i just can't remember....

[n40066]

a chiarian that can't remember something...go figure!  lol!  but seriously though, i do seem to remember someone saying something to the affect that if you have a syrinx, the pain will be ABOVE it...am i correct in this recollection?  also, what exactly causes the pins and needles sensation.  i've had that from the base of my skull to just below my shoulder blades for about 4 months now non stop.  it doesn't come and go, it is always with me.  this past week, it is spreading to include my scalp, face and arms...even occasionally in my chest area.  i'm sure i probably asked this question before, but i can't find it in my old notes anywhere.  oh, and selma and rod?  you were right.  that drunk feeling has def. worked its way into vertigo.  started last night, late....i went from FEELING drunk to WALKING drunk!  ah, the joys of cm!

[n40066]

lol  that's too funny!  my plan is to not give it to anyone except the dr.  of course, the last time i did that, she didn't even read it.  she just stuck it in the back of my file.  but this guy is a specialist, right?  he should be different from the rest of them...by the way, selma...before you started having drop attacks, what were you feeling?  i need to know if there is a common denominator that i should look for.  like the nausea and vertigo.  i am driving out of need only, but do not want to take any chances.  if there are symptoms that chiarians go thru BEFORE the drop attacks started, that would be invaluable to me as well as other chiarians!

[selmaS]

HI Elizabeth......I also had my lists and it was on paper too....keep a copy for urself...the nurse took the paper and then asked questions that I had all the info on the paper....I didn't have a copy for myself and kept on saying it is on the paper, I can't remember....if I had a copy I could just read it off since the nurse obviously couldn't read....lol....

[n40066]

thanks!  i'll take all i can get!  :)

[rod44]

will say a prayer for you.

[n40066]

lol!  them my dr. is gonna be frowning cuz i have 2 pages of symptoms!  lol!  oh well, it will be what it will be...we'll know something in 72 hours!

[rod44]

doctors some times treat the illness but not the patent, they look at the clinical findings, the signs and symptoms and form an opinion but they don’t take into account when dealing with something so complex, with so many symptoms that include memory issues, anxiety and depression  that we may not be as articulate at expressing our symptoms. This makes getting a DX even more complicated.
If only we could put our symptoms on paper and work from there but this is frowned upon.
r

[n40066]

for now it has. thank goodness!  i've asked every one of my drs to order a full mri and/or a cine mri, but none of them see the "need" for it!  what can i tell you that you don't already know, right?  at least i have my app. on tue with a real dr.!  i really hope he will order it for me.  since he's a specialist, i'm sure he will.  crooked smile, crossing fingers, head bent in prayer.  : )

[rod44]

Could be time for a repeat full spinal MRI.
Has the eye problem resolved?

[n40066]

i just had the one with the needles that hurt.  haven't had a full spine mri in about 5 years.  only had the brain mri and a regular cervical xray recently.

[rod44]

They attach electrodes to your skin and “shock you” they then can tell if there is a brake down in the messages going to and from the brain
what about the whole spine MRI?

[n40066]

if that's the one where they stick a needle in you and then give you a little electric shock, i had it done either in 2002 or 2003 and i think everything was ok but i'm not 100 percent sure.  it couldn't have been too bad or i would have remembered the results and all i remember is the test.  it was very unpleasant!  i just look up the eeg and no i have never had one.

[rod44]

Ya I get the eye thing as well. From reading other posts here the symptoms  may improve but there is no cure per say.
Have you had any
EEG Help find out if a person has a physical problem (problems in the brain, spinal cord, or nervous system
or
EMG (nerve conduction) testing, Nerve conduction studies are used mainly for evaluation of numbness, tingling, burning and/or weakness of the arms and legs.
rod

[n40066]

sounds like your numbness is my pins and needles.  same thing.  i get occasional twitching in mostly my neck and left eye, but have had it at one time or another in all my extremities.    when it happens to me, it's like a sudden, sharp. fast flinch....something like that anyway.  with my eyes, its a real fast quiver (for lack of a better word)  is that what you are refering to?  as for the pin test, they have only done it around my biscep, forearm hands and feet.  don't feel a whole lot at all on my arms.  

so, if i do have the surgery, does that mean that the symptoms we're talking about here will not go away?

[rod44]

Hi Elizabith...Ok... I have numbness like when your hand falls asleep if you are in one position for a long time, or if you have hard skin, that kinda feeling, not the kind you describe with the dentist. I also have deep pain but when the doc dose the pin ***** test I don’t feel it the way I should. I have the same problem with reflexes. I feel heat but it is reduced, I get mussel twitching in my lower limbs witch is permanent and occasionally in the upper arms.

Nausea comes with the territory what with the dizziness and now with the vertigo as well. Have you had a full spine MRI? You may need one with the disk damage.  

The peripheral damage is permanent as far as I know.  
ray

[n40066]

hhhmmm....well, i can't really say i'm numb.  numb to me means a shot from the dentist.  and i don't really have that. not constant, anyway.  in the crash, i had mild compression fracture at T7,8,&9 and mild disk damage to L5-S1 and c-4&5 or 2&3 i can't remember and i don't have that little piece of paper that i don't remember where it is to remind me!  lol!  the last xray showed mild ddd and buldge in c-spine.  i know that every dr. that has tested my reflexes does it 4 or 5 times before giving up without any results....one said i had "slow" reflexes.
i did notice only yesterday when i emptied the dishwasher as soon as it finished so they were still hot, that while they were very hot in my right hand, they were not as hot in my left hand.  in fact, the left hand didn't bother me at all.  i do not have any loss of pain!  in fact, it seems to be the opposite there too!  the pain in my neck, shoulders and base of my skull is very intense.  
i also have to take 3 prilosec per day to keep the indigestion/heartburn at bay.  it used to take only 1.  even with 3 per day, i feel like i could toss my cookies at any given moment...
peripheral nerve damage.....sounds permanent.  is it?

[rod44]

sorry...I forgot....I also have finger joint wrist and elbow pain/numbness

[rod44]

Hi Elizabeth,
I forgot something, now I cant remember what I forgot, I wrote it down, but I cant find the piece of paper that I wrote it on, happens all the time lol!

The pins and needles are properly due to peripheral nerve damage or nerve root damage on the spinal cord associated with CM or a syrinx, as you broke your back a few years ago there is a possibility of post traumatic Syringomyelia. Have you been checked for this?
Syringomyelia causes a loss of the ability to feel extremes of hot or cold, especially in the hands. The disorder generally leads to a cape-like loss of pain and temperature sensation along the back and arms. It is my understanding that PTS causes pain above the level of the injury. It can cause  bowel and bladder problems.

I have loss of feeling across my shoulders and down the centre of my back, loss of feeling in the palms of my hands and the little finger of my R hand. There is a skin rash where I have the loss of sensation.


Sorry your having the vertigo, it’s a horrible sensation.
Ray