What do I do?

[Brandiirene10]

I am 21 and was just diagnosed with chiari type 1 a couple weeks ago. The first time my neurologist actually talked to me about my diagnosis was today...until then I was just looking online or asking her nurse. I have had a contrast MRI of the cervical spine that shows no syrinx..but it was only of the cervical spine...? My symptoms are headaches, terrible headaches. I am a CNA at a nursing home and it is impossible for me to go to work and lift people. It makes my head so much worse so I have been having to miss a lot of work. My head was hurting so bad yesterday I thought I was dying, so after calling my doctor a few times they asked me to come in today. She gave me a prescription for fioricet with codeine and topamax and referred me to a neurosurgeon. She said they usually won't do surgery unless I start having bigger symptoms like not beig able to feel my feet or write my name...and that neurosurgeon wouldn't even call me to schedule an appointment for another 10days to 2weeks. I understand the meds she gave me will help me until then so yesterday won't repeat itself but I just wonder why they are keeping me waiting?? My symptoms are interfering with my life and I just want to have surgery and get it over with! Any advice?

[desertstorm2009]

First, about the time you are missing from work, consider filing an Intermittant FMLA at your work. This will protect your job from the abscesses. It is easy to do and federal law. It will allow you miss days when you don't feel well or for Dr appointments.

Next, to be blunt, your Dr sounds like a jack *ss. If you were to listen to him and wait until your symptoms actually got that bad you could have permanent damage! My advice is for that Dr is "NEXT"!

Go on line and find your local support group for Chiari, this will help you alot. Lastly, the sooner you do get a PROFESSIONAL opinion from a NS experienced with Chiari, the better your chances will be for recovery!

Send me a private message if you need any help!
Good luck dear and stand up for your self! Sadly, there are alot of clowns in the medical field that shouldn't be called Dr's. Lisa :-)

[selmaS]

  Hi...first try to relax..stress can cause ur symptoms to flare as can changes in temp.....

What changes have u had in the last week?

Getting into a specialist can take a few weeks to hear from b4 an appointment is set....We learn patience with Chiari as we do a lot of waiting.

Unless u are having breathing issues or something u feel is life threatening go to an ER, but know they only treat the surface symptoms, not what is causing it so if u can get thru on ur own....I would not bother....

Again, try not to worry and stress as u can make urself feel worse.

[Brandiirene10]

Thank you so much!
I have another worry though.. My symptoms have gotten progressively worse in a matter of just a week. It has happened so quickly that I am wondering if I should be worried about what's happening and get to a specialist ASAP?

[selmaS]

  Hi and welcome to the Chiari forum.

What we all with Chiari have to know is, ne and ALL pains and symptoms we have may be related to our DX, but it is possible to have more then one thing going on, so look to ur family's medical history to get clues.

So many of us do have GERD and acid reflux, sinus issues, thyroid issues, auto immune and connective tissue disorders....so it is wide open as to what we may experience...and since we all are affected but a grouping of diff conditions we all will have a diff experience too.

Next u need to know not ALL Drs have a grasp on how chiari affects us...so they may not be hearing us as to how we feel and assume it is something else causing the symptoms.

U need a true Chiari specialist and more testing...since u had the brain and cervical spine MRI's u will need a thoracic and lumbar spine MRI as well as a CINE MRI to look for a CSF obstruction, and over crowding.

We need to rule out syringomyelia (syrinx) in ALL areas of the spine, tethered cord, ICP, POTS, sleep apnea,ehlers-danlos.

It can be a bit over whelming, but know u r not alone, we will try to help u as best we can : )

[Brandiirene10]

I am also having chest pain..which I didn't even know was a symptom until yesterday but I have definitely been having it. I had one spell of tingling/numbness in my hands and feet that lasted for about 5 minutes then went away but that was a couple months ago..before I was even diagnosed.

[wonderchiari]

Hi welcome here  But sorry for the reason that brought you here .


Selma perhaps would be answering you in a much better way  .


Anyway in the mean time I wish to inform that as far I have read  chiari patients in most cases are not treated with surgery immediately.,

chiari surgery is not a permanent cure for chiari ... it is considered  means for slowing the progression of symptoms .,,,and to stop further nerve damage if any   or prevent  permanent nerve damage

So please dont rush up and undertake the surgery thinking it is one full  stop for the problem . .

I think so a  chiari nsg who knows this condition well  is very much needed   for this condition

apart from regular MRIs i think a CINE MRI is done for assessing if there is any blockage of csf ., .,

and there are some related conditions of chiari which need to be tested  since they might affect the results of the surgery  .

Please wait hopefully selma would answer it soon .