I was wondering if anyone else has been dx with chronic migraines? My ns said my Chiari 4mm according to my mri was not blocking flow enough to be causing me the pain n symptoms I’ve been having n is sending me to the nl for chronic migraines. Have any of you discovered it isn’t the Chiari causing your symptoms? If so what is it? I’m to the point I don’t care what it is I just want it fixed! A brief list of symptoms include…severe pressure in my neck and neck is causing me the most pain, twitching in random parts of my body, numbness in my arms, stuttering, loss of words, confusion, swishing sound in my ears, ringing, sound is intensified, light as well, pain in my legs sometimes, feeling like I’m literally on fire, sounds strange I know!, night sweats, blood pressure is all over and it’s usually perfect, If I do feel good and do some work I pay for it as all my symptoms come back with a vengeance! There’s more but I think u all get the pic lol I’m like so many of u with dx of anxiety, depression, and it’s just not me, I was a happy, very energetic and independent person.
I’ve heard there are other things tht can cause these symptoms and would like any info that I could tell my nl? I cant afford tests after tests to find nothing, I’ve had MRI of my brain, neck, and upper back, can you all tell any tests tht you have found beneficial? Any help would be great! Also as for the migraines, I’ve had migraines but I just don’t feel tht it’s what is constantly causing me pain, am I wrong? Feel like I’ve lost it! You all are great!
Hi Diane:)
I have Chiari with a 4mm herniation and Syringomyelia. My NS told me that my herniation and syrinx are too small to be causing my pain/symptoms. I have a lot of the same symptoms you do plus severe back pain and pain/swelling/numbness in my legs and feet. I’m going to Seattle to see Dr. Ellenbogen, who is a NS that specializes in Chiari. Before going to see him, he has requested that I get a CINE MRI to check the blockage of spinal fluid. Have you had this test yet? The old definition of Chiari was based on a herniation of at least 5mm. This has since been proven inaccurate. Now, it’s based on the blockage of CSF and/or compression of brain stem and spinal cord. If your NS is basing it on the herniation, he is not informed about Chiari. You should talk to someone that has more experience with Chiari. There is a list, in a previous discussion, of NS that specialize in Chiari and related conditions. That is how I found Dr. Ellenbogen. I hope this helps:) I know how frustrating it is when your pain/symptoms aren’t taken seriously. Good luck in your Chiari journey! I look forward to getting to know you better:)
Crystal
You have a lot of obvious Chiari symptoms so if the docs have ruled out all the other causes, what the heck else could it be. It sounds like they just aren't taking you seriously at all. Crystal said it all.
Also, I had those exact same symptoms when I was trying to be active and just ignore the problem like everybody wanted me to. I would wake up in the middle of the night and my feet, hands, and knees were bright red/swollen/burning. I described it the same way too, like they were on fire. I hate to say it because I know it's hard (especially when nobody believes you) but you need to not be so active right now. Another important thing that I just learned the hard way, is to try and not freak out :) If you find yourself freakin, just sit down and just concentrate on breathing deep and slow. A specialist is definitely the way to go. good luck<3
Any ideas of a specialist. The ns I saw was our specialist here in iowa! Thanks for ur replies guys, it helps a lot to know u all r out there.
Hi Diane:)
I live in Washington state so, I don’t have any personal experience with anyone in your area. Some doctors that I have heard some people talk positively about are:
Dr. Menezes in Iowa
Dr. Heffez in Wisconsin
Dr. Oro in Colorado (I’ve heard a lot of good things about him)
Also, if you go to the Resources tab, there is a link for a longer list. You can also search for keywords like “doctor” and “doctor list” in the discussion forum. This way, you can actually hear first hand experience with the doctors from the people in this group. I hope this helps:)
Crystal
Thanks Crystal, Dr Menesez is the ns I saw this last time. I will look through the list but I’m actually ready to say forget it, I can’t afford to keep doing this. I guess I just deal with these symptoms, apparently a 4 mm herniation isn’t enuf to cause this much pain n Dr Menenez said he don’t know why I’m twitching n stuttering but it’s not Chiari n that’s all he has the time to deal with. I can’t afford to travel any further cuz I haven’t been able to work so I’m frustrated and tired of trying to make a dr understand how I feel. But I do appreciate your reply, u guys here are so great! Thanks
I completely empathize with you. I experience all the same symptoms with the exception of my blood pressure. My neurologist tells me its my migraines and fibromyalgia that are causing mine. I went to see him yesterday. Today he called and is referring me to a neurosurgeon. Ive been dealing with this since January 2010. Im still at a loss myself but we will see what this neurosurgeon says. Any doctor I've seen says it's fibro or migraines.I'm a 5mm herniation. I know what its like when you just can't function and you just wanna get back to normal. I was laid off work june 2011 after being at my job for 12 yrs. Man, it sure is an adjustment. i find myself crying or angry all the time....when i have a flare up. But God has provided for me all my life...HE will get me through this. I must admit it's hard at times to focus...i feel like I'm not myself. Sometimes i think Im going crazy. But I know that's not the case. I am hopeful to see what this neurosurgeon has to say. Keep your head up and Ill keep you in my prayers.
hartnsoull said:
I completely empathize with you. I experience all the same symptoms with the exception of my blood pressure. My neurologist tells me its my migraines and fibromyalgia that are causing mine. I went to see him yesterday. Today he called and is referring me to a neurosurgeon. Ive been dealing with this since January 2010. Im still at a loss myself but we will see what this neurosurgeon says. Any doctor I've seen says it's fibro or migraines.I'm a 5mm herniation. I know what its like when you just can't function and you just wanna get back to normal. I was laid off work june 2011 after being at my job for 12 yrs. Man, it sure is an adjustment. i find myself crying or angry all the time....when i have a flare up. But God has provided for me all my life...HE will get me through this. I must admit it's hard at times to focus...i feel like I'm not myself. Sometimes i think Im going crazy. But I know that's not the case. I am hopeful to see what this neurosurgeon has to say. Keep your head up and Ill keep you in my prayers.
Awe, thank you sweetie, I needed that! Yesterday was horrible and I’m so sick of trying to get help from someone so I did feel like giving up and still not sure what I’m going to do but I agree God will help me through. As you said, I also want to be myself again and do feel like everyone thinks I’m crazy including me sometimes! I haven’t gotten the fibro dx yet but I have seen tht Chiari is often misdx as fibro or ms. My Chiari is 4.3mm and I have to say Dr. Menesez said he wouldn’t consider it Chiari until 5 mm, we’re talking about mm here people! Really if my herniation was .7mm more he would take me seriously? And he’s our Chiari specialist here in Iowa but I believe he’s not up to date on his studies bc as I said he told me twitching and stuttering, actually a lot of my symptoms were not bc of Chiari. I’m sure you’ve had migraine before too and know the huge difference between those and Chiari headaches!
Wow sorry, I did not mean to rant again lol I am so very thankful for ur understanding, u have no idea how much it means…well…u probably do! The prayers always help. Last night I prayed most of the night bc I couldn’t sleep and couldn’t stop twitching…today my day was really good until about 2 hrs ago so I know without him I would be nowhere. Plz keep me undated on ur appt!
i definately will. and believe me...we arent crazy. Im so glad i found this support group!!!! you keep me updated as well on how you are doing. your new friend, andrea
Good luck today Andrea! U r in my thoughts! Let me know how it goes for u today I will be anxiously waiting n praying for good news to come ur way. Diane
Thank you Diane. I apologize for misunderstanding but i dont see dr today. my appointment with neurosurgeon is feb 17th. But thank you for your prayers and good wishes. How are you doing today? i hope you have a "normal" pain free day today. God bless you...
I definitely feel your pain Diane. I have yet to see a NS and finally have an appt to see one in July and I am so scared that I am going to walk in and walk out with nothing resolved. I was diagnosed with Chiari in March 2011, my NL just pushed it off as migraines as well and wanted to put me on antidepressants on the first visit which was in 2006 before I was diagnosed and I went to see him again after I was diagnosed in 2011 and he said the same thing migraines, he didn't think the Chiari is what's causing me all the trouble because it was something I was born with and I have a 10mm herniation, I felt so defeated and left feeling like no one will ever take me seriously, I thought he would have something different to say because I had Chiari but no, just didn't care. But these NL's and NS's that just push it off as something else are obviously not educated enough on Chiari and just don't want to be. Your definatly not crazy and unfortunately it's only people who have Chiari that understand the pain and frustration that we have to go through on a daily basis. I understand the frustration but don't give up hope, there is help out there. All the best. (Laurie)
Tht is absolutely true! It’s too bad we don’t have a few Drs in our group, I think that’s the only way I’m gonna be taken seriously! It’s nice to have ppl like u to talk to, helps me keep my sanity! I hope ur days are good ones! U r definitely in my prayers