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Need opinions please (Warning: longest post ever!)

DedalusDDedalus Posts: 92
edited 06/11/2012 - 8:38 AM in Pain Management
This post is very very long, so I apologize in advance. But I would really like some feedback if you can make it through.

I am quickly coming to the point where I need to “confront” (that word is a little strong) my physiatrist about my pain management, and I’d like some feedback from the community. But I think I need to give my history first to help you all understand where I am coming from.

21 years ago I was found to have a bilateral pars defect with very minor spondy. I was a wrestler and VERY fit. After a lot of PT the pain went away and I was able to wrestle for 2 more years before the pain started again. Once I stopped wrestling, I was ok with only minor, sporadic pain for the next 16 years.

Three years ago, I started having pain in my back and butt. Shortly thereafter I found a lump near my rectum. After 8 months of being told no one could find anything, a colo-rectal surgeon found a rectal fistula and related abscess (that was the lump). In Jan of 07, I had a rectal fistulotomy- a minor surgery that was extremely painful. At that time I took Percocets for 2 months of recovery. But by March of 07, I was hurting again. I went back to the colo-rectal surgeon many times to no avail, but my butt hurt SO badly. Finally I was told nothing was wrong and to not come back in Jan of 09. I was crushed and since they said the pain was in my mind, I started seeing a psychologist. All this time I never thought it was my spine… it never crossed my mind… I thought the pain was from the rectal surgery.

In March of this year, the pain changed. It intensified and began radiating down my right leg to my foot, my left leg to the knee and up to my beltline. My psychologist referred me to a PM doc. The PM doc would not take a referral from a psychologist and wouldn’t see me. Crushed again, but his nurse had called my pain sciatica. Sciatica? OMG… this is from my old spine problems I realized. My GP ordered an MRI and sure enough. The breaks in the bone (L5 pars) never healed. I was referred to a neurosurgeon. But after xrays (flexion and extension) showed my spine to be stable, the NS wouldn’t see me and sent me to a physiatrist in his practice.

The physiatrist tried me on various NSAIDs, prescribed a brace that was useless and a course of PT. The PT helped a bit, but that was it. He finally gave me Tramadol and I am one of those lucky people who get decent relief from Tramadol… but if I take it past 3pm, I cannot sleep that night. I had no pain control at night and as a result I was missing about a week’s worth of work every month. When I asked the physiatrist for night time meds and to sign a form for intermittent UNPAID FMLA job protection he fired me. Crushed again. And to add insult to injury, he referred me to the PM who had refused to see me 3 months earlier. I didn’t know what to do!

I decided I’d had enough with these specialists and went to my GP. He saved me. He signed my FMLA form, continued my Tramadol and gave me 30 vicodin. I started walking 2-5 miles a night and eating better and lost 40 lbs! I was determined to beat this pain myself if I could.

I couldn’t beat the pain myself and went to another physiatrist for ESIs last month. We tried 2 ESIs and they failed. He also started me on Amitriptyline for my nights since I still wasn’t sleeping well regularly.

Finally we are to the present. This week I went back to my current physiatrist. I broke down and cried in his office as I told him how this pain is tearing my life apart. He started me on Gabapentin and told me he couldn’t do anything else and I needed to go back to a surgeon about a fusion. He ordered a new MRI to be done tonight and we are meeting next Wednesday to go over the MRI.

This brings me to my current issue. I don’t want stronger meds, but I also don’t want surgery. But if I have to choose between meds and surgery, it seems to me that meds should be tried first. I mean, I have never had anything stronger than Vicodin and Tramadol for this pain. I feel like these docs are cheating me out of options because of their fear of narcotics. Well, I am afraid of them too, but I am more afraid of surgery. Surgery is irreversible. You can’t go back. Why would we go the surgical route before trying narcotics if I don’t NEED surgery to keep more damage from occurring? This is what I am considering “confronting” my doctor about.

So if you have made it this far into my story (Thank you!!!), here is what I want. I want to tell him that I need a plan, not a hodge-podge patchwork of pills. Since I don’t feel he is interested in coming up with a plan, I have one to propose. Here it is.

Current meds:
90 Tramadol (3 per day) - I'm taking 4 most days now and cheating myself on weekends.
30 Gabapentin (1 per night)
30 Amitriptyline (1 per night)
30 Vicodin 5/500 (1 per night) - 2 on a lot of work nights and cheating myself on weekends.

Proposed meds:
120 Tramadol (4 per day)
60 Gabapentin (1 at night, 1 at lunch)
No Amitriptyline- makes me too groggy in the mornings
45 Percocets 5/325 (1 per night, 15 others available for breakthrough pain for the month)

Is this reasonable? Oh, and I am more than willing to take pee tests, sign a contract and come in for pill counts. I drive by his office everyday on my way to work. I am just scared that this doc will fire me if I push. I mean he hasn’t even taken over the Tramadol and Vicodin scrips from my GP… and really me GP shouldn’t have to do this forever.

Please give me feedback. What should I do at this point? I don’t want surgery and I feel I am getting pushed that way because docs are scared of any narcotics stronger than Vicodin. Shouldn’t all options be tried before surgery? Aren’t I asking for pretty small amounts of meds? What would you do? And thanks for reading the whole story… I am sorry it was soooo long, but I needed to tell it. Thanks.


  • Usually a better approach to any doc, is to take a review with you of what has been tried, what has worked, was has not worked and ask if the doc will help develop a new plan of attack.

    One thing to keep in mind, is that by telling a doc you are totally against surgery, you tie their hands. When you go to a mechanic with your car not functioning correctly, you don't go in saying "don't replace anything, just lube it up and change the oil". You have to give the mechanic and the doc the opportunity to present to you their findings and their "suggestions". They are after all, only suggestions since you ultimately have the final say.

    The doc is the one who can tell you whether or not you risk or have permanent nerve damage. If you go into an appointment with your mind made up and course of action already predetermined, the doc is going to close down on you and become defensive and unwilling to try as hard to help you. Docs love patients that work with them, not forcing them to accept your proposal.

    Yes we are the ones who know our bodies the best, however we need their help in order to function on an even keel.

    I'm sorry that you have been through so much and have run into road blocks at every turn in the road. let this doc run the tests, get the data and if you are still not comfortable with the proposed plan of action, then get yet another opinion from another doc.

    Best of luck to you.

  • We met in chat. I read ALL of your post and survived lol. First, I wouldn't jump the gun yet on whether or not you need surgery. Wait and see what your MRI reveals. I will tell you though, that if you have spondylolisthesis (slippage of a vertebarae over another) which is common for pars defect, the best option to stop the nerve compression and stablize your spine is fusion. Nerve compression can lead to damage that can become permanent. Many here have had successful L5/S1 fusions. If there is a way to alleviate your pain with surgery, most physicians prefer not to start you on narcotics as an alternative.

    Let us know how your appointment to review your MRI goes. I hope there are other options for you.

    Best to you,

  • Thanks hagland. Thanks for taking the time to read my BOOK. It was cathartic writing it. lol.

    I can completely see where you are coming from. I think I might have led you astray by using the word "confront." I probably should have said that I'm preparing to be more assertive. I am normally pretty passive when I go in.

    Also, I am absolutely willing to go through any tests they want me to. And you are right, I am assuming that no nerve damage is being done, but that is because that is what every doctor has told me so far. But I am going to get another MRI tonight, and I want to be prepared if it comes back the same as it did 7 months ago. If no damage is being done, and I am still being pushed towards surgery before trying pain management with stronger meds, I want to be prepared and have a plan. And I'd really like to have a plan other than starting from scratch with a new doctor before asking for all options from this doctor. It has been really hard for me to open up about my trouble and I dread starting all over again with another doc... I really want to try hard with this doc first.

    EDIT: Thanks to you too Marianne. I didn't see your post until after my follow-up. =)
  • I completely understand not wanting to start all over again from scratch. Sometimes you have to do that when what you know as a norm is proven to be insufficient.

    I think I understood where you are coming from and that you weren't going to try and bully the doc into doing what you want "or else". What I was trying to get across is, that many docs have terrible social skills and when faced with a patient that shows any ounce of assertiveness, they get very defensive really quick and almost shut down. I hope your doc is not that type, but there are many that are. Sometimes we have to handle our docs with kid gloves.

    I hope that your new MRI shows what could be causing the issues. Remember that the best docs for reading MRI's are not the GP's or physiatrists, but are the surgeons. So if your doc recommends seeing the surgeon, don't take that as an automatic "you must have surgery". In actuality it is the best way to get your MRI read by the best doc for the job. The surgeon can best tell you whether you risk permanent nerve damage or as Marianne eluded to whether or not you have an instability issue that needs to be addressed.

    Good luck and keep us posted.

  • you need a refrral to see a PM specialist? Because of insurance? Im so sorry for your pain. My best advice I can give you is to go see a Pain Management Dr at a big hospital with several Dr's in the practice, where they do all the surgeries, like epi's and interventional stuff, themselves. I , at first went with my GP then to a One trick Pain managemnet guy for a while and it just wasnt "complete" I finally went to one of the leading hospitals in phila to their pain clinic and I am so happy I did. They do everything there, they are very professional, they are NOT afraid to prescribe the correct meds and there is always a dr on call for emergencies. I wish you luck
    Also, doesnt having an awesome spouse make the whole world better? I have a great husband who is so supportive. ( sorry my spelling is terrible today)
  • I can understand how you feel about getting the run around. Hopefully this MRI will clear things up and help the doctors decide how to treat you.

    When it comes to back pain with sciatica, it take a combination of meds to deal with the pain. You're on the good track with Vicodin, Flexeril, and Neurontin. Personally I can't stand Flexeril but everyone is different of course. Elavil never did much for me except knock me out during the day.

    Percocet is much stronger than Vicodin and I don't think they will bump you to that right away since you are still on a low dose of Vicodin. They could increase it to 10/325mg and have you take it every 4,6, or 8 hours. I used to take 6 pills a day, which is the maximum allowed because of the Tylenol content. You still have room to work with on Vicodin since you only take 1 5/500mg a day.

    When you go see a specialist, it is best to keep an open mind like Haglandc mentioned. Doctors will usually try conservative treatment like meds, PT, and epidural injections first before discussing surgery in certain cases. Some have a such a severe condition that surgery is needed right away because of the risk of nerve damage or paralysis for example.

    So the first stop is an MRI and then you and your doctor can take it from there. If you feel you're not getting adequate relief from the meds or if the side effects are intolerable, let your doctor know and I'm sure he'll be willing to work with you. Asking for a specific medicine is a big no-no.

    Well, I hope things work out for you. Take care
  • Thanks for all the support everyone. Hopefully this MRI will show them more than the first MRI a few months ago. Who knows?

    Meydey, thanks for the info on the different dosages of Vicodin... well, hydrocodone. I did not know that 10/325 existed. You are definitely right... that would be the next step and I think I will ask for it soon. So scratch the Percocet from the plan and replace it with 45x 10/325 Norco (is that right?) a month.

    I also like the idea of a large PM practice. Time to do some research. Oh, and the reason for a referral... the PMs I have been in touch with (only 2-3) will not take anyone without a referral. I guess it is to weed out drug seekers. *shrug*

    And YES, a supportive spouse is truly a blessing. Without hmy wife and the kids, I don't know if I would be able go on.

    You guys are teaching me so much. Thank you!!! All comments are welcome and appreciated!
  • Hi :) I too read your post and actually wish more people would post as much info as you did - saves us going back & forth with a ton of ?'s ;)

    I 1000% agree with hag.

    MOST ( of course not all )Drs do not like to be told even if said in a suggestive way what to do for you.

    You can go in with the list of what is not working and ask what he/she thinks would be the best next move.

    I too "was" doing all I could to ovoid surgery and again Hag is right - you can't say that out right or a Dr often feels put in a corner.

    Instead I have said things like "I really want to try some other options first before surgery". I would also say things about my pain meds like "i was wondering what you thought of this med and stuff like that to my Dr.

    However like someone else did say to you L5-S1 is usually very successful. That is all I needed when my injury happened. I fought it tooth and nail.

    However now I am not able to find a Dr to operate on me as the damage is so extensive at this point.

    Surgery is of course a very personal choice - but you may want to research this again and see what options are there for you.

    However BACK to your ?'s.

    You know that old saying about getting more with honey - well almost the same thing here when talking to a Dr.
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • agree with you. After all you may have surgery and end up on pain meds anyway. I do agree that every possible conservative treatment should be tried before opting for surgery. Surgery holds no gurantees that your pain will be relieved and I know people that have had worse pain after fusion surgery. If you are not able to come to an agreement with your current PM is there anyway that your GP would refer you to another PM? Do not let anyone force you into a surgery that you are not comfortable with. I hope that all goes well at your next appt and please keep us posted.
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