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Old 07-20-2008, 11:03 AM   #1
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What do you think the next step will be and what to do about meds?

My post is two-fold, first wondering what people with more experience with CP and various back surgeries think will happen next with my situation, and a question about meds as well.

First my history is I'm 22 and have had 3 surgeries between now and 2004. Two discectomy's and a spinal fusion done in april of 2007. The fusion was a last ditch effort, and I was hopeful it would reduce my back problems to the point where I'd only need an occasional tylenol. The surgery didn't work as well as planned, it did somewhat reduce the pain I felt from a pinched nerve going down my leg, but the pain in my lower back remains largely the same, and I still have pain in my leg every now and then. Unfortunately in the late summer of last year my health insurance ran out, I then had no doctors to see or get medication or tests from. Well eventually I said screw it, swallowed my pride, and began going to free clinics once a month. They did nothing for me, just refilled my blood pressure and pain medication. Eventually they set me up with a neurosurgeon, as the free clinic was part of a larger hospital. Eventually I was set up with free limited of liability medical insurance, and got set up with the pain clinic at said hospital, which is where I've been going since April, once a month.

I will say I am glad to not have to goto free clinics anymore and wait for hours on end, that I can finally goto doctors with a set appointment time again, but I still feel as if it's going nowhere. I only saw the neurosurgeon once and he told me he could not prescribe meds to me, and simply set me up for an mri and with the pain clinic. Even though it is a county hospital and I now get free health care, it actually isn't much different then seeing my regular doctors when I had better insurance. As I said I began going in mid April of '08. Since then I went back every 4 weeks. However, I've been there 4 times and not much has been done. My first time I had not yet had my mri, so they basically said we need to do this asap and until then we can't do anything else, but they did refill my meds. However, the mri couldn't get scheduled until a week before my may appointment, so when I was at the pain clinic again, the results were not in and thus they said we have to wait and just refilled meds.

Finally at my june appointment, the results were in but I am embarassed to say I didn't actually ask what the verdict was. The first thing my doc said to me is that we needed to do a trigger point injection at my next visit, instead of inquiring about my MRI I instead began asking a bunch of questions about the procedure and forgot about my MRI. I should also point out this was a different doctor than the one I had seen in the prior two visits, although my other doctor was there in the office. I guess I assumed the mri results had not been good since they wanted to do an injection, and the appointment was over so quickly, I never got into specifics about my MRI results. Once again my meds were refilled and the trigger point scheduled for my july appointment.

I had my appointment a little over a week ago and let me say the injection was more painful than I thought it would be, as I got 4-5 injections. Also the doctor who I had seen the previous 2 times was the one to do it, so I am insure why they did not have him do all my appointments instead of 3 out of 4 but oh well. I was told the injection worked in two ways, one medicine begins working within minutes and another in the next 16 hours or so. Well nothing really happened, besides just the same pain with additional soreness in the area where I'd had the injections. I'm not surprised because prior to most of the surgeries I had doctors tried various injections such as epidurals in an effort to avoid surgery, but they never worked. I guess my next question to people who have been in similar situations is, what do you think the next step will be? I know every doctor is different so it might be hard to say what one will do, but I am just curious.

I've already had a fusion done, are there any other surgeries that could be performed, that might help me even further? I know the pain will never completely go away, but I'm just looking for something to minimize my pain to where my life in manageable. I definitely know I don't want to have more trigger point injections, because I think they would be useless.

---------------------------------------------------------------------------
The second part of my post is about meds. Basically I'm having a hard time with the medication I'm on, it isn't the doctors fault but mine as I've been afraid to speak up about it. Throughout all my surgeries, and for most of the last 3-4 years, my main pain killer was vicodin. The dosages varied but that was what I was on, and it worked extremely well. After my insurance ran out, I had no doctors to see and my supply of pain meds went away. When I eventually began to goto free clinics, I was told the strongest meds they prescribe are tylenol with codeine. This was in october-november of last year. Well obviously I thought better to have something then be left in pain with nothing so I took it. I've been on it since then. When I was just going to free clinics, this is the only med I was given for my back. Once I started to see the doctors at the pain clinic, they put me on tramadol and gabapentin in addition to the codeine. I haven't really said anything about my concerns over the codeine to my doctor yet.

The problem is, even right off the bat the codeine wasn't anywhere near as effective. Now that I've been on it for 8-9 months, it is only getting less and less effective. The point is I'm fine with the other meds, I want to switch from codeine back to vicodin, but I've been afraid to even bring it up. I don't want to sound like I'm drug seeking, and I know especially if I name the specific med I wanted some doctors might be suspicious or reluctant to prescribe. What is the best way to go about asking for a switch in meds, and has anyone who has relied on county hospitals for medical care and meds had any experience with trying to get stronger meds, and if so did you fail or succeed?

Sorry for such a long post, I just want to get all this stuff taken care of.

Last edited by eddieJ85; 07-20-2008 at 11:11 AM.

 
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Old 07-20-2008, 11:20 AM   #2
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paula456 HB User
Re: What do you think the next step will be and what to do about meds?

I may be wrong, but I believe tylenol with codeine is simply the generic form of vicodin. Specifically, vicodin is hydrocodone and acetominophen (tylenol.)

They may, however, be giving you a weaker dose then you had before.

 
Old 07-20-2008, 12:19 PM   #3
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roro HB User
Re: What do you think the next step will be and what to do about meds?

as for the meds, dont mention any specific names, but just say you need something stronger. Focus on your pain level being high, pain not being under control, things you can't do anymore because your pain is too high.

 
Old 07-21-2008, 06:34 AM   #4
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BlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB User
Re: What do you think the next step will be and what to do about meds?

Hi Eddie, and welcome to the board!

I'm sorry you've had to go through so much at such a young age. Did you lose your insurance because you were out of work for too long? Are you working again now?

I'm glad you swallowed your pride and went to the free clinic. I get so tired of hearing people saying we need nationalized medicine so everyone can get health care. Everyone already CAN get health care! You're proof positive of that! Now that you've bitten the bullet and gotten this far, Eddie, you've now got to speak up. I do understand that you don't want to be labeled a drug seeker. That's definitely a legitimate concern! Like Roro said, you might not want to name a specific drug you want them to prescribe. Paula is right that Tylenol with Codeine and Vicodin are similar, but the difference is actually that the Codeine in Tylenol #3 is a natural opiate and the hydrocodone in Vicodin is a synthetic opiate. The synthetic one is actually stronger and more effective. You would have to take more of the Tylenol #3 to get the same effect as the Vicodin, and you don't want to do that because you'd load too much Tylenol into your system. You're going to have to tell your doctors that you're in a lot of pain and is there anything else you can take that would control it better. They may ask you what you've taken in the past, and it's absolutely fine and proper to tell them then that you used to have Vicodin. If they don't want to give you that, there may still be other meds they can add that may help, like maybe a muscle relaxant.

The injections don't work for everyone. I've never had an injection that did squat for me. I had to go through them so they could see that they wouldn't do anything for me, but now I'm done with them, my charts are well documented that they don't help me, and we moved on to other things.

As I think you already know, getting your MRI results is your next big item on your to-do list. You should be able to get at least the written report on your own. Call the center where you had it done and ask for a report to either be mailed to you or prepared for you to pick up. That will have a doctor's comments on it with his impressions. You can also ask at your next appt, of course, but if you don't want to wait, you can have access to it yourself.

Eddie, like I said before, you've got to learn to speak up for yourself. Notice I said [I]learn[/I]. There's an art to speaking to people who have control over your issues. You don't want to be demanding. That won't get you very far. In the long run, it will backfire on you. Just be polite and ask questions. Be as educated as you can before you go to your appt. This is a good place to get information. Many of us here have been through what you're going through. We can help you from our own experiences. Doctors appreciate patients who listen to their advice and show them respect, but who take an active role in their own health. Don't tell them, "I read on the internet..." They'll roll their eyes at that. But you can tell them that you've talked to some other people with back problems and learned that (insert whatever you learned here). Make a list of your questions before your appt. I used to keep a running list from the time of one appt to the next. It made it easy to get my answers and I didn't leave feeling like I had forgotten something.

I wish I could tell you I knew what would come next for you. I don't, but that MRI will certainly be a key to it. Don't give up! Do you exercise at all? Walking is best, if you're able at this point. Don't do any lifting, of course, but you can't let yourself just sit all the time because of your pain. Strengthening your core muscles is important, so you use your back muscles less and stomach muscles more.

I hope you get the answers and help you need. Hang in there! Take it a day at a time. Please post again and let us know how you're doing.

Blessings,
Emily

 
Old 09-28-2008, 07:24 AM   #5
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eddieJ85 HB User
Re: What do you think the next step will be and what to do about meds?

Sorry it took me so long to look at these replies, but I thought I would address one and give an update.

[QUOTE=BlueAtlas;3656166]I'm sorry you've had to go through so much at such a young age. Did you lose your insurance because you were out of work for too long? Are you working again now? [/QUOTE]

Well, I was living at home and I had free insurance because I was a full time student. Problem is, as my back got worse I could barely manage being a half time student, which wouldn't of gotten me any insurance. As of right now I haven't really been able to work. I'm not going to say it's incredibly difficult to find a job, but I don't want to commit to something(school or work) until I know this time my back won't cause me to quit. My family and I have wasted a lot of money on college during my injury that in the end was worth nothing because the injury eventually forced me to drop out.

[QUOTE]
I'm glad you swallowed your pride and went to the free clinic. I get so tired of hearing people saying we need nationalized medicine so everyone can get health care. Everyone already CAN get health care! You're proof positive of that![/QUOTE]

Yup. Before this, I had a completely different view of how free clinics, etc. worked. I thought you had to be very desperate to seek the free clinics, but I saw that most of the people weren't poor or anything like that, they simply just couldn't afford the outrageous cost for health care.


[QUOTE]
Paula is right that Tylenol with Codeine and Vicodin are similar, but the difference is actually that the Codeine in Tylenol #3 is a natural opiate and the hydrocodone in Vicodin is a synthetic opiate. The synthetic one is actually stronger and more effective. You would have to take more of the Tylenol #3 to get the same effect as the Vicodin, and you don't want to do that because you'd load too much Tylenol into your system.[/QUOTE]

Yeah, I was on vicodin long enough to know it isn't the same as codeine. I am going to have to try to speak up, since I posted this I've had two more appointments and still haven't had the courage.

Also, really no change in terms of..how my back feels and what we are going to do.


[QUOTE]
I wish I could tell you I knew what would come next for you. I don't, but that MRI will certainly be a key to it. Don't give up! Do you exercise at all? Walking is best, if you're able at this point. Don't do any lifting, of course, but you can't let yourself just sit all the time because of your pain. Strengthening your core muscles is important, so you use your back muscles less and stomach muscles more. [/QUOTE]

We have a treadmill and I do use it from time to time, other than that everything else I've tried just leaves me in too much pain.

However as you said, I can't sit around all the time because of this pain. Problem is that is what usually ends up happening. I turned 23 a few days ago and feel like time has just passed me by. I really do feel as if my life is sort of frozen in place. Time goes on, but nothing changes. I don't wanna be on medication for the rest of my life, at least meds like vicodin. Once again problem for right now I don't know what I'd do without them.

I do have to take charge and start asking some hard questions and talking about my meds. Sounds easy for some people, but I find it hard to talk about that kind of stuff with doctors. Not medical questions, but stuff about medicine.

 
Old 09-28-2008, 12:04 PM   #6
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roro HB User
Re: What do you think the next step will be and what to do about meds?

eddie, I am sorry you hve to go through this. i fought the pain for years, and finally found a surgeon who fixed my back. he said the vertebrae in my back was broken apart from the lamina and slipped, dragging all the nerves with it, and the foramina was pinching the nerves so much they were flattened as thin as ribbons.

I just wanted to say something about having no insurance and "free clinics".
You may be able to go to a free clinic to get medication if you have an acute illness, but they don't have specialists there. to see a specialist people need insurance. so if you go to the free clinic and they say you need surgery or cancer tretment or any other specialized care, you are not going to get it there.

even with my insurance (aetna) I had a difficlut time getting surgery, because the best surgeon in my area didn't want to take aetna.they also dont like to take risky cases. there is a lot of politics in it.

as for eddie, if you still have pain, I would suggest going to a pain management center, pain clinic, or pain doctor and get on a long acting medicine. the shorter acting ones wear off too quickly, and if you have 24-hour a day pain, you need something that will slow release***REMOVED***

Last edited by Mod08; 09-28-2008 at 05:32 PM. Reason: Do not suggest specific medications to others - leave it to the professionals.

 
Old 09-28-2008, 12:30 PM   #7
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eddieJ85 HB User
Re: What do you think the next step will be and what to do about meds?

[QUOTE=roro;3743947]eddie, I am sorry you hve to go through this. i fought the pain for years, and finally found a surgeon who fixed my back. he said the vertebrae in my back was broken apart from the lamina and slipped, dragging all the nerves with it, and the foramina was pinching the nerves so much they were flattened as thin as ribbons.[/QUOTE]

How many surgeries did you have prior to that? Just out of curiosity, I'm up to 3 major surgeries and several minor procedures, etc. With the latest being a spinal fusion done over a year ago.

[QUOTE]
I just wanted to say something about having no insurance and "free clinics".
You may be able to go to a free clinic to get medication if you have an acute illness, but they don't have specialists there. to see a specialist people need insurance. so if you go to the free clinic and they say you need surgery or cancer tretment or any other specialized care, you are not going to get it there.[/QUOTE]

This is tru,e but I'm not exactly going to the free clinic anymore. After I had gone there several times for pain they set up a referral with me at the pain clinic of the hospital(it is set up where the free clinic is right across the street from the county hospital) so since April I've been going to pain specialists and such. I also had to see a neurosurgeon prior to being referred to the pain clinic.

So to all the people reading wondering about free clinics, they work well if you're in a lot of pain and can't afford to see a doctor for medications, and I recommend you ask them to refer you to a pain specialist as soon as possible. I will say 99% of free clinics are not really going to give you anything more than tylenol with codeine for pain, but it's better than nothing if you have no other way of getting medication.

[QUOTE]
as for eddie, if you still have pain, I would suggest going to a pain management center, pain clinic, or pain doctor and get on a long acting medicine. the shorter acting ones wear off too quickly, and if you have 24-hour a day pain, you need something that will slow release,**REMOVED**.[/QUOTE]

Well yeah the doctors I see now, they are a pain clinic. As for long acting medicines, that is a good idea. I'm on gabapentin, tramadol, and codeine. The tramadol is long lasting, but I've noticed it's more effective when taken with codeine, so of course as the codeine itself begins to be less effective so does the tramadol.

I was on fentanyl patches for a short time after my fusion, as well as oxycodone. Problem is even then I had some form of insurance. Codeine, tramadol, even vicodin isn't horrible expensive without insurance. Oxycodone I remember it was a couple hundred bucks, and the fentanyl if I remember, was equally expensive.

It also sucks because people on here tell me not to mention specific medications, which I know is good advice. However, he also then doesn't know which medicines actually worked for me, and I run the risk of getting prescribed something that will do nothing and just cost me money. Money is very very tight right now.

Last edited by Mod08; 09-28-2008 at 05:33 PM.

 
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