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I had the BEST compliment today from PM doc

Neck of Steel CindyNNeck of Steel Cindy Posts: 1,064
edited 06/11/2012 - 9:01 AM in Pain Management
I had a followup with my pain management doctor today. I have been under his care for about 4 years now and we have formed a good relationship. I think he knows me fairly well, how to read my pain levels, my mental state, when we need to try something else, etc.

A week ago I had an RFA C2-3-4, so today was followup, and he also did some trigger points on the other side.

He proceeded to do a particularly painful series of injections in the base of my skull, so that the steroid would form a line and give me the best relief on that upper level where he couldn't do the RFA. That thing hurt like **()@. I mumbled an expletive as he was doing that area, because I did not expect it to be that bad. Afterwards he told me that "this hurts bad", but he went ahead and did it on me because he knows that "I am Tough."
What a compliment!

I've had some small concerns over the effects my medications are having on me, and we discussed those concerns. He explained and reassured me that all was well physically with me. Also, we discussed the fact that it takes me 4 months to go through my bottle of percocet, which I only take when I just can't stand it anymore, or when I want to go out somewhere and enjoy it. I routinely take tramadol, and it does help somewhat, but the perc definitely does a better job. My wonderful doctor said to me: "Cindy I know you will never become addicted to what I am giving you." My response was "why do you say that?" He said because I take the meds the way they are meant to be taken, and even though he prescribes it to me as 120 percocets to be taken 1 @ 4 x day if needed, I responsibly take it as a breakthrough and only when I absolutely have to. He has complete trust in me with my medications. He asks me what I need, treats me with respect, listens to me, and tries to find the best remedies for ME, not for what will make him the most money. In fact, I'll share another instance.

I was trying to have an SCS approved. We discussed this at my monthly visits for over a year before I finally decided I was ready for the trial. Then it took 7 (yes seven) months for my insurance to approve it. During that 7 months, my PM doctor had done some more training on pain pumps, (which he was vehemently against previously) and given my situation that most of my pain is nerve related, and that it is over multiple limbs, Dr. H started having reservations about doing the SCS, as it would only help my neck and one arm. When he offered the SCS, it was the best thing he believed in that may help, but he never thought it was the gold key to my pain relief. The month that my insurance approved my SCS, I was so happy, I had hope that relief was in sight. But Dr. H backed out of it, stating that he now felt that I should use a pain pump with a medication to target the nerves, because it would help all of me, not just part. I was devastated, and a little bit angry, because he just ruined the hopes that I had of relief. At my next visit with him, we discussed the SCS again. He told me that he had given my case a lot of thought. He explained to me that he could make A LOT of money if he went ahead with the SCS. He himself does not do the pain pump, so he didn't stand to earn anything on that. But because he wanted to do what was best for me, he only felt it right to rescind his suggestion of an SCS. It was the right thing to do for the patient, but the wrong thing to do for his finances.

Now that is a good doctor!

Just wanted to share that there are some great pain management doctors out there who truly do have your best interest at heart. If you move to Idaho, I'll give you a referral!
Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!


  • I see that we both has something in common. We both have a great pain Dr. But I did go with SCS unit and in a way I am glad I did. But pain pump sould like it might been better. Which ever way you go I hope you get relief you need.

  • dilaurodilauro ConnecticutPosts: 9,877
    It serves to prove how many outstanding and caring doctors are out there.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Hmmm. Well in my opinion if insurance aproved it finaly i myself would of pushed to have the trial so it would be my decision on geting it implanted or not,

    Especialy me knowing how easy the trial is and its simply 5 days out of your life for the trial and if you did not feel its worth it then at least you know you ruled it out yourself,

    If he recomended it at 1 time and now he dont recomend it would lead me to think he is not sure,

    And i would assume if you asked a few other drs they would probably recomend a trial at least to rule it out,

    I know they can target more then 1 area of the spine with leads and if by some chance you were to have even 50% or 70% pain releif you would probably be all over it wanting it,

    I could be wrong but thats how i realy see it, I just had this scs put in yesterday and its prety painfull but if i can get maybe 10 years out of it or more and it stops helping i would tell them pull it toss it and then go ahead with the pain pump,

    By then i would be 60 or 70 years old and if i get another 20 years out of a pain pump then i know i covered all basis to get every bit of pain control out of what out there,

    Scs trial is less painfull then some of the injections we go through and seriously i would hate to see you look back and later say maybe i should have just done the trial,

    You deserve pain releif as everyone else and without knowing for sure if the scs would of helped or not i dont feel they are doing you justice,

    Your surgery failed just as many of us here and no stone should go unturned once we reached this point, And as i said a 5 day scs trial is a small price to pay after how long you been dealing with this,

    So i respectfuly disagree with your dr,s decision taking a short cut and not having to proove to you it dont help,

    Best of luck.
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Unfortunately my insurance (workers comp) backed out of the authorization when the doctor changed his recommendation. They sent me to 2 other doctors who both agreed that it would not provide enough benefit and would be almost impossible and very risky to put in because of the amount of scar tissue I have. Dr. H was concerned about the scarring and hardware too, but he felt it was worth a try to do the trial. When WC got those recommendations, they pulled their authorization. And they won't authorize the pain pump either. So I'm back to just utilizing injections, meds, tens, etc. I have a complication in that I have a tethered cord in my neck and am facing a big surgery for that down the road. The doctor who does that does not want me to have the SCS either. So at this point, I stopped pushing for it. As for the pain pump, I ran from that idea because the idea was to use Prialt in it for the nerve pain. I saw the doctor who would do it and was not comfortable with him at all. His trial period was only one day. How can anyone really tell the benefits in one day? Unfortunately he is the only one around here who will use Prialt. It has to be managed closely, so getting an out of state doctor would be risky.

    So for now, I'll stick with Dr. H for the pain relief he does give me. I trust him completely. I had RF back in June and got a good 4-5 months relief from it on the one side of my neck. That relief was enough to help me deal with the other pain areas better. So I'm hopeful that this one will be just as good. So far, things are looking good with it.

    Thanks for your comments though. I am going go watch how you are doing with your SCS.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • As Ron stated, it's wonderful to hear that there are great Drs. out there..

    I absolutely adore mine and we have actually become friends outside of our appts. We have gone for coffee or lunch and I've met his wife and kids...

    It sounds like since you are doing ok with the Tramadol and Percocets when needed, that you are way off from needing a pain pump. So I can see why insurance wouldn't approve that as it's usually the last resort when patients have tried almost every medication and the heavy duty long acting ones.

    Does he have you on nerve pain medication in addition to the other meds?

    Glad you do well with the injections...

    As you know, it's all about using every modality we can stacked together to help manage our pain.

    Hopefully this will thread can encourage others that yes, there are many Drs out there that are concerned about our best interest and not money.

    My Dr. has been so great with my finances...that now that our state requires a yearly urine test that is sent out to one of the most sophisticated labs....that because I can't afford the test....he has an agreement with them to write off the $1100....So I pay nothing! As well as I only have to see him every 3 months now that I've been going there so long...and he cuts the price so I pay only $75 for that visit.

    And the last part is he is providing free acupuncture to me as many times per week that I want to come in!!!

    We are definitely blessed to have one of the good ones:)
  • It does sound as if you have a wonderful doctor too. As for the pain pump, there are days that I do nothing but lay in bed. The tram and percs do not begin to touch my nerve pain, and although I take neurontin and cymbalta for that, I just can't find relief. The tramadol and percocet greatly help the myofacial pain and aches in my neck, stabbing in my shoulderblade, headaches, etc. and for that I am very grateful. The purpose of the pump was to gain some help with the nerve pain on the entire right side of my body, which comes from an incomplete spinal cord injury. They wanted to use Prialt in it, which when researched seems to be a good idea, but I heard from some patients who scared me off. I am not keen on having a pain pump at 46 anyway, because that just opens up the door to more and more medications. If I allowed myself, I would take the percs every day, 3-4 times per day, and I would admittedly function better. But if I do that now, what will I be taking in 2-3 or even 5 years.

    So I made the decision to survive taking the bare minimum, which does not afford a great quality of life, but at least I am alive. When I go out or have something planned to do with the family, I will take the percocet to help me deal with the pain while I am away from home. Otherwise, I spend much time in the hot tub, bath tub, bed, using my tens unit, or doing whatever mental therapy I can to deal.

    I hope that explains the reasoning for a pain pump. At this time I am not ready for it even if the insurance had approved it.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I applaud you for being so respectful of your body by only taking the pain meds when necessary. Not many people have the strength to do that.
  • So happy to hear you chose not to have the pump implant with Prialt in it. As much as I love my pain pump I would never allow anyone to put Prialt in it!!
    Actually I told my pump Doctor what I wanted in mine and I am very happy with my choice. The only time I have to take any oral pain meds now is when I am having a flare up.

    Best to you.
    Patsy W
  • I think it's always a good feeling having our Dr(s) validation when it comes to both the treatments & our reactions (or how we respond)to them. My Dr. is wonderful too and we have a very good relationship. He thought the SCS would be great for me and at first I was against it, but through further research I decided that I would like to do the trial. Unfortunately, my insurance won't pay for it so it's on the back burner.

    The first time my PM Dr. hugged me and told me that I was like part of the family it made me feel very good.. and I do take pride in knowing that he trusts and respects me.
  • Hi Cindy,
    It's been a long time.... I read the boards once in awhile and happy to find you on and still trucking on.

    I didn't know u started to take the percocets, but we had those discussions a few years back that it is not so bad for you if you control it and not let it control you. I also had the same fears about the longer i take perc the more and more i will need. This is not true 4 me and i hope that you will be like me when it comes to interacting with the percs. I have been taking the same 5mgs of perc twice a day for the past 4.5 years and get excellent pain relief along with my lyrica and cymbalta. So don't worry about it at all. My pain doc says that many people can take the same amt. for years w/o an increased need.

    Besides that, hope all is well with your family and i am glad you r still researching and finding ways to live with your pain. I have my ups and downs but manage with it all. There is much worse then being a neckie!!!(i keep telling myself)

  • I read through this whole thread. Your post about the days when you lay low rather than the option is, in my humble opinion, healthy on many levels. Your commitment to being in your body and making well thought through choices about your options is what I strive for as well. I am not perfect but having a goals and knowing I have options gives me a sense of freedom. It takes a lot of work to be a pain patient.
    I am fortunate to have a great Pain Specialist as well. The Pain Psychologist who is affiliated with my Pain Clinic is out on Medical leave. During this time my Doctor is allowing a few minutes of my visits with him to focus on accomplishments and the emotional, mental and spiritual aspects of living with severe Chronic Pain.
    Thanks for sharing this with us!

  • Would it have not been better to do the SCS trial and rule it out that way. What if the the SCS was your gold key and its been dismissed? The beauty of the SCS is you get to try it before you buy it.
  • My insurance would not even approve the trial after the doc changed his mind. And I don't have that kind of money floating around, so it is off the table. But you are right, it would have been nice to do the trial to see how much relief I could get.

    If they would have upheld their original approval, I would have gone with doing the trial. And who knows, there may come a time when I push for it again. Thanks for asking. It was a good question/statement.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Well thought out choices--I flubbed that one yesterday, and will pay for it for a couple of days!

    I am glad your doctor is a good listener. That shows he cares. Let me know if I can help you in any way.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I have been away from Spine-health for a few months. I feel it when I am not in the company of my fellow spineys.
    I am going through a rough family situation and would appreciate you sending good thoughts my way.
    Hope your flare is subsiding, and if it isn't that you are able to rest.
    I used a Chi Machine for about 2 minutes in March, and had a 3 week long flare. I was lying on my bed to use it, and felt right away that it was moving my thoracic area. That sums up my not being perfect pretty well. If I am going to have that kind of flare I would rather it be from playing golf.
  • I will say a prayer on your behalf. I hope whatever is going on will resolve soon.

    What is a chi machine?
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Good morning Cindy, I really appreciate prayer at this time. The situation will pass eventually. It helps to open up and say something.
    Please google Chi Machine if this description leaves you wondering what it is. The machine is designed to increase energy flow through the body. It is about 2'x1' in size, about 1' tall. The machine goes on the floor and has slots to place ankles in. When the machine is turned on the slots move in a circular motion. It is my understanding that it was designed by an eastern medical doctor whose goal with the Chi Machine is to have the body move in a similar way that a fish moves through water. The main thing I got from using this is that I am not a fish...
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