Can some one explain to me

[northernstarmn]

Last week we went to Wisconsin...400 mile drive..had apt on wednesday then drove home another 400miles-
when we were about an hour away from home i started to get a headache which started in the front of my head and into my eyes- by thursday it started working back my head slowly by friday it was at the back of my head and into my neck and shoulders ( left side more painful) which then led down to the elbow of my left arm..by saturday i could hardly move my head and arm at all....it still hurts and NONE of the meds i am taking are even getting near the pain....the flexeril i was taking has since stopped working...today the neck shoulder and arm still bother me but i can now move slightly, heat doesnt help too much and neither does ice, also i laid flat and my head just pounded away terribly...

now i am wondering WHY i have this pain?,  Is it Chiari related,Hydro related or Cervical stenosis related which i think it is, because it almost feels like my head is too heavy for my neck

this is just crazy--

[selmaS]

HI Lisa......sounds like u do need to give him a call......especially if ur DH doesn't remember what  the dr said may be causing this.....

Ask the PT if they have experience and knowledge of  chiari......good luck : )

"selma"

[northernstarmn]

seen PCP who is sending me for PT, he wanted MRI but i kinda convincced him this was the better rought...

Selma-- No Dr.H never mentioned cerviccranial instability Hmmm would make sense tho' being it felt like my head was simply just to heavy for my neck to hold up..

Shoot he did say what was causing it but i forgot what he said i will have to ask hubby,
He did show me the scan of it...said it may never bother me but being it already does-to come back and see him.

[selmaS]

Hi Lisa,

Did Dr H ever mention cerviocranial instability?....I may have asked b4....but I keep thinking it could be this or the stinosis......I always use a big fluffy bed pillow to help keep my head from bobbing all around......

I would try the methods we use for a CSF leak...lie flat for a few days, plenty of water...and caffeine.....

I know u also have stinosis...do u know if it is creating a CSF blockage?.....


"selma"

[*Stormy*]

Yeah I have to overdose on the tylenol too most of the time...I usually take it an hour or two before I should...I know it's not good but no other options so far.

I hear you on that one..it is frustrating how just little things can set it off..I have no idea on what has set off this round of pain for me :(

Carolyn

[northernstarmn]

Ive had that tens machine for a leg issue and it didnt do a darn thing for me....but my back /neck might be different..time will tell....I have thought about PT but i need a doc to say go or my ins wont pay for it....I am not big on taking drugs if i dont need them but if the cocktail i was taking didnt work iam highly doubtful anything else will....tylenol doesnt do anything for me at all, unless i take 3 X the dose and well thats simply not good either.... i will let  ya know what they come up with....

just gets me how a drive could cause all these issues....kinda ticks me off actually
Lisa

[*Stormy*]

I'm glad to hear that you are going to see your dr's but how frustrating to have to wait in pain!!!
I agree that it sounds muscular as I suffer in the same way as you and I have several issues with my muscles. I have never found anything that works (even muscle relaxers) so eventually I gave up and just take Tylenol and bare with it. That's why somedays I spend a lot of time in bed!! Hopefully, they will come up with a solution for you and if they do, please let me know!!
Have you considered going to PT? A lot of people seem to have faith in the TENS machine to help with muscle pain. I am looking into that myself right now..
Carolyn

[northernstarmn]

finally got call from my neuro he said go see your PCP sounds muscular, i will c u but cant til late next week and i cant get into see my PCP til tuesday, and they WILL NOT ever perscribe anything for me til they see me...told me to continue taking what i have been----what i need is a muscle relaxer the flexeril has stopped working!! YUTZ's

it is however feeling A LITTLE better, i can now hold my head up, I wear the neck brace about 1/2 the day because wearing it constantly makes it hurt in a different way--kinda weird but its true, and i dont want my muscles to get too weak by having the brace on all the time...however i still have the neck stiffness, the sholder and arm pain...nothing is working for that...(oxy, percocet,tylenol3,OTC's) then this morning i woke up with a headache again this time it is solely on the Left side of my head and feels migraine like in intensity......

UGH-- Iam growing tired of this roller coaster ride...

[*Stormy*]

I have thought about getting a neck brace, especially before the surgery but when I did some research it seemed that most people found a huge benefit when the brace was on but a worsening of symptoms when they took it off. I don't know post op if it would still be the same effect. Please keep me posted...if it does work for you then it may be something I try too for those long car rides.

Thanks
Carolyn

[selmaS]

Keep us posted  : )

[northernstarmn]

we'll see if it helps in the long run...it has eased some of the pain for now...pushing my head off my right shoulder lifted it up to a more normal position...

[selmaS]

Hi Lisa....I also have stinosis that is in need of surgery...and I have this problem with car rides as well....

My big fluffy pillow works wonders for me....yrs ago, a dr gave me a neck brace...and it put my neck into a position that made me feel worse...so I am not sure I want to try it again...but I am so glad that the brace is helping u.

"selma"

[northernstarmn]

well as i thought,. the ride is the cause..
Dr.H says either the trapzoid (?sp) muscle OR the cervical stenosis, hes more leaning to the cervical stenosis...
to wear a neck brace and use heating pad and take muscle relaxers or OTC med for pain.
I honestly never thought about the ride causing me problems, but it did and how, Now I will not leave the house without it,,anything too long and it will go on!!...
---- so Carolyn id say if you are having problems with somewhat local drives, I d suggest taking a neck brace and meds with you....

Still waiting for my neuro to call me back..called fri and mon fri he was out, mon he was on rounds called again today and he was with patients he will call me back before he leaves for the day..We'll see....

I got a soft neck brace adjusted it for me- and its finally starting to ease the pain a bit--

[*Stormy*]

yeah...I was thinking later after I responded to this. A car ride for me if it is any longer than about 20 minutes starts to cause a lot of discomfort and pain at the back of my head, spine and along my arm and side. I have to keep moving and turning to try and relieve it. I haven't been in a car any longer than that for awhile so I'm not sure what it will do to me. That is probably what triggered it though..

I hope you feel better soon!!!
Carolyn

[selmaS]

Hi Lisa...so sorry u r feeling so badly...the car ride itself may have triggered this...however, I wonder if u might have cerviocranial instability...and like Carolyn mentioned all the muscles in our neck and shoulders will be affected by the surgery...I tend to have tight muscles there as well....I try to roll my shoulders and do my neck exercises to help keep them loose.

Try a warm soak in the tub.....and then on and off heat using a heating pad...and rotate those shoulder after u heated them as the heat will loosen them up and than u move helps to stretch them out.

Good luck I hope u feel better soon

"selma"

[*Stormy*]

I'm so sorry to here that you are dealing with so much pain. I frequently get pain like that in the same pattern and I always think that it is like all the muscle along the way seem to be affected. It makes them weak and painful...this is a symptom that I have dealt with since early on with Chiari. I find too mine spreads until it takes over the whole side... I get the heavy head feeling often and I feel it is b/c the neck muscles get so weak they don't want to support my head. Honestly, I've tried muscle relaxers and prescription meds and I didn't find any of it helped...all it did was space me out.
Why it is coming now if you didn't have it before? I'm not sure, but combined with the high pressure feeling you are getting I would think it would warrant a call to your NS. I truly, truly hope nothing is wrong. Please let me know how it goes.

Carolyn