I saw my NL yesterday for my MRI results so far no change but there is moderate atrophy of the spinal cord. Chiari is 6mm and syrinx is 3mm all the way down. Told him I am still in pain all day everyday told him about new symptoms I am having. He said my neck is in total spasm and that's why I'm in pain not from the chiari. I don't believe that I just think he doesn't Know what to do with me anymore. he gave my a new muscle relaxer I have been on 5 of them so for with no luck. Now he wants me to get injections in my neck for the spasm. this makes me very nervous I don't even know if that would be safe. Has anyone here had them?
On top of all this frustration I asked him for a referral for a NS and he told me I don't need to see one cause no surgeon would touch me right now. All I want is a second opinion what's the harm in that. Now I have to go to my pcp and get a referral from her if she can give it to me. I don't think he know the type of pain that I'm in and how it effects my life everyday. I walked out of his office in tears I have never felt so helpless or hopeless in my life.
Hi...
I am frustrated for you...I take it you have never had a consult with a NS???? This is not right..in my opinion. You have a large syrinx..along with a Chiari Malformation.....you need to see a NS! I am so angry when I read about this happening to us with NL's who know NOTHING about Chiari or SM....
Do you need a referral with your insurance to see a NS???? Will your primary work with you and give you a referral if need be??
I have Chiari, no syrinx.....I did have injections years ago b4 I was Dx'd with CM...Personally, I would wait and demand to see a NS.
I came to the point where I said no more NL's!!! Once Dx'd properly, my primary and myself said that the NL's were 'out of the loop ' at this point.
Frances, I so know that helpless and hopeless feeling....it is so unreal....the feeling, that is...I remember putting my kids to bed at night then going outside ..rocking in a chair crying, crying, crying......
The good news is...there is HOPE.....you need to get your primary to advocate better for you.....
We are all here for you...I can tell by your post how upset you are(rightfully so!!)..Please let us know how you are today.
Love,
Lori
i have had them but only after my surgery and i tell you they had not worked one bit for me and actually made things a little worse...
i know its frustrating, good luck be very careful in whatever you choose to do though.
Hi Frances,
Lori is so right. You need to see a NS. The NL doesn't know what he is talking about if he says your pain is not from Chiari. If there is spinal cord deteriation then something is going on! I would definitely seek a second opinion of a surgeon before you just give up. I, too, know that hopeless feeling. I am kind of there right now, too. I am having such terrible jaw pain and no one seems to know where it is coming from. The MRI doesn't show anything. Now my NS is referring me back to my NL and the NL keeps changing my appt! I am so frustrated! I feel your fear and hopelessness. Don't give up! Talk with your PCP and get that second opinion referral.
Take care,
Carla
Thank you ladies for the replies and advice. I made an appt for this Friday to see my pcp. going to ask for my referral then. I have never seen an NS just my current neurologist. I am hoping to go to Montefiore in the Bronx. I have read very good things about their neuro department. I have decided that i’m not going to get the injections instead wait til I see the NS and he/she can tell me what to do next. I’ll keep you guys posted.
YES GET TO A NS
i cant stress how dangerous this is for you, and injections are not going to help it, the problem is not your nerves in your neck the problem is chiari and the syrinx,
where is your syrinx?????