I'm not getting it from anywhere else, and I guess I don't really need advice, but I feel a lack of support from people around me...I feel like I complain and people either get annoyed or just tell me what they think I want to hear.
I have a 14mm chiari and finally found a neurosurgeon that I feel like I can trust. He said he doesn't believe I need surgery immediately, and I may never need surgery, and although he would recommend I have it done, there's only an 80% chance I'll see a difference in my symptoms. I have good days and bad days. My good days I don't even want to think about chiari...my bad days, like today, it's ALL I can think about. I'm about 50% good/bad.
I get migraines where it's not my head that bothers me so much - but terrible jaw, face, neck and back pain along with nausea and increased sense of smell - metallic taste in my mouth/lump in my throat. I was in a car accident last January and injured my left shoulder and now have tingling all throughout my left arm/shoulder/back - but again - no guarantee surgery will help correct any of it.
I go to physical therapy 3 times a week for my shoulder - i've been doing that for 2 weeks now.
When I feel good, i feel great - when i feel bad, i feel awful. I go for a CSF MRI next Friday, maybe that'll show something.
Again...I don't know why I'm posting this...I guess I just need to talk to others that know what I'm going through. I tried to do a search on here for migraines and chiari but my current migraine makes me concentration level very low, so I just decided to post instead. Thoughts and prayers welcome!
Sorry you are having such a struggle right now. I completely understand the whole good/bad days thing. Hopefully you can find some treatment/therapy options that will help with some of your symptoms. Having chiari will always be a practice in symptom management.
Do you have a neurologist in addition to having a neurosurgeon? Neurosurgeons are best at surgical procedures; whereas, a neurologist will have more insight to other treatments available. There are all sorts of treatments, therapies and practices in addition to medications. When I received my diagnosis there was a referral to a neurosurgeon but he offered no post-op treatment plan. So I went to my primary care doc and asked for a referral to a neurologist since I was dealing with a lifelong neurological condition. It's worth asking your doctor because if you can find a good one he should be willing to help you embrace any therapy that will help you.
You can always turn here for support. We understand. We are blessed to have such a forum where we can let our emotions out and face no judgement. Hope your day gets better!! :)
I was seeing a neurologist recommended by my GP and she turned out to be no good, lol. She was very unfriendly and I had horrible side effects to the generic imitrex she prescribed me but she refused to understand - she acted like she's the doctor, i'm the patient, I should just take the medicine she prescribes no matter what. I have to cut the 100mg sumatriptan in to 3 pieces if I'm desperate for migraine relief - even a half a pill of the stuff makes my limbs weak and increases my jaw pain. I've read stories that some neurologists don't consider chiari to cause migraines and I'm wondering if that was her case because she NEVER discussed my chiari with me.
I just wanted to offer a little look on the bright side, and hope that it helps cheer you up: 80% chance you will see a difference in your symptoms sounds like a lot better than 80% chance of seeing no difference. :) And being 50% good is way better than being 60 (or more) % bad. :)
That said, I totally understand the need to vent, that's why we're here, so you have somewhere to vent to, and people that actually know exactly what you're going through. So vent away, and post as much as you need to.
XO - Victoria
hi doodle... its insane, i almost feel like you tell my story, except i'm only at 8mm and was not in a car accident, tho some days, my body does feel like it. i know exactly how you feel and know how frustrating this whole thing can be. Often times i feel like i have no one to talk to or to vent to. On my good days i want to run a marathon, and on my bad days... i can hardly bring myself to get out of bed. however, i feel that happy thoughts can make a world of difference. so i'm sending you happy thoughts and prayers right now. :D
Venting is good for you! We are always here to listen. It’s sometimes diifficult for outsiders to grasp what we are really going through! Hang in there! Interested to hear wha your next mri shows. Keep us
Sending you positive energy!
Listening and can relate 100%
Thanks everyone! I had a much better weekend and am feeling good today :) I'm anxious for the CSF MRI on Friday, I'm curious as to how they do it, I've had 2 different MRI's in the past, the 2nd one was scarier than the 1st - so I'm hoping I'm not stuck in a plastic tube for a long time like the last time!!
so glad you are feeling better today
we are all here for you
as for the cine mri/ it is done just like a regular mri but a doctor must be present while they are doing it/ he actually does it / i believe
if i remeber right they did use a contrast dye but the needle was tiny and the dye did not hurt and it did not take all that long to do
hope that helps\keep us updated
I just joined here and I think that this is an amazing place, because the people here know what you’re going through when those at home, even though they mean well, just have no idea. I truly hope things look up for you. Remember, we will always be here to listen and help where we can