newby needs help

[harboy]

Hi, adult daughter was dx two wks ago. Learned much from this blog. we do not have health insurance and cannot afford health care. We understand each person responds individually to everything and everything is subject to change.  daughters symptoms are severe to her. What are some things you have learned to help with the symptoms. Thank you Chiari community

[selmaS]

  Once we have a DX of Chiari there are more tests to have done, these are done to rule out related and non related conditions to see if the symptoms are ALL from the Chiari....most Drs will say they are not....but it is also important to know if they are related so they will have a better idea as how to approach surgery if she is a surgical candidate....

Syringomyelia is one related condition we need to rule out, and we need to check the entire spine not just the cervical spine for a syrinx.....

By doing the thoracic and lumbar spine MRI's we also can rule out Disk issues, and tethered cord....

Other testing would be for  issues/conditions like  sleep apnea, vitamin levels,POTS, ICP, Ehlers-Danlos......

I know it is a lot and is overwhelming....but you do need to know what else could be going on as it can cause set backs or issues during surgery or post op....and so many think surgery failed when in fact something else could be going on.

Gather the families medical history as well....always request copies of ALL testing that is done along with reports...MRI's on disk etc...this will make getting 2nd and 3rd opinions faster and easier.....

[harboy]

Hi SelmaS, my name is cindy. Thank you for responding. I am so scared for my daughter and don't have a clue with anything I can do to help her. Thank you for being here.  I am still in a fog with her dx and decline in health so rapidly. I am trying to learn as much as possible.  I cant even put together the words for the questions I have.  So...if I am this confused I cannot imagine how my daughter feels or the Chiari Community.  Please keep posting and thank you again,
Cindy

[selmaS]

  Hi....there is a list of activities to avoid with both Chiari and Syringomyelia....here is the link -
http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

It is also helpful to keep a journal of what activities are done, and how one feels....if happy, stressed etc...this may help to see what can be done and what needs to be avoided for her.

  We sometimes need to rest up in order to have a full day out and about and then we need a few days to recoup.....

Getting plenty of rest....along with some exercise...walking ....no straining, lifting, pulling or pushing...as those can cause a flare up....

For me a warm soak in the tube to help relax listening to music...helped me when I was not feeling well....

She has to listen to her body as to what she can and can not do....