recently diagnosed, questions

[teeners]

i am 22 years old and have been dealing with constant symptoms for 2 years and tossed around the medical community seeing specialist after specialist. my mri showed a 7mm herniation- type 1 chiari. i was previously diagnosed as fibromyalgia, lyme disease- because i had so many symptoms in different body symptoms. just recently, i had a bad cold and coughing and also a test done where a tube was stuck down my nose and throat to test stomach ph (one of the many bizarre tests i have had done recently). im not sure if it was the coughing and gagging/straining getting the tube stuck down my throat or what but now, for the past week i have had the worst headache of my life- an intense pressure headache at the top/upper back of my head. i have pains in my arms and legs and it feels weak too. does chiari headaches caused by coughing generally occur right when you cough or a few days after? and does it go away or are the symptoms worsened for good? dont really know what to expect or what therapies will help this but im in a lot of pain and waiting to see a chiari specialist

[selmaS]

  Hi...do not carry a back pack..that is aggravating ur issues...see the list of activities to avoid in our Health Pages it may not say carrying a back pack but it will say no lifting...and I am sure ur back pack is heavy...ask and see if u can get one with wheels. Or someone to carry ur books for u, or go to ur locker more so u do not have to carry so much.

http://www.medhelp.org/health_pages/list?cid=186

The pain is also from all the weight of ur back pack.... as well as chiari combined....

A CINE MRI is what u need to determine if u have a CSF obstruction....

[teeners]

How do i know if i have csf flow blockage or sryinx or something extra tho? lol do these have pretty obvious symptoms? im concerned about a possible syrinx because of the shoulder, arm, back and leg pain.... but can chiari cause that too?

[RheaAnn]

That is a while to wait, but unfortunately, NS offices are usually always so busy. I would ask for the sleep study test now as Selma suggested because sleep apnea is not something you should wait with. Plus, it will be more information to bring to the NS in January! ;)

I know you must be nervous and scared- I was too. I was diagnosed at 14 and searched for 6 years to find a doctor who would consider sending me to a NS! So unless you have major CSF obstruction, a syrinx or something extra, it usually isn't an "emergency" type of situation. But I completely understand how the pain and waiting is! That is the worst part by far! Just know that this situation is not like an emergency like an appendix rupturing although the pain feels like it, ok!

[teeners]

I just got a call that my appointment with neurosurgery for a consult is not until January 7. Is it bad to wait too long to have these tests done or is the progression of chiaris and related conditions usually pretty slow and it is normal to have to wait so long? ive just been having such terrible head pressure and neck sensitivity (feel like gagging, can barely carry my backpack to school without pain down my arms and more head pressure)

[selmaS]

  Not everyone with Chiari will have a syrinx.....I did not have one, but if u have a CSF obstruction and it is not treated it can develop into one.

Some syrinx's are acquired from an injury as a trauma to the neck area...
Coughing  can trigger symptoms to worsen if they are already there....

It takes the CSF being obstructed to create a syrinx....and even then not all will have one, some syrinx's develop very slowly over time and some develop rapidly....

I think the symptoms u have and what u have read freaked u out....try to relax as stress can also make ur symptoms feel worse.

[teeners]

So the syrinx develops with the chiari? This is something I am having a hard time understanding bc it looked like some sites said it could happen spontaneously if you cough or something. Does something make it more or less common for someone to develop syringomyelia?

[selmaS]

  The waking up gasping for air at night could be sleep apnea so do ask about a sleep study....this is not uncommon for chiarians either...but something u should not back burner.

No ur coughing would not cause u to have a syrinx....u may have one that was not seen, but if u had a cervical spine MRI it means u do not have one in that area...do get a thoracic and lumbar spine MRI too and rule them out there as well....

The gagging is just typical Chiari I am afraid.

[teeners]

Thank you for the information Selma :)

[teeners]

I have had 2 MRIs in the past 2 years of the brain and 1 cervical spine MRI. the 2 brain MRIs showed 7 mm herniation of the tonsils. nothing was noted about the syrinx. My most recent of the MRIs mentioned was this summer in July, I have had off and on head pressure and neuro symptoms (gagging sensations, pains, waking up gasping for air at night, etc). My question is, now my symptoms of headache have been constant and severe after a coughing from a cold and having a medical test done that led me to gag and strain (tube stuck in my throat). i also have pain radiating in my arms and legs and weird sensations. Is syringomyelia something that would have appeared on my brain MRI in July if i have it now, or could the coughing and straining have caused it suddenly and now i have it? Or can chiari cause the similar symptoms (or worst headache of your life and arm and leg pain and weakness)?

[selmaS]

  Hi and welcome to the Chiari forum.

Chiari can cause swallowing issues, so the gagging from the tube inserted is not surprising and  after a coughing attack it can cause ur symptoms to flare....rest up and the symptoms should calm down...but symptoms do cycle and flare and this is y it is so difficult to dx...we all need to be tested for other conditions with similar symptoms like Lymes, Lupus, MS....

Watching what u do, limit ur activities as many can trigger the HA's...we have a list of activities to avoid with Chiari in the Health Pages....http://www.medhelp.org/health_pages/list?cid=186