chiari effects legs

[irislita]

Hi i want to know in which way chiari can effect ur legs.my ns and doctor say that chiari can only effect the upper part of body as nerves for legs start in the lumbal area.i know this is not right and i know i have strange feelings in my legs and feet because of chiari.when i am standing it feels my feet cant feel the ground and swing around in the inside. So is that the control of the brain then which is not right?or what is it?would be glad about explanation.thanks

[Rahe28]

to irislita and chiariwolf:

Well, it really seems to me that as rare as they say this is and how none of our "episodes" (seizures) are related, It sure didnt take long for 3 of us to come up with VERY similar "episodes". You know I always wanted to be a  geriatrics M.D. .... Now I really wish I did have M.D. behind my name. I would nevr treat my patients like they were "crazy" . I mean, I understand how soooo many people these days lie to docs to aquire pain meds and narcotics....I'm sure they have to maintain a certain level of non-sympatheticism, to keep they eyes open. The pain management specialist I see deals with it everyday. I mean can you imagine when I first went to see him.... I had in tow a 5yr. old a 2yr. old and a 1yr. old....and I was pushing a triple stroller and only 25 years old. LOL...now that I think about it...that would look pretty nuts. It took me seeing him for three months before he realized I wasnt there for the "drugs". I remember he tried to give 180 pk's and I told him no...I didnt want to put all of that into my body and could we try a more natural approach. I dont htink I have ever seen a doctor so excited! I have been fortunate enough with him, that when I tell him something is going on, he believes me...and investigates...this is how the Chiari was actually revealed. He thought I probably had some neck disk protrusions or something...which I do, but it also revealed the Chiari. I am also lucky enough that he actually has a descent understanding of it as well and has done more research for me specifically. It's NL and Ns I keep having the problems with.

Well this just turned into a ramble fest...it's one of those sort of foggy and headache and hand tremor  mornings.

What I was getting at though was that as it could really have nothing to do with the Chiari, it could just as well be related. Chiariwolf, I completely understand what you mean... other than a few days ago when I found this forum, I have always felt like I couldnt talk about it because it is sooooo frustraing when noone understands. I am also lucky enough that my two best friends. lioke sisters to me since I am an only child, and my husband and father have ALL done research on the Chiari so they had an idea of what I was dealing with... though at times ...alot of times ....I still feel like nobody understand. YOu are all so wonderful here to share the hard things that we hava all been going through.... and I am so happy and blessed to have found a Chiari family ! So, thank you all!

Sheila Rahe

[ChiariWolf]

Humm..... thlat sounds all to familar. Except for the going up and down feeling. With me it's more like my entire system just shuts down. Even my brain with the bad ones, I may or may not be aware of who or what is around me. I loose all functions, we're to the point where my wife sees it happening or starting and now she knows I can't respond but just find a way and get me to a dark, quiet room and get everyone to leave me alone. She also knows to do whatever it takes to get me to lean my head back and drink water, swallows of water. I've almost choked to death on several occasions when this happens but she has noticed for whatever reason when she can get me to tilt my head back slightly and swallow water it stops the choking.
Then once is all over my head, neck and shoulders are both weaker than a child, hurt like heck and I seem to stay disorented for the rest of that day if not for a few days.
PCPs answer, this was three months ago, Welll it appears to me this has nothing to do with Chiari or your cyst I belive your just experiencing bouts of depression...... arrrrrrrrrrrggggggggggggghhhhhhhhhhh When do we get past all that!

Funny thing it, I just refuse to talk about it anymore to most. I'm tired of the labels, just want to be a human being.

Thank You for sharing those last comments! You really have helped me to not feel quite so alone.

CW

[irislita]

hi...thanks for all the answers. to rahe28: i do have really bad seizures: it starts with brain fog, blurred vision, the world gets surreal and i feel like fainting, my ears ring like hell, i get dizzy, slurred speach, breathing problems with racy heart, my extremities get icecold...cant stand any light, sound. and i have this i think balance prob.my body cant figure out its position...i am having feelings going up and down when on my legs or swinging like a boat...and get so sick...its mostly when i overdo and do a lot of physical thingd plus a lot of people and noise around me....well thats what i call my seizures as i am not native english speaking i think its the word for it...then after resting and sleeping to get away from the symptoms i wake up totally exhausted with blue rings under the eyes and my legs hurt as if i am growing...actually especially since surgery i never have a day i feel relaxed...i am constantely tired and worn out...
its really a sad matter of fact that there is a big lack of education and specialist...havent found any yet...welll and to make people around you understand what we r going through...4get it, they think we are depressed, make up things. honestly i think i couldnt understand it neither...it is too crazy...for example dizziness...they will never get the way how dizzy i can be...but at least doctors should...thanxx to everyone...have a nice day

[linnielou232]

Reading these post I think we can all agree and it is so flustating to read these because it seem's that all of us who have Chairi have received the crazy look.  It isn't related to Chairi.  I have been dx'd with so many other issue on the journey of finding the Chairi.  It's flustaring yes, but  still very interesting.  Are all of these related.  As I explain it and have on here before.   I use a car as an example.  If something in your car isn't running right and you don't get it fixed.  It causes other problems in the engine.  (Our bodies)  Why doesn't doctor's get this????  Just hope there can be more awareness out there for Chiari.  Not a lot of people of aware of it.  I know I didn't even know how to spell it when dx'd with it.  I have never heard of it before.  We need more NS who is educated in this and as someone mentioned on here above.  We have to grab them around their ear's and educate them our selves.  We should start billing our physician's. LOL.   This forum is the most informative place to come.  All of you have educated me  in some way or another.  We need to continue to letting other being aware of this Chairi so we can get the word out in the world.  Thank's my Chirian friends

[ChiariWolf]

Sheila, Unfortunately, yes I have seizures frequently. Fortunately they are not as severe as some I've seen and most times only last mins at their worst. Most times they don't get bad enough that others notice what's going on, well except for my wife and son. But the aftereffects are very taxing.

As for Drs... well NO they still say they are not related. I also have a cerebellar Arachnoid Cyst which complicates the Chiari as it is actually pushing things both against the brain stem and down the spinal canal. So is the Dr right? I don't know, perhaps Chiari isn't causing it, maybe the AC is causing it?? Personally I feel in my case the two are working against each other to cause the seizures. So that's a long winded way of saying yeah the doctors say its not related, I don't believe them, but there is a chance [at least in this case] that they are correct. The only good thing is that now they do believe it's happening. WOW! That is bad when we see their recognizing something is wrong as relief....

JMO - But you may find, as many here have found, that the only way you will find true help is to grab the lion by the mouth and lead it. Meaning, Doctors are accustomed to us trusting their every word. For you and the rest of us with Chiari, you have to push that thought out of your head. Do not trust the medical community! Do your own research and be your advocate or the help you need will remain out of your reach. This forum is a good place to start by doing just what you are doing in this thread. Ask questions, tell us what is going on and see how many others have the same symptoms.

CW

[selmaS]

  Hi and welcome to the Chiari forum.

Unfortunately CW is right there r too many Drs that ignore chiari or feel it is an incidental finding that can not cause symptoms....they could not be more wrong!!

Use the link CW gave u to research drs names and find  a few to interview...to find the right dr for u...make sure u also educate urself on chiari so u know what the dr should be asking and doing for u.

  Glad to have u here, not happy for the reasons that bring u.

          "selma"

[Rahe28]

Hello. So you have also had siezures? I have never had one before may of 2011, and had 3 back to back. I had another episode in Feb. 05 that landed me in the trauma unit. None of them ever found anything at all, and I was told in may that the Chiari could have absolutely nothing to do with "seizures".  HAve the doctors told you that they are linked. I havent been able to find any info what so ever on siezures and Chiari hand in hand. What type of siezures are they if you don't mind me asking. I am finding more and more through this forum that so many "other" things may well be chiari related. When I go to the nl in a few weeks, we are going to have fun, and I hope he is prepared for a well informed atient ...lol. Really, I'm just tired of being put off. One doctor even told me that I was making htings up.....hm, yep that is exactly what I want to do...make up fake medical symptoms that will cost me thousands to find out about and put me away from my husband and children. Anyway, just curious...

Sheila

[Memphismade]

Chiari and seizures go hand in hand.  I have 2 neuro surgeons to tell me that and my family doc too.. I have had seizures and I have chiari.  Without knowing I had seizures I the past, the ns put me on 2 anti seizure meds the minute they found the chiari. It’s rare and ppl are still researching trying to figure things out. My nephew had it and no one really knew what to do because it’s so rare. However he died but he died from the complications chiari caused but he always had seizures too. Find another doc. One who’s concerned n not just trying to blow u off because they don’t understand

[ChiariWolf]

JFYI Cottagelady- Unfortunately, "oh you have Chiari Malformation, but it's just an incidental finding..." is the answer per norm from most Doctors.

If I were you, knowing what I know now, nothing would stop me from getting that second opinion but getting it from a doctor who commonly treats Chiari Malformation. There is a list of such doctors here on this forum. Not that this is a complete list by any means. These are doctors that others here on the forum have seen.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

CW

[cottagelady]

Hello from KY this morning...3am that is...cannot sleep and found this forum.
I just asked my chiropractor today about weakness and pain behind my knees and he said it is knots related to Fibro.  I have trouble going up and down stairs and my knees give out on me at any moment...I am 44 and have to always have a handrail within grasp!  I also have a diagnosis of Chiari Malformation (5-6mm) and my Neuro said it was not significant enough in size to worry about.  Hitting roadblocks but getting inspired by this forum to seek a second opinion.

[selmaS]

  Told u I understood u....LMAO...well if it is the looney bin we r off to, I am in good company : P


sis

[ChiariWolf]

Wow! U are in trouble sis! You best watch your rearview as you understood me well enough that the looney wagon must be chasing you down! :-) Exactly what I was tryi9ng to say.

CW

[selmaS]

  I think I know u too long cuz that made perfect sense to me....lol...

u r absolutely right...and I have said this too b4, if our nerves r pinched we will not always have the pain they claim we will...the nerve is not working correctly....and that should not be the basis for their assessments.

and we could have pain diverted to an area not typically expected for the same reasons....

  the problem is the drs r so use to looking for a herd of horses that is all they look for and they can not see the zebra standing in the middle of the dang horses.

  So  CW, did I understand u alright? : P

     sis

[ChiariWolf]

But then again there is another possibility!

My dad always told me growing up that there was not a brain in my head. So perhaps the real answer is just that without a brain we don't feel what we think we should feel. Or we do feel what others think we don't feel.

Being sarcastic but my opinion remains that with the brain stem being pinched off like a water hose that is exactly what happens. We really do not feel what we should feel but do feel so many different pains [due to nerve impengment] that Dr's tests can't seem to find the cause for...

Ok, leave me alone. I know that probably doesn't make sense to anyone but me. However, it's cold outside and I just came in from the car my brainless neck is in spasms and of course that means my wonderfully cracked head is misbehaving itself. So that is my excuse for any weird comments above!

CW

[selmaS]

Hi...my Drs asked me if I could feel the ground below me...so yes, that could very well be a chiari issue or a chiari related issue such as a syrinx, tethered cord, or ehlers -danlos....but when the brain stem is affected the whole body can feel the repercussions

[irislita]

Yeah...it is just so complex up there in our heads.i repeat its just amazing how a few mm of herniation can impact our bodies...

[ChiariWolf]

Again, I'm no doctor but I've had those same problems for years. In fact for probably about the last 30 or so years. Cramps that feel like they are breaking bones I've had since birth. I've also been dx with two different types of seizures. But then as with many of us CM is not the only thing going on so who knows the real cause.

I look at it this way though. If you have two dogs in seperate pens, and you put a duck in one pen and the duck is killed or mauled but when you put it in the other pen the duck sleeps with the dog. And then you put both dogs in the same pen with the live duck but it gets killed; well who do you think killed the duck?

Same with our bodies, when you see a number of people who happen to have CM having the exact same symptoms - Well you know which dog caused the dirty deed!

CW

[irislita]

P.s.and during my bad seizures i have the feeling that inside my legs are swinging around like hell...its a disgusting feeling.
To rylansmom;i admire u being mom and working full time...i swear i could not handle it

[irislita]

Thanks for ur answers.my ns who is not specialized in chiari told me so and my general doctor.before i had my symptom bomb exploding in may of the past year i had cramps on my feet for minutes and then in the second seizure of chiari a bit later i also dragged my foot and couldnt feel half of my body.no my most annoying feeling is the non existing up and down or moving around feeling in my legs...when its quite i get kneepain on the left and my legs hurt as if i had a growing attack.its strange and i even cant put it into words...

[Rylanesmom]

I also have ehler danlos so some of fine can be that but have have spasticity issues in my entire body.  I also get electric vibration and numbness in my entire body even my feet.  (that part is chiari for sure). Is this a chiari specialist telling you that it can't be chiari?  Since there is brain compression and cerebral  flow blockage my ns has not said that anything could not be my chiari.  He does tell me that EDS or pseudo tumor could be causing some of the symptoms but it is hard to know which ones other than a few that are clearly EDS.  

[ChiariWolf]

JMO and I'm no doctor.

However, I've had leg problems since birth. Things are to the point were my wife knows when Chiari is going to wreak it's wonderful self by the way I walk. She put this together, I honestly didn't notice until she was telling a friend a year or so back and my little "ah-hah" lights went off. She had noticed that sometimes for a little while other times for a few days before a bad ephisode I'd start dragging my feet and often times trip and fall over nothing. My PCP of course says it can't be related. My former NS's PA explained it all away to to us, she told us how CM effects an unborn fetus and said that the Dr would be showing my on the MRI the cause of my walking issues. She was better than any Dr I've ever seen at explaining things to the patient.

Anyway, like most of us it's a long story, but IMO leg problems, pain and tingling in the legs and even severe leg cramps 'can' be related to or directly caused by CM. Again this is JMO and I've not found much written to back it up. All I have is a lifetime of experience with it- so I can't prove my theory but will definitely be watching this thread develop.

CW