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    Old 09-22-2008, 07:04 AM   #1
    lroberts21
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    Unhappy DX with chiari

    hey there,well i usually post on the acid relfux board.THats what i was DX with for the past 10 months now.NOw it seems as if i have something called Chiari.I'm soo upset at this point.I have wasted so much time with Drs & now i dont even know what to do.My main problem has been this awful feeling in my throat( a pressure type feeling,it actually feels as if something is sticking in my throat.LIke a bone sometimes.Is there anyone out there that has chiari & has this same feeling in their throat.I looked up the symptoms & i have alot of them.Can this cause problems with your throat?please is there anyone outthere that can give me some advice on this?

     
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    Old 09-22-2008, 06:33 PM   #2
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    Re: DX with chiari

    Hi lRoberts~

    I also have chiari. I was diagnosed this April after a long journey searching for what is wrong. I'ts overwhelming to learn you have chiari and most people are unfamiliar with this, even Dr's. So arm yourself with knowledge and learn as much as you can so that you can advocate your way to better health.

    Feeling like something is lodged in your throat is a very common symptom with chiari. Thankfully not one I experience. I get tightness like my throat is being sqeezed. Chiari affects the nerves in our body, both voluntary and involuntary, causing many neurological symptoms.

    Have you been refered to a specialist at this point? You'll need to find your self a good Dr who is well versed in chiari, preferably a chiari specialist. If theres anything l can help with or questions you need help with, just shout out.

    This is definately difficult to learn you have chiari but you'll be ok. You have support here

    take care

    cindy

     
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    Old 09-23-2008, 08:02 AM   #3
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    Re: DX with chiari

    Hi lroberts~

    I know you responded to me on the MS board but I figured it was more appropriate to talk chiari here and not step on any toes

    The throat symptom is horrible!! I get pressure too and my heart races like my neck is being sqeezed but nothing to the extreme of what your describing.

    I do have a list of Chiari experts and i'll send that your way. I went to New York to The Chiari Clinic (TCI) They are well known and very reputable and have helped many people. Its a 4 hour trip for me but definately worth it!! People fly in from all over for their treatment because they know theyre stuff and have saved alot of people that have had botched surgeries else where.

    Having 2 young children is tough when your dealing with chiari. Luckily my youngest is 16 so its a bit easier. But she definately has missed out alot having to deal with how this has changed my life. You'll just have to adjust your life a bit to care for you. Thats important!!

    As far as dying, the fatality rate with chiari is very low. Most deaths occur from being on high doses of pain medications and it slowing down the respiratory system. Sleep apnea is common with chiari so the mix of the 2 are bad!! You'll be ok. I do understand those fears though. I've had them myself.

    I have had my 1st surgery for a tethered cord, which is a related disorder of chiari. I was told by TCI I will probobly need a fusion next and then decompression if I'm still not feeling better. Its been 3 months since my surgery. If I'm using terms you don't understand, feel free to ask.

    I'm here if I can help in any way. Just hang in there

    Cindy

     
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    Old 09-23-2008, 09:40 AM   #4
    lroberts21
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    Re: DX with chiari

    hey cindy,

    well,i was on the phone with Duke here in NC & i told them my symptoms i was having today.I feel like my back is numb & tingling & i can hardly walk.I'm so dizzy.They told me to come to the ER right away,i could have fluid build up.I havent had any tests done for the Chiari,just the MRI.THat was done back in FEb & just got DX this past Friday.I dont know what all of this means.My mom had fluid build up on her brain & had a snut put in when i was little.THank GOd shes still here,but i'm living in Fear with all of this right now.I have mis Dx all year for acid reflux.THat seems simple compared to what i now i'm being told i have.Is there hope.I wanted to try & go the NEwYork,My husband is so tired of the medical bills.WE have UNited Healthcare,but i dont think they would pay for out of state??

     
    Old 09-23-2008, 07:31 PM   #5
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    Re: DX with chiari

    Hi lroberts~

    How did you make out? Did you go to the ER today? I get alot of numbness and tingling in my back too and the vertigo as well, which is pretty scary. But for me, it passes pretty quickly. I hope your feeling better by now.

    Your mom having a shunt, does she have chiari as well?

    I know your scared because this is all so new and the fear of the unknown is tough to deal with. But on the other hand, stress is not a good thing to add to all you've got going on. So really, try to take a deep breath and relax. This is a managable condition. It stinks but you'll get through it. Once you get to see a Dr who you feel comfortable with and they can ease your mind, I think you'll feel so much better

    TCI in new york is great but for many, its a big expense. I had to pay out of network with my insurance and the bills are building. So I understand your husbands concern. But on the other hand, you don't want to pick a Dr out of a basket because he's coverd by your insurance. You need to get a neurosurgeon who is knowledge in chiari. Its so important. I checked my list of Chiari specialists and theres one in North Carolina that I've heard really good things about. If you need more, I can look in surrounding states as well. Heres his info and I'm looking forward to hearing how you made out today!!

    Take care

    Cindy

    North Carolina

    Michael J Rosner, MD
    80 Doctors
    Hendersonville, NC 28792
    (828) 684-1076

     
    Old 09-25-2008, 04:12 AM   #6
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    Re: DX with chiari

    hey cindy,well i didnt get the treatment i thought i was going to get.I feel like i was brushed off & the neuro Dr there made me feel like it was a big deal.They did nothing but a cat scan on my head.I havent had a MRI of my spine or anything.Its scary having all of this & you feel like some Drs dont care.So now,i'm back to not knowing where to go.

    The Drs in the ER said i only probaly had chairi 1 & there would be no need for surgery.Doesnt this just get worse if you dont get it fixed? Lots of questions that i'm not getting real answers to from these Drs.Thanks for listening on here..Lisa

    Last edited by Administrator; 01-11-2010 at 10:02 AM.

     
    Old 09-25-2008, 04:42 AM   #7
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    Re: DX with chiari

    Hi Lisa~

    That is so typical of the ER to treat you this way. I've been there. They don't listen and act like your being a hypercondriact when truly, we are feeling what we are feeling. Sorry you didn't get anywher and I'm sure you left being as frustrated, or more than, when you went in

    An MRI of the spine would determine if there is SM going on. I'm sure a Chiari specialist would recommend one at some point. Most neurologists don't believe in these surgeries and it seems this is coming down on him.

    I'll add the names\s at the top of my list that are highly recommended. I'm bad with geography so I'm not sure of what states surround you. I have many more, listed by state if you need more names.

    As far as the ER saying you don't need surgery, those Drs dont know enough about chiari to make that judgement. And yes, this is progressive and can cause permanent damage if left untreated. TCI says the best results are obtained if surgery is done within 2 years of the onset on symptoms. If you concider our nerves are being compressed, if left that way, it definately can cause permanant damage. You need to put your trust into a Dr that is well versed in this.

    I'm always here to listen Lisa and will help in any way I can if you need it!!

    Take Care

    Cindy


    * Dr. Ulrich Batzdorf
    Neurosurgeon
    Box 956901
    Los Angeles 90095-6901
    (ph) 310.825.5079



    * Edward C. Benzel, MD
    Chairman, Cleveland Clinic Spine Institute
    The Cleveland Clinic Foundation
    Cleveland, Ohio 44195
    Neurosurgeon
    Tel: (216) 445-5514



    * The Chiari Institute
    Paolo A. Bolognese, M.D.
    Thomas H. Milhorat, M.D.
    Et al
    865 Northern Boulevard
    Great Neck, NY 11021
    Phone: (516) 570-4400
    Fax: (516) 570-4444
    The Chiari Institute



    * Dr. Richard G. Ellenbogen
    Neurological Surgery

    Pediatrics:
    Children's Hospital and Regional Medical Center
    4800 Snad Point Way N.E.
    P.O. Box 5371
    Seattle, WA 98105-0371
    Phone: 206-987-2323




    Adults:
    Harborview medical Center
    325 Ninth Avenue
    Box 359766
    Seattle, WA 98104
    206-744-9339




    * Dr. David Frim
    University of Chicago Children's Hospital
    Pediatric Neurosurgery
    5841 S. Maryland Avenue
    Chicago, IL 60637
    Office Phone: (773) 702-2475
    Office Fax: (773) 702-5234



    * Dr. Arnold Menezes
    Neurosurgeon
    University of Iowa
    Hospitals and Clinics
    Iowa City, Iowa 52242
    Phone 319-356-1616


    * Dr. Edward Oldfield
    Surgical Neurology Branch
    NINDS
    Building 10, Room 5D37
    Bethesda, MD 20892-1414



    * Dr. John Oro
    1444 S. Potomac St. Suite 170
    Aurora, CO 80012
    Phone 303-481-0035
    Fax 303-752-5240

    Last edited by Administrator; 01-11-2010 at 10:07 AM.

     
    Old 09-25-2008, 01:20 PM   #8
    lroberts21
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    Re: DX with chiari

    hey Cindy,

    i really appreciate you taking your time to help answer my questions.Its funny how it seems like we all help each other on here more than the Drs help.Its scary being told you have something thats not very common & trying to get help is another ordeal init self.My main symptom is my throat & the tight pressure feeling like theres a bone sticking out.Yet,when i ask all the Drs they say thats not commmon with chiari.HOwever,i do have the headaches & dizzness all the time too.Where would i find info on how it effects you throat.I swear they look at you like you are making this stuff up.I mean it would be nice to find a wonderful Dr that maybe was GOdSEnd.Also,what tests should i request when i go & see the DR.LIke,i said i have appt next week to see Dr.Rosner.I heard he spends like 4 hours with you.I just have to hope my husband will take me.Thanks,Lisa

     
    Old 09-25-2008, 01:59 PM   #9
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    Re: DX with chiari

    Hi Lisa~

    You definately don't have to thank me for answering questions. I'm here to offer my time to those who are in the frustrating battle with Dr's while having to deal with the reality of the challenges we face with chiari. Its so nice to have a place to go to share with others who truly understand. Though we have family and friends, I know for myself that I feal guilty laying all of my problems on their laps. Here, you can say anything and SOMEONE has been there

    As far as the throat thing, I have a symptom list for from TCI and it lists difficulty swallowing and 54% of chiarians experience this. Many people describe it as feeling like something is stuck in your throat. They have some amazing information to offer and videos to view explaining chiari and its related disorders.

    When you go to the Dr, he will know exactly what tests you'll need done by the symptoms you describe. My advice is to gather copies of any medical tests or hospital stays, CT scans, bloodwork, anything you can. You can go to the places you've had these done and request copies. This has saved me from having to repeat tests. When a dr suggests a certain test, I just say "I got that one right here in my folder" They look at it and you don't have them saying "lets wait for the results and we'll take it from there"

    I've heard he does spend alot of time with his patients so you will walk out with alot of knowledge but mostly you will feel validated with all the things you are going through. Because these Dr's understand Chiari so well, they don't dismiss our symptoms as unrelated to chiari. You'll walk out feeling that finally you have someone who believes you. Thats the greatest feeling

    Its definately good to take your husband along. For 1, he will help to remember what to ask and be a second person to remember all your going to be told. And, it also gives your husband the ability to get a better understanding for himself. Family needs education too!! So give him some sweetness and tell him you'd really feel better if he comes along for support.

    Take care

    cindy

    Last edited by Administrator; 01-11-2010 at 10:08 AM.

     
    Old 09-30-2008, 07:29 AM   #10
    lroberts21
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    Re: DX with chiari

    Hey Cindy,

    I hate that i have this symptom with my throat.I think i could deal with headaches a whole lot better.ONly because i have always had headaches fo as long as i can remember.THis throat problem,just happend after a awful sinus infection & it turned into this.The thing is not only does it feel like something is stuck in my throat,it burns & throbs so bad.I mean all year long i was Dx with acid relflux & thinking i was going to have cancer.After all theses tests done & one Dr to the next & now i'm in waiting.I also,feel so weak & dizzy.For the past 2 nights,i feel like my legs are giving out on me/ along with my back in pain.Can all this be related? I just cant believe how bad this can make you feel.I was suppose to go see Dr.Rosner this Thursday & i had to CX cause noone would go with me.Its 5 hours from me.Do you think if i have to have surgery that all of this will go away & how do they determine rather or not you do need it.I would think your quality of life.I'm just worried all of this is going to get worse for me.My kids dont understand & my husband dont get it.My kids are small,so they want me to play & i just dont have any energy...

     
    Old 09-30-2008, 08:00 AM   #11
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    Re: DX with chiari

    Hi lroberts~

    I feel for you, I really do. I can hear the frustration in your post. Know that you can come here to let out that frustration and though we can't fix whats happening, you'll feel better just venting.

    It is so hard being where you are with no game plan. Too bad you had to cancel with rosner. At least going to him, you would have gotten some answers that you so desperately needed. I thought hubby was going to take you? Did he change his mind?

    I get alot of burning sensations too. Luckily not in my throat. That must be miserable Have you tried the spray for sore throats that numb the troat? I know not much touches the pain we have but its worth a shot. I burn in my head, face, lips all down my arms and into my torso as well. It feels like I was rug burned. But for you, it must be difficult to eat. Try some cold foods. Icecream will probobly help. The brain cant feel 2 sensations at once. So if it feels cold, it cant feel pain. Even freeze pops might help. When your desperate, you'll try anything. I use ice packs all the time to get relief.

    Dizzy, weakness in legs, fatique, they all can be related and I get that too. The only thing you can do is rest when you can. I know the kids are small but try to find some lazy days activities to entertain them so you can relax while resting. I know its hard and I can't imagine doing it with little ones. Do you have family support? How about your hubby? Does he let you rest when he's home? I know you said he just doesn't get it but even a couple ours when he gets home would help

    This definately is a challenging disease and adjustments in life style is the only way your going to feel better. I was diagnosed in April, have had my 1st surgery with more to go, and 5 months later, I'm still struggling day to day. All we can hope for is that surgery can help. Theres no promises but even if it fixes something to make life a little easier, its worth it. And if it doesn't, surgery hopefully will stop progression so we wont get worse. I look at it that way so I won't be dissapointed. If stopping progression is the best I can get, I'll take it. If I get relief from my symptoms, all the better. You really just have to try to find some peace with this until you can get to a chiari specialist.

    Just hang in there and know your not alone

    Cindy

     
    Old 09-30-2008, 08:35 AM   #12
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    Re: DX with chiari

    Hey Cindy,

    I'm sure i sound so upset.ITs so so hard & heartbreaking to have gone through this all year,well ever since i had my 2nd second child.Almost 2 years now.She turns 2 on Thursday.I just feel like i have wasted alot of time & esp money on trips to the Dr now going on 2 years & now i get a answer & i wish it was easy to fix the problem.The thing is i try & remember i'm not the only person going through this,but everyone close to me is in good health.So how do you make your friends & Family care or sympathize with you on this.I want to go & see Dr.Rosner even all the negative things that have been said about him.I think thats why my husband said he couldnt go with me & then the fact hes tired of all the money we have spent & no sucess with my health.So you said you have more surgerys to go through.Can they not get everything all in one?? Just didnt know how it works.You sound so postive,i wish i could be.I try to explain it to everyone,they just dont understand.When you have a problem with you throat.THats how you live & speak & who you are comes through...

     
    Old 09-30-2008, 09:05 AM   #13
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    Re: DX with chiari

    Hi lroberts~

    You definately have the right to feel frustrated, sad and angry. We've earned that for sure This is a long hard road even to get the point that we are at. 2 years of chasing a diagnosis is horrible. It took me that long too. Then when we finally hear that its figured out, theres light at the end of the tunnel. But really, we've just begun. I know thats hard to hear but getting hooked up with good care, setting up surgeries, it all takes time and wait in between. Its very frustrating. Thats why I say its best if you can find some peace and exceptance while your going through this.

    Your not alone in what your going through but in our real lives, we are alone. We look normal and healthy but we are suffering. Its like an invisable illness that others can't see so they just don't get it. Even if it was visible, I don't think they would. They would have to walk in our shoes for a day to really understand what this is doing to us inside and the daily struggles we have to deal with.

    So getting them to understand is really not whats important. If they understand, great!! If they don't, oh well. You just have to take care of you and do what you have to to feel better. There are people in your life that will sympathize and when you find them, its a great feeling. but mostly, they dont so this is why the boards are helpful

    Here, your understood. We make no judgement, just offer support to one another. I started here a year ago, before my diagnoses and it was a life saver for me. I was frustrated and stressed and the boards helped me understand that living with that, on top of all the other stuff, was just making things worse.

    Dr Rosner may have some practice issues but he does have knowledge and right now, that is definately what you need. Your husband is probobly just as frustrated with all this too. And men cope differantly than we do. So if you can make him see that you need to help yourself and do something, anything, to get help and feel better, money is just money. Your quality of life is priceless

    There are 3 surgeries. The tethered cord, fusion and decompression, for me. Everyone is differant. They start with the TC surgery because its the easiest. Then see how you do and go from there. So its done it steps. And speaking of money, I opened a bill from the surgeons at TCI yesterday. It said my portion is $73,000 I know they were out of network but am scared to know what kind of debt I will be in. I was horrified. I was crying all day yesterday because I was in alot of pain, in major debt and not knowing how I'll be able to afford the next surgery. But the bottom line is, I have no choice to find a way. I'll manage somehow Today I feel better and I'm not so weepy. So see, we all have our days.

     
    Old 10-01-2008, 06:33 AM   #14
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    Re: DX with chiari

    hey Cindy,
    I too have my days.Some days are so much worse than others.TOday is really bad.I woke up this am to major back pain & neck pain.I also feel as if there is a knife sticking in my back & i cant breath.Is this normal?AHH,i just dont know whats serious & for me ever pain I'm feeling i want to go to the ER.This is just Fear.I dont have a appt with a nuersergon untill 10/28,thats the first.I havent set up anything else with Rosner.I'm trying to talk my husband into it.He is the one who DX it.I sent him my MRI & he said i had it.So,i would like to hear what he has to say.IN the mean time what do i do for my pain.WE are suppose to take the kids to Disney next week & we cant CX.WE had this trip planned before i got sick.I just would love to feel good for one week to be able to enjoy this time with my kids,cause they dont understand.So you said you will have to have all 3 surgerys when its all done.Do you feel a little bit better?? HOw do they determine what kind of surgery or if they will do it or not.Have you tried to get fincial help & disability? i have heard with this you can get all of that.I mean i think we should.ITs something that has effected our quality of Life.Hope you are feeling better today.

     
    Old 10-01-2008, 07:11 AM   #15
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    Re: DX with chiari

    Good morning!!

    The 1st thing I want to say is chiari can give us so many horrible symptoms and they can be differant day to day. But our bodies are just like everyone elses and we can get other things like others do. So if you question that something is wrong, don't hesitate to see a DR just in case. The thing with your back, like a knife in it an can't breathe, that could be something with a lung. So you don't want to blow that off.

    Instead of racing to the ER, do you have a primary care that you can go to and explain your concerns? We definately don't want to feel like hypocondriacts every time we feel a pain but neumonia (sp) could be settling in there, so you don't want to dismiss something like that.

    As moms, you know when our kids are sick, we don't hesitate to bring them to their Dr. Even if we're over reacting. So think of you that way. So what if they think your complaing alot. We have been rejected by the medical field in a way that makes us uncomfortable to go with concerns. Thats so sad If something is really wrong, we'll be so afraid to go, something bad could happen.

    I'm not trying to scare you at all. You just have to be strong and not fear those fools that make us feel rediculous. You know? So if that pain doesn't get better, at least call your Dr, OK?

    Oct. 28th is right around the corner but I'm with you on at least TALKING to rosner to see what he has to say. Your husband needs to understand that your stuck in a hard place and you need to know what your next step should be. If he doesn't agree, maybe you can find another expert together. But express to him that you really need his support. Its hard fighting this battle alone!!

    The pain is a tough one. I'm on neurontin for nerve pain, a high dose of naproxin as well, which is an anti inflamotory. It really only takes the edge off. But when I'm having a bad day, it does nothing. I end up taking an oxycodone to help, but I still suffer. I'm very fearful of becoming dependant so I only use these when I have to. I have been in unbareable pain all week so I just lie down and sleep it off. You have little ones so its alot harder for you to do that.

    Going on family outings is tough. But needing to do them is important to. I hadn't done any for over a year and this summer, my inlaws, a big group, planned a trip to six flags. I decided I was going to go. So I rented a scooter from the park and I made it through the day. Not having to walk it, saved my energy so I could stay up longer. I managed almost 12 hours at the park. I was exhausted when it was over. We rented a hotel, stayed the night, and I collapsed. Took me a couple of days to recoup. So, some things are worth the suffering. Our kids will only be kids for so long and it would really be sad if my kids remember their teen years watching their mom just being sick. So I figure, I have to throw some happy memories in their from time to time.

    After my 1st surgery, my legs are definately improved. The told me this would help with the lower extremity issues and I got what was promised. My bladder and bowel issues have improved too. They said some people see improvement from the head pain but they gave me no quarentees. So I wasn't disapointed when it didn't help.

    They actually said the Tethered cord surgery can make the cranio instability worse, which I think it has so I definately need to go back. But finances are holding me back. Everyones diagnosis may be differant with chiari, because there are the related disorders to concider. Depending on their diagnoses, what surgeries are suggested.

    I just applied on line for disability. It took about 3 hours but at least I got it started. Some get it right away and some people wait years but yes, we do deserve it!! You can go directly to the Social Security site and apply. This definately does change our lives but we have to find a way of making the best of it!!

     
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