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Should I Be Worried?
Here I am in Arizona, suppose to be enjoying myself.... we came down here from Canada for the winter...before I left home I got my MRI results,, showing to tonsillar ectopia of 5 mm in size...the NS said that it was not ecessivley tight...so didn't think anything had to be done right then. I"m not happy with him saying " excessively tight". It sounds to me that it is tight,,, why would he say 'excessivly"??
I"ve been having headaches,, weird ones,, that I never had before..and pain between my shoulder blades and up into my neck as well... My balance is off...I do stagger a bit...and am also really suffering in the mornings,,can hardly get up with ease... lots of pain and stiffness.......so I have to take a painkiller before I even attempt to get out of bed.... I lie in bed till the painkiller has kicked in, then I get up with less pain.
So I am worried...and wondering if we should head back home for further testing...and maybe this time witha different NS.... I have never liked him and the way he treats me.... he also said that, what I have has nothing to do with my poor memory,,concentration,,vision,,and a whole host of everything else that I can't remember at this moment...
It would cost us too much money to fin a NS here in Arizona.....
I don't have my results with me here...and it would be so much easier for me to explain things to you....
Any help I can get, I would appreciate soooo much!
Thankyou in advance....Love & Hugs, achyten
I"ve been having headaches,, weird ones,, that I never had before..and pain between my shoulder blades and up into my neck as well... My balance is off...I do stagger a bit...and am also really suffering in the mornings,,can hardly get up with ease... lots of pain and stiffness.......so I have to take a painkiller before I even attempt to get out of bed.... I lie in bed till the painkiller has kicked in, then I get up with less pain.
So I am worried...and wondering if we should head back home for further testing...and maybe this time witha different NS.... I have never liked him and the way he treats me.... he also said that, what I have has nothing to do with my poor memory,,concentration,,vision,,and a whole host of everything else that I can't remember at this moment...
It would cost us too much money to fin a NS here in Arizona.....
I don't have my results with me here...and it would be so much easier for me to explain things to you....
Any help I can get, I would appreciate soooo much!
Thankyou in advance....Love & Hugs, achyten
COMMUNITY LEADER
We have a GERD forum here and the Health Pages there have a List of foods to avoid......and lifestyle changes....keep in mind...not all the foods safe for me , will be safe for u...same goes with foods to avoid....keep a journal.
It will help u feel better.
"selma"
It will help u feel better.
"selma"
I know when I eat tomatoes,, apples,,,, things are acidic,, bothers me, but no I don't follow a diet for acid reflux,,, only because I don't think it's bad enough.. I avoid eating things that are acidic,,but there's most likely a lot more that I don't know.....
I better look into a diet for that asap....
Hugs,, Jennie
I better look into a diet for that asap....
Hugs,, Jennie
COMMUNITY LEADER
Hi Jennie,
If u just recline the chair a little, u can still watch the road...I can't sleep either...plus it is easier to know when we will hit a bump.
The big soft pillow helps me....the longest trip I have been on is 3 hrs and that was coming home from the hospital.
I also have one of those neck pillows, but the adult size is too big to use as intended.....so I use it with the opening where my scar is...that can help too to keep the head from moving and u really wouldn't need to recline with that one....I do with the bed pillow so it is not in my DH's way.
I asked about the reflux as this can add to the nausea....do u follow a diet for those with reflux?
"selma"
If u just recline the chair a little, u can still watch the road...I can't sleep either...plus it is easier to know when we will hit a bump.
The big soft pillow helps me....the longest trip I have been on is 3 hrs and that was coming home from the hospital.
I also have one of those neck pillows, but the adult size is too big to use as intended.....so I use it with the opening where my scar is...that can help too to keep the head from moving and u really wouldn't need to recline with that one....I do with the bed pillow so it is not in my DH's way.
I asked about the reflux as this can add to the nausea....do u follow a diet for those with reflux?
"selma"
Funny you should mention my head being stablaized...... you know?
When we travel,, short or long trips.... I cannot lay my head back at all,,I'm not one who can sleep while travelling,,, or even totally relax.Any kind of a bump on the highway bothers my head and neck area if I try to rest my head.... I"ve never taken a pillow with me either...I have always felt like I should keep my eyes on the road. I don't know why I feel like I have to be alert when travelling.. I think it's a guilt thing with me,,,and have to keep my eyes on the road just like him...
My hubby has been a little controlling all my life.....so I guess that why the guilt thing...
I"ve always been like that,,, I cater to him if he's sick,,, and he doesn't notice when I"m sick or anything...I get no suppport from anyone in the family,, including my mother and siblings,,, and even my own children, who are all married...
Why I got into this,, I"ll never know....sorry for venting like this....
Do I have acid reflux? I do,but not bad..ty for asking ....
Hugs,,, Jennie
When we travel,, short or long trips.... I cannot lay my head back at all,,I'm not one who can sleep while travelling,,, or even totally relax.Any kind of a bump on the highway bothers my head and neck area if I try to rest my head.... I"ve never taken a pillow with me either...I have always felt like I should keep my eyes on the road. I don't know why I feel like I have to be alert when travelling.. I think it's a guilt thing with me,,,and have to keep my eyes on the road just like him...
My hubby has been a little controlling all my life.....so I guess that why the guilt thing...
I"ve always been like that,,, I cater to him if he's sick,,, and he doesn't notice when I"m sick or anything...I get no suppport from anyone in the family,, including my mother and siblings,,, and even my own children, who are all married...
Why I got into this,, I"ll never know....sorry for venting like this....
Do I have acid reflux? I do,but not bad..ty for asking ....
Hugs,,, Jennie
COMMUNITY LEADER
Hi Jennie,
many of us with chiari can also have a issue with cranial instability.U may want to recline the front passenger seat a little and use a bed pillow to help stabilize ur head.
May I ask, do u have acid reflux?
"selma"
many of us with chiari can also have a issue with cranial instability.U may want to recline the front passenger seat a little and use a bed pillow to help stabilize ur head.
May I ask, do u have acid reflux?
"selma"
I was thinking it might've been why I am worse now,,,, it took us 6 days to get here in Az.
We came here pulling our camper,,and we live in it here in an RV Park..where all the other snowbirds come to... there's tons of RV Parks here in Yuma...I didn't realize how hard the trip was on me till we a couple days after we settled in. Then I went into a flare big time...and then the chiari symptoms kicked in..
We have been here for 2 weeks yesterday,,,,not long at all... and we were hoping to stay here for the winter months...
The nausea started before I took the pain pills hon....so when I get bad I take gravol,, thats for nauesa....and it really helps. Thank God for that....
Thankyou for telling me where to find info on EDS....I"ll be heading there right now,,, ty ty ty.
Hugsssss, Jennie
We came here pulling our camper,,and we live in it here in an RV Park..where all the other snowbirds come to... there's tons of RV Parks here in Yuma...I didn't realize how hard the trip was on me till we a couple days after we settled in. Then I went into a flare big time...and then the chiari symptoms kicked in..
We have been here for 2 weeks yesterday,,,,not long at all... and we were hoping to stay here for the winter months...
The nausea started before I took the pain pills hon....so when I get bad I take gravol,, thats for nauesa....and it really helps. Thank God for that....
Thankyou for telling me where to find info on EDS....I"ll be heading there right now,,, ty ty ty.
Hugsssss, Jennie
COMMUNITY LEADER
Hi Jennie,
It is possible that the flight to AZ has brought on the symptoms u r dealing with now...how long has it been?The pain meds can be the cause of the nausea too...look at the side effects just to be sure.
Well I was told fibro and then I was Dx with the EDS...we do have a page of info on it in the Health Pages....there is a icon top right that will take u to the menu pages.
Cognitive issues r chiari , no worries we all understand here.
Feel free to ask questions that is y we r here : )
"selma"
It is possible that the flight to AZ has brought on the symptoms u r dealing with now...how long has it been?The pain meds can be the cause of the nausea too...look at the side effects just to be sure.
Well I was told fibro and then I was Dx with the EDS...we do have a page of info on it in the Health Pages....there is a icon top right that will take u to the menu pages.
Cognitive issues r chiari , no worries we all understand here.
Feel free to ask questions that is y we r here : )
"selma"
Yes,, I am wondering myself why the tightness...though he says 'not excessfully" tight. But for the NS to say excessliy,,, it must be tight somewhat...or he wouldn't have said that....and no I haven't had any follow up with a CINE MRI...syrinx, or tethered cord.
My GP told me that I had a tumor,,, and thats all he said... this was the day before left...
My GP made it sound like it was nothing at all...Ugh!!! Thats how he is,,,never explains anything to me,,,, and is always in a hurry to get me out of the office... I know I have to go back and find someone who look after me the way they should.. It's so hard to find a good Dr. or even a NS who knows more about Chiari symptoms.. and my symptoms have increased since being here in AZ...to the point where I"m taking more painkillers than I was in Canada.. I feel nauseous a lot too.
You had mentioned something like EDS,,, and I"ve been researching that,,, but maybe you know where I can go to find out more about it,,,, maybe you have that right here in your forum,, but I can't find it....dah! You really me thinking that I may not have fibromyalgia but EDS... You know? I"ve been having these Chiair symptoms for a long time, but blamed it on fibro....but now i'm thinking differently with getting worse,, whether the heat here has something to so with it or not, i don't know...
If I"m repeating myself here,,I"m sorry,but it seems to go with what I have... I feel like I do a rattling on...and feel stupid for being like that....lol.
I"ve learned so much from you selma dearest,, and i'm so happy to have found you,,, and I don;t how I did either, lol. God must have led me here.... sure no coincidence,, I feel...
My mind tells me that I should go back home and get things looked into,,, but my heart wants to stay.....decisions decisions!......but I am afraid
Thankyou, for your helpful words, selma!!!
Hugsssss, Achyten/ Jennie
My GP told me that I had a tumor,,, and thats all he said... this was the day before left...
My GP made it sound like it was nothing at all...Ugh!!! Thats how he is,,,never explains anything to me,,,, and is always in a hurry to get me out of the office... I know I have to go back and find someone who look after me the way they should.. It's so hard to find a good Dr. or even a NS who knows more about Chiari symptoms.. and my symptoms have increased since being here in AZ...to the point where I"m taking more painkillers than I was in Canada.. I feel nauseous a lot too.
You had mentioned something like EDS,,, and I"ve been researching that,,, but maybe you know where I can go to find out more about it,,,, maybe you have that right here in your forum,, but I can't find it....dah! You really me thinking that I may not have fibromyalgia but EDS... You know? I"ve been having these Chiair symptoms for a long time, but blamed it on fibro....but now i'm thinking differently with getting worse,, whether the heat here has something to so with it or not, i don't know...
If I"m repeating myself here,,I"m sorry,but it seems to go with what I have... I feel like I do a rattling on...and feel stupid for being like that....lol.
I"ve learned so much from you selma dearest,, and i'm so happy to have found you,,, and I don;t how I did either, lol. God must have led me here.... sure no coincidence,, I feel...
My mind tells me that I should go back home and get things looked into,,, but my heart wants to stay.....decisions decisions!......but I am afraid
Thankyou, for your helpful words, selma!!!
Hugsssss, Achyten/ Jennie
COMMUNITY LEADER
Hi....I wonder if u had a CINE MRI to see if u had a CSF blockage, or been checked for a Syrinx, tethered cord or other chiari related condition?
I am not sure how this dr is determining what constitutes the tightness or what would make urs excessively tight??
Ur symptoms do sound like typical chairi issues.Have ur symptoms increased since u arrived in AZ?
Not sure if there r chiari specialists in AZ, but Dr Oro is in CO......many of the drs like Dr Oro will review ur MRI's for a fee and suggest options.
Once home u may want to try this and ask if he is familiar with a chiari dr in Canada.
It is possible that u may have another condition in addition to the chiari.
"selma"
I am not sure how this dr is determining what constitutes the tightness or what would make urs excessively tight??
Ur symptoms do sound like typical chairi issues.Have ur symptoms increased since u arrived in AZ?
Not sure if there r chiari specialists in AZ, but Dr Oro is in CO......many of the drs like Dr Oro will review ur MRI's for a fee and suggest options.
Once home u may want to try this and ask if he is familiar with a chiari dr in Canada.
It is possible that u may have another condition in addition to the chiari.
"selma"
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