Chronic Pain Whatever the cause, support for managing long term or intractable pain.


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Old 05-28-2012, 03:09 PM #21
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Default Hello skygardener

I am sorry if I missed your postings. I try to visit as much as I can to welcome people to Neuro Talk. Most all of us on the site have some form of disability we are dealing with. I have had so many appts. lately, time for NT has been limited. I do want to welcome you and address some of your fears and concerns. Going for another opinion like you are doing is vital. I think that is the very best thing to do. Your symptoms do sound like they are due to lumbar problems. If you post your MRI, and need more help in understanding it, others will help you for sure. Lisa is the best in that regard, as she has done alot of research.
I have cervical issues, and have had two spinal fusions. The last was C3-7. I have a few sugestions. You will need help at home. Please get some kind of help in, a neighbor, a friend, church member and discuss this issue with your doctor. For me, pain was extreme for the first two weeks, and I didn't get around so good. i too had the curve in my neck, and that was straightened out at the time of these fusions. I was NOT able to tend to myself. Medicare/medicaid may provide some kind of help in, I would sure inquire.
Before you do the surgery, please investigate the condition of the vertrebre above and below the site to be surgically corrected. It is important that these vertrebre are in good shape. All hardware puts strain on the ones above and below. Ask your surgeon specifically about this. This happened to me, where the ones above and below did not do so well, and further surgery was needed. It is called the domino effect.
Prepare ahead of time, with good nutrition that is ready made at home. There are also wash cloths for adults, for washing that are water free for the first days you are home, and may not want to get into the shower etc. It helped me to stay feeling clean. Talk over all your pain medications carefully. I did not feel I got adequate pain control either in the hospital or at home. If you have a pain specialist, make sure they are on the same page as your surgeon. I had trouble with these two doctors of mine communicating. You will not want to walk you dogs. DO think about putting them in a facility for a few days, or get someone in to walk them for you.
Because you are at multi level of fusions, plus a curve of the spine, it is a tough surgery. I did need alot of help. I was lucky to have the friends on hand to give me help. Please try to get yourself help while you are home that first week. I wish I were your neighbor, I would be there for you. I do wish you all the best in this surgery. I hope it turns out OK. My surgery did turn out OK and I am glad I went though it. Pain is much much less than it was. if you need anything, or research, please don't hesitate to contact me. I will keep you in my thoughts and prayers. ginnie
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Old 05-28-2012, 03:22 PM #22
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Default Pain management

Quote:
Originally Posted by redwoc View Post
Why havn't they tried a stimulator mine has been the only way i could live. ask about one before fusion I have been able to put the fusion of my c-6 t1 for the past 5 years with the stimulators.
Hi Suz...I also take Hydrocodone and have been taking it since 2003 (.5/325) every six hours "as needed". I try to taper off now and then as I can to keep the theraputic effect as high as possible. Now it just is not enough and I am taking two which I rarely did before. What I have had to do is drink wine, usually red wine in the evening instead so I will not take too much. Also I noted that Ibuprophen has anti-inflamatory properties and sometimes I take that and it helps a lot more than the Acetempenaphen they combine with the Vicodin. Why don't they combine the Vicodin with the Ibuphrophen I wonder. Anyway here are some less controversial things I am doing (but I am very new to this discussion so this will probably not be very helpful:

1. Heating pad
2. TENS unit
3. Swimming
4. In addition to medication, re-focus and/r distract your mind. This sounds like nonsense when you are in real pain but even then it does help, maybe not on its own, but it really does help. I write and paint but if you play piano or guitar, anything really that you enjoy. Someone told me to keep a daily journal and first thing every morning just write three pages, stream of consciousness...nonsense or whatever, just keep your hand moving, what ever comes into your mind. It seems to be a kind of venting and this really helps also. Sometimes when you go back a week or two later and read (after letting the writing "age" a little, it can be really insightful. Imagine it is your inner child in pain and crying out for attention (Isn't that what the body is doing, really?). By writing you give attention and voice to that inner child or inner "bones" or whatever.
5. I believe that taking calcium, Glucosamine/Chrondritin (sp?) and other supplements also helps but in more subtle ways.
6. I also have Clonezepam and sometimes that seems to help...anything that helps you relax...Chamomile tea

I guess I really believe that it is a whole spectrum of things that help...not just a couple of drugs sort of thing. The other thing is...for me, I have just lived with the pain...try to ignore it, do Yoga and meditate. Use all the tools available to you and take control to the extent you can. If you feel like a victim, defeated, that will amplify your pain so be a warrior. :-)

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Old 05-28-2012, 03:36 PM #23
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Quote:
Originally Posted by ginnie View Post
I am sorry if I missed your postings. I try to visit as much as I can to welcome people to Neuro Talk. Most all of us on the site have some form of disability we are dealing with. I have had so many appts. lately, time for NT has been limited. I do want to welcome you and address some of your fears and concerns. Going for another opinion like you are doing is vital. I think that is the very best thing to do. Your symptoms do sound like they are due to lumbar problems. If you post your MRI, and need more help in understanding it, others will help you for sure. Lisa is the best in that regard, as she has done alot of research.
I have cervical issues, and have had two spinal fusions. The last was C3-7. I have a few sugestions. You will need help at home. Please get some kind of help in, a neighbor, a friend, church member and discuss this issue with your doctor. For me, pain was extreme for the first two weeks, and I didn't get around so good. i too had the curve in my neck, and that was straightened out at the time of these fusions. I was NOT able to tend to myself. Medicare/medicaid may provide some kind of help in, I would sure inquire.
Before you do the surgery, please investigate the condition of the vertrebre above and below the site to be surgically corrected. It is important that these vertrebre are in good shape. All hardware puts strain on the ones above and below. Ask your surgeon specifically about this. This happened to me, where the ones above and below did not do so well, and further surgery was needed. It is called the domino effect.
Prepare ahead of time, with good nutrition that is ready made at home. There are also wash cloths for adults, for washing that are water free for the first days you are home, and may not want to get into the shower etc. It helped me to stay feeling clean. Talk over all your pain medications carefully. I did not feel I got adequate pain control either in the hospital or at home. If you have a pain specialist, make sure they are on the same page as your surgeon. I had trouble with these two doctors of mine communicating. You will not want to walk you dogs. DO think about putting them in a facility for a few days, or get someone in to walk them for you.
Because you are at multi level of fusions, plus a curve of the spine, it is a tough surgery. I did need alot of help. I was lucky to have the friends on hand to give me help. Please try to get yourself help while you are home that first week. I wish I were your neighbor, I would be there for you. I do wish you all the best in this surgery. I hope it turns out OK. My surgery did turn out OK and I am glad I went though it. Pain is much much less than it was. if you need anything, or research, please don't hesitate to contact me. I will keep you in my thoughts and prayers. ginnie
Thank Ginnie, I appreciate the suggestions. Some people say you should have a neurologist and orthopedic surgeon participating in procedure, or a neurologist rather than an orthoepedic surgeon. I guess I will ask about that when I go for my consultation later in June. This may sound like a silly question but how do I post my MRI? I see how to add files but since it is on a disc how would I do that? I also have a SPEC CT scan which is really scary but interesting. Maybe you refer to the radiology reports rather than the images. In that case I could scan those but would want to make them private I think....what have others done?

Again, thanks so much. Unfortunately I recently moved here and do not know people well yet except for church and the people in my church have already offered to help...it is so hard to accept! My family...all are thousands of miles away in different directions and mostly have to work...such is life in the 21st century!

Take care,
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Old 05-28-2012, 03:50 PM #24
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Default Chiropractic???? no, no, no....

Quote:
Originally Posted by lunchlady4 View Post
I agree with having the surgery! I have fusion on c6 in 2005. I had a bulging dics that caused pain and numbness in my fingers. I would do the surgery again. It helped right away take the pain away. I still have 2 bad discs in my neck right above and below my fusion. They are degenrative but not bad enough to do anything about yet. As time has gone on the pain has also. I have done PTand chiro to help me along the way. I CAN NOT take oral meds. I had shoulder sugery in 2009 and had to just take IBP in massive doses cause everything else made me sick. As a result I am now allergic to IBP from all that my system had to take. I just had my first round of facet injections on Monday and have been home since. The ache and pain in my neck and back are terrible. I hurt more now than I did before the shot. Yesterday was the worse, I cried most of the day. I'm so frustrated with myself and the pain that I'm getting depressed. Why Me snydrome! Today is a little better no tears but I'm suppose to start PT today and I'm nervious about that. I don't know if I want anyone touching me at all. Has anyone else had so much pain after their shots and how long did you hurt? I did not feel pain relief right after the shot either. Maybe my problem is not joint pain and they will have to go in and take care of the nerve endings. Not sure how I feel about that option either.
Any advice is appreciated, lunchlady4
Dear lunchlady, Maybe your situation is different but I was told by my physical therapist that I was NEVER to go to a chiropractor under any circumstances. I wonder who sent you to a Chiropractor rather than a physical therapist. If anything I would think it should be in reverse order but I am just learning about all of this so I defer to others.

BTW I have this great thing that helps with my neck when it feels like my head weighs 200 pounds! It is a think soft spongy thing that wraps around your neck and connects with velcro (Mine has leopard print!). It also has an on/off switch and will vibrate and so massage the neck. It really helps me but I do not (yet) have degenerative issues in my neck.

Of course you feel depressed, how could you not. If you have not been given antidepressants ask for them (Maybe from some doctor other than the one that sent you to a Chiropractor!). With depression...it is like quicksand...you have to not panic and give in to despair...you must relax and stay, in that way, on the surface of it. It is a cruel deamon. You must remain vigilant and outwit it. Or think of it like an undertow at the beach...instead of trying to fight it or panic, relax and "swim" along the shore until it breaks and you can return to land (come out of the depression). Most people do not have chronic depression, rather it is related to a condition like your cervical spine issue.

One day at a time...one hour at a time.
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Old 05-28-2012, 03:58 PM #25
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Default Hi skygardener

Good idea, get both of those to address your back issues, both fields of medicine. I did the same thing, and found them to be on the same page, so I knew the surgery was right for me. As far as posting the MRI. Jo*Mar, one of the moderators I would contact. I am horrible on the PC and still flounder around a bit. Should be able to click on one of the moderators names to ask her. May try posting on the front threads again, to get more attention on the how too's of this. wish I were better at it. There is a way to put the MRI up, and alot of people just write it all out like as list for others to read. Leesa is real good at this, and Mrs.D and Doc. Smith. If you have trouble getting directions, contact me and I will write to the modertor for help.
ACCEPT help from the church. Yes, very good idea. Even if this is hard and embarassing to do. We are all the human family and need each other. Let them extend their hands to you. Take care of the dogs etc.....
Do you have a side potty chair? or are close to bathroom? This may help those first days too. since yours is lumbar, you may want a walker as well. Mine was Cervical, so I just walked stiff and upright.
I used one of those gently sloping pillows to keep my back and neck straight.
I also did all the doctors told me to do....keep wound dry. There are bandages to put over incision site that will allow bathing after a time. They keep the incision site dry. Somebody can apply that to your back for you.
My wound was in the front of my neck so I had no issue with that.
Don't hesitate just to write out your MRI or CT report. Someone will help with that interpretation stuff. I also can look up what I don't understand and help you too. Once the language of it is understood, it isn't quite as scarry.
Do go for those two different fields of medicine, that really is the best way to feel at ease with your decision, when more than one doctor agrees on the same procedures. take care, I will be here, and so will NT ginnie
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Old 05-28-2012, 04:05 PM #26
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Default Hi lunch Lady

If the shots make you worse, don't do them. I had several that did that, and the pain specialist then changed to a different one, a katamine infusion. That did give relief. Not all injections are the same, and some do really help. Look up on the internet what injections are done for your situation, and maybe ask to try something else. don't give up. I sure know about that kind of pain, and I am sorry you are in tears. Hope you get the relief you need. I do take medications, have to for quality of life. I will be thinking about you too. All of us with back issues should keep in touch with each other for support, none of it is easy to go through. All my best to you lunch lady, get some more help. ginnie
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Old 05-28-2012, 04:14 PM #27
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Default Hi hhahn

Sorry your fusion didnt turn out so good. I still take meds too, but the C3-7 did help a bit. Not going to be perfect, but it did stop the pain running down my arms. wish that you had a better outcome. It is so hard when folks have to face this and make a decision. some get better, others do not. I wish there was an advanced way to predict the ones with better outcomes.
I took a chance like you did. I really do feel sad for all of us with spinal issues. ginnie
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Old 05-29-2012, 12:20 AM #28
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Hi Skygardener, Welcome back...

Quote:
Originally Posted by skygardener View Post
I was diagnosed with Major Depression and anxiety in 2000 and since then when I have had a surgery I feel like they have not given me enough pain medication. I worry that when people have Depression they will not give you enough pain medication which is a terrible sort of discrimination.
We chronic pain patients are subjected to a lot of stigmas; I'm sure you've experienced/figured that out by now. There are many possible reasons for your post-surgical pain being undertreated. They may be concerned about medication interactions between any antidepressants, anxiety (benzodiazepines), or other meds you may be on, and pain medications. Or they may be concerned/fearful of an overdose - either accidental, or intentional during a bout/period of deep Depression. Also, there is a Pain Crisis going on right now that is having effects on the way doctors and health professionals do their jobs. It's a very complicated situation that often doesn't make sense. If you're interested, google: politics of pain

Yes, undertreated post-surgical pain is affecting many patients. One thing you can do (that may be mentioned in those nice little illustrated pamphlets ) is contact/make use of the hospital's Patient Advocate. Also get a copy of the hospital's, or California's, Patient Bill of Rights.

Quote:
Since 2003 I have been taking the same medications for pain: Hydrocodone, Piroxicam and SOMA. No one has ever increased the dose, or asked me if I needed more and I have not asked thinking that my continuing degeneration and discussion of pain levels would have prompted an increase or change in pain medication.
Unless patients speak up, doctors assume that everything is fine, including the amount of pain medications they're taking/prescribed. In some cases, patients must initiate discussions lest doctors be construed as "pushing". We have to be our own advocates in this, and most other respects.
Google: talk doctor pain

Quote:
I thought methadone was only for drug addicts. I do not really know what it is or does. I think I will ask about it.
By all means, ask your doctor about it, and (in keeping with being your own advocate) look into it yourself. I will mention that, like all medications, methadone has its own side effects and risks. While it is an excellent longterm and long-acting medication for chronic pain, unfortunately it can also carry a stigma; many medical professionals who should know better still associate it with addicts/addiction as well. This is changing, but change is sometimes slow.
Google: methadone and methadone for chronic pain

Regarding a few items in your subsequent posts:

Quote:
Why don't they combine the Vicodin with the Ibuphrophen I wonder.
They do; the trade name is Vicoprofen. Ask your doctor.

When Ginnie suggested posting your MRI, I think she meant the interpretation/report. It may be possible to post the MRI itself, but I have never seen it (I have seen x-rays posted) and I don't know that it would be anymore helpful than the report. Also, you mentioned a lack of advice/responses to this thread. These kinds of posts & discussions usually occur in the Spinal Disorders & Back Pain forum. More folks with experience/knowledge/wisdom regarding matters of the spine may see it/respond there.

Lastly, your shared experiences, advice, and wisdom have been wonderful; thank you, and again, welcome back.

Doc
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Old 05-29-2012, 10:05 AM #29
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Default Re: another way toward pain management

I had to get another pain specialist, for a number of reasons. I wasn't getting enough help either. If you can try to find a pain specialist that also is a Board Certified Physiatrist. This is a "whole" body mind and soul kind of doctor. I not only got help with better pain mangement, she put me on hold for surgery till I am stronger, got me another referral for my ankle issues, and addressed my body on a cellular level. found her to be extremely compassionate, and educated beyond most doctors I have known. This training they receive is beyond just MD. You may want to see of you can find a doctor with this training. Just an idea.....ginnie
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Old 06-04-2012, 09:26 AM #30
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Quote:
Originally Posted by ginnie View Post
Good idea, get both of those to address your back issues, both fields of medicine. I did the same thing, and found them to be on the same page, so I knew the surgery was right for me. As far as posting the MRI. Jo*Mar, one of the moderators I would contact. I am horrible on the PC and still flounder around a bit. Should be able to click on one of the moderators names to ask her. May try posting on the front threads again, to get more attention on the how too's of this. wish I were better at it. There is a way to put the MRI up, and alot of people just write it all out like as list for others to read. Leesa is real good at this, and Mrs.D and Doc. Smith. If you have trouble getting directions, contact me and I will write to the modertor for help.
ACCEPT help from the church. Yes, very good idea. Even if this is hard and embarassing to do. We are all the human family and need each other. Let them extend their hands to you. Take care of the dogs etc.....
Do you have a side potty chair? or are close to bathroom? This may help those first days too. since yours is lumbar, you may want a walker as well. Mine was Cervical, so I just walked stiff and upright.
I used one of those gently sloping pillows to keep my back and neck straight.
I also did all the doctors told me to do....keep wound dry. There are bandages to put over incision site that will allow bathing after a time. They keep the incision site dry. Somebody can apply that to your back for you.
My wound was in the front of my neck so I had no issue with that.
Don't hesitate just to write out your MRI or CT report. Someone will help with that interpretation stuff. I also can look up what I don't understand and help you too. Once the language of it is understood, it isn't quite as scarry.
Do go for those two different fields of medicine, that really is the best way to feel at ease with your decision, when more than one doctor agrees on the same procedures. take care, I will be here, and so will NT ginnie
Thanks Ginnie, I will try to post at least the MRI and CT radiologist reports if not the image files. I did get a bit of (relatively) good news...they are going to have an orthopedic spine specialist and a neurosurgeon present at my surgery and evidently a 6-pk of residents as well! I do think now that no matter how much I learn about this or how many people I have holding my hand I will still be fearful. Maybe I could just take a very long nap after....perhaps they could put me in a coma for six months and just rotate my body so the muscles don't shrivel up and blow away! Wouldn't that be great...

Appreciate your encouragement so much.
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