help

[lunawolf1313]

I haven't been diagnosed yet but from what I'm reading it sounds alot like what I'm going through..I'm hoping a doc on the site will give me more insight on Chiari 1 because my regular doc just ordered MRIs and CT and didn't bother informing of anything except a narrowing of the 4th ventricle...they were going to wait several months and test me again...nobody had seen or talked to me for over 2weeks after the test and my problems were getting worse! They finally decided to send me to a neurologist which is going to be another 2 weeks..didn't offer me any relief!  head pain and pressure is almost constant now and I haven't been able to work in over a month....does anyone know of anything to help with the pain or info or anything!?

[selmaS]

yeah it sounds like the DDD.....

The accident may have triggered the herniation and or symptoms....I feel many of us have had symptoms our entire life, but bcuz the symptoms cycle  they were considered a result of something else.

"selma"

[lunawolf1313]

Thanks! It is nice to know that there are other that can relate  :)

[DechenDolkar]

Hi Lunawolf,

I don't really have anything to add to Selma's replies but I just wanted to welcome you and let you know you found a great forum. It is so nice to find other people who can relate. I wish you the best and I hope you will get some answers at your appointment.

[lunawolf1313]

Was hit by a car in a crosswalk 10 years ago and when they did an MRI they said I had degnerative arthritis in my upperspine/neck area....is that the same?......can feel the grandma's hump starting (what my grandma used to call it)  oh btw I'm 47yrs old if that helps...yea I hate the head bobbing...I need to get a chair with a high back soon..boyfriend doesn't want me driving now either  lol

[selmaS]

The link to the list is in the Health Pages and the thread is here in the forum  as well.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

DDD= Degenerative disk disease...everyone gets this with age, chiarians tend to show signs sooner.

EDS= Ehlers-Danlos syndrome

PTC= Pusedotumor cerebri

For car rides that long I take a pillow to help hold my head from bobbing around...I was told I could not drive...I hope to be able to drive again soon.

[lunawolf1313]

: P Today is a WHOPPER of a day for me can hardly type. Thanks again

[lunawolf1313]

Thanks for the info... not to sound stupid but where do I find the list of true chiari specialists and I know what a CINE MRI and syringomyelia is but what do the other ie...DDD PTC EDS stand for? Right now my activity sits at slow and even slower...don't move around much,,,cause it seems to aggravate when I move too fast...tried to drive to relatives house and it was unbearable after 1 1/2 hours.

[selmaS]

HI and welcome to the Chiari forum.

We do not have a dr on the forum...I did post an answer to ur thread in the neuro forum. U did not mention chiari as a possibility, but ur symptoms do sound like it is a possibility.

Once u have a dx u will need more MRI's to rule out related conditions like tethered cord, syringomyelia, DDD, PTC...EDS....and others.

U also need a CINE MRI to see if u have a CSF blockage and overcrowding.

I did have surgery for this, but it is not a cure...it is possible to continue to have pain or increased issues after surgery.

Surgery is to slow progression and help avoid the formation of a syrinx.And to help with other issues like balance, breathing, ect...

I have not had pain meds that help...but changing ur activity level is helpful....we do have info in the Health Pages that u may find useful
http://www.medhelp.org/health_pages/list?cid=186

U also will want to locate a true chiari specialist.....we have a list here, please research all drs to find one u r comfortable with..the list is not a referral...just names of drs that members here have been to and liked.

"selma"