Venting

[DANI0103]

I have CM 1 and i also have a syrinx. along with the syrinx comes the "cape effect". which is a pain that spans the whole lenghth of my shoulders, basically arm to arm and my bad side ( the right side) is so bad today it hurts just to place my arms on the desk at work. im in so much pain today, i can barley puul it together at work. This pain is the worst pain i have ever experienced. I havent had any surgury and my DR seems to think that I dont need it. Does anyone have anysuggestions as to what i can do to reduce this pain. I'm not really a pill taker so I dont take even over the counter drugs.
My neck is swollen and im wondering if anyone else gets a swollen neck because of their chairi. thanks for reading and i look foward to your posts!
-dani

[selmaS]

  That is just not right.....sorry, I do not understand how Drs can be like that, I know they have a right to private time, but them have someone  cover....

Make sure u go on Monday and if u do feel worse get to the ER asap.....

  I hope u feel better over the weekend.

[Rahe28]

I did call the NS, but when they told me they couldnt give me any med advice before being seen, I call my pcp. I never did hear back from them. Still feel weird, my vision never really clearred up much. Thanks for everything selma. The Nurse prac. for my pcp said that she wants to see me monday, and to go to er if anything worsens, but she said the pcp never did call back.

[selmaS]

  I thought u called the NS and were waiting on a call back?

I guess I can understand they  do not want to give u advice without seeing u,but to agree to testing or help with an injury...I think is ok.....

[Rahe28]

I would love to ask the NL or the NS, but they wont give me any info until after I have had my first appointment. just like I would have liked to talk to one of them about the incident today, in which I still dont feel well from. A little better since I have taken someof my meds...but not much, as they rarely provide much relief normally, more less after a hit to the head. I am telling you it was weird. I hit my head before, but never like this...this hot was so hard that everything went black and there was imense pain...along with alot of really loud ringing in the ears, but then very muffled. After I sat for  a minute I decided I was ok, and preceeded to go get my boys from school and on the way there is when I noticed to the mouth thing happening. That part really freaked me out. It was as though my mouth was paralyzed and no matter how hard I tried I could not open my mouth to speak, nor move it at all. THat lasted about 20minutes. I never did get in touch with the dr. and I called their after hours answering service 4 times. I still have a terrible headache, and everytime I move I get really dizzy. So, I am laying on my couch with my 3 kiddos, having movie night. I have such good kids...they are trying to take care of mommy by fixing their own drinks and mine and getting whatever I may need. They are so sweet. I guess if this doiesn;t get any better by tomorrow, I will head to the er. Even though I hate going it could be best. What do you all think>?

[selmaS]

  All Drs r different, some want the testing done on machines they r familiar with as well as the tesla strength....

U should ask ur Dr what he wants, mine sent a RX of things for me to have done at home, and then I had a few more things done there....

  When in doubt, ask ur Dr...lol...

[Rahe28]

my last mri was over 9 months ago, should I ask pcp to go ahead and schedule all of these mri's so I have them when I go to the specialist? I was under impression that he would want his own done. IT would be very easy for me to schedule them and could have the results before the appointment on the first of march.

[ChiariWolf]

I don't really if it's something to be concerned about. It bothers me as I know this isn't normal. But I've yet to have the pulse going on when in front of a doctor. My feeling is that the pulse is csf but ?????

Was just curious hoping someone else has been told what this is

[DANI0103]

i dont think it had a pulse. im not sure how big it was, however it was big enough for my family members to notice it i dont think i noticed any pulse? would that be a bad thing if it had a pulse?

[DANI0103]

i have noticed that if I put my chin up my neck does get better. its been like this forever. thanks for the advice.

[ChiariWolf]

Swollen neck - actually my wife has noticed this more than I have. She has noted that when I'm having a particularly difficult time my neck is normally swollen. She said I get a large marshmallow back there on one side of the back of my neck and skull. This normally gets a pulse when it pops up there.
Does yours have a pulse to it?

CW

[hookgan09]

does the burning in your shoulders seem to happen to come on when you are sitting at the desk while looking down alot? Mine happens mostly than, or when i am looking down  too much and my back isn't supported.
Dishes, folding laundry or other things like that. I have had the same thing going on for a year or so. I found that if i sit back in a chair and try to keep my chin up, it does help.

[selmaS]

  If u have new or changing symptoms and u have not had a MRI in the last 6 months, yes, u may want one as changes could take place...sometimes slowly over time, and sometimes very rapidly....

Any change  should be checked with a MRI and most chiari specialists want a MRI no older then 6 months.

  "selma"

[DANI0103]

we aren't sure how it happned the doctors found it on accident while we were looking for something else. I do feel that it may be getting worse only beacuse of the way i used to feel compared to now.. i feel a pressure getting worse also i never used to feel before. it has been a couple years since my last MRI maybe i should get a new one you recken?

[selmaS]

  I know the thought of surgery is scary....but, not having it can be as risky...we have to find out just how is this affecting us, and is it  progressing.....

The size of herniation is not the issue with ur Chiari, but it is the obstruction that is concerning....do u know is ur syrinx from the CSF obstruction or an injury?

[DANI0103]

i dont remember the measurements of the chiari herniation or the syrinx. I'm too scared to have surgury with all that could go wrong and theother medical conditions i have would probabally be best to just deal with my pain then go into surgery.

[selmaS]

  what about ur chiari herniation?.....most times surgery for chiari is done to prevent a syrinx from forming, and u already have one...this is y I am asking......I know, if a syrinx is small, they will not do surgery to  place a shunt...so I understand that aspect, but u also have chiari, having that surgery many times will help the syrinx shrink with out the shunt.

A second opinion is a good idea, but do be sure it is  a true chiari specialist.

[DANI0103]

thanks selma for getting back to me my dr is a specialist and he claims that i have a small syrinx i dont know the measure... my only other sympotms would be headache and excessive tiredness. I dont think i over due it mainly because i dont lift anything like kids or even milk cartons for that matter. but your right maybe i should get another opinion.
thank you so very much
-dani

[selmaS]

  Hi...I am so sorry u r going thru all that and then u r not getting support and help from ur Drs....

May I ask, was this a chiari specialist?....Most times having chiari and a syrinx is an indication for surgery....

What other symptoms have u had...they do tend to come and go and switch up a bit....so, sometimes it is diff to know what is a symptom from the condition and what is from everyday stress, sickness or just plain over doing it.

  Ur best bet, get another opinion as to what ur chiari and syrinx is doing to ur over all health, and what is the best course of action.

See our Health Pages for our list of Drs names to use to research drs.

    "selma"