looking for Neuro surgeons in San Francisco area

[pepsidoodles]

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!!!!!!!!!!!!!!!

[pepsidoodles]

also, all of the neuropathis pain I had pre-op has returned, post op it was manageable, thought it could be gone finally,, but no :( as of right now it is back stronger than ever from head to toes teeth and mouth, am so sad, need some answers need some help :(

[Elisaandbucky]

Hi, welcome to a place where we try to help , support, and encourage each other. I am really pretty angry myself reading your story. Selma is the head of this forum (you found a great source, where you will not be alone). Below is a portion of one of Selma's posts about a list of doctors.
....................................

This list is not a complete list of possible Specialists -  This thread is here so Please continue to add your Drs  names once you have been treated  and like the Dr..

This is not any kind of "Official" list of Chiari Specialists! These are simply Neuro Surgeons that we patients have listed as liking. No background checks have been made about them. If you wish to follow up, please research on your own. If you are comfortable with your current doctor and he/she is actually qualified to perform Chiari Decompression Surgery, then don't let us tell you any differently. This list is just to help people connect with Neuro Surgeons. It is not intended as a referral, please research all Drs.

We do have links to other lists for other Countries in the Health Pages -http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

....................................


I really hope this helps you. Please come to post back about your next move.

[pepsidoodles]

thank you very much! no not happy at all right now!  had the ACDF  at UCSF, will go to the ER at Stanford possibly,,,,get the CINE MRI and other films done and find out what is going on, be it urgent or not, need help!!  best dr I know for CH/SM is in Oregon, might have to go back up there, Dr Edward Nuewlt head of neurosurgery and OHSU,, super chair side manner and human! one at now is at UCSF, no qualifications for CH/SM, was asking me questions instead, grrrrrr, no not happy!!!!! will let you know, but need someone with a grip hold of an idea about this for sure, have suffered for 14 yrs but never like this, and post op, the dr who did the surgery should have even a little concern with the ch/sm complications, think being put off 4 months is on purpose? I am starting to think so, and scared to be honest! thanks for your support, been through hell and back, still fighting somehow :( and I should not have to, there needs to be a protocol for these dam dr's to follow!

[Elisaandbucky]

Yes, there does. They need to accept responsibility for the patients whose insurance pays their salaries. I am having a decent low pain day; however, now I caught the cold from my little boy. Wash your hands a lot and keep your hands always away from your face. This is something I should have practiced when I picked him up early from school last week. I hope you can get a few days with less pain. When I do, I write a few paragraphs about it so I can retrieve it on my dark days.  :)

[pepsidoodles]

worried about more damage, an no idea if it is a urgent matter, the horrific pain said yes a long time ago,,but until I hear it from someone with a clue, will remain worried an scared, an that is not right either, the stress we are under from just living with this is more than most could take. Scared, would like to know what are the emergency warning sign with this conditions/ ch/sm, but there are no real ones listed, or what order does things happen as we are nearing death an so on, just frightened, have had it for 14 yrs, but it has progressed rapidly past few years, and not comfortable with that either.  It could be many things, but won't know until films are done, not waiting anymore, will get into the ER tomorrow or Tuesday, have to find out where this dr will be first, then call and let them know I will be going to the ER, so he is aware, and if out of town, then they will have time to let him know be ready for phone from ER dr, have to do something though, can't sit here in this shape with zero help or answers, just not right on any level :(

[selmaS]

   Hi  and  welcome  to  the  Chiari  forum,

  When  you  are  in  a flare up  of  pain and pressure look  to what you are  doing  during  the day.,...

  Most  times  if  Chiari  is  causing  an urgent  issue you would  be  blacking  out  and  having  issues  with  breathing....not  downgrading  your  pain and  pressure  but  those  are  the more  serious symptoms  along  with  the  pain.,

Do  let us know what  the Dr  said  and  try  to  relax  and listen  to your body  you  could  be   doing too much and  a  bit  too  stressed as that too can  affect how you feel.

[pepsidoodles]

thank you selmas,,, that is what I wanted to know,,sometimes it feels like my breathing is "heavy" hard to explain, the pain makes breathing hurt at times.  My inept surgeon just called (he is out of tow) and wants to send me to a neurologist when he returns, I have been to a quack neurologist before only to be treated like I was making it all up and I had physiological problems, I have never been so disgusted in my life!  And I just called the hospital where the surgeon who did the surgery, and spoke to the neurology dept and NO they do not have anyone that specializes in this sm/cm condition,, it would be another waste of my time trying to educate another inept dr, only to be treated like an idiot! I am tired of it!! I am tired of  the extreme pain, have never had it so bad, and it started immediately after the surgery......my idiot dr asked again, when did this all start, like it is something new, I hate him!!! I told him it has been going on since I came out of recovery!! And at the 2 follow ups!!!  I am going to go to Stanford for a second opinion, sick of this crap!!!!  Thanks for your help!!! xxoo :)

[pepsidoodles]

I did get a call from the neurosurgery dept at Stanford today, they went over everything they need, said it will be in Jan will get seen, the right dr is out, December is not the month to do to any dr other than the ER lol!!!  Anyway, ins said they would approve, and asked if I would like to file a complaint against the surgeon, told them to send me the papers, will decide on what the new dr has to say about all of this first.. but will file one, no one should be put off for 4 months after spinal surgery and not even tested for infection, nothing!!  At one apt, he had the nerve to say I was fused just 6 weeks after the 3 level fusion,, I said really?? You can tell all that with no x-ray, please I want to hear more!!  Then I went to take off my bone stim machine and I said, guess I won't need this then if I am FUSED already in a speedy 6 week!! Then he started back talking himself, well you need that for 9 more months,,I said oh really? then I must not be fused?? then he said he would order an x-ray, gee how sweet!!  He is a jerk with an ego as wide as the grand canyon!!  Will continue to get things done to get to the new dr, so tired of this!!! It is hard enough to function right now, let alone the pain I have been in daily, was in pain before the surgery,, but nothing even close to what have been going through post op,, but left to suffer for 4 months?? Is it all in my head really????  But still not going to a neurologist until he give me a name of someone who has seen more than a few pt's and is not just practicing like the rest in their field seem to be so far!! :( not happy, not by a long shot!!  Ready to give up? Yes, been at that stage for a while now! Tired of being tired, tired of begging for help, tired of the daily pain!!  He said don't go to ER unless weakness in arms and or legs, gee I have that now along with vertigo and dizzy spells, breathing is heavy at times, can breath, just feels like an elephant standing on my back,  :( this will be a long long following few weeks or months :(