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Chiari dozens of questions about symptoms


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Old 03-25-2009, 01:59 PM   #31
dawn1214
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Re: Chiari dozens of questions about symptoms

I do not know if I am having pre meno symptoms as a lot of those symptoms also mimick hypothyroidism which I have as well. Jeez now that I think about I am just a mess aren't I. I have just recently gotten readjusted to my meds from being taken off them for an uptake and scan. My periods have been all over the place while off and then back on due to startiing hyper from overmedication, hypo off the med, and now levels are in range or at least they were 3 weeks ago. lol..

I feel that all aspects are worth looking into. I do not want to blame everything on the Chiari, Cavernoma, or being hypo without having some more testing done to rule out everything it could be. Will my neuro be able to order the proper testing for Lyme?

My biggest struggle this past week has been the problems with getting a deep breath as well as the muscle problems, my neck and shoulders are very tight. The numbness in my tongue was better for a couple of days and it is back today. I am wondering if tightness in the neck could cause the trouble with swallowing and numbness in the tongue. Any thoughts on that? And yes I agree that any problem can be get more extreme with hormonal changes. Thyroid levels fluctuate with menopause hormonal changes for sure. How reliable are blood tests for hormones?

 
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Old 03-25-2009, 08:56 PM   #32
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Re: Chiari dozens of questions about symptoms

hi dawn

well you have a lot going on....but I admire the way you're dealing with it so well.......it's really a long,hard road trying to find out what is happening with your health....if only the drs. could put it all together and say "this is what the dx is for each sx".......hopefully one day that will come about.

Actually "twitching" or muscle spasms/fasiculations is related to hormone changes......I have researched this and was amazed at all the sx menopause causes.....everything from those well known hot flashes/night sweats to seizures....so some people aren't aware just what a toll menopause can put on your body and how much it does effect your brain/nervous system.I know what I'm talking about bethsheba......you listed standard"text book" sx of peri and meno...I thought I was going to laugh myself off the chair I was sitting on and it also upset me at the same time.You talk about drs. not knowing everything,but you don't know it all either.We are supposed to be lending emotional support along with helpful advice...not pushing everyone to go get an Igenex lyme test and then drilling it into their heads that they have lyme...this is not the lyme board........chiari,cavernomas,b12 deficiencies,anemias,menopause...these are real disorders and people are sensitive about their situations and do not need to be scared out of their minds that they might have lyme.........I'm starting to wonder what your problem is.

Sorry if I offended anyone here,but I know there are others besides myself that are just getting tired of the lyme brain washing...we are real people with lots of different health problems and yes lyme is a real serious health issue,but so are all the other health issues here.Somebody had to address this and so there it is.

Have a good night everyone~

Scout316
dx occult B12 deficiency march 2000
6mm cerebellar tonsillar ectopia dx dec.2006
(not consistent with chiari I malformation)
dx simple sensory seizures feb.1999


 
Old 03-26-2009, 01:55 AM   #33
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Re: Chiari dozens of questions about symptoms

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Bill......did you try that "colon cleanse" pill like Cindy suggested you do?Actually Cindy was saying that your sx do seem chiari related,but this is the first time you've mentioned that you think you might have chiari........forget a GP you would benefit more from a neurological exam for sure.
Colon cleanse contains senna which is a stimulant laxative, I don't use those because they can cause dependency and according to some sources may damage the nerves down there from overuse.

I think Chiari is possible but it scares me a bit to think about it. I have been talking to you on here, and in email, for a while, and you seemed to think my problem was more along the lines of B12 deficiency or some other deficiency. I took your advice and tried it out: I mentioned to you in email, and on here, that I've been taking sublingual B12 + cofactors for 3 months and despite some promise with lesser symptoms, none of my worst symptoms have budged. Does this change your idea that my problem is B12 related, or perhaps could it be that the one daily 5mg Jarrows B12 is not enough to really affect the "worst damage" from deficiency and therefore most symptoms won't go anywhere...?

I was on another board that mentioned CSF leaks can mimic Chiari symptoms and are much more common. I don't see "why" I would get Chiari seeing that the problem is most common in women and symptoms usually appear past 30 years old (my symptoms began at 23 years old) and are also more common among folks who've had head injury/whiplash (car accidents, etc).

My first symptoms including head pressure occurred during a period of extreme stress, sleep deprivation, and probable malnutrition. I used to be an addict, so there's the reason. My psychiatrist thinks this could be nervous system damage ("excitotoxicity" as he called it) so that I "feel more than I should."

Why should I let one person's opinion that I have Chiari (as it happened before when someone told me that I probably have MS) start the spiral of paranoia and anxiety all over again, as I'm prone to this.... well, that's already happened. No one wants to be told they probably have a progressive and potentially serious debilitating condition, especially not someone prone to anxiety attacks.

Lemme know,
Bill

 
Old 03-26-2009, 02:01 AM   #34
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Re: Chiari dozens of questions about symptoms

Not to sound like some immature freak, or something, but I really need some way to calm down here...

 
Old 03-26-2009, 07:51 AM   #35
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Re: Chiari dozens of questions about symptoms

seriously Bill you need to go over to the anxiety board and get some help......nobody is saying you have chiari or any other brain/nervous system disorder..and I never said you are B12 deficient...I asked you what your B12 level was and like RainbowsEnd I agree that you need to see a dr.,because we are not drs. here and you are not going to get a dx here.

You have numerous sx and frankly most of them seem anxiety related...though low B12 presents with many neurological sx you aren't responding to sub~lingual B12 so that should tell you something.......you have not had a B12 level test which is why posters here and wherever else you go can only guess if you need B12 or anything else.

It is foolish to rely on random advice from people who truly mean well without the help of a medical physician......in the meantime you are putting yourself in a stressful situation by coming on this board when you should be on the anxiety board.

I'm not trying to ridicule you Bill...I'm just trying to get through to you that you're not helping yourself by putting off seeing a qualified medical dr.

Scout316

 
Old 03-26-2009, 11:41 AM   #36
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Re: Chiari dozens of questions about symptoms

Hi Scout,

Ok lets talk some more about b-12. I have just done some reading on it again.

I am very curious about your muscle spasm problems. Today my right leg is getting a terrible something crawling under my skin feeling and like a burning, zapping feeling. It is different from the normal feeling I usually get. Could you be really specific on what that felt like for you. It seems to be just in my right leg which of coarse makes me concerned about the cavernoma.

Oh and I agree that Bill needs to get to a dr. I know what it is like to have anxiety and when you do you think everything is wrong because the symptoms of anxiety mimick so many things. Why does he think he has a Chiari malformation? Has he had an mri to diagnose that?

Thanks..Dawn

 
Old 03-26-2009, 02:16 PM   #37
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Re: Chiari dozens of questions about symptoms

Dawn...just a quick note here...there was a poster named Buzzbabe who talked about the "zapping feeling"...she started a thread called "Internal Trembling and Shaking"....and "Int.Trem.&Shaking II"it's on the menopause board here....that same feeling you had is discussed quite a bit on those posts....so you might want to check that out...I posted a few times over there.....my GP said those feelings were "menopausal tremors"......I had them too,but mostly I was having the feeling of little twitches that I could even see when looking at my ankles....someone mentioned "RLS"(restless legs syndrome)which can be caused by low dopamine and iron makes dopamine so I "guess" it might have had something to do with my low B12....who knows????

Do your hands cramp up when you write or grasp things too tightly?Mine did.........well I'm just wondering if you are starting peri...being that you have the cavernoma,thyroid issues I can see how you would be having a really rough time if you are starting peri......but having your B12 checked would be a good idea.....if it's at low-normal end you should request an MMA test or Homocysteine test which will show the "hidden" type of B12 defi.....(it shows a B12 def. at the tissue level).

Bill hasn't had an MRI,but he has no health insurance...he has several sx that may or may not be neurological...he has stated in previous posts that he is a "wimp" about medical issues(I am too...hee hee!)...so my friend Cindy told me that Bill's sx kind of seem like they're chiari related....,but nobody knows what he has....he needs to see a neuro,but he probably won't/can't...........

I'll check back on here this evening....I've got a playdate with my darling little grandson......take care

Scout~

 
Old 03-26-2009, 05:44 PM   #38
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Re: Chiari dozens of questions about symptoms

Oh how nice, how old is your grandson? My son is almost 8 (I had him when I was 38 late start haha) my mom just loves playdates with him. He is actually better behaved with her probably because grandma spoils him. hmmmm are all grandmas like that? I'll bet so I love when she gives him all sorts of junk to eat and buys him all kinds of things, when my brothers and I were growing up she wasn't like that. Kind of funny how the rules change when it's a grandchild and not a child. lol

Yes I occasionally get a cramp in my hand not so much. i sure do get the twitching spasms that you can actually watch, it is sort of comical but whatever it was that happened today was freaky. i didn't want to move otherwise I would have ripped my pants down to see if I could actually see this stuff moving through my leg. I sure hope this won't be a regular thing because it sort of freaked me out..

Yes i do think you are right. All this stuff added together can be confusing and makes things worse. Terrible hormonal issues. Wish i could figure it out before I go to the Neuro freaking out on him. LOL He will probably think I am some kind of nut case with all these weird symptoms. i can imagine the look on his face when I tell him it felt like a worm or something under my skin. makes me smile just thinking about telling him haha.

I am going to put my son to bed now and check out the meno threads, Hey what the heck, Chiari, Cavernoma, Thyroid, B12, Lyme, threads why not add one more to my list. I would rather have it be menopause symptoms than any of the rest of them, although my aunt was telling me today that her symptoms lasted 10 years. Don't know if I can stand 10 years of this. i will check back with you later...Dawn

 
Old 03-26-2009, 06:57 PM   #39
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Re: Chiari dozens of questions about symptoms

hi Dawn!

my grandson is 7 and he has mild cereball palsy.He walks with a walker,but he talks fine(he's had therapy since he was 16 months old)and he is a real cutie,but very stubborn...he tells me a thing or two...hee hee hee!I am always buying him clothes,toys,video games......but Ben is worth it of course!

I also have more grandbabes...Jillian is 6,Isabella is 2 and Sophia is 1....they're all just adorable.

Back to the good stuff...haha....well I'm thinking that the burning pain is some sort of neuropathy,but why it happens is anyones guess.....there are soooo many causes and kinds of neuropathies.I had the EMG test(neuros just love giving that test I think)and it came out fine...actually almost everyone I know that had an EMG has normal findings.

Did you have blood labs done recently?I would make sure your dr. checked your iron,ferritin,magnesium,phosphorious,cal cium,vitamin D and potassium.......those are key ones to watch during the change.

Hormones fluctuate so much so most drs. won't even test them until your in full blown menopause(period free for one year they say)....it will be 2 yrs. for me in June.....and I did go through 10 years of a living nightmare with peri.I'm just so thankful the B12 def. was found or I'd probably not be around still.....

I think the worst part of the whole peri/meno thing was the anxiety...it was so bad,but then again my low B12 wasn't helping the situation....I can't believe some women go through it without any problems.....how divine that must be!

I don't think that much about the chiari,but I know if my sx come back I will.......too many things to think about.

Well I hope you get some answers about the numbness/burning feeling in your tongue....that could be B12 and I know someone with MS that gets that too....

I will check back in tomorrow....take care~

Scout

 
Old 03-26-2009, 08:06 PM   #40
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Re: Chiari dozens of questions about symptoms

Awwwww how sweet that you have so many to spoil. How many children do you have and do these all belong to just one of them?

Oh you just hit home with me by usinig the anxiety word... OMG I have such extreme problems with this at times. I could just be sitting here and suddenly I can't breathe then i try harder to breathe,then next thing I know I am hyperventalating myself which then make the anxiety worse. LOL... What did you do to help with that. I just don't want to take an antidepressant. Please don't tell me that this anxiety will last 10 years because then i would just have to shoot myself LOL

I had an EMG on my hand and ended up with carpel tunnel surgery. A year later had one on my arm and it came back fine. I am afraid that he will want to do one on my leg.

I could ask my gyno to run the hormone tests again but she also told me once that they don't like to run them until your period is gone for a year. i suppose the neuro could run all the rest of the tests for me. I think he checked them 2 years ago and everything was good. It seems the chiari might be the least of my troubles right now. I do have some of the symptoms but now I am truly wondering if my symptoms aren't stemming more from other issues. I am glad that you took the time to chat so much with me. you have eased my mind that there are other things going on with me and I appreciate that.

I am heading off to bed to read and relax a bit. I will check back tomorrow. Thanks again Scout.

 
Old 03-26-2009, 11:13 PM   #41
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Re: Chiari dozens of questions about symptoms

Quote:
Originally Posted by scout316 View Post
You have numerous sx and frankly most of them seem anxiety related...though low B12 presents with many neurological sx you aren't responding to sub~lingual B12 so that should tell you something.......you have not had a B12 level test which is why posters here and wherever else you go can only guess if you need B12 or anything else.
I am responding to sublingual B12 positively, it's just that it hasn't helped my worst symptoms, not as yet anyway.

On a more positive note, it looks like I might be getting a flimsy health insurance plan soon. I'm not sure how much I can expect it to cover if I need to get a lot of tests done, though.

 
Old 03-27-2009, 09:55 AM   #42
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Re: Chiari dozens of questions about symptoms

honestly bill,and i DO mean this most sincerly,if you do get that ins, please get thee to your doc and ask to have that MRI done from the brain on down to the sacral. seriously, one of the main reasons i responded to your very first post was i did very much feel that alot of your symptoms really sounded like spinal or the brain issue within that cerebellum where the alcohol actually hits when we drink? you just have so many different widely spaced symptoms that having something going on either in the brain itself or the spinal cord area could easily explain. you just need this one contrasted MRI in order to either rule certain things in or out,ya know? i really DO, as well as the other people who have posted to you over all these months most likely want, is for you to finally have some Dx of what is really going on in there.

having alot of anxiety at this point bill when you consider the length of time this has had to drag out because of your ins situation,well that is probably normal for anyone in your posistion. its finally getting any real answers here for you that will truely help with that and probably a level of depression that just comes along for the ride when anyone is in the same situation you are,ya know what i mean? i really DO hope that your possible ins omes thru for you,really. hang in there bill, marcia

dawn. considering just where your angioma is located AND combined with the bleeds you have had along the way, what you are actually feeling in your legs at this point,and alot of other symptoms as well, could VERY easily be from your cav. i had just really off the wall insane 'perceptions' of sensations that felt like they were actually happening but were not kind of thing? along with alot of pain gnawing pressure and prying underneath my right shoulder blade that nearly drove me insane 24/7 it was ALWAYS there. you also,like what i had have whats called an 'active cavernoma' or active bleeder. you do appear from what you have stated about things actually have probably had more than one real bleed in it(thus,that hemo staining in your report,still cannot believe the rad did not look for that source of the bleeds,duh?). luckily these are NOT arterial but veinous so they tend to just 'ooze' at bizzarre times with no prediction, they just decide to do it. every bleed can change things that we feel. depedning upon the very exact location of yours in that cord,that would dictate any real symptoms you may have. mine sat in whats called the spinothalmic tract which governs and carries all pain signals to and from the brain(i now, since my removal have 'deranged pain'),your ability to feel hot or cold and and a few other things. but there are like 20 some actual tracts that run like little bundles of cable thru the cord, to the brain. any tract that is or becomes affected(can also happen with just a simple bleed in some cases) would show itself in your symptoms. its just how this actually plays out.

i would take a good look at your MRI films but only at the slice pics where your cav is located? you will see it in subsequent pics as a black area within the normal looking cord tissue? you may have to actually look at alot of those slice pics to find the affected level,but you will know it when you see it? once you find those pics,just research spinal tracts til you hit upon one page that i also found that actually displays the tracts all laid out in that same slice pic pattern that the MRI shows, then compare the areas of black in your pics with what you see as a corresponding tract. this is actually how i Dxed my own tract damage, and i was dead on according to my NS when i showed him what i did. i actually have dmage to three seperate tracts. alot of what your true symptoms are is what you look for in that tract that governs it. it also lists what is governed there too. but between your MRI and the tracts pic and most importantly your ongoing or newer symptoms, will kind of give you a rough idea of just what areas of your cord are really involved here.

this is just something i did to try and understand what this cav was doing both pre op and post op too. one thing i wanted to ask about that leg? do you have "hyper reflexes' in it? if you take the end of a butter knife and tap the heavy end under that knee cap like you have already had done many times, see how "brisk' or quickened your reflexes are. if they seem much more quick, in most cases, this IS the result of your cord cav and not something else. espescially if you did NOT actually have this prior to the leg crap appearing. it could simply be the course or another bleed has taken place again. that would have to be defined with another MRI unfortuently.

just some stuff i felt you should know hon. marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 03-27-2009, 02:55 PM   #43
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Re: Chiari dozens of questions about symptoms

Marcia,,,

I was hoping to hear from you again. Thanks, so are you saying that the crawly zapping feeling could be my cavernoma oozing or bleeding? Have you experianced that? I keep wondering why I am having these weird sensations in different places. A couple of weeks ago I went to the neuro and all neuro stuff on me was good. thank goodness.

I have looked at my films and I see the cavernoma in there but as far as what you are talking about slicing and finding different levels etc. I am clueless. I wish there was a way I could show them to you and you can tell me what it seems noone else will. I just want to know if the darn thing is in a good spot or a bad spot. I have heard that if it right up againist the cord it and it caused problems it would be easier to scoop out! True or false? Tell me what you know about symptoms of these things. I actually don't know anything about what to expect and when to push a panic button. Also I have been going to a pt and she has been stretching my neck and shoulder muscles to help with the tightness. It has been helping with the burning itcy feeling under the shoulder blade and she is staying away from T-spine so that should be ok right? She isn't going to cause any problems for me is she? I stopped going to the chiro as i heard with Chiari it is not a good idea.

How do you know if you have a bleed? And how does the mri show another bleed? Does the cavernoma get bigger and will there be a bigger blood ring? I am going to my neuro on Monday and am asking for a better look at it using a better machine as one of the neurosurgeons suggested. If I did have a bleed will they see it? Ok so enough questions for now. Thanks for chiming in and would appreciate you shedding any light on any of these questions if you can... Dawn

 
Old 03-27-2009, 03:00 PM   #44
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Re: Chiari dozens of questions about symptoms

Marcia,
Where was your cav located? Why did they take it out? What problems did you have before they removed and what additional problems did you have after it was removed. Did any of them resolve or get worse. Sorry Yeah I know I said no more questions but hey I couldn't resist... hahaha..

 
Old 03-27-2009, 11:18 PM   #45
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Re: Chiari dozens of questions about symptoms

Quote:
Originally Posted by feelbad View Post
honestly bill,and i DO mean this most sincerly,if you do get that ins, please get thee to your doc and ask to have that MRI done from the brain on down to the sacral. seriously, one of the main reasons i responded to your very first post was i did very much feel that alot of your symptoms really sounded like spinal or the brain issue within that cerebellum where the alcohol actually hits when we drink? you just have so many different widely spaced symptoms that having something going on either in the brain itself or the spinal cord area could easily explain. you just need this one contrasted MRI in order to either rule certain things in or out,ya know? i really DO, as well as the other people who have posted to you over all these months most likely want, is for you to finally have some Dx of what is really going on in there.

having alot of anxiety at this point bill when you consider the length of time this has had to drag out because of your ins situation,well that is probably normal for anyone in your posistion. its finally getting any real answers here for you that will truely help with that and probably a level of depression that just comes along for the ride when anyone is in the same situation you are,ya know what i mean? i really DO hope that your possible ins omes thru for you,really. hang in there bill, marcia
Thanks for the insight. There's a few issues there though. My docs already know I'm an anxiety patient, so I have to wonder how they're going to respond when I "finally cave in" and tell 'em I have like 30 different symptoms and then I just ask "can I have a contrasted MRI?" They just might think I'm crazy and dismiss my claims.

Your suggestions do scare me though, as I'm not one to think "as long as I have an accurate DX, I'm satisfied" like so many of you have done. I'm one to think, "it better not be something too serious." When you're saying my issues could be spinal or cerebellum-related, I'm thinking that must be some pretty serious stuff, relatively speaking, as I've been healthy all my life until about 3 years ago when my symptoms started to get worse. I'm a wimp, through and through, and that's not an exaggeration.

Is there anything in this spinal/cerebellum category that might be treatable without expensive, risky surgery? Could my symptoms be related to a postural/neck problem that could be adjusted? I need to know that some of the diagnoses in this category are benign, just for peace of mind, please?

 
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