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No stimulation in feet

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  • I'm not sure why the arachnoiditis was on the NS' notes. I think he just wrote them up too quickly and meant to say that I should have a myleogram to see IF I have arachnoiditis. I don't know how he could make that diagnosis without a scan. Who knows?
  • Glad to hear they approved your second trial hope it works! Go ahead and cry, sometimes it helps, your head will be down in that stupid pillow anyway, no one will know!

    From the little bit of fact gathering I have done.
    Standard SSRI's can hinder treatment for Bipolar type II and make depression worse. I think the Lamictal is working fairly well, I am of the opinion the dose may not be high enough, the PM I don't like said it is not high enough, so tomorrow morning I will find out what my shrink thinks!

    From what I read Lamictal can help the pain as well as Bipolar type II, but it usually takes 150mg a day +- I'm taking 75, so maybe...
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  • Tuesday, Dec. 8 at 1PM I am having a second trial. I guess my insurance company okayed it. The lead will be lower. I read somewhere that at L1, there is a 100% chance of getting the feet. I called my secondary ANS rep (the primary just had a beautiful bouncing baby boy.) He didn't know anything about it and he is booked solid that day so he's scrambling to find someone. I also saw my other pain doc. I told her my psychiatrist REALLY wants me to try Savella. The pain doc said she had been wanting to try it on someone but with it being so new she didn't want to make one of her patients be a guinna pig. "I'll be a guina pig", I told her. Wrambler, this is a nerve pain drug (well, its actually for fibromyalgia) that is very similar to Cymbalta or Effexor in so far as it is a SNRI. I don't know how it works for bipolar but I would be killing two birds with one stone (pain and depresson). I stopped at the interventional PM doc's office where I found a copy of a letter written to me by the eely NS. Once again he said I had arachnoiditis and recommended against a CT scan. (He did hedge that with an opposite recommendation but I'm just going to let him fix the car and not worry about his apparent inability to drive it, as Bionic said. He is a very good spine mechanic.) The pain doc who gave me the Savella agreed with my decision to have a second SCS trial especially since I am unable to tolerate almost every drug out there. So, take pity on me for the hours of torture I must endure to get that lead through my scar tissue. Then be excited for me as I might be able to deal with the foot pain. I'm going to try to be a big girl and not cry this time. Susan
  • Okay. So I cleared my schedule for Tuesday. That entailed cancelling two business appointments and adding a new one (with the big, big boss that would be on my way to the hospital.) Tuesday is my husband's day off which is good because he is a mailman and no mailman (letter carrier) can "take off" in December. The P.O is hidiously busy and my beloved husband is hidiously grumpy (as in tired.) I had instructions to get some lab work done. This I did on Thursday. Today, I took a well deserved day off. At least, that was the plan. My primary's office kept calling saying I had to come in for a pre-op exam. "No, no, no", I ust needed some labs which have been done." They called again, Dr. J says you must come in for a pre-op. I explained I was just having a "procedure". Later in the day, I got at call from the neurosurgeon's office. they were scheduling the implantation of the paddle leads (in spite of my brand spanking new where did it come from diagnosis of arachnoiditis. A-h-h-h, now it makes sense. I called my primary's office explained what was going on and scheduled an appointment for Thursday morning at 8:30 for a pre-op exam. Then I called the ANS rep who told me he couldn't make the Tues at 1pm trial...that the department has told him they haven't been able to reach me. "That's odd," I replied. "They have all three of my phone numbers plus I've told them to always leave messages at my office where I always check in for messages. I haven't heard anything." I told him I would call the department. I did. Rather than pressing the button that would send me to the recorded message, I pressed 1 for a doctor or a doctor's representative. The person who answered the phone was the person trying to reschedule my appointment. I greeted her and announced who was calling. She scolded me at length for pressing the #1 key and sent me off to the recorded message line. I hung up and told the ANS rep what happened. So he said he would send another rep to the trial on Tues. at 1pm. Friday night, I volunteered to drive down the road and pick up perch and bluegill fish fries (this is ritual Friday night fare in Wisconsin). In my car I saw I had left my cell phone. On it were 4 frantic messages. 1. I must have my labs done at the hospital one and a half hours away from my house--NOT at my primary's clinic as planned (and has already been accomplished as per original instructions.) The last was they were changing the date and time of the trial because the ANS couldn't make Tues. at 1 so they were pushing me to Wednesday at 9AM.
    Now, it is Friday at 6pm. I cannot believe they would change my appointment without talking to me. I was able to get the doc on the phone. She agreed they shouldn't have changed the appointment without talking to me. The 1 PM on Tuesday has been booked and is no longer available. Do I want her to change all of her Tuesday appointments? My good girl guilt doesn't respond, "You betcha". (This doctor is really, really nice.) My husband will have a very hard time getting off of work on Wed. There are all of those appointments (December is an extremely busy month for me)I rearranged. Plus, how could I go for a pre-op physical the day after a stim trial? Can the ANS now change his plans again? And remember, the actual implantation is scheduled for the following Wednesday. If the trial is on Wed., how long will I be able to keep the unit.
    This is such a big mess and was handled so poorly, I am really stressing and my pain levels are skyrocketing. These ladies had my other phone numbers. Why didn't H just talk to me when I called rather than insisting I leave a message for her to call me back?
    I called the rep knowing full well that he won't call me back b/4 Monday. So, I have no idea what is happening. According to the doctor, it was all about the rep. He is not the customer. He does not pay the bills. I don't even like this guy. I was perfectly happy with the substitute (who himself has two stims implanted).
    If I do this this year, its "free". If I wait unil 2010, it will cost $4000. I have a headache. My pain is flaring and I'm awake at 3AM. (So is Bionic Woman, I see).
    Okay, I'm done. Poor, mistreated, misunderstood baby. Susan
    I just reread this post. How many think I should tell the doc to give me back my 1PM on Tuesday however inconvenient it may be for her OR should I suck up all the inconvenience on my end? She offered to stay late on Tuesday but I told her I didn't want her doing this when she was tired.












  • If it were me, I would request the 1PM on Tuesday. I definitely would not wait until 2010 and have to pay $4,000. I've had a trial before and it does not take that long. I'm scheduled next Wednesday for a second trial, myself, and would not be very happy if this happened to me. Good luck.
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  • I wholeheartedly agree. They don't have to reschedule ALL THE TUESDAY APPOINTMENTS. They just have to reschedule the 1PM appointment. Whoever got that appointment just got it on Friday and they can certainly bump that person to Wed. at 9AM. THEY DID IT TO ME!
  • They won't give me back my Tuesday appointment. Their justification is that they left me messages on Friday. Now, the dominoes fall. I was supposed to have a pre-op appontment with my primary on Thursday and the permanent implant next week Wednesday. Next year, I have different insurance. I don't know if they will approve a second stimulator. I've been so stressed, my pain has been flaring. I turned my existing stim up high which causes a lot of vibration in my stomach and abdomen and, once again, left my remote at home. So, I guess, I'll be heading home. I called the surgeon to see if he could do a trial just prior to implant (like Cheri's neuro did). I called my regular PM to see what she thinks about this whole situation given my new diagnosis of arachnoiditis and the interventional PM telling me AGAIN how difficult it wil be to thread a second lead into my epidural space. That was 3 hours ago. Noone has returned my calls. I'm stressed.
  • All I can say is that I have never had a relationship with a PM or their office that was worth a ****, they all seem to have learned all to well how to tune out that fact that their patients really are in pain and are also trying to live a life!

  • This really sucks! I don't know the answers to this but I would definitely fire the whole lot of them and get a new team just as soon as you get through this mess. They have all shown you exactly who they really are.
  • Too Late! They have all fired me! The neurosurgeon; the interventional PM and the PM. Go figure.
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