lifstyle and diet

[cristinas]

with chiari 1
do you know if there a diet to follow - can you drink alcohol, tea or coffee?
what exercises should you avoid?

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DD is having to deal with the HA's from this condition.

Depending on her symptoms and how the condition is affecting her, she may not be a surgical candidate....and not everyone with chiari needs surgery...u will want tests to check to see if she has a CSF blockage and overcrowding...if she develops a syrinx or other symptoms then it would need to be readdressed...

May I ask, does she have other symptoms?

A bit of advice I will offer, find a true chiari specialist to ***** ur DD.

We do have a list of drs names that is for u to help u get started to research drs...u may have to travel as we do not have a list for every area....the list is not a referral....just a place to help u get started.-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Too many drs use the herniation length as a means to determine chiari as "borderline" it is not the mm of the herniation, but the shape and if it is causing an obstruction that is of concern,

Pain relief from these HA's is not an easy  task...not something in pill form,....relaxation is one way...avoiding certain activities...lifting...we do have a list of activities to avoid in the Health Pages....http://www.medhelp.org/health_pages/list?cid=186

I hope this is of some help to u and ur DD....we r happy to have u join us, but we r not happy with the reasons that bring u, especially when a child is involved.

  "selma"

[alex929]

Hi, my nine year old daughter was just diagnosed with low-lying cerebellar tonsils borderline for a chiari one malformation  (extend 6 mm) .
I am told the only thing to do is surgery to cure her headaches.  This is all new to me, can you tell me if you know of any medicines or pain relief available.
thank you

[selmaS]

Hi....well, u r right to get more then one opinion...and do be sure the dr is a chiari specialist, not just a NS that does chiari surgery...there is a difference.

May I ask what ur symptoms are?...do u know if u have blocked CSF...overcrowding? I imagine with a syrinx u do have some blockage......but, it could be congenital too.

Please read thru the Health Pages as the page of activities to avoid is helpful as is the list of drs...and the  anti inflammatory foods.

Well I hope u find the info u r seeking as well as the support we have to offer : )

"selma"

[cristinas]

Selma - Thank you sooo much for your kind reply.
Yes - just have been dx with chiari 1 - (15mm) and a syrinx
the ns recommends to operate - now I am going for a 2. opinion .
now I am trying to situate and inform my self -
to find out - how to handle this situation best - if there are things I can do
to stop it or that it doesn't get worth
well, I suppose - everything - all of us in this situation are doing.
Cristina

[1_2_3_4suloo]

Hi All,

Here is an article written by a ns regarding cm.  He writes about diet and cf , and, about something he calls "Grain Brain".  I found it highly interesting, as he has an opinion that differes from most md's and ns's.  Hope this is helpful.

[1_2_3_4suloo]

Ooopps, forgot to post the article, so here it is now:  https://www.jackkruse.com/do-you-have-a-grain-brain/

[selmaS]

Hi and welcome to the Chiari forum.

There is no diet per say, but we do have a list of anti inflammatory foods that may be helpful to someone.

The only diet would be if u also  suffer from GERD and or IBS......

We do have a list of activities to avoid...as a bump , fall or major jostling could trigger symptoms.
Below is a link to several of the Health Pages with helpful info.
http://www.medhelp.org/posts/Chiari-Malformation/HEALTH-PAGE-LINKS-/show/1146333

May I ask were u recently dx with chiari?

"selma"

[JonHelguson]

Avoid Sugar and Carbohydrates. I have Chiari I with a 12mm "hearniation" and I do/have experience(d) a laundry list of symptoms. Face numbness to difficulty breathing. Paleo/low carb diet, with resistance training keeps me 90% symptom free (face numbness and other minor symptoms will still be present). Anything that reduces stress and keeps systematic inflammation down will help. I cannot over stress how important overall health and fitness is to a condition such as this. Most importantly, be honest with yourself, are you taking care of yourself outside of targeting individual symptoms.