Restrictions with Chiari

[wembly13]

First off...I would like to say "Thank you" for this wonderful forum!  I have been on here reading all of your wonderful thoughts, support and advice to each other and have finally joined.  I was dx'd in July 2013 with a 13mm heriation and many symptoms.  I have seen many neurologists in the past as I have suffered from severe stroke like migraines for 17 years and have had every test under the sun.  In February I was finally given a much awaited MRI due to complains of years of migraines and headaches (coincidentally I was in a major car accident Jan. 31, 2013).  The results were...chiari malformation Type I.  I am getting quite frustrated at the lack of knowledge and understanding.  It seems I am getting more answers on my own than in the doctor's office :(  One question that alludes me is...restrictions is terms of work?? I am a Personal Support Worker in Canada (which is equivalent to a nurses aid I think in the states).  This is a very physical job!!  Lots of pulling, pushing, lifting, rolling...you name it!!  I love my job soooo much <3  But it hurts more and more...everyday!!!  My hope is, one of my fellow Chiarians will have some advice for me...please and thank you in advance.  
Your neighbour to the north

[selmaS]

  We do have an Ehlers-danlos group here on MedHelp that u can get info on it as well as a forum where many others have POTS and related issues but not Chiari....so that may be helpful to do research there.

http://www.medhelp.org/forums/show/417?camp=msc  ; EDS group


http://www.medhelp.org/forums/show/266?camp=msc  POTS/Dysautonomia

[wembly13]

Did not know this...thank you! My next Neuro appt is Oct. 10th if you have anymore advice to offer I would love to hear it! Still new to me and feel like I haven't been told much. Stumbling in the dark :-( Thank you for everything, this community is a God send. I only wish to support others the same way!
:-)

[selmaS]

  Well many times Drs only check TSH and with us it is an auto immune thyroid issue so they also need to look at free T3 and free T4 and TPO anti bodies in addition to TSH...so make sure they were checked.

No worries...Hang in there : )

[wembly13]

Yes I agree with you! I do not present a syrinx and my thyroid, vitamin and mineral levels seem to be fine according to my neurologist. I will research ICP, POTS and have looked into sleep apnea and tethered cord a little already.  The migraines, and endless list of other symptoms just keeps pecking at me.  I have been to every doctor for these headaches and every medication but I will not give up!!! I will explore all opinions but I know after 17 years I am getting tired of this pain...ugh!! Onward and upward they say :-)
Thanks again

[selmaS]

  I so understand and no worries, this forum is here so u can vent and vent to others that do understand exactly how u feel.

Make sure u get testing to see if u have a CSF obstruction as that is more a reason for surgery then to just have Chiari with symptoms....and make sure ALL related conditions are ruled out as so many can cause the same symptoms as Chiari...

Syringomyelia, tethered cord, ICP, POTS, sleep apnea, ehlers-danlos,even thyroid and vitamin and mineral levels can cause some of the symptoms....

And know that surgery is not a cure, it is just a means to restore CSF flow and slow progression.

Take this slow and take time to understand ALL that is going on b4 u consider surgery and finding the right Dr is key.

[wembly13]

Thank you so much for advice. I work midnights to top it off and notice that toward the early morning hours my vision, neck and back symptoms seem to flare the most.  I am trying my best to research and understand my new found condition.  I was devastated to learn I might have to give up a career I love soooo much.  My residents are like my family :-(  It's hard when your heart is in the right place but physically your body just won't let anymore!  Sorry to complain!! Now battling with surgery or no surgery...tis the question?? Thanks

[selmaS]

  Hi and welcome to the Chiari forum.

We do have a list of activities to avoid with Chiari and Syringomyelia in the Health Pages....Lifting , pushing, pulling is not the best thing for u to be doing....http://www.medhelp.org/health_pages/list?cid=186

U will also locate  List of Drs with a link for lists in Canada, UK..etc....the lists are here for ur use to research the Drs they are not meant as a referral nor an endorsement.

Symptoms can flare with activity, so what u do, and how often can affect how bad u feel.....