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Really Great News... and Alittle Scary News as Well

AnonymousUserAAnonymousUser Posts: 49,670
edited 06/11/2012 - 8:27 AM in Pain Management
Good day all. First off I'd like to thank all of you who have sent me PM's wondering about how the appointment with my new doctor went. It makes me feel good to know that so many of you care so much. So here goes the news.....

Great news first!! My new doctor.....well, he IS my new doctor!!! He and I hit it off like I could have never imagined. He is my age, we actually graduated high school the same year and know a couple of mutual friends... how crazy is that? He has recently taken over his father's practice as he retired. He spent almost 30 minutes with me getting the "short" version of what has brought me to where I am now. He said that I looked "great" especially with all that has transpired in the more than a decade of dealing with this pain monster that stalks us all. He looked me in the eyes and said "well I trust you".... I told him that I felt we had a good connection and that he could very well be the guy I have been searching for (hell, all of us are searching for for that matter) and that I would truly appreciate his taking over my care. He had no problems at all with that. He never asked me ONE TIME who my previous doctor was, he didn't care. He said that he likes to make his own assessment of patients and go from there.

He then started to write out all 7 of my medications. He noticed that I had listed that I take 450mg's of Effexor XR perday and looked at me with great concern. Apparently the maximun daily adult dose is 225mg per day..... I am taking twice the prescribed maximum dosage and have been for well over a year. We are slowly lowering my dosage of the Effexor... unfortunately it has the longest half life of any other antidepression/antianxiety meds and can be a trick to get the dosage lowered without the WICKED withdrawls that come along with this med. To me this is just another checkmark under the "positives" side of this new doctor... I know he is paying attention to what is going on with me.... the big picture.

He upped my Percocet 10's to 1-2 every 6 hours from only 1 every 6 hours as I am having new pain problems and symptoms (that is the other part of this post... the scary stuff.) I'm going to follow up with him in a month to check on the Effexor and see how I am doing with the decreasing dosage.

SO, as you can see, I couldn't be happier to have found this wonderful guy!!! I felt 100lb's lighter when I left his office. I feel like I have someone who is on MY side and wants my quality of life to be the best it can be, as I do.

OK, now for the scary stuff. Prior to my 1st appointment with this doc, I woke up one morning with pain, weakness, and complete numbness in my left great toe and 2nd toe.... this is my GOOD leg!! I stayed in bed for 2 days thinking it was just some crazy inflammatory process going on, but to no avail. The symptoms were not lessening in any way, so off we went into the ER late one night. The ER doctor was very concerned when he did all of the neurological stuff they do (push, pull, leg lifts, lack of reflexes, etc.) I was sobbing. Scared to death. My biggest fear in this life of mine is ending up in a wheelchair..... with new symptoms in my GOOD leg, well it just scares me to death. The Arachnoiditis is obviously progressing. That scares me half to death..... I don't think about having this condition as it can be really overwhelming to think about as there is no cure, it only progresses. The ER doctor gave me shots and got me as comfortable as he could at the time and recommended that I see my Ortho or Neuro asap.

I brought this up at my new patient appointment... by the time I had gotten home from seeing him his office was calling me with an appt time to see my Neurosurgeon..... they didn't have to do that as I have Medicare and don't need referrals, but it is another plus in my book. I see my Neuro on Feb. 13th at 945am. I'm scared. I am keeping things in perspective tho and just trying to keep a journal of my new symptoms that I can take when I see my surgeon next month. It has been 4 years since the last time I had to have the scarring scraped and removed from everything it had adhered to in my spine.... I'm affraid that this is what he is going to recommend be done, again. Its' part of having Adhesive Arachnoiditis, and is a vicious cycle. More surgery to remove scarring well, simply eventually creates more scarring.... yadda yadda yadda.

Sorry I got so windy but I am trying to get it all down in this one post. I'm sure there is something I have forgotten...... Oh well.

Thanks again to those of you who asked about how it went. I hope all is well for my spiney friends and family today.




  • Wow! I am glad you finally found someone to take your condition as seriously as it need be taken. To me, having my complaints validated seems to take a huge load off; having to trust someone so totally and completely with making me feel better... well... that's a different story.
    But enough about me. I AM SO (so soo sooooo) happy for you, Amy. And getting that first appointment out of the way is a bit liberating too, I'm sure. It's like getting through the first date without broccoli in your teeth (and no one told you!)

    I will be praying for you doubly hard the next few weeks until I find out how things go with the new Neuro on the 13th.

    Thanks for posting Amy. I was getting worried......

  • So glad for you, having a PCP you trust is a big relief.
    I am sorry for your new pain, I hope you get good news from you surgeon when you have the appointment.
    Take care,
  • I am so glad things worked out with your new doctor. I couldn't have predicted a better outcome myself. I am so glad you have him on your side, esp. with the arachnoiditis going on, and please let us know how it goes with Neuro next month. It's good to hear from you again. Take care >:D<
  • and I hope you find the root cause of your concern and can get a treatment plan that is not too traumatic...good luck!
  • So glad you found a great doc!!! Now, on the Effexor - WOW. I took the minimum dose for just a few months, and when getting off of it, ended up sick as a dog in the hospital. Getting off that med is HORRID. Please be very very careful and follow all instructions. Don't ignore any strange symptoms (report to doc) and go very very slowly. I can't believe how hard this drug is to get off of. I am very sensitive to many meds, but there are so many stories online. I hope you have no problems and so glad your doctor noticed this and is concerned. How did you come to be on twice the max dose? Did a previous doc knowingly prescribe this?? Maybe not the sharpest crayon? So glad you have a new doc!!!!!

    Good luck!!

  • LOL! Gggggoood mmmmmmorning aalll (sorry, my teeth are chattering!!) It's all of bloody 8 degrees out this morning and I could have told you that BEFORE I knew how cold it was out when I woke up feeling abit like..... oh, like my back is made of rusty metal!! Gotta love Kansas in the winter.... NOT!

    Anyway, thanks for the kind words from everyone. Indeed I feel like this is a huge victory for me and am so much more relaxed and relieved just knowing I have the kind of care I do now. I haven't had to call him once since seeing him last week, and get this.... I got a call yesterday from his nurse just seeing how I was doing!!! (HUH?? WHAT??!!) Just reiterating my feeling that ALL things happen for a reason, even if it isn't obvious or easy at the time. I think we go thru the bad stuff and it makes it easier to embrace and identify the truly good stuff, does that make any sense?

    Cheri, I was wondering about the reality of trying to come down on the Effexor XR as I have gone thru withdrawls from forgetting to get it refilled over a weekend or something and it is awful!! TMI time: Diarrhea, nausea, feeling completely out of it and very very moody and withdrawn. It's a nasty, nasty feeling and far worse than any withdrawls I have gone thru throughout the past 13 years from pain medication problems. It was the doctor before this last jerk that always just increased the dose every time I would tell him that I was still feeling depressed. I NOW know that it was because I was struggling with undiagnosed Bipolar Disorder and now take Seroquel ( the ONE good thing this last doc from hell did for me, and I am greatful for this). But even this last doctor never questioned it and just refilled it over and over. AND if you all remember, this is what was causing my urine drug screens to come up positive for PCP... I thought maybe it should have rung some bells for him then, now that I think about it.

    Cheri, can you tell me what kind of issues coming off of the Effexor XR caused you.... I noticed you said you had to be hospitalized??? How scary for you!! Any other insight here would be appreciated.

    So, there ya go. The update for today. I have a sick kiddo home with me again today (my little 6 year old guy). Night before last he was the amazing vomit-tron and was up and down until 4am throwing up. I went thru all of his clean sheets and had to change his jammies 4 times, bless his little heart. He is not barfing anymore (amen) but still has a fever and just has that look in his eyes he gets when not feeling well. I hope tomorrow he'll beable to head back to Cootie Central... I mean School.

    I hope this finds you all warm, comfortable and feeling good this morning. I woke up thinking of you all.

    Hugs as always,

    Amy ;)
  • Amy,
    I'm glad to read that you found a new doctor, one you are comfortable with and it seems from appearances already that he truly cares about his patients, given his nurses' followups. That is terrific!
    As far as the arach stuff goes, I know that you must be worried. I was too, when I was diagnosed with it, and did some research on it myself. I have to ask why your neuro would want to scrape/cut it off? That only makes things worse, although I do have to admit that mine did some cutting and scraping and removing of as much of it as he could during my last surgery. He said that there was tons of it wrapped around the nerves, nerve roots, and everywhere........even worked it's way out of just the surgical beds, and into areas above and below.
    Anyway, I just wanted to wish you the best with your new appt, and to let you know that even though I don't post that often, I do read to see how people are doing.
    Take it easy.
  • Hi Amy,

    I'm glad you're happy with your new doctor.

    I have a sick six year old this week also. I think it's a cold that's been triggering her Asthma and we've been having to do round the clock breathing treatments. She would have had the last two days off anyway due to ice. We're in the Dallas area. My DD has had the vomiting bug before and it isn't fun to put it mildly.

    Anyway, just wanted to let you know I'm glad you're happy with the new doctor. Good luck with the Neurosurgeon on 2/13. I hope our kids get well soon.

  • I'm glad to hear that you are so happy with your new doctor. He sounds very compassionate and very thorough. I'm glad he didn't give a rat's behind about the other doctor and his assessment since he was wrong 99% of the time it sounded like. I hope you finally find the relief you need.
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