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Need Some Advice

bjfergebbjferge Posts: 123
edited 06/11/2012 - 8:37 AM in Pain Management
Hi All,
I'm in need of some advice. A few months ago I asked about which dr should I see for my condition, and I decided to go with a physiatrist, over a neuro or a ns. I feel this was the best choice for me, and still do. I recieved some great advice this.
Just to give some background, as to my condition. I had Posterial 360* Laminectomy, and removal of the foramen bone, with a bilevel spinal fusion of the L4-S1 2 yrs ago. Since this surgery, I have progressivly gotten worse with my condition. I have, since surgery, had the following problems. I have leg numbness, in both legs, nerve pain leading from my backside down the side and back of my leg to my out side toes in both feet, and I'm also suffering from leg weakness, which is causing my legs to give out on me on occassion. I currently take 1-2 5/325mg of percocets every 6hr as needed, and 1200mg 3 times a day of neurotin. These med are just not helping like they uses to. So I need to do something for this condition.
I know I don't realy want anymore surgery, unless they can garrentee better results. I also don't want steriod injection do to some of my other health issues, and family health history. My mind is not closed to scs, or a pain pump, but after reading about, and chatting with others, who have had them, I'm not sure if that's a route for me. But if 1 of them would help, who knows, I might do it. The jury still out there, and it hasn't been suggested by my dr yet.
So here's my questions! What kind of treatment is avalaible to me? What kind of meds would be a good way to go? What would help? I know the numbness will probably never go away, but I would just love to get the pain under control. So the quality of my life can in prove. I don't want to run a marathon. I just want some more independence.
Thanks for taking the time to read this. All answers are appreciated. I look forward to hearing from my fellow spineys.
Bobbi Jo


  • I just started taking Neurontin a couple of weeks ago myself. My pcp prescribes my meds, as my pm doesn't want to. When I told the pm that I had started taking Neurontin, he said he would have rathered me taking Lyrica or Cymbalta, as he believed they were a little better, but to continue with the neurontin to see how it works. Anyways, that's just what he told me, maybe you could ask your doc about the other two and see what he/she has to say. Hope you're doing well (other than the obvious)!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • You would be better off discussing with your physiatrist your concerns about the medications not working as well for you now as they once did. Since he or she knows your medical history, and what other medications you may have tried, he is the one who can make the best suggestions for you.
    Lyrica is one nerve pain medication that works rather well for nerve pain, but it does have side effects, some of which are weight gain, and a feeling of being in a bubble for a few days. Once that bubble headed feeling goes away, the weight gain seems to be the biggest reason most stop taking it.
  • Your doctor knows both you and your condition and would the best to recommend medications for you.

    Best of luck!
  • Thanks for the ideas! I appreciate it. I agree the physiartist, should know me better, and my med history. But this is the first time seeing this dr, and I don't want to walk in there dumb, and all trusting. I've learned that lesson the hard way.
    I guess what I want to know, is if anyone else suffers with a condition like this, and what their dr is doing to help them?
    Thanks once again for taking the time to answer my questions, and for reading my post.
    Bobbi Jo
  • Hi Bobbi Jo,
    To answer your questions, yes I have similar issues but the problem is that medications that may work for me, may not for you and that is why I suggested discussing your medications and the lack of help with him.
    Any suggestions that I could make would only be based on my experiences with them and they may not effect you in the same manner.
    You probably need some type of anti spasmodic ie muscle relaxant type medication, some type of nerve pain medication and there are so many options out there, including but not limited to the old tricylic anti depressants all the way to neurontin and Lyrica.
    Same thing with the options of pain medications, all of them will effect an individual differently so it's truly difficult for someone on here to recommend one medication over another. What I can tell you that most PM's or physiatrists want to try the old standard pain medications first, usually short acting ones, which simply means that they usually are dosed at 4-6 or 6-8 hours to see if a particular medication will work for you, before going on the path to longer term pain medications such as ones that are dosed at 8, 12 or 24 hours.
    I wish you much success in your discussions with your physiatrist.
  • Thanks Sandi for your advise! I most certainly agree, what works for one does not nessaraly work for another. I will be discussing with my physiatrist what we are, and can do for my condition. I agree a muscle relaxer is needed. Along with a better anti inflamitory. I realy don't like taking 1600 mg advil.
    I realy can wait to see himm. I had to call his office today for a few reasons. First to make sure that they got all my records and cds that I mailed them, which they did. The second reason was to see if I could get in earlier. Since I posted this question here, things have changed for me. How or why it happened, I don't know, but like we all know sometimes thing just happen. What happen was my lower lumbar area, and my pelvic area are unable to hold my weight for more than 5 min. I even had to crawl from the bathroom back to my bed. Trust me it wasn't easy! After talking with the PA for my dr, she said I was doing everything right, and could increase my advil intake to 2400mg, but no more. She also agreed an ER would not be much help to me, but go if I have constatnines problems.
    I also switched this from pain meds to pain managment. I'm still looking for suggestions, and ideas on what could help me, and for people who are in simular prediciments as me, and what they are doing?
    Thanks for all your help.
    Bobbi Jo
  • There are sooooooooo many different meds that can help nerve pain. Will they is the question. I was on 3600 mg Neurotin, 50 mg amytripolene, 50 mg Topamax, 25 mg arthotec. This all after trying Lyrica,Cymbalta,meloxicam to name a few. They all seemed to help me for a month or two then NOTHING. My next step was to narcotics. This i did not want to go to. So my PM and me decided to conduct a SCS trial. Within 12 hours i felt so much better. The burning/stabbing pains in my legs and feet were almost totally gone. I was implanted with my permanant SCS on July 8th 2009. My pain has decreased about 75 - 80 % as of now. I still have a little discomfort in my feet but, considering I'm on them for at least 8 hours a day, I'm very happy. I understand that SCS is not for everyone but its an option. With a little more reprograming i feel i'll be just about right. I can actually walk again without much pain. And no more falling asleep everytime i sit down.
  • I certainly understand your dilemma but can't figure out why wouldn't your doctors put you on a long acting painkiller. Seems to me you need something round the clock to better control your pain. I've taken several since I began my life as a spiney like Fentanyl patches, Ms Contin, Oxycontin, and now Methadone. The nerve damage in one leg makes it give out with no warning so I have to use my cane all the time. I've been through 2 surgeries, and the last was a 2 level fusion on L4-S1. I went through the SCS trial long ago but it didn't help me, but I am eligible to have a pain pump implanted because that trial went so much better. I'm just counting the days and looking forward to more better days than bad.

    Anyways, it's like we have to jump through so many hoops to reach the goal, and you can't do something without having first tried the other. That's how it is and it takes a lot of patience and perseverance.

    It depends on your doctor how he wants to proceed when it comes to pain mgt. I think 2 Percocets a day is low for what you've already been through and it obviously isn't controlling your pain. It's a big jump from taking that to having a stim or pump put in. I really think they should try adjusting or maybe trying out another medication. How long have you been this way? For some, a stim or pump is a last resort measure when nothing else surgically can be done for the time being. Whatever happens, the most important thing is that whatever treatment is chosen is the best for your circumstance. I hope things work out for you. Take care
  • Thanks for the advise, and I know there are a lot of med out there that I can try. I wish there wa one miracle pill that would fix all of us, amd we on;y had to take one does. Wouldn't that be a wonderful pill!
    rplatt56 I have trued Lyrica 100mg, didn't do a lot, but was taken off because I couldn't afford it without insurance. But thanks for the heads up on the other medications. I have only ever heard of Lyrica, and Neurotin. Neurotin has helped the one real bad nerve in my leg, but the burning in the front continues. So I'll have to discuss a different option with my dr. So thank you so much for the ideas, I realy need and appreciate them. I'm also glad to here that the scs is working so well for you. I have heard so may horror stories about them, especially on some of the forum posts, and on chat. I love chat,and the people there are very supportive. But I have to remember one main thing about chat. It's a pain chat, and the people that go there are in pain. Some come looking for answers to their problems, others come to give advice, and other come to forget their pain for awhile. These people, like myself, who have had fail surgeries, or surgical complications. I know I tell people this, I have to remeber my own advice, what you have said, and what others have said on this post and other posts, just because something didn't work for me, doesn't mean it won't work for you. I need to remember that!
    meyday321, thank you for your reply! I had bilevel fusion on the same levels on 03/07/07. I agree 2 percocet would not be alot. I'm sorry, for the misunderstanding, but I take 1-2 percocets every 6 hrs as needed. I also agree with you that I need a extended release medication. I've been looking in to them, and with what I read, and ask my pharmicist about Oxycotin, and them not making a generic, or one that's not easy to get, and my insurance doesn't cover brand name Oxycotin. I need to find a different extended release med. I'm so glad to hear that your trial for the pain pump has worked out well for you. I will continue to read your posts to see how the permenent pain pump working for you.
    Thank you all for your suggestions. They are so much appreciated. I know your not dr, and this is your personal experiences, but it such a comfort, and help to me. It more help then you will ever know. Thanks for everything!!! Please keep the ideaas coming!
    Bobbi Jo
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