New Diagnosed

General
1

Hi All!

I am Sierra. I was diagnosed with Chiari (9mm) at the beginning of November. I am scheduled to see a NS on Dec 10. I know that he has some experience with Chiari, and from what I read, that is very important. There are not many in the Phoenix (AZ) area that I have found that do. I've done a lot of research on Chiari, so I'm starting to understand it.

My primary symptoms are headaches/ neck pain, blurry vision (this has gotten really bad in the past couple of months. I went from being able to drive at night just fine to not being able to read street signs during the day, or subtitles on the TV), brain fog, and fatigue. There are other symptoms too, but it would take forever to list them. I went to my PCP 2 years ago because I couldn't make it through the day without having to take a nap. As a full time employee and a full time college student, this was a really big issue for me. She diagnosed me with hypothyroidism and sent me on my way. I have been on medication for that since. The headaches and fatigue never went away though. Finally, after going to the PCP every 6 weeks for 2 years, my symptoms started to get really bad. My blood work started to come back strange. My hormones were all off, I developed anemia, and all sorts of other stuff. So she sent me for an MRI to check for a pituitary tumor. Instead, we found Chiari.

I have a few questions for all of you:

- Is there a chance that my hormone problems could be connected to the Chiari? When my Chiari symptoms started to get really bad, so did my hormone problems.

- Also, what should I expect during my NS visit? He has already reviewed my case/ MRI. I know that I will have to go over my symptoms with him (which I have been writing down because I will forget most of them, ha). But what else should I expect?

- I haven't had a Cine MRI. Will I need one of these in addition to the other MRI?

-And last one (for now)! Does anyone else get sticky/wet ears? I feel like my ears are always wet or moist inside, kinda of like when you get out of the shower. Is that a Chiari thing? At first I thought it was because I wear headphones at work, but I stopped, and they still get like that.

Thank you in advance! I've really enjoyed (and feel quite validated) reading your posts. It's great to know that we are not alone. :)

2

I am going to Barrow. I am seeing Dr. Nakaji there. Barrow is one of the top places to go in PHX for NS. The fluid is usually clear with a tint of yellow, but it's not dripping, just more like moist. I will definitely mention it when I go in.

3

Sierra, I think there is a connection between Chiari and hormone problems. Hashimotos is common, and if a person has high inter cranial pressure the pituitary gland can be affected. During my NS initial consult I had a cine MRI of brain and lumbar MRI (to check for tethered cord), a BAER test, neurological exam/ reflex testing, hypermobility testing (which every Chiarian should be aware of- hypermobility/Elhers Danlos Syndrome can cause joint laxity in the neck joints and cranio cervical joint- this has to be fixed too or it will continue to cause chiari like symptoms!!!) run down of symptoms and bloodwork. Good luck in your appt and please let us know how it goes!

Jenn

4

Wow! That is a lot of testing! I'm glad (ironically) that CM can cause the hormone issues. I was tested for Hashi's, but I came back negative. I might need to be retested for it. The hormones have been the worst part. Between not being able to exercise much (because of the headaches) and trying to find a diet that works well with the hormones/ thyroid, I've gained a lot of weight over the last two years. I'm so anxious to get into the NS and see what he has to say. I'm ready to have a break from the headaches, as is my husband, I'm sure. Newlywed life with CM isn't exactly as I planned. Luckily he is pretty supportive. Thank all so much for the advice! This is such a complicated disease from what I am starting to understand. I'll take any advice/ forewarning/ information I can get! I feel blessed to have stumbled upon this group.

5

I agree with Mandy, don’t let this get overlooked.

6

Hi, my 18 yr old son had surgery this past September with Dr. Zabramski at Barrows and we were very happy with him and the staff at Barrows hospital were fantastic with his recovery. You are in good hands and they will take good care of you.
Barrows is known world wide for their excellence. I will say a prayer for you that you will someday feel as good as my son does now.

Charlene

7

I really appreciate all of the advise! You all seem so knowledgable. I will definitely bring up the crowing and such to the neurosurgeon. And Charlene, that’s great to hear about your son. It definitely makes me feel like I chose the right place. I’ll be praying for him too!

8

Mandy,

I was looking at the MRIs that you posted. Neither of those are mine. I did compare my MRI with the information from Dr. Henderson in the video though. My angle is pretty wide and my line from the clivus to the odontoid bones do not line up (I don't mind posting a picture of it, if you would like to see and maybe give some guidance). How should I approach this when I meet with my NS next week? I don't want to go in there and overwhelm him with my questions/comments/concerns (which is a really long list at this point), but I think that this is extremely important. And one question on this topic (clivo-axial angels): If I do have some instability there, does that mean that I have Ehlers- Danlos? Or is it just another complication of Chiari.

9

Mandy, that is a lot of good information and stats to write down and go over with the doctor. I had a genetic test when we were looking for a pituitary tumor (which is when we found Chiari instead), and it did say that I have a connective tissue disorder, but my PCP never did any further testing to see which CTD it is. I will definitely be bringing all of this up to the surgeon when I see him on Tuesday. I'm nervous; there is so much information to go over with him. I'm looking at my MRI again now, and I would assume there is definitely instability there based on the video of Dr. Henderson. I guess I ask my NS and see what he says.

Thank you again for all your help understanding this mess!