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MY STORY OF NAVIGATING THRU THE PAIN MANAGEMENT SYSTEM . . .

From: Pam6622 - on 04/20/2010 10:35pm

Do I have a true life story or what?

Had a spinal cord tumor when I was 34 (I'm now 56). It was removed and I felt great except my left foot and part of my left leg were numb so I had to wear a brace. I also had radiation. My neuro at the time told me I would have problems when I got older, but being fairly young, all I could think about was how good I felt at the time and didn't really want to think too far into the future.

Well, now I'm facing the future and it isn't pretty! About a year ago, I started feeling really crappy. Numbness, burning, tingling in feet, legs, buttocks and groin areas. My left leg is especially weak. I was seeing a pain management doctor at the Medical Center here (Houston), but then he stopped taking my insurance so I finagled my g.p. into filling the scripts for me. Anyway, I panicked when I started feeling like this and saw a pain management doctor here in a suburb of Houston. He was very insistent that I get a spinal cord stimulator; that meds were not good and had long term effects. So I had pretty much decided that was the way to go. Then I had an mri and after I told the neuro about the stimulator he looked skeptical and wanted me to see another neurosurgeon that does spinal cord stimulators and pain pumps. So I saw the other neurosurgeon about three weeks ago and he said he thought the pain pump would be good for me; that there probably wasn't enough space in my spine to put a lead in there. So I got set up to have a pain pump trial on Monday 4/26. But that last neuro also wanted me to see a pain management doctor in his building to see what he said. So I did today. Guess what? He says he would treat it more conservatively and he put me on Baclofen (muscle relaxer), Hydrocodone (pain pill), and Neurontin for nerve damage.

He said that he couldn't believe I wasn't on any type of pain medicine; whereas the doctor that was pushing the spinal cord stimulator was hesitant to give me 30 hydrocodone!!

I'm sleeping in my husband's recliner now because I can't get comfortable in bed. The pain is so bad and I'm so stressed out my hair is falling out. I also had a panic attack when I was sitting in the car which was parked and i started getting nervous and sweaty. Again, not pretty!

So I get three different opinions from three different doctors! For now, i think I'm putting off the pain pump and see how the meds do. Has anyone been on this combination of drugs (any or all) and does it help?

Anyway, sorry for this long winded tale but I just couldn't believe I got three different opinions! I guess it's par for the course in the world of Pain Management.

Okay, I've vented. Thanks for listening.

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13 Responses

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on 04/21/2010 8:24pm

@Pam6622,
I am so sorry for your pain. I know how terrible this is. It takes over your life, and sometimes it feels like you can't take another minute!
First of all, do you have a specific diagnose? That could help you decide your next step.
I have a spinal cord stimulator, it was implanted last December. I have some similar issues as you. Which from what I have found ours is the most difficult to control. It is not just one type of device or med that is going to help. I take 11 medications. I have done every other procedure available. I get only some relief. I have some good days and some bad days, or weeks, really. I don't want to make it sound so bleak, but I think it's better to know what's coming, than to be blind sided with this crap.
OK now, your issue's. It is not unusual to get bounced around with the kind of problems you and I have. Most people have concrete issue's. "herniated disc, spinal stenosis, DDD etc. So when you have something out of the ordinary it is more difficult for docs to get through things and get a diagnosis. They have protocols, you may not fit a protocol. So hang in there, hold on tight and try this: continue the meds for now, if you are still in pain ask for an increase in dosage. Pick one doctor, I'd go with the pain specialist. No matter what comes up, he can help you better. They are better trained to deal with chronic pain, even if there is a definite cause. You can decide with him which way to go. I would not recommend the pump at this point because you are not on morphine. You want to stay away from that as long as you can. The stimulator is at the end of the line. Insurance won't pay for it unless you have exhausted all other options. I have one and I am not impressed. It is no better for me with or without it. They now offer additional leads (peripheral) in deep tissue. I will be doing that now. Then that is it. Then it's deal with it! So try to keep away from heavy drugs as long as you can. Morphine and Methadone have many side effects, some the pain specialist didn't even know about. My therapist told me about them. I have lost almost all of my teeth. The dentist even knew about the methadone killing your teeth. But it was to late for me. My hair is falling out all over my body. I feel stoned most of the time. I sound like a dope cause I can't hardly say a intelligent sentence anymore. (I am better now, but it's been 4 years since I started it) I do it cause this and morphine are the only drugs that really take away my pain most of the time.
WoW, you thought you were long winded! But the take away is do the drugs, take the pain specialist and go from there. (now that wasn't hard) It may be hard, but stay strong. I do recommend seeing a counselor that works with people that suffer from chronic pain. It really helps! Good luck! (can you let me know how it goes?) I will subscribe to this so you can reach me, just post here and it goes to me email.

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on 04/22/2010 4:41am

Shitzugirl:

First, thank you for responding.

Second, I don't have an exact diagnosis. They think it's scar tissue due to radiation I had in 1988. All of my MRIs from 1998 to present look exactly aiike. So that's frustrating in itself.

Wow. I didn't know about all those side effects from Methadone or Morphine? Sorry I can't see your post right now and I don't remember -- that's another thing my memory is shot. I know the medications have long term side effects but I don't care right now. They seem to dull the pain and not make me too tired or loopy.

As for the stimulator, i felt uneasier about that than the pain pump. Also because my problems are so complex, I was apprehensive about a pain management dr. (the first one was not an neurosurgeon or neurologist - the one I saw Tuesday was a neurologis) rooting around in my spine!

So what does relieve your pain most? You say the stimulator doesn't work. Do the drugs help then?

I hope you start to feel better. I know when people say that to me I think: This isn't the flu! But I try to remain optimistic. Let me know how you're doing

Pam

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on 04/23/2010 12:27am

Pam,
I hear your frustration. It took 6 years for me to get a diagnosis. It took almost as long to start to get any pain relief. It really wasn't until I started to see a pain specialist that I finally got almost complete pain relief. Unfortunately it was short lived. Morphine and methadone both are like cigarettes. The more you use, the more you need to use. So, after a few months, I have to up the dosage. (I'm already topped out of methadone) So I have to be very careful. It seems that the source of my pain is drug hungry,( or so it seems at times) After the drugs and the stimulator, there is not much else in my future. I think it is very important to live as much of your life as you can. Are you able to do much? Do you still work? What do you do for fun, if anything? It can be very hard to get to do much of anything some days. I now try hard to keep my flare ups down. It makes me take it very slowly. Sometimes I think I could go hang out a the nursing home and at least I could play some games!
I love this web site because it has opened up a whole new avenue of possible contacts to help us keep a positive attitude. I think it probably is the hardest part. Not feeling sorry for yourself, or getting depressed. Keep, keepin on! AS we said back in the day.
Try to stay positive. You can see the neuro for now, but at some point you'll need to go to a pain specialist. Don't be afraid. It's just another specialist! Just find a doc you trust, that's the most important thing. Let me know if you need anything else. I am always here. God Bless and good luck

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on 04/23/2010 5:50am

Shitzugirl:

You asked me if I do much. Well, pretty much right now I'm on the net a lot. Can you tell by how quickly I answered your e-mail?! I haven't worked since 1999. I was a paralegal. Other than that, I used to be able to drive and get around and now we had to put hand controls in our Durango so I could drive. Problem is these drugs make me kind of spacey so I'm not only nervous at using the hand controls but also because of the drugs. So, right now, I'm a semi-shut in. I hate that phrase but it kind of describes how I feel right now. Thankfully, I have a wonderful and patient husband (though some times I wonder how patient he can be with all of this). We do go out on the weekends to a movie, grocery shopping, to eat, stuff like that. I'm going to try to sleep in bed tonight. That right now would be a major accomplishment! I do also like to write but I feel that my concentration level is nil right now.

How about you? Do you work? What do you do for fun?

If you want to e-mail me I'm at: phowell@swbell.net. I would like that. Or just keep writing on this site I'll take any sympathetic ear I can get!

Thanks again!

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on 04/28/2010 4:26pm

I am also suffering from cervical spandylosis and I'm currently taking 300mg gambapentin (nerve pain) twice a day, 10mg of cyclobenzaphrine twice a day and 15mg of hydrocodone four times a day. I have to make sure I intake plenty of fiber to keep regular. Even then if I do any type of physical activity I still have moderate to severe pain. It has taken me almost 6 years to get doctors to admit that I have a problem and increase my medications. I need surgery but i'm allergic to the metals used in the procedure so the doctors are reluctant to perform the surgery using this method. The only option I've found so far is to wear a bodycast or brace for three to six months. If this is the only option I can find I'm willing to use the bodycast or brace in order to minimize the amount of pain I'm in rather that to comtinue using the pain medications.

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on 04/28/2010 7:42pm

Wow, I'm sorry you're in so much pain.

I'm 29 and just found out that I have a herniated cervical disk. Don't know what to do. I cried at the doctor. My only thoughts were that it's just going to get worse. My dr. was positive, though.

I'm very active and it's so scary. I say take the pain meds and be positive.

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on 05/16/2010 5:25pm

I'm sorry to hear that you are in such pain. Even worse is that you get 3 different opinions from 3 different doctors! Neurontin can be a good med for nerve damage. Another med, that gets little attention because it is used for the treatment of depression, is Cymbalta. This drug has been approved for diabetic neuropathy and fibromyalgia, as well as for depression. When I went on this drug, my fibromyalgia essentially disappeared! I still have my bad days, and I also have arthritis in the lumbar spine and in the neck - that causes the most pain now. So every 9-12 months, I have a procedure done called radiofrequency neurolysis - the peripheral nerves in the facet joints (the actual joints of the spine) get fried and die. Unfortunately, they do grow back, but I know people who get up to 2 years of relief. An alternative to this would be epidural cortisone injections - that's what I started with, and when they stopped working, killing the facet joint nerves was a great next step (I was already researching implantable morphine pumps and spinal cord stimulators, when my pain management doctor said uh-uh, try the neurolysis first.

I would get (yet another) opinion from a different pain management doctor, preferably one who works in a university medical school. You'll have to suffer the residents, but it's been my experience that these guys really know their stuff, with the latest innovations. Ask him about Cymbalta. Ask him about epidural cortisone injections. Ask him about radiofrequency neurolysis. If he jumps right to the truly invassive like an implantable morphine pump, ask him WHY? And then see an anesthesiologist pain management physician as opposed to a physiatrist.

I hope this helps you! If you need to talk, e-mail me and I'll send you my telephone number by e-mail!

Take care!

Pam Osborne

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on 05/17/2010 1:18pm

Pam:

Thank you for your advice.

I think my problem is so complex because of nerve damage by the radiation/scar tissue that the neuro who advised me to get the pain pump just thought it would be better because of my severe pain.

Anyway, I'd like to e-mail you. My e-mail is phowell@swbell.net.

Thanks.

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on 08/11/2010 3:37am

Pam, I'm so sorry to hear about your problems and the pain you are suffering. I won't bore you with my story, but I also live with debilitating SI joint/hip pain which has completely changed my life. By the way, its a fact that the most misunderstood ppl in society are women who live with chronic pain!!! (Maybe you are just depressed....maybe you need antidepressants, or maybe a psychologist. Blah blah). Anyway, the one thing I have learned in all this, is (and I have been through a pain management clinic and discharged myself when I realized I was just another number and felt very strongly that they really were not interested in me as a person) YOU have to be in charge and you have to decide on what pain treatment you need. Something which a specialist told me at the beginning of all this is that it is very dangerous to be on opiates for long term chronic pain, because over time your life will very likely spiral downward. At the time I thought, well it already has...I'm not really LIVING anymore, I just exist because of this pain and it couldnt get any worse, surely. Anyway, in the end I was put on Fentynal Skin patches (which mg for mg is 80x stronger than morphine) and hydros for breakthrough pain. I have been on this treatment for 3 yrs and to a large extent my pain is well controlled, but guess what? My body is addicted to the Fentynal and I will have to go through a medically supervised withdrawal program to go off it. (One fine day when I'm no longer in pain...but my spine dr told me there is not much chance of a cure in my life time..I'm 49) The withdrawal is absolutely BRUTAL. I am not mentally addicted, to tell the truth I detest the medication because of the addiction. I have a strong personality and don't like anything controlling how I feel. For now though, I have no choice. My advise to you is this: Decide for yourself, there are non opiate pain pumps, stay off the strong meds if you can, but honestly Pam, if thats the only way you are going to control your pain, (and live a life thats actually worth living) then thats what you do. Living in chronic pain is torture, it steals all your energy, it affects your relationships and takes the color out of the world, and only those who live in your kind of pain will understand. By brave, be courageous and hold your chin high. Good luck!

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on 08/11/2010 3:43am

I was also put on Cymbalta, but reacted very badly. I became severely depressed, my joints in my hands swelled and became so painful it felt like I had nails driven through them (mornings when I woke was the most painful) but worst of all, the sexual side effects were something I couldn't live with, and excuse TMI, but try as I might, I could never, ever have an orgasm, and I have never (ever!) had a problem with that.

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on 08/26/2013 10:14pm

First....with all my heart I am truly sorry that you (or anyone else) have to go thru this. Second, I am writingthis via phone as it is my only internet access.

I am a 42 yr female & have been a pain management patient for nearly 12 years. Prior to that I spent almost 6 years trying to find a doc who would actually listen to me and not give me a textbook answer to my questions. Having found the right doc, I still occasionally have to thump him to get him to look past his 20 + years of expertise and see me.

Keep looking until you find the right doc. Ask for patient references with cases similar to what you are going thru. If the docs answers don't seem right, they probably aren't. Do research. This is YOUR LIFE!! Don't let your healthcare professionals forget that.

I have had 1 cervical fusion, 1 thoracic, & 3 lumbar. I have a stimulator on my left side and a pain pump on the right. The stim is cervical and the single most effective thing I have done. It works because I control when and how much stimul without limitation. I took almost two years and a ton of talking to healthcare professionals both at my p.m. clinic as well as online chats, my reg doc, others who had both good & bad results...anyone who would listen. It works only because the area it covers is no bigger than a dollar bill.

My pump covers all of my lower back. It was installed in October of 2012. It is still not working to my satisfaction. 4 days of any week, my pain is at 7 or higher for more than a third of the day. I'm not saying that the pump is ineffective, but after nearly a year, I am thoroughly disgusted with the while process.

If the pills, counseling ect. are working...do that for now. The surgeries involved with implants are huge emotional & financial commitments for some thing that may or may not benefit you. Don't be rushed into this decision.

I have so much more that I could say but hopefully what's here will help. If you do decide to get either one, I would be happy to give you mire details about that portion of my journey.

In the meantime, my thoughts & prayers are with you. Best of luck.

Auntie

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on 09/12/2013 1:46pm

I am living with the same symptoms you have... I am in pain everyday and have seen at least 15 Doctors, and they dont care one bit that I cant work, only they care that I pay the bills I will continue to create untill someone gets me out of pain. My new doctor said she couldnt do anything for me, did I want her to wave a magical wand! Im through playing thier games and taking some action with a report. I know exactly how you feel... I feel like im just waiting to die cause its been 6 yrs now and my head feels dizzy and I feel Im slowly dying with back pain in buttocks all from epidural. I too have neck, shoulder, feet, and ankle pain with numbness in hands and feet. And the groin sometimes. Used to get headaches with nausea. Now migrains. I have some very bad days and cant plan anything, cause my ankles swell within walking, All this is just too much with my memory and concentration problems added to that. Im sorry this is happening to you. Praying we get better, take care.

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on 09/12/2013 1:54pm

I am living with the same symptoms you have... I am in pain everyday and have seen at least 15 Doctors, and they dont care one bit that I cant work, only they care that I pay the bills I will continue to create untill someone gets me out of pain. My new doctor said she couldnt do anything for me, did I want her to wave a magical wand! Im through playing thier games and taking some action with a report. I know exactly how you feel... I feel like im just waiting to die cause its been 6 yrs now and my head feels dizzy and I feel Im slowly dying with back pain in buttocks all from epidural. I too have neck, shoulder, feet, and ankle pain with numbness in hands and feet. And the groin sometimes. Used to get headaches with nausea. Now migrains. I have some very bad days and cant plan anything, cause my ankles swell within walking, All this is just too much with my memory and concentration problems added to that. Im sorry this is happening to you. Praying we get better, take care.

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