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    Old 10-01-2008, 08:06 AM   #16
    lroberts21
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    Re: DX with chiari

    hey Cindy, i wish i had all the knowledge of this as you do. I guess its all so new to me. I have never even heard of the word untill about a month or so ago. ( removed ). In the world we live in you cant go a day without hearing something bad about a health issue or someone having cancer. ITs all scary. You know i told you i went to Duke ER here in Raleigh last week. I was blown off,so i really dont know where else to go.

    My primary care Dr doesnt even think i have chairi. So talking with any of my Drs at this point is really no good.Its sad that you feel like you cant get the help you deserve. The only thing that is certain is all the nice medical bills that keep rolling in. They make sure they come.

    Do you work anywhere? Just wondering. My job is getting fed up with my problems. Sad,isnt it. I ( removed ) feel like no support at all.... I wish there was a magical dru that would make all of this go away for us.I hope you are on a good recovery Road. Who is doing all of your surgerys? Lisa

    Last edited by moderator2; 10-01-2008 at 08:21 AM. Reason: please add a space between your sentences - also, no discussion of your profession, as per the posting policy - please read the posting rules

     
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    Old 10-01-2008, 08:40 AM   #17
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    Re: DX with chiari

    Hi lroberts~

    I still have so much to learn. This is all so knew to me too. I learned of chiari late last year when I found it on my own MRI that was read as "normal". I just plunged in, learning as much as I could. It was so hard in the biginning because my own Dr was starting to think I was crazy. They just don't understand it and its up to us to educate them. Sad but true.

    Knowing how many Dr's I was seeing and getting nowhere fast, I decided I was going straight to the top!! I cancelled any local appointments sceduled, and set up an appointment at the Chiari clinic (TCI) in New York. I knew it would be an out of pocket expense because my insuance wouldn't cover it. I saved the $550.00 and waited nearly 3 months to get in. But it was the best decision I made. I knew my frustration level was high dealing with all the under educated Dr's here.

    I went to TCI and for once, I fealt like someone understood. That was a good feeling. I then gathered all my paperwork and went to my neurologist and GP at home and informed them that TCI had confirmed I had chiari and was going ahead with surgery.

    I think in they're eyes, I had taken control and they had to accept my diagnosis. Both of my Drs today treat me differantly now and when I need them, I go. My GP says that he only knows what I've told him so he really isn't alot of help but at least now, he has more respect for me.

    Your right though. We hear cancer, and everyone says "oh, thats so sad" because they know the word and what it means. You say Chiari and they clam up. So the only way you'll get care when you need it is to arm yourself with knowledge and confidence in what you know. And if a Dr is not repecting you, go in and tell them that this is what you have and ask if they're willing to work with you. If theyre not, find another.

    I did that with my GP. He made me so frustrated, I was bawling. I told him that he may want to give up but I wouldn't. I will get help on my own without his help. He knew I was angry. The next day he called me at home. guess I hit a nerve

    I gave up my buisiness in April and it was the most difficult thing for me. I was a single mom for many years and I worked 7 days a week to provide for my kids. I was re married in 2001 to a wonderful man who treats me very well and supports me with my illness. But I never would except money from him because I was too independant. I didn't want to depend on someone, I wanted to be able to provide for myself and family. Weird, but I had alot of pride and I'm very stubborn. He would buy our family things, take us out and that kind of thing. But I struggled for years working my butt off.

    6 years ago, I took over our family buisiness, which is very lucrative and things changed for me financially. We finally had money to do things we could never do. But it was working 7 days a week, 365 days a year.

    Then I got sick and tried to keep up with everything. I was comepletely spent. I had to make a huge decision and I told my parents I needed to take care of myself and I gave the buisiness back. I swallowed my pride and told my hubby that it was his turn to provide. He excepted this with open arms but I struggled with giving up my independance. I still do.

    But I am fortunate that I have an online auction store that I did in my "spare" time. It was doing very well so I continue with this and I can work at my own pace. Its all about finding a way to get through.

    So as you go, you'll need to adjust your life and find a way to manage things that work for you. My sympathies are with you trying to keep up with work and little ones. Its all gonna take some time but you'll find a way to make it all work

    A magicle drug would be nice, wouldn't it!!!

     
    Old 10-03-2008, 06:37 AM   #18
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    Re: DX with chiari

    Hey Cindy,
    Well Yesterday was my little girls 2 year b-day.I had prayed for a good day,instead i couldnt hardly get out of bed.I was in so much pain & weak.I dwelled in sorrow of how things used to be & the fact i was normal when she turned a year & now its like this.I have appt for next WEd with a neurosergon in Raleigh.When i talked to his nurse yesterday to tell her how bad i was hurting.SHe said he doesnt see very many PTs with Chairi.So how will i know if he can help me.What questions should i ask & will he know that all my symptoms have to do with chairi?? I just want to get the best help i can with this.I feel like i'm getting worse.I keep having these sharp pains in my back esp when i breath.

     
    Old 10-03-2008, 10:28 AM   #19
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    Re: DX with chiari

    Hi lroberts~

    I know what its like to feel the way you are feeling. Many days when I'm in alot of pain, I think to myself thats its really so unfair to be in this situation. And thinking back to a year ago and how things can change so fast, its very frustrating. I'm so very sorry that your going through this and on your daughters birthday to boot.

    But right now, you really just have to think of not what you've lost, but what you DO have in your life. Trust me, things don't seem so bad when you try to look at your life as 1/2 full, instead of 1/2 empty. I have my days where I get down too. And it definately takes a certain mind set to pull yourself up. And I flip flop from day to day so know your not alone, ok?

    Seeing a neurosurgeon who doesn't see many chiari patients is going to be tough, depending on his knowledge and his open mind. My advice is to go in there armed with knowledge about what you do know and be strong. Try, and I know its hard when we feel frustrated, to show yourself as a confident person and explain what you have learned. We'll both keep our fingers crossed that he is receptive. If he's not, you move on. Nothing gained and nothing lost.

    That pain when you breath is definately a concern. Do you think maybe you should have your lungs checked or maybe an xray, just to make sure theres nothing wrong? Don't dismiss all your pain with chiari. It may or may not be related.

    Try to get some rest if you can. I know its hard with the kids but do what you have to do to get through the day. everything that doesn't get done, will be there tomorrow.

    I feel lousy today. My head hurts bad and I am totally exhausted. I dropped my daughter off at school this morning and came home and relaxed on the couch. I think a nap is what I really need. So, I just listen to my body and today my body doesn't have much to give

     
    Old 10-03-2008, 12:04 PM   #20
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    Re: DX with chiari

    hey there Cindy,
    Today has been ok,i'm still having that bad back pain along with the sharp pain when i breath.So,i thought well i'll make a trip to ER.Then again,they will proably dismiss me again.i'm wondering if my shortness of breath is anxiety related.GOD,i hope i dont have a lung problem too.I've never smoked in my LIfe.Funny,though these days it doesnt matter. People do bad things to their bodies & it seems like they are the ones living just fine....I want to have all my facts right when i go to the Dr on Wednesday.I want him to know that i do have some knowledge of it now.Well,i gotta say you have answered alot of those questions for me.I just want to leave with some relief that its going to be ok.Just in time.I think if i were told that things will get better,i would have a better time with dealing with this.ITs the not knowing thats killing me.I mean when you have been so sick & hurting fo so long.Theres a point when you want to give up & think theres no light at the end.I have Faith.I think its being tested big time.I hope you were able to get some rest today & her head is feeling better.Oh yeah,when you had the surgerys you were asleep right.What i mean is i talked to a nurse today who works in the intensive care after the pts get out of surgery & said they are really sick afterwards for like weeks.Thats scary to think about.I think i would feel better if it would make these awful pressure feeling go way in my throat!!!

     
    Old 10-03-2008, 01:06 PM   #21
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    Re: DX with chiari

    Hi lroberts~

    I hope I ddin't scare you but I would think its better to have them check your lungs and say there is nothing wrong with them, to give you piece of mind. It could well be a chiari thing because we get weird pains all over from time to time. But if it were me, I would get checked out and not even mention the chiari thing. Just that your having pain in your back when you take a breath and your concerned. Then you wouldn't get the brush off.

    And you could be right that anxiety could be causing it but I know how I hate to hear someone say that so I wouldn;t dare!!

    It is really funny that the people who smoke too much, drink too much and so on, get through life with out having any major health issues and otherss get sick, even though they do everything in their power to stay healthy. I guess the old saying goes, whatever is meant to be, will be. For some reason, we got here, so we make the best of it

    I'm glad I could answer some questions for you. But I really don't think anyone can give you 100% guarentee that even surgery will fix everything. It could and we can be so very greatful. But if it fixes some, but not all, then we just have to except what life has given us. Whatever the outcome is, trust me, you'll be ok.

    I know you probobly don't want to hear this but it could be worse. We could have been diagnosed with terminal cancer. But luckily we weren't and we are living to see our kids grow. Thats a blessing, it truly is. And though we live daily with pain and fatique amongst so much more, we are here and we will get through it

    A storm is brewing and it feels like someones pinching my head. I'll end up taking something strong today to get through my day. I tried resting, but it even hurts to put my head on a pillow

    I'm not going to sugar coat how I fealt after surgery. The 1st two days were pretty rough. Thankfully they keep you on heavy pain meds and you sleep alot. I only vomited once. By the 4th day, I walked out of the hospital on my own, without a wheel chair and I had my spine cut open. The insision was sore but by this point, I was back to myself. If they asked me would I do it again, I definately would because it did resolve some issues.

    If your throat would feel better, I'm sure it would be worth it. I am still scared of going for my next one but I'll do it and hopefully I'll be even better

     
    Old 10-06-2008, 07:22 AM   #22
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    Re: DX with chiari

    Hey Cindy,
    Hope you are doing well.How is your head today? I wish i could be more postive about all of this.Sometimes i try & say you know it could be much worse & then i get mad all over again.I think i might go to the dr about my shortness of breath.Its so scary feeling like that.I think another fear of mine is death.I mean we all have to expierence that.For me its what i leave behind.Eventhough,i know Chiari isnt a death sentence,well what people tell me i just have to live with it.For someone going through it,its close enough to it.Its weird because i have heard of people around here that have the surgery & they are fine & live their live as normal again.Doesnt seem fair for it to not work for everyone.I hope my appt goes well this WED.Then again,i have been let down from all the other Drs around here.THe thing with aniexty is they all have said thats what it is.I look at my records & most of them have by passed me thinking its all in my head.The only thing postive is i have been able to let just everyone know for all those who had no sympathy i wasnt crazy,it really was something going on...Anyway,let me ask you what if this Dr WEd says i dont have it.I mean i have had Dr.Rosner DX me saying after he looked at my films i do have it.I mean shouldnt all neursergons see the same thing?? I just dont want get bypassed again.I just would think even if one Dr is more expierenced than the other,they should at least be able to DX the samething.Right?? THanks Cindy

     
    Old 10-06-2008, 08:12 AM   #23
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    Re: DX with chiari

    Hi lroberts

    I'm feeling pretty good today. The suns shining so I'll take it. I always feel pain but as long as I can be up and manage I'm good. Its the days where I'm on the couch with my head resting that really gets me down. I hate not being productive.

    I think what your going through is so very normal. Many days I have a good attitude but then some, I'm telling myself its just not fair. Why did I have to get sick with this? And you know what? I think we need to be angry at times because its NOT fair But then I change my thought to theres nothing I can do but except it. So, know your not alone on this one.

    Thinking of death when your a mom to young children is just not an option. Our kids need us and thats that. But internally we worry about what would happen to them if something happens to me? I do the same thing. My kids are older but I still have the same worries. But I try to think about chiari is not fatal, only in rare circumstances. So we will be ok

    Living with it, it does feel like life as we knew it is over. And in a sense it is. I know for me, my life is now so differant and I may never be the person I used to be. And thats tough to swallow. But there is hope. Surgery can help and it does help some people. We just have to be possitive and believe we'll be one of them.

    When wednesday comes, you need to go in there and say that you have a chiari diagnosis. I wouldn't ask him to diagnose you. When he looks at your MRI, he most likely will say that your herniation is small and your symptoms can't be caused from this. This is a typical response from most neurologists. Explain your symptoms and your research to back it up. He can only do 2 things. Agree or disagree. If he disagrees, you know you'll have to move on to someone else. Do you have a written diagnosis from Dr Rosner? If so, be sure to bring this. Explain that the travel is excessive to be treated by Dr Rosner and your hoping to find a Dr who is closer to work with you.

    Try, and I know its really hard, not to be emotional. Be strong and stand your ground. If he see's a weakness, he may quickly again blame your symptoms on anxiety and stress. If he see's a confident woman sitting in front of him, hopefully he'll offer you help.

    Is your husband going with you? I hope you have some support. Even a relative or friend that knows what you've been going through and understands. I hope that you have a good outcome. But don't get discouraged if it doesn't go well. You'll just have to move along to another.

     
    Old 10-06-2008, 11:07 PM   #24
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    Re: DX with chiari

    God bless the Chiari people........I have been brushed off by doctors for years and I finally decided to research for my self. Granted I am not a doctor but I was looking at another problem on these boards and some how came across Chiari. I have alot of the symptoms.......I was labeled with Chronic head and neck pain. One specialist I have seen recently a ortho doc wants me to have a Neck MRI I have read about MRI with CSF FLOW during the MRI. I have done everything thru out the years I am planning having a talk with him to dig a little deeper. I have a brain mri or cat scan done a few years ago and I want him to take another look and neck mri from the past. If he doesnt help me I will go to my family doctor..........I am not going to settle for Chronic head and neck pain anymore.........I just have this crazy feeling I was drawn to the chiari postings for some reason...........maybe it isnt Chiari I just know if they dug a little deeper they would find my problem. I have never heard of Chiari till I read the postings and I have been reading alot about it..........my heart goes out to all of you. From what I have read you have alot of decisions to make and that cant be easy. I know I will probably have a hard time with the doctors I will try to stand my ground. Take care

     
    Old 10-07-2008, 04:52 AM   #25
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    Re: DX with chiari

    Hi pattty~

    Welcome to the boards!! Its such a battle when your suffering and aren't getting anywhere with a diagnosis. I remember when I was where you are and came across a chiari post and there found my answers. It still was a battle to get recongnized by dr's though.

    I researched chiari and then looked at my MRI and saw my herniation. The radiologist and neurologist didn't see it until I brought it to their attention, then it was confirmed. This is very common in chiari. Dr's don't know much about it and aren't looking for it on the MRI so, many people go years with out a diagnosis. Very sad so many suffer with the unknown. At least when you have a name for whats happening, its a bit easier to accept.

    Its definately not an easy road having chiari but at least knowing, for me, its the aknowledgement that it's not all in my head that makes it worth while

    What other symptoms are you experiencing? If we can help in any way, we're here.

    Take care

    Cindy

     
    Old 10-07-2008, 08:58 AM   #26
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    Re: DX with chiari

    Hey Cindy,

    HOw are you feeling today? I hope your head feels better.I feel as if i'm drunk & the room is spinning all around.That would be fine if i was a drinker,but i'm not!!My legs are so sore today.Do you have problems sleeping.Usually i dont,but last night i felt as if my legs were asleep & numb & i had tingling all over my body? IT kept me up all night.TOday i'm weak & i still have the neck & back pain.HOw should i approach the DR tomm at my appt to get a MRI of my neck & spine done??

     
    Old 10-07-2008, 09:32 AM   #27
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    Re: DX with chiari

    Hi lroberts~

    That spinning feeling, I get that too. Its scary when it happens but for me, it does pass quickly. I get it sometimes when I'm laying down with my eyes closed, if I move my head quickly. It does feel like many years ago, when we drank too much and the room started spinning They do have medication for the vertigo if it becomes bothersome.

    My legs used to bother me terrible before my tethered cord surgery. Sleep was tough and very uncomfortable. Do you feel better if you bend your knees while laying down? That can be a sign of the tethered cord. Keeping the legs straight is more uncomfortable. Since my surgery, I get alot of twitching in my legs but the pain is so much less, thankfully.

    With Chiari, a spine MRI should be done to check for a sphinx (sp?) which is a pocket of CFS fluid in the spinal cord. This can happen if the CFS flow is disturbed or blocked. They did this at TCI on my spine. Thankfully nothing.

    But just come right out and ask for it. Tell them that you haven't had the spine done yet and go from there. I am hoping that this Dr is receptive for you because I know how badly you need that right now.

    I'm keeping my fingers crossed

    Cindy

     
    Old 10-07-2008, 01:27 PM   #28
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    Re: DX with chiari

    Thanks Cindy......yes it is all about aknowledgement. This is sad but one time a new doctor said to me "there is nothing wrong with you". Never saw him again !! I did go to a Headache Institute.........after 3 days I walked. This is no lie they gave me 20 different meds per day and by the third day you couldnt even see a space between my fingers.......they were so swelled. I have had some wonderful doctors too. All the drama started in 1984 it was considered a Workmens Comp case and alot of doctors dont want to get involved. I had 3 doctors that disabled me .
    I guess my chief complaint is the headache with pressure pain to back of my head. My neck is middle to left side pain. It will get out of control and quickly blood pressure creeps in up to 200/100. Pain behind my eyes.....yes vertigo is the worst had tons of test for that.....no answers for that either. One I went into the dining room then turned to go back to the living room ............everything went black and I couldnt see finally when I could the room spinned so fast I went down. My brother called a ambulance he is a EMT and ER just said vertigo. I have Sympathic Pain in arm also had surgery to cut pain nerve,hoarsness...........just about pain everywhere. Also RSD in arm which I dont believe.I also went to a pain clinic,nerve blocks and that just made it worse.
    I refuse to quit looking I am on a journey now. Luckie for me right now I am going to a ortho doc that does want me to have a neck MRI.........so I will ask for the spinal fluid test along with it. I just hope I can read all the test...........maybe my brother will help and since he is in the medical profession he knows of someone
    I am also having a Endo with ultra sound they found a small mass on my pancreatis......and I dont even drink. He said he doesnt think it is cancer but wants to be sure.........and check everything else out. I have that done Oct .
    23.
    Back to Chairi maybe I dont have that but I believe there is something going on in the brain and neck area. It is pitiful when we have to try and read our own MRI'S AND CAT test. We have to do what we have TO.
    How are you doing these days did you have the other surgeries done? If I remember right the last post was 2007. Do you still talk to Lisa.........I read all the post........you girls have been thru alot and great support for each other.
    Dr.Oz is on Oprah we should email him and suggest he does a show on Chiari.......take care wish me luck on my new journey.

     
    Old 10-08-2008, 03:38 AM   #29
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    Re: DX with chiari

    Hi Patttyyy~

    I read through your post and the thing that popped right out on me is having your spinal fluid checked. If you suspect chiari, please please concider holding off on doing that. It is not recomended to chiari patients and can make your symptoms a whole lot worse!!

    I was having alot of symptoms and my neurologist thought MS. He did a brain MRI then a spinal tap. I was a functioning woman, working 7 days a week, though I was having some issues. That lumbar puncture changed my life to the point that I can no longer work and am disabled. I got such an extreme headache after, that traveled down my neck, into my arms and hands. And its been that way ever since. I used to be the energizer bunny, these days, I'm more like the little engine that could

    I then found out I had chiari and the LP actually messes up the pressure and pulls the brain further down. I would hold off if your suspecting chiari. I would never want anyone to suffer like I have because of this.

    Did you have a brain MRI? This is what they use to diagnose. They also do a cine MRI, which checks the flow of CFS fluid. Your vertigo, blood pressure and hoarseness can definately be related.

    On top of everything else, they think you have a mass? I am so sorry you've been going through so much. I wish you the best on the 23rd. Please let me know how you make out

    I haven't returned for another surgery yet. I only had the TC. I desperately need to get back but the medical bills are piling up fast and thats concerning. I have applied for Social security but that may be a long road ahead.

    You mention Lisa. One of my biggest issues these days is my memory and I can for the life of me remember who Lisa is? We post to so many.

    I definately wish you well on this journey. It takes alot of work on your part but don't have alot of expectations that Dr's will be willing to concider chiari. So many have blinders on. Its really up to you do find it, unfortunately, then prove your case. Of course seeing a Chiari specialist is in your best interest if theres something there. Hang in there but stand strong!!

    Take care

    Cindy

     
    Old 10-08-2008, 04:43 AM   #30
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    Re: DX with chiari

    Hey Cindy,

    Well today is my appt & I prayed that something good will come of it & he will listen. Wish me Luck & I will let you know how it goes when i get back.THanks again for all your help.Hope you are feeling well today.Lisa

     
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