Hi everyone. I have mentioned before about severe tingling and numbness in my arms, especially at night. I am still dealing with that pretty much daily, but for the past week I’ve been having terrible “shocks” of nerve pain through my arms down to my hands. It is extremely painful and happens out of the blue during the day, whether working or still, and it’s been waking me up at night. It is terribly painful when it happens, then it’s gone until the next “shock.” I have no areas of tenderness, and I cannot reproduce the pain with movement. Is this a chiari symptom, possibly a sign of a syrinx?
I see my NS next week and have my first CINE. (Seems so far away at the moment!) I am equally scared that he will tell me I need the surgery, or that he will tell me to wait and see. Ugh.
Thanks for the response, Ophelia. Good question. I did have a nerve conduction study a little over a year ago, and it came back normal. :-/ That’s pretty much when the NLs decided to just lump all my symptoms together and label them “migraines.” I am on amitryptyline which has been doing a fairly good job blocking the true migraine headaches, but it has stopped helping with nerve pain and vertigo…
As far as MS, even tho I have a lot of symptoms, my MRIs have all been normal (except for Chiari), and I passed an EVMP test about six months ago… As far as my local NL is concerned, I have MAV. I don’t know what he is attributing all the other symptoms to. That is what I am on the hunt to figure out! You know it’s getting bad when you’re desperate enough to let someone crack open your skull with only an 80% chance it will even help, and with the possibility of making life infinitely worse. Actually, I should rephrase that: You know it’s bad when you WANT someone to say they’re WILLING to crack open your skull, Lol. (Well, truthfully, I don’t know if it’s quite that bad YET. :-D)
I hope they figure it out. I get pains too and had carpal tunnel surgery on both hands. I get them in my feet as well. I don't have MS or Lupus and do have Chiari w/out syrinx. I may have an autoimmune problem but we can't figure that out yet. I have an 85% chance or better of relief from all my symptoms. I know what you mean about wanting/willing to have your head opened up to get relief. As I am writing this the burning is going down my neck into my shoulders.
I hope they can give you answers soon and get the surgery done if you decide you need it!
Thank you for the recommendation of Dr. Beijjani. He has been in the back of my mind for a while now as being the first person I would consider if I need a second opinion. For now, we are very comfortable with Dr. Luciano at Cleveland Clinic. I greatly respect his opinion and will see what he has to say when I see him in a few days. I feel so blessed to have options living here in Ohio. Cleveland Clinic is so well-respected with so many world-class experts, and also like you mentioned, Dr. Beijjani is not too far away either. The Mayfield Clinic in Cincinnati is also another option, but at about a 4 hour drive, it is not at the top of the list right now. ;-)
So these nerve pains have not bothered me now for the past 2 days, so I have no idea what is going on... That is what is so confusing. It can be terrible pain for four days and then completely go away... This is how my vertigo is too. It will hit me out of the blue, be really bad for a week-10 days, then go away and not bother me again for 4-6 weeks... I am confused and so far no one can tell me what is going on...
Ophelia, good luck to you on your upcoming surgery. I'm sure you are going through a whole range of emotions right now. (I can only imagine how I would be feeling in your shoes.) I want you to know I will be praying for you. :-) Please do take care of yourself, but I hope you can come back when you are feeling up to it and let us know how you are doing. (((Hugs))) and lots of prayers!!
Thanks for your response. So do you have any suggestions of what other conditions could be causing this? As I mentioned in my post above. I haven't had any problems with these pains for the past two days now, while for 4-5 days before that, they were bothering me so bad, they really disrupted my normal activity. Is it common for Chiari symptoms to cycle off/on like that? I think this is one of the main reasons my local NL is calling it migraine (the coming and going of symptoms off and on). A couple of docs have said that if it's a Chiari symptom, then I would have it all the time. But then when I went to see the migraine specialist at Cleve. Clinic 2 months ago, he said, no, it didn't sound like migraine to him, and he saw something in my reflexes that pointed to something wrong in the neck (he didn't know what, though), and told me to just wait and see what CINE flow shows and what NS says (scheduled for this week). Pending CINE, he said "I am recommending you for the surgery."
I guess I am just trying to sort some of this stuff out before my upcoming appt. That's why I'm asking so many questions here. (Thanks for bearing with me. :-) I kind of feel like I'm studying up for a huge exam or something. I realize the time with the NS is so important (and limited!) so I want to know the right questions to ask, etc. A lot of the info on the net, especially from Chiarians, can be confusing. I feel like I'm getting some conflicting information between docs on what Chiari symptoms really are and from actual Chiari patients. So can any of you guys/gals tell me if your symptoms come and go from day to day, week to week?
I have so many symptoms, I'm truly scared to list them all for the NS for fear of "the look" - you know the one where it's obvious they think you are a complete hypochondriac who needs a new hobby, Lol. (Just a little humor there, but you know what I mean?) I am even considering printing off a Chiari symptom list from some official govt. website or NINDS or someplace like that and highlighting all of my symptoms. I wonder if that would be effective...Have any of you ever done that?
jcdemar said:
I think it could be Chiari related, but it could also be a bunch of other things too. Maybe time for a new nerve conduction.
Yes, I had a C-spine MRI in Sept. 2012, and it did not show a syrinx at that time. (Although it was in one of those lower power "open" MRI machines, which I didn't learn until about a year ago have a significantly lower quality of imaging.) But assuming that MRI was correct and there was no syrinx in 9/2012, could I have developed one in the time between then and now? How quickly do they form? I would say that my symptoms have progressed since then as far as the upper body numbness.
I also have had some of these same type of nerve pains in my legs, but they have largely been helped since taking amitriptyline. However, I do have chronic foot spasms in both feet - several times a day, every day. These are often induced by different sitting or squatting positions and rolling over in bed. They are very regular and predictable based on movement. They always are like a tight, charley-horse type of cramp followed by spasming and takes some effort to release the cramping. No doctors can tell me why this happens. Any ideas?
As far as whole spine MRI, it has not been suggested - only C-spine and CINE? Should I ask for one?
Thanks!
gag said:
Yes, CM and syrinx can easily be the cause. Have you ever had a cervical MRI checking syrinx, and for that matter, total spine mris should be checked.
Yes, Bluebird, if you have CM, syrinx could have developed over that time, and since you have leg symptoms with movement and non-weight bearing as well, you could have a syrinx below in the spine.
Go to the Resources tab above for some good links on this. Ask the doc for new total spine mris, and they should go along with this and answer your questions..
Blue, list all of your symptoms. We have been trained by doctors to downplay everything we go through, so your going to have to resist the urge! When I read the reports from my NS everything that I had said to him about my symptoms was written down. Then he compared it to my post op symptoms list- so that’s a good way to measure success. Also one of your symptoms may point to another surgical issue so don’t assume the NS is going to be bothered about it.
The shocks… I think it could be your neck: stenosis, instability, degenerative issues. It could be your brain stem, it could be peripheral nerves in your shoulders or arms. I too had the hyper-reflexes with some clonus which was all improved by the decompression- that tells me mine was brain stem. Each person is different. I saw your response to Gag about your leg and feet issues too, that made me think of tethered cord. Most NSs check for it but just be aware of it so it doesn’t get over looked.
You are doing such a good job of arming yourself with knowledge. We all have to be extra vigilant about our treatments because in a lot of cases we literally know more then they do, and we don’t necessarily find this out right away (they’re usually so confident that we don’t think to question them). Let us know about your cine and what comes up. But remember no one thing is the tell all- it’s the whole picture of flow, symptoms, neuro deficits, and presence of a syrinx, and the patients quality of life. I’m in the same spot as you- I just had my flexsion extension MRIs done to show instability. I’m nervousness that Dr Henderson will look at them and tell me I’m fine there is nothing to fix, and then I’m also nervous that he’ll confirm that I have a messed up body and it needs to be fixed.