Does anyone else experience pain on one side verses the other?

Symptoms and Treatments
1

I have alot of pain on my right side... I do have pain and pressure on the left side but not as much as the right. I am going to the free clinic thursday and I am really not looking forward to it because the docotr I see says Chiari is out of his area of experience and I cannot get into any other doctor without insurance. I have waited until I cannot stand the pain and I have a list of new symptoms that are just getting worse.

Sometimes things are there for a few days then go away. Then there are things that keep coming up and don't go away. I never know what is from chiari and what could be something else.

I am soooooo tired of taking medications that sometimes I just want to give up. I WON"T let Chiari take my life.

Sometimes I jsut want to be normal again and have a normal life with normal things and not a pain day everyday. I have lost alot of my friends because they say I am too depressing. Well if you ask me how I feel and don't want an honest answer don't ask the question.

I really just wanted to know if anyone has pain/pressure on one side more then the other???

I have tried sleeping differently and all sorts of meds and nothing seems to work.

All advice is worth listening too!!

2

Most of my pain is concentrated on my
left side. Seldom is my pain on the right, but if it is it encompasses my entire head.

3

Hi…

I have left sided weakness and more pain on the left side…more so weakness in my left leg…no doc can quite explain this to me!!

Does your state have a plan for folks without insurance…at a low cost??? some states do.

Have you had MRI’s done of head and full spine???

Your friends that say you are too depressing are a bit self centered if you ask me…like you said…if you don’t want to know how i am feeling…don’t ask!!!

We are all in this together, is the way i see it…if we can be here for each other and help .even just to ‘listen’ is a gift.

Take Care and God Bless,
Lori

4

Lori,

We have a free clinic or a low cost clinic here that I use. However, the doctors there state that Chiari is out of their field of experience and want to reffer you to a Neuro doctor. That being said none of the Neuro doctors here are affordable for people with no insurance or no income. I do not have $200 to go see a doctor that is why I am using the low cost clinic. So I am stuck between a rock and a hard place.

I applied for medicaid and was denied now have reapplied and I am waiting to see what happens this time around.
I can’t work and people seem to think it is just because I am too lazy to do so. I just want to slap them silly! I worked for years and supported myself and going from that to being supported is a BIG adjustment.
I on occasion run Karaoke or DJ a wedding through my boyfriends DJ business but on a bad day it just makes it worse because you cannot cancel on a wedding…
I just wish doctors were more educated and so where people maybe this would be easier then it was…

5

I have been doing alot more research to try and get all the info I can. I have found and others may have already know this but Chiari is concidered a rare disease because it only effect 1 in every 2000 people. I know that there are more and more people being diagnosed but still if you look at the numbers of people in the world we still are in a very small percentage. I am not going to give up on educating others. I have emailed several of the talk shows asking to do a show on Chiari Malformation. I could care less if I was mentioned I just want someone to help educate others.
I am glad chiarians have this page to go too!

6

My pain is concentrated on the right side… I am right handed, but yet, my right hand is MUCH weaker than my left… Has been that way for alot of years now… Right now… my right hand is freezing(cold to touch)… and my left is normal temp… Just the way my body is… They say its something to do with the way that the brain is positioned. Means your problems are more on the opposite side of where you have pain/numbness… Not sure I fully agree with that… But thats the way the brain works…

7

haha… except for me… guess I am just the oddball… :slight_smile:

Abby said:

Did anyone else notice, that most of our pain is on the LEFT SIDE?

8

Nope… am right handed… Dr’s said it was carpal tunnel…until the test’s showed I had no nerve damage, then it started to radiate down my whole right side… and when I did the squeeze test my left hand (which is usually weaker if you are right handed) showed to be twice as strong as my right. Crazy dr’s are always trying to blame our symptoms on something else…

Abby said:

Your not odd, just left handed. hahah

9

I also have more pain on my right side. I do get it here and there n my left but mostly on my right. Lately I have found laying on my left side causes my right side to get tingly. I’m still new to all this and waiting to go for my full spine MRI and cine MRI. I do get bad headaches that hurt my entire head though but have found more recently that I sometimes get one sided headaches.

10

Lori,
I have the same problem with my left side. I have asked many doctors as to what this could be caused by and I get a plether of answers… from bulging disc, to fibromyalgia. Not a single doctor seems to care a bit about the fact that I have Chiari. How strange…

lori landi said:

Hi…


I have left sided weakness and more pain on the left side…more so weakness in my left leg…no doc can quite explain this to me!!



Does your state have a plan for folks without insurance…at a low cost??? some states do.



Have you had MRI’s done of head and full spine???



Your friends that say you are too depressing are a bit self centered if you ask me…like you said…if you don’t want to know how i am feeling…don’t ask!!!



We are all in this together, is the way i see it…if we can be here for each other and help .even just to ‘listen’ is a gift.



Take Care and God Bless,

Lori

11

I wish the doctors would listen to us, I mean we are the ones that are paying the bills! For some reason I have heard from alot of people with Chiari that say they are treated like they do not know what they are talking about. I guess it is hard for someone that does not go through what we do on a daily basis to even begin to understand. I try and always take my boyfriend with me so that he can help express what he witnesses me go through on a daily basis so that the doctors can have a better understanding.
I think that we put our doctors on a platform ( not pedistal) thinking because they are medically trained they should understand what we go through. The fact of the matter is that they are only human too and since their really is not alot of evidence to support Chiari and that each case varies in limitations and ailments that it is really hard to say, “yes this is Chiari related” We chiarians live all of the US and we see a number of different types of doctors for different ailments. I wish that just like neurologist and podiatrists that there where more doctors that just delt with Chiari and the condition but there are not. We have neurosurgeons that want to cut us open and dig around.
Sometimes I think that we get frustrated because our symptoms are not going away. The reality is if the doctors we see would just be honest and say well this is a trial because I am not sure if this will work and just do everything possible and really listen to us then maybe we would feel like we are being helped and not just controlled.




Abby said:

Well anyway, you know where your pain is, just trying to tell those Crazy doctors, is the problem. RIght?

Teresa Brumley said:
Nope… am right handed… Dr’s said it was carpal tunnel…until the test’s showed I had no nerve damage, then it started to radiate down my whole right side… and when I did the squeeze test my left hand (which is usually weaker if you are right handed) showed to be twice as strong as my right. Crazy dr’s are always trying to blame our symptoms on something else…


Abby said:
Your not odd, just left handed. hahah

12

also this is still rare and when the brain and spine is concerned they dont know enough about it, there is still alot that they need to learn,

its a catch 22, you have to find someone that will listen, its frastrating but its worth it once you get there, i find that just never givve up, keep pushing,

i hate doc, they are pompus gits, that think they are better than us and because they have a docit , they know better, we have to teach them that in some cases they are not,

just an example, my son just had tounsills out, and couple hrs later the hospital bring in dinna, they serve him fish fingers, i told them that there is no way that he is going to eat it, find something soft, like jelly, one lady told me, that this is wht they feed them and he doesnt have a special diet, i got angry and said take it away, or you will rip the back of his throat, she walked out angry, another nurse came in and said sorry she will find something else for him, i said thankyou, later that night i asked the nursing y they dont have special meals for the ones that have just had tounsills removed, she said that the quicker they eat hard food, is less risk of bleeding, cause the scab that forms can be scraped off when eating hard food, so i told her that in my family they tend to bleed if eat proper food,

anyway what i was getting at, was he needed time to heal before he could properly, and had to tell them why it shouldnt be like that, also healing is alot slower if you dont allow it to heal,
sometimes we are the ones that have to inform them that theres are our problems and to do something about it, alot dont know enough them selves.

sorry that was long nearly lost my point, i think i still had it, lol

13

the surgeon told me to give soft foods, but in the ward they chose not too, luckly i knew better, they were proberly being lazy.
if i was a parent that didnt know better, what problems could of that caused, sometimes we get diiferent answers and opinions from different professionals that why i think its important to be empowered with the knowledge to question it,
it goes with us, if we didnt search and ask what is the best form of treatment, or proceedure, and knowledge ourselves we will all end up with ripping ourselves, or even learn from there mistakes that have happned to our chiairians

14

my pain in my back is always on the right side. inside my right shoulder blade it is always sore. no matter what. and that’s where the odd zapping feeling happens too. as far as my head… lower over upper.

15

LEFT!! The reason I say this in capitals is cos I recently recieved a letter from a doctor it wasn’t for me it was just a letter sent from one doctor to another and i was just sent a copy. I was fuming with it. Through the whole thing it said I had been saying that the pain was on my right, yet the whole time I never said anything about my right I have always said it was on my left.

Please don’t give up :)!! I feel like that some day’s and especially with the friends I have lost a lot of my friends. They seem to think as I am not dying, as I am not a cancer patient or waiting for a heart transplant then I should shut up complaining. One friend stayed one night as she needed a place to stay and then the next day when I had a hospital visit she was home again, I told her what happened she just simply said ‘Oh ok so you can go back to work then and stop f*cking complainging to me’ lets just say I had some nasty things to say back. I never knew friendship was a one way street. You really do find out who your true friends are.

I really do feel sorry for you with the insurance thing as I could never imagine not being able to see a doctor because I could not afford it, I never have understood your health system. I am really sorry you feel the way you do :(!!

16

Thank you Lexi! I have lost friends and some family have just grown distant because they just do not want to take the time to learn and understand. I feel ya with the friends. I have a friend who has just been sick because she doesn’t take care of herself. I am always there for her even if it takes all I have sometimes. I was in a car accident April 20th of this year and I was down and out for 8 weeks. That was very hard and the amount of pain I was in was horrible. I was told by this friend to suck it up. I could not believe that and I too had some choice words to say and if I was able to move this friend would of got slapped! Needless to say am not friends with this person anymore. She lost alot of mutual friends because she was ignorant.
My boyfriend and his children have seen me go from perfectly normal to think I am dying in just a few minutes. Not to mention I shake and have seizure like episodes. My newest thing that just started about 7 days ago is I get dizzy. Out of the blue I get dizzy and feel like I am going to pass out. I have no idea what that is but it is starting to concern me just slightly. I go back to the dr on Nov 4th so hope to ask about that if it hasn’t gone away.




Lexi Vincent said:

LEFT!! The reason I say this in capitals is cos I recently recieved a letter from a doctor it wasn’t for me it was just a letter sent from one doctor to another and i was just sent a copy. I was fuming with it. Through the whole thing it said I had been saying that the pain was on my right, yet the whole time I never said anything about my right I have always said it was on my left.


Please don’t give up :)!! I feel like that some day’s and especially with the friends I have lost a lot of my friends. They seem to think as I am not dying, as I am not a cancer patient or waiting for a heart transplant then I should shut up complaining. One friend stayed one night as she needed a place to stay and then the next day when I had a hospital visit she was home again, I told her what happened she just simply said ‘Oh ok so you can go back to work then and stop f*cking complainging to me’ lets just say I had some nasty things to say back. I never knew friendship was a one way street. You really do find out who your true friends are.

I really do feel sorry for you with the insurance thing as I could never imagine not being able to see a doctor because I could not afford it, I never have understood your health system. I am really sorry you feel the way you do :(!!

17

Yeah I don’t blame you for not being friends with her at all!

The dizzy thing I understand in a way. I have head rush as I call it, like just for no reason just sitting there and woah head rush and it’s like I haven’t actually been doing anything :S! So I stand up move about and feel as if i am going to black out… Ahh Pain in the back side…

Not long to wait hope you have answers… :)!!



Stacy Elaine Zimmerman said:
Thank you Lexi! I have lost friends and some family have just grown distant because they just do not want to take the time to learn and understand. I feel ya with the friends. I have a friend who has just been sick because she doesn't take care of herself. I am always there for her even if it takes all I have sometimes. I was in a car accident April 20th of this year and I was down and out for 8 weeks. That was very hard and the amount of pain I was in was horrible. I was told by this friend to suck it up. I could not believe that and I too had some choice words to say and if I was able to move this friend would of got slapped! Needless to say am not friends with this person anymore. She lost alot of mutual friends because she was ignorant.
My boyfriend and his children have seen me go from perfectly normal to think I am dying in just a few minutes. Not to mention I shake and have seizure like episodes. My newest thing that just started about 7 days ago is I get dizzy. Out of the blue I get dizzy and feel like I am going to pass out. I have no idea what that is but it is starting to concern me just slightly. I go back to the dr on Nov 4th so hope to ask about that if it hasn't gone away.


Lexi Vincent said:
LEFT!! The reason I say this in capitals is cos I recently recieved a letter from a doctor it wasn't for me it was just a letter sent from one doctor to another and i was just sent a copy. I was fuming with it. Through the whole thing it said I had been saying that the pain was on my right, yet the whole time I never said anything about my right I have always said it was on my left.


Please don't give up :)!! I feel like that some day's and especially with the friends I have lost a lot of my friends. They seem to think as I am not dying, as I am not a cancer patient or waiting for a heart transplant then I should shut up complaining. One friend stayed one night as she needed a place to stay and then the next day when I had a hospital visit she was home again, I told her what happened she just simply said 'Oh ok so you can go back to work then and stop f*cking complainging to me' lets just say I had some nasty things to say back. I never knew friendship was a one way street. You really do find out who your true friends are.

I really do feel sorry for you with the insurance thing as I could never imagine not being able to see a doctor because I could not afford it, I never have understood your health system. I am really sorry you feel the way you do :(!!
18

im sorry that everyone has had an experience like that, ive lost my best mate when i got really bad, and slowly im losing my family, my 93 yr old grandmother always says they do worry about you, but i never see it or hear it from them, when i ask for help they always saay where is your husband he should be,

i understand how it sucks, and by god it hurts, sometimes it worse with peoples hurtfull words, then having chiari, it slowly brakes you apart,

ohhhh im frastrated

19

I’m slowly losing my best friend too! No one can truly understand the pain we go through other than ourselves and other people with ACM…
My mum say’s that my family does care but yet not one has called to see how I am. :S that annoys me.

I am frustrated today toooooo!! very much soo… If I have one more arguement… Won’t finish that sentence lol!!!



joelene hossack said:
im sorry that everyone has had an experience like that, ive lost my best mate when i got really bad, and slowly im losing my family, my 93 yr old grandmother always says they do worry about you, but i never see it or hear it from them, when i ask for help they always saay where is your husband he should be,

i understand how it sucks, and by god it hurts, sometimes it worse with peoples hurtfull words, then having chiari, it slowly brakes you apart,



ohhhh im frastrated
20

definitely. my pain from my chiari is mostly on the right side. I also feel pressure that mostly on that side too