@cbrackle Anytime I've been in the ER and needed pain medication, I asked for Dilaudid. It really works for me. I'm going to ask the doctor next week about a pump.
I'm just flabbergasted when I read about the medicines that some of you are taking ... and they are helping you function without being so distracted by pain. If I took them, I would fall asleep (dilaudid, morphine, oxycontin, et al). I can take 1/2 of one tramadol during the day, or 1/2 of one codeine at night (it puts me right to sleep too). Did you start with tylenol and build up to those medicines as your condition progressed and the pain intensified? Peggy
I used to believe that as well. LOL My husband is disabled and has been a very long time. Before I developed CRPS, I only took Celebrex for my knee pain (I worked as a pharmacist 10-12 hour days) and a Demerol every two or three months for my migraines. The Demerol would knock my butt out for two or three days but hey, I didn't mind. It helped me cope with migraine pain and hangover.
I couldn't believe how my hubby could take enough pain meds to floor a horse and still function in a manner that was completely alert and productive. It went against everything I was taught.
Then it was my turn. And I learned the same thing was true with me. As long as my pain is kept within a level that is halfway bearable, I do not notice the side effects. If the dose is too low or high, I will sleep (or have insomnia), drag my foot, stumble or can't sit, stand, or walk at all due to increased pain...just like my husband.
Dilaudid is too strong, for now. Percocet and OxyContin make things tolerable, for now. My DRG Spinal Cord Stimulator blocks some pain, not a lot. I wear my braces, use my walker and staff aids to help take the weight off my joints and support them. I have a service dog which is learning how to assist me to do the things I can't.
As for "building up" to the doses I'm on, no, not really. I went from Celebrex 200mg twice a day and then had my knee replacement which caused CRPS Type 2 (Causalgia.) The pain from CRPS is intense. To relieve it, I was prescribed Percocet 10 qid then OxyContin 20 and then increased to OxyContin 30 where I remain today. They attempted Dilaudid but it knocked me on my butt although it did help a little more with the pain (in other words, I'm not ready for it yet.)
I still can't drive. I also can't stand, sit upright, walk, or lie down on my back for longer than 15 to 20 minutes at a time. That's my life and I'm living it!
@faithwalker007 So you have a drg stimulator. I'm considering changing from my Abbott spinal cord stimulator to a drg. What pain does it help, and how much does it help? I'm at the place where I need to do something different because my stimulator helps for a few days, then the benefit falls off over the next few weeks and I have to get it adjusted again.
My scs was supposed to be MRI compatible, but when I went to the lab to get a scan my controller said MRI not advised. I'm not at all happy about that. Have you had an MRI with your drg? My concern is that when I go to get one - the neurologist wants a more detailed brain scan - that same message will show up. The tech told me at the first of the year that an update is in the works and I should be able to get the MRI within a few months. It's been more than a few months and still no update.
I'm trying to learn all I can about what my options are.
Yes and had it removed a year later. Trial went fine but it was a different device. They placed Medtronic precision, I think it was. Nevertheless, after several adjustments, I had it removed.
Yes, I had a Medtronic MRI compatible SCS for 13 months and had it removed after I tried at least 100 different settings failed. I had the implant after 2 failed back surgeries and a spinal fusion at the L5-S1. Could never get a signal that would take away ANY amount of pain over the 13 months. Was diagnosed with CRPS after fusion surgery and have been battling intense 24/7 pain ever since. I just live one day at a time.
I found MFR and has been very helpful in releasing the fascia from all the scar tissue that’s developed since. I have a weekly MFR session that has done wonders for me a little at a time, and will be going to Therapy on the Rocks in Nov for their intensive therapy program. Wish me luck.
@jimhd Hi all. A friend rec'd his SCS less than 2 yr. ago and has had muscle pain in the area of the SCS ever since. Next month a neurosurgeon is relocating it from below his beltline to above it and the muscle that hurts. It is a different surgeon this time. They are not certain that the location of the SCS is the cause of the pain, just hoping for the best. BE CAREFUL when selecting a surgeon. Ask that surgeon how many he has done and ask to talk to his patients.
@faithwalker007 So you have a drg stimulator. I'm considering changing from my Abbott spinal cord stimulator to a drg. What pain does it help, and how much does it help? I'm at the place where I need to do something different because my stimulator helps for a few days, then the benefit falls off over the next few weeks and I have to get it adjusted again.
My scs was supposed to be MRI compatible, but when I went to the lab to get a scan my controller said MRI not advised. I'm not at all happy about that. Have you had an MRI with your drg? My concern is that when I go to get one - the neurologist wants a more detailed brain scan - that same message will show up. The tech told me at the first of the year that an update is in the works and I should be able to get the MRI within a few months. It's been more than a few months and still no update.
I'm trying to learn all I can about what my options are.
FYI,
I have the DRG and the SCS from St. Jude (Abbott).
Originally I was told my SCS was MRI compatible. Then they changed the leads during one of my revisions and they now say the leads are not MRI compatible (or not approved yet - but that was 4 years ago).
I also have the DRG and they told me that I should not get an MRI since they have no trials showing that having 2 stimulators is safe in an MRI.
The point being that you need to make sure that not only the battery pack, but also BOTH your leads are ALREADY approved for MRI.
I just needed an MRI for my shoulder, but they said they would not recommend it. So I had a CT scan with contrast die which is much less accurate in certain diagnosis.
I no longer get any relief from my stimulators and am considering having them removed.
@cbrackle I needed an MRI so they read the resistance on each (16) electrode, and they were all within limits for an MRI. The problem is that no one will do one here if you have a stimulator, so I have to go to an imaging center 90 minutes away. The only requirement was that I have the stimulator off during the imaging. Check with your rep about the procedure.
@faithwalker007 So you have a drg stimulator. I'm considering changing from my Abbott spinal cord stimulator to a drg. What pain does it help, and how much does it help? I'm at the place where I need to do something different because my stimulator helps for a few days, then the benefit falls off over the next few weeks and I have to get it adjusted again.
My scs was supposed to be MRI compatible, but when I went to the lab to get a scan my controller said MRI not advised. I'm not at all happy about that. Have you had an MRI with your drg? My concern is that when I go to get one - the neurologist wants a more detailed brain scan - that same message will show up. The tech told me at the first of the year that an update is in the works and I should be able to get the MRI within a few months. It's been more than a few months and still no update.
I'm trying to learn all I can about what my options are.
I am trying to get an appointment with Mayo, which requires a new MRI (my last one was 2 years ago). I was with my Abbott rep at the PM and when she showed me how to put it into MRI mode, I got the yellow triangle message - MRI not advised. What a shock since one of the deciding factors for Proclaim was being able to have an MRI. I got a CT and crossed my fingers it will be enough. But I'm not aware of updates - I'm going on a year now. Is it an update to the software in the controller? She still really didn't explain well why the controller said an MRI would be a problem... but when they did the revision they had to move the location because of all the scar tissue that had built up. Makes me crazy when unexplained s&*t happens like that.
I am trying to get an appointment with Mayo, which requires a new MRI (my last one was 2 years ago). I was with my Abbott rep at the PM and when she showed me how to put it into MRI mode, I got the yellow triangle message - MRI not advised. What a shock since one of the deciding factors for Proclaim was being able to have an MRI. I got a CT and crossed my fingers it will be enough. But I'm not aware of updates - I'm going on a year now. Is it an update to the software in the controller? She still really didn't explain well why the controller said an MRI would be a problem... but when they did the revision they had to move the location because of all the scar tissue that had built up. Makes me crazy when unexplained s&*t happens like that.
@feckert52
I could have written your post. Exactly what happened to me. The Abbott tech told me that he expected an update to make my Burst DR MRI compatible. That was 9 months ago.
I chose the Burst because it was touted as being MRI compatible. I need a brain MRI, so went in, put the gown on, turned on MRI, action not advised. A CT won't do the scan that's needed. Frustrating.
The problem has to do with the leads. It seems to me that the surgeon should have warned me about it, but the only time I ever saw the surgeon was in the OR prep cubicle for 1 or 2 minutes.
So, anyone reading this beware! It is not MRI compatible!
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@cbrackle Anytime I've been in the ER and needed pain medication, I asked for Dilaudid. It really works for me. I'm going to ask the doctor next week about a pump.
Jim
I used to believe that as well. LOL My husband is disabled and has been a very long time. Before I developed CRPS, I only took Celebrex for my knee pain (I worked as a pharmacist 10-12 hour days) and a Demerol every two or three months for my migraines. The Demerol would knock my butt out for two or three days but hey, I didn't mind. It helped me cope with migraine pain and hangover.
I couldn't believe how my hubby could take enough pain meds to floor a horse and still function in a manner that was completely alert and productive. It went against everything I was taught.
Then it was my turn. And I learned the same thing was true with me. As long as my pain is kept within a level that is halfway bearable, I do not notice the side effects. If the dose is too low or high, I will sleep (or have insomnia), drag my foot, stumble or can't sit, stand, or walk at all due to increased pain...just like my husband.
Dilaudid is too strong, for now. Percocet and OxyContin make things tolerable, for now. My DRG Spinal Cord Stimulator blocks some pain, not a lot. I wear my braces, use my walker and staff aids to help take the weight off my joints and support them. I have a service dog which is learning how to assist me to do the things I can't.
As for "building up" to the doses I'm on, no, not really. I went from Celebrex 200mg twice a day and then had my knee replacement which caused CRPS Type 2 (Causalgia.) The pain from CRPS is intense. To relieve it, I was prescribed Percocet 10 qid then OxyContin 20 and then increased to OxyContin 30 where I remain today. They attempted Dilaudid but it knocked me on my butt although it did help a little more with the pain (in other words, I'm not ready for it yet.)
I still can't drive. I also can't stand, sit upright, walk, or lie down on my back for longer than 15 to 20 minutes at a time. That's my life and I'm living it!
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Hug
1 ReactionYes, I have a DRG Spinal Cord Stimulator by Abbott Medical formerly St. Jude Medical. It's a Prodigy Stimulator. It's MRI compatible
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1 Reaction@faithwalker007 So you have a drg stimulator. I'm considering changing from my Abbott spinal cord stimulator to a drg. What pain does it help, and how much does it help? I'm at the place where I need to do something different because my stimulator helps for a few days, then the benefit falls off over the next few weeks and I have to get it adjusted again.
My scs was supposed to be MRI compatible, but when I went to the lab to get a scan my controller said MRI not advised. I'm not at all happy about that. Have you had an MRI with your drg? My concern is that when I go to get one - the neurologist wants a more detailed brain scan - that same message will show up. The tech told me at the first of the year that an update is in the works and I should be able to get the MRI within a few months. It's been more than a few months and still no update.
I'm trying to learn all I can about what my options are.
Jim
Yes, I had a Medtronic MRI compatible SCS for 13 months and had it removed after I tried at least 100 different settings failed. I had the implant after 2 failed back surgeries and a spinal fusion at the L5-S1. Could never get a signal that would take away ANY amount of pain over the 13 months. Was diagnosed with CRPS after fusion surgery and have been battling intense 24/7 pain ever since. I just live one day at a time.
I found MFR and has been very helpful in releasing the fascia from all the scar tissue that’s developed since. I have a weekly MFR session that has done wonders for me a little at a time, and will be going to Therapy on the Rocks in Nov for their intensive therapy program. Wish me luck.
-
Like -
Helpful -
Hug
1 Reaction@jimhd Hi all. A friend rec'd his SCS less than 2 yr. ago and has had muscle pain in the area of the SCS ever since. Next month a neurosurgeon is relocating it from below his beltline to above it and the muscle that hurts. It is a different surgeon this time. They are not certain that the location of the SCS is the cause of the pain, just hoping for the best. BE CAREFUL when selecting a surgeon. Ask that surgeon how many he has done and ask to talk to his patients.
-
Like -
Helpful -
Hug
1 ReactionFYI,
I have the DRG and the SCS from St. Jude (Abbott).
Originally I was told my SCS was MRI compatible. Then they changed the leads during one of my revisions and they now say the leads are not MRI compatible (or not approved yet - but that was 4 years ago).
I also have the DRG and they told me that I should not get an MRI since they have no trials showing that having 2 stimulators is safe in an MRI.
The point being that you need to make sure that not only the battery pack, but also BOTH your leads are ALREADY approved for MRI.
I just needed an MRI for my shoulder, but they said they would not recommend it. So I had a CT scan with contrast die which is much less accurate in certain diagnosis.
I no longer get any relief from my stimulators and am considering having them removed.
Carl
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Like -
Helpful -
Hug
1 Reaction@cbrackle I needed an MRI so they read the resistance on each (16) electrode, and they were all within limits for an MRI. The problem is that no one will do one here if you have a stimulator, so I have to go to an imaging center 90 minutes away. The only requirement was that I have the stimulator off during the imaging. Check with your rep about the procedure.
-
Like -
Helpful -
Hug
1 ReactionI am trying to get an appointment with Mayo, which requires a new MRI (my last one was 2 years ago). I was with my Abbott rep at the PM and when she showed me how to put it into MRI mode, I got the yellow triangle message - MRI not advised. What a shock since one of the deciding factors for Proclaim was being able to have an MRI. I got a CT and crossed my fingers it will be enough. But I'm not aware of updates - I'm going on a year now. Is it an update to the software in the controller? She still really didn't explain well why the controller said an MRI would be a problem... but when they did the revision they had to move the location because of all the scar tissue that had built up. Makes me crazy when unexplained s&*t happens like that.
-
Like -
Helpful -
Hug
1 Reaction@feckert52
I could have written your post. Exactly what happened to me. The Abbott tech told me that he expected an update to make my Burst DR MRI compatible. That was 9 months ago.
I chose the Burst because it was touted as being MRI compatible. I need a brain MRI, so went in, put the gown on, turned on MRI, action not advised. A CT won't do the scan that's needed. Frustrating.
The problem has to do with the leads. It seems to me that the surgeon should have warned me about it, but the only time I ever saw the surgeon was in the OR prep cubicle for 1 or 2 minutes.
So, anyone reading this beware! It is not MRI compatible!
Jim