What does "significant" really mean?

[onedaysoon2010]

The neurologist I saw today confirmed what I was half told by my Urgent Care-giver ... that I have Chiari I Malformation that was seen on a CT Scan that I had following a concussion a couple of weeks ago. However, throwing in the word "significant" is throwing me off a little bit. While my neurologist seems like a pompous a**, I am using him currently to get the MRI taken so that I can get a copy and take it to someone else.

Does anyone know what "significant" means?

[linnielou232]

Sorry to hear your have to search for a NS, but there is one out there that will fit you.  I went to 3 before I found the one that I was comfortable enough with to have surgery.  Wish you the best in getting the MRI and getting more answer's that you deserve.
Linda :)

[onedaysoon2010]

Thanks billyz123. I've been reading in here a lot, just to get a glimpse of what I may be up with and it shows that it is definitely full of amazing individuals :) I am continuing on my hunt for a good NL and NS ... we will see what happens ...

[onedaysoon2010]

I have been researching a lot already (so much it feels like I am on total information overload at this point). There are 2 right now that I am looking at and I think that one of them is already out of my reach due to the type of insurance I have. That leaves one at Froedtert that I can see (and that's NS only) ... The neurologist that I currently see would be more than happy to over see my care, but seems to refuse to fill out any paperwork (not sure why if he feels competent to oversee everything ... everything except paperwork?) I will take a look a the list of Drs on here and see what I get from that starting point. And the one a Froedtert has a Chiari "care emphasis" whatever that means.*sigh* Just once, it'd be nice to go to a dr and have them say "you're all clear ... see you in a year."

[billyz123]

   I would think that "significant" would boil down to "worth looking into." Depending on your symptoms and scans, there's a lot to be ruled out before settling on the fact that CM is thee issue that needs to be dealt with. I know how you feel about getting your MRI's and movin on, I was the same way and it got me answers much quicker.

   It might help to know that, this will be frustrating at times... but follow your gut, ask questions, find answers, focus, stay calm, have faith, and remember that this forum of amazing people is here for you <3

[selmaS]

  Well not all NL 's or NS's r well educated on chiari, so this is a tricky thing for u to have to find the best Drs for urself....

but,once u educate urself on what u need to know u will be able to spot a good NS and NL.

[Rylanesmom]

Also please start looking for a true chiari NS .... Do your homework

[selmaS]

  U need a NL to do all the testing, could be u just have one that is not well informed on how chiari may affect u and is responding to the radiologists report....

  But u will want one for care if u should prove to be a surgical candidate for post op care.....

  Look at the list of Drs we have here on the forum, use it to research the Drs and keep in mind they may not all be true chiari specialist and it is not meant as a referral...only a means to help u get started with ur research

[onedaysoon2010]

Thanks selmaS. I recently had tests ran for low vitamins. I am deficient in Vitamin D (taking supplements) and the NL ordered a test for thiamin today. He is working on the order for a head and neck MRI (need pre-approval from my insurance carrier).

Once I get the MRI, I will be going somewhere else. They sent me a patient questionnaire to fill out and we only talked about 3-4 of the things that I had checked off :( Why did I take the time to even fill it out at all??

[onedaysoon2010]

That helps some ... Thanks Rylanesmom :) Apparently, although everyone said that the CT scan had made it to the neurologist, it hadn't. So all he really had to go by was the report. He ordered an MRI so he could see what was going on. He also told me that he wasn't sure why I was referred to him instead of a neurosurgeon. In addition, he apparently doesn't fill out paperwork of any kind (ie. short-term disability, workman's comp, etc.) so I am not really seeing any use for him except getting the MRI and having him read it for me. Once I get that, I will be going elsewhere.

[selmaS]

  Hi and welcome to the Chiari forum.

I believe they r referring to size as most Drs look to the length of herniation as  the criteria to classify chiari, I am not saying that is correct, and many with older info over react to the size, rather then look to what all is going on....

U will need more testing to see if ur herniation is causing a CSF obstruction and  over crowding...as well as related conditions like a syrinx, sleep apnea, disk issues, tethered cord, ehlers-danlos, and low levels of vitamins and minerals.

[Rylanesmom]

I would assume it means larger than 5mm since that is what it takes for most to consider itbhiati yet I cannot offer more than that.  I would ask and if the report does not say you can have it reread....I had to.  Mine was a MRI ...