So I know this is a very generic question, but any suggestions I might be missing would be really helpful. A little history first. I had a brain MRI w/ and w/o contrast in 2007. After having my 3rd child via C section, I had a constant headache and my OB sent me for these MRI's. The findings were this: MRI-"There is at least moderate focal stenosis involving the distal left transverse sinus, probably from chronic thrombosis versus a prominent arachnoid granulation." It goes on to say the Right side is patent. The suggestion per the radiologist is I get a "conventional angiogram" which was never ordered for me. The MRI w/ contrast impression- "A few areas of increase of signal intensity in the left transverse sinus, concerning for partial thrombosis of uncertain chronicity and/or stenosis or slow flow. MRV is recommended for further evaluation." Nothing further was ever ordered. I was treated with temporary pain meds.
Jump to March 2011 and a new MRI impression is this: "Cerebellar tonsils are positioned about 3 mm below the level of the foramen magnum, which is at the lower limits of normal/borderline for Chiari I Malformation." I was sent to a NL that told me I was pre-menopausal (at 37) and given migraine meds (which I'd already been trying and losing at for years). Told I'd be seen every year, that's it.
Over the last year the headaches increased in severity but not how often they occur, the pain in Right shoulderblade is constant and sometimes unbearable, memory probs, nerve issues on my Right side, dizziness, floaty feeling, Right ear stuffiness and the popping/grinding in my neck is disgusting. There are other symptoms but you all get the point. My PCM (who I must say is awesome) orders another round of MRI's, this time of brain and C-spine. Findings are: "No significant change since MRI of 3/11, bulges at C4-5 & C5-6 levels w/o significant stenosis" and then something for my thyroid which I'm seeing a general surgeon for.
I went to a NS in Feb and had a C spine xray done (and stupidly I left w/o asking for a copy) but was told I had disk degeneration, the bulges and my C spine is shaped wrong, but there was no evidence of Chiari. I was offered a spine test, but I didn't particularly care for the guy so I am choosing to see someone else. I have my records, my films from all 3 sets of MRI's, a list of symptoms, a list of all meds that have been tried. So I guess what I'm hoping for is 1st) can someone pls explain to me what they think the "findings" mean...it's too much medical jargon and not one of the dr's I've seen has explained it to me and 2nd) what else can I take or present on Tuesday when I see my new NS?
*It's taken me a while to get the courage to put all this out there...not sure why. But, whew, there it is.
When I went for my 2nd opinion I brought my MRI's, list of ALL symptoms...also I had to go back and get all the MRI's written report...I too left without mine!!!
I would suggest writing a list of questions for this NS..how many per yr does he do...what does he think the benefit from surgery would be for you? Will he order PT after surgery???
Can you bring someone with you...a 2nd pair of ears is always good.
Just that something caught my eye in your post - about the neck popping/grinding. I have that too. Is that chiari related? Top of spine between shoulders and base of skull? And I agree, it is disgusting. ;)
I know it can be hard to share your story or feelings, but you have no reason to be nervous or scared here. There is no such thing as a dumb question and your feelings always matter here. Regarding your question, you should check out the resources page…there is a link to “preparing for your appointment”. They even have some sample questions you should ask and ones that you should be prepared to answer. Please let us know how your appointment goes.
Thank you Lori, Sue and Crystal. I appreciate the feedback! My mom will be able to go with me, thankfully. I'm going to work on my lists (symptoms & questions) this weekend. And thanks for directing me to the link, Crystal. I'll give that a read too.
Sue, my popping is mostly at the base of my skull into my neck. It pops just from turning my head sometimes. I once joked it was so loud and so surprising I was glad my head hadn't fallen off. As I'm learning, anything can be Chiari related but since this is one of my biggest symptoms, it's going in my top 5 list.
I'm having a pretty shaky day honestly. And I have a sleep study that I am so not looking forward to. I feel off and it's just not something I want to do tonight. I know it's one of those tests that will help narrow down issues I'm having, so I'm trying to psych myself up for it.
Please know I am thinking about you. You seem like an amazing person. I agree with Lori & Crystal. They are amazing. If you have one , you might want to take a small tape recorder to your NS appointment. The hardest part about a sleep study is getting all the goo out of your hair the next day. Crystal made an excellant point....You don't have any reason to be nervous or scared here. Please try to use that statment as you go through your sleep study and your NS appointment. View them as a way to get the answers you need to feel better. That is the goal. We will be here to help you always. We truly understand. You have found a new family of sorts.
I have been and will continue to pray for you & your family,
Thank you so much Tracy. I think part of me not telling my full story is my continued denial. Unfortunately, my dizziness and shakiness turned into actual getting sick, so I've rescheduled the sleep study for later this month. I'd probably fall out of the bed at this point...using my humor to make me feel better ;)
The continued thoughts & prayers are really appreciated and always reciprocated!