I was glad I decided on a pain pill to get through.

    It's really a tough thing to deal with Derrick. And at times we cope better than others. If after the surgery, your still having alot of pain, find someone who you trust, to work with you on managing your pain. I have alot of faith in my Dr and am really glad he's working with me on this with the same feelings I have about narcotics.

    But for you, my friend, I have high hopes that you will be the lucky one to go through the surgery , have a speedy recovery and are able to say in the end it was successful and you feel so much better. I'll be thinking of you on that day and will be sending you my wishes for good health to come.

    Please keep me posted when your up to getting on the PC. I'll be looking forward to hearing from you soon. Best of luck!!

    Cindy

     
    Old 09-13-2008, 05:12 AM   #49
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    Re: Chiari symptoms

    hi probably a stupid question but what would happen to a person with chiari which went undignosed.....in other words someone who didnt know they had it. could they die from it? i ask this as since a bang on the head 8 years ago while pregnant ive gone from a healthy active person to someone whos constantly in pain and having weird symptoms! main ones being severe headaches,intense shooting pains in the head,dizziness,neck problems,chestpains,tinglin,i also have hand/wrist pain.the list goes on and on!!!ive had 2 scans a few years back which were normal so doctors say ive just severe daily tension/migraine headaches. i really feel theres something more behind this than just headaches.ive given up going to doctors now as they seem to think im fussing over nothin,easy for them to think that,there not the ones in pain everyday for 8 years.even though some days are much better than others i do have pain every single day and chronic fatigue.im only 31 but i feel 100!!!!

     
    Old 09-13-2008, 06:30 AM   #50
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    Re: Chiari symptoms

    Hi Jellebeans~

    Your question is definately not a stupid one. I remember when I 1st learned about chiari, I worried about the same things. The mortality rate from chiari is rare. Most deaths from chiari are caused from patients who have sleep apnea and are heavily medicated with opiates (pain meds) which can lead to respitory arrest. Chiari does affect our infoluntary functions such as heart rate and breathing so that is where the problems lie.

    The problem with leaving chiari untreated is that it is pressing on our nerves, causing all of these symptoms to occur. If left untreated, it can cause permanant damage. TCI (the ChiariInstitute) which treats Chiari and its related disorders, say that it is best to have intervention within 2 years of the onset of severe symptoms for the best results of recovery.

    From what you've discribed, you should definately look into the possibility of chiari. Alot of people experience worsening of symptoms after child birth and a head trauma ( bumping of the head). Did you have an epidural during your labor? I ask you this because the changing point in my life was when I had a spinal tap. When the pressure in the spinal fluid was disturbed, my symptoms increased. Also, chiari patients are warned not to bear down to have a bowel movement and to use stool softeners to avoid this. Well, lets face it, in child birth theres alot of bearing down. My symptoms began in my child bearing years, in my early 20's. Though they were minimal, I had alot of strange tingling, I now know that my births and epidural probobly got things in motion.

    An MRI is the only test to show chiari. When mine was done, my MRI said normal, no findings. I had copys of my MRI and compared mine to a normal brain and one with chiari and found my own diagnosis. So many people go undiagnosed for years because Dr's don't know about it and don't look for it on an MRI. Unless it is an extreme herniation, it gets unnoticed. Smaller herniations can certainly cause the symptoms your describing.

    I feel so badly that you've suffered for so long. And I do understand your frustration with Dr's thinking your a cronic complainer and they can't find anything wrong. I went through this myself and they made me feel like I was crazy. It was horrible. But the daily pain you feel I only know so well!! And the cronic fatigue too. I was forced to give up my buisiness do to all of this. This is real and know one will truly understand unless they walk in the shoes of a chiarian or someone who lives in cronic pain for that matter. Being 31 and feeling 100 is something I know too well

    If I can answer any questions or help in any way, just shout out. You definately need some answers after so long you've suffered. I'm here if you need anything. But what you really need is to find a Dr who will listen.

    Take care

    Cindy

     
    Old 09-13-2008, 08:08 AM   #51
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    Re: Chiari symptoms

    Hi Cindy,

    Thanks for the support, I did notice when I used an Ice bag, I felt better, I'll have to invest in more and different kinds. I sure hope you are able to manage your pain, and the advice to have those to support and care for your well being will be followed. My mother is flying in from Detroit, and I have tons of friends here in Fresno who's said that they are coming to the hospital on the day of the surgery. I will probably write about how I'm feeling on Monday, they as soon as I can after the surgery. Keep me in your thoughts and prayers.

    Derrick

     
    Old 09-13-2008, 08:15 AM   #52
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    Re: Chiari symptoms

    Hi Derrick~

    I'm really glad that you have a big support system with family and friends People to look over you and help you through this. I'll definately be sending you my virtual support as well and look forward to hearing how things go.

    Good luck!!

    Cindy

     
    Old 09-13-2008, 03:17 PM   #53
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    Re: Chiari symptoms

    Hi Derrick....you are in my prayers too....you are a brave person and I'm sure you will recover with no problems,because you have a positive attitude and that means a lot!!!!

    My friend who had the surgery said she was up and about not too long after it...they only shaved a small area right above her neck on the right side.The scar isn't that bad either!

    I think it's great that you have a doctor that you can trust.You will be fine and hopefully the pain and other symptoms will be a thing of the past.

    Many blessings,
    Scout

     
    Old 09-13-2008, 03:25 PM   #54
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    Re: Chiari symptoms

    Hi jellebeans(I love your name!)...I'm here for you too!Yes I agree with Cindy(always!) that you should have an MRI....that's the only way you'll know.In the mean time don't get stressed about whether you have Chiari or not.You will get thru this!We are all here to give you support.

    Nice to meet you!

    Scout

     
    Old 09-13-2008, 03:43 PM   #55
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    Re: Chiari symptoms

    Hi Cindy!I didn't want to miss the chance to say hello to you.I hope you made it thru the back to school thing!I hope you're having more better days now.

    How long has it been since your tethered cord surgery now?I was just wondering if the doctors told you how long the complete recovery from that surgery takes.Also would the decompression surgery alleviate the pain you have now?As always I'm a little confused about Chiari....my heart truly goes out to you.So I do exactly what you do...rest when I need it and do what I can(although I am known to overdue things when I have normal days!).

    Please know that I'm here for you...I know you are here for everybody else,but you need people too!

    Thank you Cindy for being such an inspiration to all of us here!
    Hope you have a lovely weekend(pain free).

    Scout xx

     
    Old 09-13-2008, 05:36 PM   #56
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    Re: Chiari symptoms

    Hi Scout~

    Great hearing from you!! My daughters back in school so the lazy summer is over!!

    I had my surgery june 16th. They said recovery is about 2 months. I'm due to scedule my next appointment at TCI. I most likely will need fusion surgery, which is when the fuse the skull to the neck, lifting the skull so it doesn't compress the nerves. Sounds fun huh? LOL Then the decompression surgery if the fusion doesn't do the trick.

    I definately have to build up my courage to do the next step because I am in constant pain these days. Its really tough. I get up for an hour or so then am forced to lie back down for relief. So my hopes are the surgeries will help relieve some of my symptoms. But theres no guarentees.

    Be careful when you feel good, not to overdue. I am like that too but have learned my lesson quickly. You may pay for it later. How are you feeling lately? I hope your good days are more so than the bad.

    Thanks so much for your support scout. It means alot to me to hear that.

    You take care

    Cindy

     
    Old 09-14-2008, 08:14 AM   #57
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    Re: Chiari symptoms

    thankyou cindys601 and scout316 for your kind replys.ive been to doctors and hospitals constantly a few years back to the point one doctor told me very nicely he thought id mental problems!! since that id given up tying to find out whats wrong with me and just get on with things the best i can,but as you know with pain it gets you down ,i think the hardest part is noone really believing me,not just the doctors but friends and family also,my partner is sick of me saying how ill i feel all the time so now i just keep quiet and suffer!!! you say you checked your mri yourself,i actually have both my scans in my loft which im going to try and find this week,how do i know what to look for as i dont have another scan to compare against. ive tried taking my scan straight to a neuroligist at my local hospital to be checked for chiari as when i had them i think they were just checking for tumours.but neuroligist wouldnt look at them without me having a refferal,my doctor would not reffer me again and i cant pay for app as i paid for my scans which cost a fortune! x

     
    Old 09-14-2008, 09:05 AM   #58
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    Re: Chiari symptoms

    Hi Jellebeans~

    It is heart breaking to hear how we can be treated as human beings by the medical profession. And its horrible because so many people like you, give up and are left dealing with this all alone. Your not alone. You have us here and we understand!!

    Let me tell you about my 1st neurologist appointment. Of course you wait so long to get in so when you finally get to see them, theres hope that you'll get help. At this point, I had no tests done and had only seen my PCP. This guy ran some blood work and then handed me a script for lyrica. I asked him why he was giving me this and he said for the pain. Then he danced around the idea that I had fibromyalgia.

    I asked him how he could diagnose me until he ruled out other diseases and asked him to do an MRI. He said that theyre costly and he wouldn't waste money on them. I became so emotional and started to cry. He slammed his pencil on his desk and told me to go see a councelor. Because I had shed tears, he was blaming this on depression. It was horrible.

    But when I got out to the car, it got worse. I was ranting and raving about this guy and my husband calmly looks at me and says "maybe he's right. You have been under alot of stress lately" I was so mad and hurt, I wouldn't speak the whole ride home. Now that I have a diagnosis I;m finally believed and its such a relief. Of course, without the MRI, I never would be diagnosed. I never gave up and found another dr. I fired that 1st guy that day

    But you need a place to let this out and I can understand how you keep quite for your partners sake. But what about you? Holding this all in is not good. Come here and vent when you have to. Thats what these boards are good for.

    As far as the MRI, I looked up on the internet a brain with chiari and printed it out for comparison. A normal brain, in the back sits up high, straight across. A chiari brain has tonsils as they call them. The brain is crowded and the brain is being squeezed down into the spinal cord so it kind of slopes at an angle. The tonsils are in turn, putting pressure on our nerves in the spine. When I compared mine, I took a ruler and could see a definate slant. I hope I've explained it so you understand. If not, just ask and I'll be glad to answer any questions. If you notice something with your own eye, you can go from there.

    Let me know how you make out

    Cindy

     
    Old 09-14-2008, 09:17 AM   #59
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    Re: Chiari symptoms

    Hi jellebeans! What you might want to do is research chiari...I found that the mayo clinic has quite a bit on it and they'll show you a picture of what chiari looks like.Basically it's part of the hind brain extending a bit into the spinal canal.My herniation is 6mm...that doesn't seem like a lot,but it does present with it a whole lotta symptoms!

    Hey I know so well what you're going thru.My husband was the same way,but it was hard for him to understand why I was so disabled,because the drs.(quite a few of them!) kept saying they couldn't find anything.The MRI was what finally saved me from going nuts thinking I was really nutto!All I heard before that was that I had anxiety and mental problems with that.I actually told this one dr. off,because he said he did everything he could and there was nt a thing wrong with me....hee hee hee....well I went backto him and told him what the MRI showed and he was speechless and then hurriedly said that I should see a specialist.I found out later that before he decided to be a family doctor he was the doctor for a high school football team...go figure!

    Anyways you're not mental so don't even think about any of the negative feedback anyone gives you.You know you are not well and you have to be strong,persistent and not give up.So many people are going thru issues with their health these days and I think there's a lot of drs. who really don't want to take the time to investigate symptoms...they just chalk it up to depression/anxiety.

    Also conquer chiari was the first place I researched that had lots of information on symptoms,etc.Just don't get overwhelmed reading about it.

    Have a good day(pain free)!
    Scout xx

     
    Old 09-14-2008, 08:50 PM   #60
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    Re: Chiari symptoms

    Hi jellybeans,

    Of course I'm in agreement with scout and cindy, but one thing that I can really say is that the chiari headache has it's own special features, and if you describe these features to your neurologist, then he may look a little closer at your scans. I told my doctor that I had intense pressure that would build up in my head whenever I sneezed or coughed, or even laughed, and sometimes it would be so intense that I thought that something was going to pop. My doctor didn't have an answer for that detailed of a decription of a headache, so he had to order my scans, and the scans showed a 1 cm herniation.

    So try to be as specific as possible, and maybe you can humble you doctor enough for him to check for Chiari. It's sad, but it really seems that women have a lot harder of a time with these doctors, no one ever told me that it was in my mind. I guess that's just the world we live in.

    I hope everything works out for you. And even though I don't know you, I can say with confidence, "I love jellybeans!"

    Derrick

     
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