I went to my family doctor today and she set me up with a "Patient Care Coordinator". Does anyone know what this person would do for me? The doc said that she could help me coordinate care...but with who? I don't have a NL or a NS. Does anyone have one of these? Another question...I have lost the feeling in three of my fingers on my right hand, two of my middle toes on my left foot and three of my fingers on my left hand are going out. They feel like they are permanently asleep. Have you ever had this happen to you and did the feeling come back? I have a torn rotator cuff in my right shoulder, do you think getting cortisone injections would help to get the feeling back in my right hand? I have been putting this treatment off for a few months now. The pain in my shoulder is much less than the pain in my hands and feet and head. Has anyone had any of their doctors tell them that they are just going to have to live with this pain for the rest of their life? And if so, what was your response to that?
I'm pretty sure that I am of the 20% that the surgery was unsuccessful for. All of my symptoms are back and are progressing. I am very frightened that some doctor is going to tell me that this is as good as it gets. I don't know if I could handle that. Any response to my questions would be lovely, thanks!
I just had surgery so I don’t know if mine has worked yet, but I can relate to the feeling of hopelessness. Medicine is always progressing, new techniques and new drugs so please don’t loose hope!! Have you seen another NS? I’ve heard from more than one person who has continued pain after the surgery that lyrica ( I think this is the right drug, I know it starts with an “L”) gets rid of the pain. I think a pt care coordinator takes a close look at your medical story and “coordinates” future care to ensure no overlapping on test or treatments to save money. Many health care organizations have turned to coordinated care to save money and provide more “sensible” care that may treat the whole person, the root of the disease instead of just treating symptoms.
Most of us chiarians , at some point, have been told that there is no treatment for us/ there is nothing wrong with us. Since you’ve had surgery I’ll bet that already sounds familiar to you… not your first rodeo with a na-sayer! Don’t give up hope, you possibly have just a bit further to go in your chiari journey or the rotator cuff could be really heightening any residual chiari symptoms. Definitely take care of your shoulder, neck and shoulder live so close to each orher and share symptoms. Hang in there ok?
A Care coordinator is almost always an RN who helps manage your care. They make sure that your diabetes is controlled by having such things as regular bloodwork, followup appointments, recommending a dietician and such. Many dr’s are going to this way of practicing. It helps to insure patients don’t fall through the cracks. We use them a lot here and more and more of our nurses are leaving hospital care to manage patients. I hope this explanation helps. In most cases it really is a good thing.
1st off...I don't think we have 'met' ..so ..HI!! I am so sorry that you are still having issues and that your sx's are progressing.
Hope you don't mind..gotta a few questions...when was your decompression done? When was your last MRI...head and FULL SPINE???
No, I have never had a doc tell me that I would have to live with the pain and other issues....Get that thought right out of your head!!! Medicine is NOT an EXACT science...and if one of these people who happen to have an MD at the end of their name, though, 'somewhat impressive'..they are NOT GOD!!! Can you tell I am mad for you....?? Do not let anyone ever take your hope away!!! We are here for you..let us in and try to help you...we cannot 'fix' you..but emotional support is good medicine too!
As far as you main question about the 'Patient Care Co-ordinbator'....my own experience is that these folks help the doc out..make sure unpaid bills are paid, appts kept.....my docs PCC is actually a social worker! So, I cannot ask her any medical questions...In my docs practice it is all about being able to keep the lights on! she needs to see 9 patients A DAY..just to break even!!! So , the PCC does the paperwork ect..non medical..the medical assitant and the Nurses make all the med appts. now that is just in my doctors office....social workers come real cheap..where RN's make a lot more per hour..I have a sister who is a social worker and one who is an RN....keep us posted on how you are...we care.
oh yeah..so not to tick any social workers off...when i talked about the pay scale..that is based on only a 4 yr degree...I know, I am full of useless info...fun facts as my girls tell me!!