Hello, I have ch/sm, spinal stanosis, syrinx from C-6 to T-2 9mm dia, just had ACDF 3 level fusion C 3&4 4&5 5&6 done Sept 2014,,,,,immediately after recovery while in hospital had horrific spasms start..it has been 3 months post op and the spasms have continued to worsen and spread through thoracic area mainly on left side of back shoulder area,, having knife like pain in middle of spine about T-4 & 5 area, the pain is and has been severe for 3 months now, on heavy meds...went to ER,,,,been telling surgeon, Dr Quattrocchi,,and being treated like it is all in my dam head!!! Tired of this!! Before he did the surgery, he assured me he was an expert in my conditions as well as my spinal problems, I also have the scoliosis,, never been told where the ch/sm is from or why...have had it since 2014, was DX at OHSU in Oregon with Dr Neuwelt who does know something about these things...I recently found out Dr Quattrocchi is not an expert in CH/SM as he said he was....since the surgery,, I have asked him why I am in so much pain, he assured me it would be better, that was over 2 months ago! Over Thanksgiving week I spent calling (had been calling his office for the month before without 1 return call from his office) but am desperate by then,,,he got me into his office the week after, first week Dec 2014, told him how horrific the pain was,,he sent me home and ordered a MIR of T spine and CT of T spine,,has never ordered a new MRI of sryinx or CINE MRI yet since the surgery, and considering the level of pain I am in, I am very saddened by his lack of care as a professional Dr of any kind right now!! I ended up in the ER from the pain Dec 3rd the night I got home from his office!! Why he did not just put me into the hospital and do the films while I was there I have no idea!!! But I have been suffering far to long!!! 24/7, it does not let up!! His PA just keeps telling me to take more neurontin like it will be some kind of miracle drug, it has done NOTHING for this pain yet!! Yes I am mad as hell right now for lack of care!! How loud and how long do I have to scream to get any help??? I even sent him a message saying that!!! The MRI an CT are finally scheduled, but not for a few weeks! My follow up with the dam DR is not until mid Jan 2015, and BTW he is out of town until then!!! I even sent him a message giving him permission to discuss my case with Dr Neuwelt up in Oregon since he said he was friends with him... I asked him why am I in so much pain?? His reply,,"well what do you think it is?" this is crap!!! I want some dam answers and some help, and I am not getting it!!!! I had spinal trigger injections the last 4 to 6 weeks normally pre surgery, had them this past Tuesday, slept for 22 hrs, have not had more than 1 hr sleep a night since surgery, and am exhausted!! But the trigger injections lasted only 24 hours!! I sat and cried for an hour as the pain came raging back!! Waiting on approval for the botox injection for the spasms now,, but this is all taking to long!! He has let me suffer for 4 months and not done a thing to expedite any of this!!! I can't take it much more!!! I sent him a message saying if he has no experience in this then please send me to someone who does! Am worried could be "plugged" but feel like spine has a balloon in it, the pressure!! Please if you know of a good specialist in my area, please tell me who it is, someone who knows this crap well!!! I have been to 3 neurosurgeons in the area and one at UC Davis all spouting to be experts when I know more about this crap then they do and I am at my wits end right now with anger and pain!! I want to go to the ER again, but I know all they will do is load me with meds and send me home!! They ran all the usual tests and CT, heck they thought I had an embolism the pain is that bad!! No one is helping me!! And I don't know what to do! I have left numerous messages for the surgeon, I just get a reply from the PA by email, keep your follow up in Jan apt and we will review the films then. I can't take this pain another dam month, it has been 3 months or more now,,4 months to get help, this is so wrong on so many levels!!!!!! I know Dr Grant at Stanford only see's children,, the neurosurgery clinic there said they would see me and do surgery if needed, the gal said they had Dr's there that could help, but would not give me a name of 1 of them, nor answer how much real hands on patient experience any of them had!! I do not want to see one more Dr that has treated just a few patients then claims to be an expert on a rare illness, this is so ridiculous! There should be a law on what Dr's are allowed to put on their BIO's of expertise when it come to rare conditions/diseases/illness's I say a Dr in Napa,, we will call him Dr Y,, first sentence out of his mouth when he pulled my MRI was what on this MRI, it was not done right, there is something on the film you need new ones!! I was quick to say that's what I am here for, and no there is no mistake on the films, that is what is in my spine!! With that I walked out, he must enjoy too much Napa wine! But he did manage to send my GP a report should say copy, and he copied it word for word the hand book on this condition! My GP showed it to me, it was the hand book I gave him when I left, we laughed at that one, but then went to his web page and now he has it listed he is also an expert in CH/SM!!!! This is obscene!!! Ok, need to calm down pain spiking right now....but I need help bad, can travel, looking into Batzdof at UCLA, but his age and mixed reviews does not settle with me, am sure he is great for some..what to do? Does anyone know whom I should try to see???????? Thank you!!!!!!!!!!!!!!!