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Thread: If I explain the symptoms maybe you can relate...

  1. #11
    HI thanks both of you. NO walkingquad, I wasn't fused, I have a cervical cord injury, I explained it in my first few posts. I am told at a year Ishould know where I'm at, but, how this is now. Just brings tears to my eyes.

    HLH- ahh I tried, what happened is they didn't confirm my damn appt I waited 5 weeks for- THEN when I asked to resched cuz THEY screwed up- they let me know it'd be ANOTHER 5-6 weeks!! I told them to ;.. well I wont tell you what I told them- lol but alas I found REAL psyiatrist to see, and I go very soon. I only was referred last week and they got me an appt right away. I will never deal with Kessler again.


  2. #12
    Quote Originally Posted by rosieC12 View Post
    HI thanks both of you. NO walkingquad, I wasn't fused, I have a cervical cord injury, I explained it in my first few posts. I am told at a year Ishould know where I'm at, but, how this is now. Just brings tears to my eyes.

    HLH- ahh I tried, what happened is they didn't confirm my damn appt I waited 5 weeks for- THEN when I asked to resched cuz THEY screwed up- they let me know it'd be ANOTHER 5-6 weeks!! I told them to ;.. well I wont tell you what I told them- lol but alas I found REAL psyiatrist to see, and I go very soon. I only was referred last week and they got me an appt right away. I will never deal with Kessler again.


    What... you are near Kessler? That is the fantasy for most of us. I would see them no matter how long they made me wait. Your posts are a little confusing, as it sounds like you were expecting them to ?reconfirm and call you. That's not their responsibility really. You missed your appointment, you wait for the next one.

    It's great you found a physiatrist, but honestly Kessler is one of the best places in the world for SCI. Wow...

  3. #13
    All physiatrist are trained in SCI but Kessler has board certified SCI specialists. Is your physiatrist a specialist in SCI? And his facility?
    Also while a referral is made, it is up to the patient to follow up for the specific date and communicate with the facility if you want everything to be done in a timely manner and fits in with your schedule.

    Also a new pt evaluation takes more time and is scheduled differently because of that. Once you are in the system, it probably wouldn't take that long to get an appointment.
    It depends on what your plans and issues are but Kessler is one of the best and has experienced SCI healthcare providers .
    CWO

  4. #14
    Kesslers automated computerized system didn't work right and didn't confirm my drs appt- EVERY doctor I know of, and have worked for, confirms appointments 1-3 days in advance. I never got a confirmation call, PLUS, they were to schedule me in one town, so I drove- by myself- an HOUR, just to deliver my notes 2 weeks prior like they requested, but to the WRONG office- so then they inter-office'd it for me. Then, atop that- they didn't confirm my appointment- which I RELY on- I have about 5 drs appointments a month PLUS was in phy therapy 3x a week. They even figured out that it was their fault- yet did NOTHING to get a sooner appointment like EVERY office I've worked for, or been to and seen people have problems. It's common courtesy to try and make up for lost time- and their screwing up- which they did neither and offered me to wait another almost 3 months. Forget that. The secretary I dealt with was lacking severely, and after going through ALL of that- there's no way I would go to them. I was not impressed by their PT either.

    I saw my neuro- who said I'm at a pleateau, (however u spell it) and that I will have a scar too where the injury is, and that I still have serious defacet (however uspell that one too). I've just had it. My PT discharged me cuz I havent improved in over 2 months. I am at 5 months since injury.

    I did see the other psyiatrist, i dont know if shes board anything to be honest- I think she is- but I was not wow'ed by her either. I was switching to a psyiatrist to LESSEN how many drs I see a month- as I was under the impression they handle all the meds I am on, handle the PT and gear it to what I need, and know neurology. WRONG- well, at least that one.

    She said- ohh well your pain mgmt dr is doing a good job- so- I'm not touching that part of it let him handle that- your neuro has been handling everything else, and here's a script for PT - had no where to refer me to- no - have them call me so I can tell them what to do- nothing. SO I wasted my time yet again.

    I dont need ANOTHER doctor atop all the ones I already have. and my neuro PLUS my outpatient PT (which was kessler) both say I am not progressing anymore. So this is me I guess. I don't even know why I bother getting out of bed anymore. I am tired of having to hunt for a GOOD doctor, or someone ANYONE to know something to do, tell me what the hecks going on- ANYTHING. It's just a waste and an I dont know' waiting game. NOW I am told I will have a scar in there too??? Does that mean I will stay the same- or now that i'm getting a scar (or have one idk?) that I gotta worry about something growing in there, or pushing on something- all this stuff and getting worse or pushing on something that will put me on a vent- or more paralyzed than the severe weakness I have- Its at c1-2. I walk, I breathe. Not that I dont have ALOT going on- but nothing like a true c1-2 injury has that I've read and talk to people with.

    I still get all those spasm/jumps, one sided bad weakness- ALOT, numbness, cant feel anything properly nor tempertures on that side. TONS MORE, I'm just sick of telling people or trying to remember what I DONT have that i usedto. idk.

    I'm just fed up and sick of everything. Too sore, its cold and going to rain tonight and I'm dyin in bed w severe pains everywhere and my neck is absolutely killing me. Just miserable.

  5. #15
    Take a deep breath.

    Take another deep breath....

    You need to get a calendar, and write down your appointments. I would never assume a doctor just randomly cancelled my appointment because they didn't call me to "confirm". That was your mistake. YOU call the doctor if you aren't sure. Our doctors never call us for appointment reminders. Now move on, and learn from this.

    Kessler is the place to be. Make an appointment. Your records are there.

    Make a list of what you want, your questions, and go in to the doctor asking for a plan.

    Considering letting the physiatrist take the place of the pain doctor and the neurologist, for example.

    You also need to start treating your anxiety and depression. This is normal and common for many after injury, and you are not alone with this. If your primary care doctor wont help you, bring it up with the physiatrist.

    And no, this isn't the end. You are doing better already then 90% of the posters on this board. I know that's hard to believe.... but you will continue to make improvements. People continue to improve after spinal cord injury for YEARS afterwards. Just keep walking, keep doing your home exercises.

    It is frustrating when your intense round of PT comes to an end, but your therapist was stating that you plateaued only based on INSURANCE COMPANY criteria. Insurance companies want to stop paying for rehab as soon as possible, so they require the therapists to document and require much faster rates of improvement then are sometimes realistic. It is unfortunate, and wrong. Physiatrists realize that really all of us should be doing "therapy"/exercise... indefinitely.

    The doctors appointments will decrease over time. This is still very early, and honestly, you need the most input you can get at this point. It takes some time to find the best doctors, but invest the effort in looking for them, go prepared with questions and write everything down.

    Chances are very good that it will get better.

    Please treat your anxiety.
    Last edited by hlh; 04-26-2012 at 10:41 PM.

  6. #16
    hlh has given very sound advice, IMO. I haven't commented on the thread until now because there really wasn't anything I could add - and am only doing so now because I want to underscore the need for you to go to the best facility in your area. Having had dreadful medical care at critical stages of my condition (MS), I urge you to go where the expertise is - in spite of anger and frustration. The people at Kessler would have been within their rights to charge for the missed appointment(s), so rescheduling was a kindness - though I do understand that because of anguish and almost unbearable levels of tension at this stage of your journey, it seemed like a slap in the face.

    SCI is a wilderness, and there are no easy routes through it - if you are within reach of a proven guide who knows the terrain (i.e., Kessler), do whatever you can to get onboard.

    (For the record, my experience has been the same as hlh's when it comes to reminder calls - most of the specialists I've seen don't call, they expect the patient to remember. My local ENT and dentist do make reminder calls, but not the big guns in Denver.)

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