Pain Dr. referring me to another Pain Dr?????

Hi Mary....

Over the years, before making it to my current PM doc, I've had similar things happen.... I *think* - from what you've shared - that your doctor is just as frustrated as you w/ not being able to control your pain... and perhaps is referring you to this other doctor to see if he can offer some new ideas.  I think the most positive thing is that your doctor isn't just referring you to another doctor - but also is telling you the door is always open for him, too.

It can't hurt to see a new doctor w/ some fresh ideas - especially if you are having uncontrolled pain.

I'm sorry, I can't remember what your pain issues are - but have you tried other things, too, along w/ the meds - nerve blocks, injections, etc?

Is the tompamax working for you?  To get my pain stabilized, it also took finding the right meds to go along w/ my narcotic meds (muscle relaxer, nerve pain, etc).

Anyway, I think your doctor is truly trying to help you.  I'd try going to the new doctor and just exploring the possibilities.  See if you like the doctor and feel comfortable w/ him.  You can always return to your old doc.... but maybe this new one will be the key to you find pain relief!!

--Tina

Thanks for the feedback, and yes, you are so right....its nice that my pain doc and I have a great relationship to be able to be so open with each other. When I found out that I had chronic pain and this would be a lifelong thing, he and I are the same age, and he grabbed my hands and said, " I will NEVER leave you, and we are in this together!" What an angel I had before me!!

I will give you the short version of what I have... I am 38 years old. I had a fusion on my L4-L5, that should have been simple, BUT, after complaining of excruciating pain after the surgery, in my back and my legs, which I never had pain in my legs prior to surgery, the surgeon kept ignoring me, and said, its part of the fusion,,,, anyways, a year went by, and many tests later they found that I had extensive nerve damage, and all the pain I was having was from my L4-L5 and my L5-S1 herniated as well. I saw a team of 12 doctors, neurologists, spine doctors, hip doctors, you name it, I saw them, and finally they came up with...the nerve damage was so intense that the nerves never went back to their proper home , so to speak, after the surgery. They are running in to each other, sitting on top of each other, etc. which is why I have horrible leg pain! I have bursitis now in both hips. Degeneritive Disc Disease. Failed Back Syndrome. Peripheral Neuropathy.

SO, I just cant seem to get out of pain, and I dont know why. With the Oxy's, I take 1 in the morning, at 5, and by 8, I am in horrible pain again, and thats where the problem lies. I dont know why that is not carrying me through.??? So, I have to hold out until around noon, to take my BT meds, and then, around 4-5 p.m. another Oxy, and then at 7, I am still in pain, but, I have to hold out, because I only have my 2 Perc to go until the end of the day.....I just wish there was a medicine that was strong enough and that would work longer!!

At this point, I dont know if the Topamax is working...I am truly grateful that I am with pain management, and that I have meds, what I have is better than nothing , I do know that. I am looking forward to seeing the new doctor to get his opinion on where to go next. This guy is apparently very good. My doc said when they go to their seminars, this doc is the one that teaches those seminars, so I hope that is a good sign.

I appreciate the feedback again. I am so glad there is this forum to come to , to ask questions, and to get support from others going through similar things.What a blessing!!

Oh, I cant wait to hear.....

I am on Oxycontin 80mg....time release

Its to carry me through, but, its only lasting for a short period of time. Please tell me what is your story!!

Thanks for posting....my eyes just filled with tears, that there may be someone else out there like me.

Thanks, SE!!

Mary....

Thanks for giving us some more info!  I'm 38, too.... And, yes, I agree - it's great to have a good relationship w/ your PM doc.  I have the same type of relationship (though it took MANY horrible experiences to get to him!). 

Re: your meds - yes, I agree - that your ER med should last longer than 3 hours.  And, if you are taking your breakthrough meds on a daily basis, at the exact same time - they move from really being a BT med to being part of your daily load (does that make sense?).  It took me a long time to figure out that was happening to me.  So, my ER med got upped.  And, now I have breakthrough meds that I truly use for BT pain. 

Anyway, let us know how the new appt. goes... I sure hope you can find something that will help your pain better.

--Tina

Hi Mary

I am sorry that your meds aren't helping your pain. I hope that it doesn't take 2 months to get in with the new doc. That would be hard to do. I wish you good luck on getting the appointment sooner rather than later. The new doctor could be a really good idea since he teaches others at seminars. He sounds like a really good dr. I am on the Fentanyl patches and oxycodone for breakthrough pain. They work pretty well for me. That may be something that the new dr tries.

I hope you have a low pain night.

love and hugs
Loretta

Hi Mary, I wanted to pop on and also say I think you have a great dr. He is doing the right thing by you by trying to get further help rather than leaving you in a situation where there is no relief in sight. My prior PM dr did nothing to change up my treatment plan the last two years I was his patient and I was just like you miserable and in horrible constant pain, I had a pain pump implanted and should not have been in that situation either. He quit PM thank goodness, went back to being an anesthesiologist and referred me to my current PM dr who is awesome. My current dr was shocked when she looked at my medical records and saw that my pain was off the charts but he had done nothing to change my treatment plan. Her words were not only was my pain under treated, but as a patient I was under treated too. She said you never do this to a patient, you should try different medication, dosages and other modalities to get some relief.

You may have developed tolerance issues with your pain meds that is something I am wondering about. It happens more than you realize with people. I know its very frustrating but all you can do is take it one day at a time. Keep us posted.

Mary, I have a very wacky system when it comes to medications of any kind. I have major tolerance and full blown allergic reactions issues, I once became septic on one of my blood pressure meds and spent two weeks in the hospital. Fortunately, I had a very wise old dr that knew what was going on and he said the odds of that happening were like a million in one and he said naturally it would happen to you, lol. With me we literally ran out of pain medications to use and the pump was the only thing left because you have such a wide variance of meds to use in one.

I have had my pump since June 2005, my prior PM dr is the one that recommended I go that route. I said no at first, I was shocked, I refused to believe there were no more meds to be tried, I think its really called denial, lol. He was ok with my decision, he said in 3 months you will be begging for the pump and he was right. Oh yes, I am very happy having the pump now that I have a dr that knows her business with the pumps. That is the key to success with a pump, you have to have a dr that knows everything possible about them and they must know all about the medications that can be used and the dosages. Without those three elements the pump will be a failure and let me tell you there are a lot of failures because drs do not know everything they need to know, they want you to think they know. My current PM dr only handles patients with pumps nothing else and she is very selective in patients she takes on. She reviews records for the past two years before she even gives an appt for a meet & greet, lol. But, she is also the top pump dr in the state of Texas. What is amazing with these pumps there are not that many pump drs out there like you would think.

You know I am on less medication than what I took orally which is another good feature with a pump. The pump meds are in a concentrated form which is totally different from orals meds. These meds are pure making the medication much stronger but in a smaller dose. When quality life issues are being jeopardized and the pain is out of control and there is not going to be any relief in sight the pump is an excellent option. I would not be surprised if this new dr does not speak of the pump to you, you would probably be a very good candidate for one considering the nerve problem. I am not sure why you are against a pump but I can assure you with the right dr in your corner you can get a lot of your life back and not be in excruiating pain 24/7 and yes, be able to function at work. I drive a car just like I did before, my head is clear, I don't walk around loopy or anything like that. With oral meds you have to wait for them to kick in and some will give off the loopy feeling for a period of time. People have no clue that I have a pump unless I tell them. Very few know that I have one, mostly folks here at the forum. I know when I did the trial I truly thought I had died and gone to heaven because it had been so long since I had been pain free. Of course the trial is totally different than when it is implanted because they start everyone out on the lowest dose possible. You will know when its time I hope, just don't miss too much. Its not worth the pain.

         Good morning Mary!

              Sorry I'm late getting back to you, but I was tuckered out by the time I got home, and hit the sack shortly after supper.

          As you can see you have stumbled upon a great forum here, and the members have already reached out to you with warm and friendly responces.

     I also had a lumbar fusion on March of last year, and have admited to those ugly words we hate to admit, of a FBS (Failed back syndrome) complete with nerve damage. Although, my pain does not run down my leg like your, its more broad based across my lower back. Am I better?...well maybe somewhat, and maybe mechanically fixed, but none the less, I'm still suffering pain. Med's? Yep!...I too was behind on them, and had to keep on my PCd to get me where I needed to be.

        You sound like you, have tried several med's, with little success. However, I think once you get to the correct PM Dr, you will have much more success, if he knows what he is doing. It does sound like you did have a good one, but he was more of a injection type of a DR.

        By no means count out the pain pump! Yes it is a last resort, but once you are out of options, please do consider it, as many have done very well with them, and as Straydog said, more than likley, it will take much less of a dose to get you some relief.

         I see so many people taking BT med's as their base line med, and if you are a long term patient needing around the clock pain med's, then I believe you should be on long term Medication for it, and the BT should only be used as needed for a flair up.

         We must also realize that being treated for pain with medication does not mean that one will be in total relief 100%, and I'm afraid many keep jacking up their medication at their request because they still suffer some type of pain. This can only lead to a much higher tolerence much more quickly than they had planned on, and before you know it, there is no room to go up on the dosage.

       We also see more and more PCd scripting med's as the PM offices are under tight scrunity, and many of the PCD's are just in over their heads on how to treat their patients. While my Dr has treated me well, I do believe he is not up to par, and does not have a handle on it for long term care. At the moment I'm on a pretty low dose of med's, but if I need to increase much more,.. than I will request a PM, only if he will send me to a good one.

    I think that is key for long term care, and should be carefully considered, before getting into trouble mediacation wise, and the high tolerance issues. You, know as well as anybody, what it feels like to be on the down hill side of you're med's, and its not a fun ride at all, especially if your on BT's instead of the ER med's.

         It looks like you are headed in the right direction, and at least you have a good current Pm, willing to take you back and maybe help you in some other way, if things don't go well.

      Several of the members here, have given you excellant advice, and I hope you continue to visit us, and let us support you. We can always use support here as well, ....so jump right in there and help support the members when you can.

          Take care, ...and its a pleasure to meet you!

       SE

Mary,

Just a quick note to tell you I do understand your fears and thougths re: the pain pump.  It's very similar to how I feel, too.  In my mind, I hold that out as  a "last resort" - and, like you, what if it doesn't work out?? (I've had a successful trial but had many complications).

That being said, my oral meds are now stable and holding me.... so I don't have a reason to push past the fear.  If they weren't working, I'd probably reconsider :)

Hang in there! --Tina

Yes, I have stated before.....I am glad I am on something, because if I wasnt, I would be screwed. I know they are doing something, just not enough!! I know this is a simple medication change, or another doc telling me its time for a pain pump. Yes, I have tried, methadone, and it did nothing for me. I dont recall saying my dose was ever a 'high' dose....

Paula, thank you very much for your words of encouragement, I really appreciate it. I , again, am blown away by everyone's support on here. I am so glad I found this site.

Thank you all! I will let you know when I get the call from the new doc to come in. Prayers to you all.

Mary,

You say surgery can't fix you.  Are you sure?  Sometimes, going back in and seeing what is there, (things that you cannot see on tests) may just be the solution.  I have only had one back surgery, but that was after a chymopapain injection to dissolve my L4-L5 disc had still left me in a lot of pain months earlier.  I had myelograms, and ct's and x rays, you name it, but it wasn't until they went back in that they found the nerve was red and inflamed and tethered by scar tissure.  The sciatic nerve was in bad shape.  Plus the foramen had to be enlarged to let the nerve pass adequately.

I am not an advocate of surgery, mind you, it took my four years of excruciating pain and being bed bound before I agreed, but I'm just saying, maybe ruling it out is not a good idea.  Maybe seeing another neurologist or orthopedic guy might be the answer.  There are some good ones still left.  I lean toward the Neurosurgeons, but thats just me.

Take care and I will pray for you, Mary.

Lindaloo

Straydog, that makes so much sense, and I appreciate you taking the time explaining that to me. Yes, I have heard and read that the pump , as far as medication, can be a dream come true! That is waht the doc was trying to tell me as well, that the meds can work so much faster, that they would play around with the meds to see what would work...but, that it would work so much better. I guess my thing as well is , my oral meds arent working , so whats the point of going through the surgery with the pump.....BUT, I am now having a positive attitude. You truly have helped me to feel better, I appreciate that!!

Suzane, that is just awful!!! How miserable for you. Prayers for you that you get relief soon!!!!