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


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Old 11-22-2010, 10:39 AM #11
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I'm a little confused here. The original post/question was over 2-1/2 years ago, as was the last time that person was active on this site. Their decision & outcome is probably (hopefully?) long past.

That said, any kind of spinal surgery is so speculative. I'm very glad that most of the respondents here had good results from their surgeries, but on other forums, I have seen clear majorities of people who weren't so fortunate, and wish they had never had their procedures done. Some have gone through multiple follow-up surgeries over many years to correct earlier ones with no relief.

There is, and I spose will always be, the "What if..." conundrum. If you do get surgery, and it turns out badly, you may always wonder, "What if I hadn't?" and if you don't get surgery, you may always wonder, "What if I had?"...

I don't say this to scare anyone, but to urge anyone considering surgery, especially on the spine, to garner as much information possible, both pro & con, (especially success statistics & ratios) and make the best informed decision they can. Surgery should always be a last resort, subject to second (or more) opinions - it can't be "undone."

In my own case, I was in so much pain I was very willing to consider surgery. But my own surgeon advised against it (encouraging multiple opinions, and some were willing to risk it, always disclaiming, "no guarantees") because statistically, the number of people who were better off after that particular procedure was LESS than the number of people who were the same or worse. I didn't like those odds.

Instead, he advised pain management and natural healing. In time, the vertebrae (c5-c7) would fuse on their own, without the risk of doing more damage and causing more pain. Do I wonder, "What if...?" Sometimes. But I also wonder how much worse I could/might be if I had rushed into the "quick fix". I am still in a lot of pain, but some healing has occured, and as time has passed, other changes - some good - some not-so-good, but I honestly can't say, all things considered, that I regret my negative decision. One day, techniques may improve, and with them, the success ratios.

Relating personal experiences is good; I'm not so sure about making recommendations in cases like this - every case is so different, and as in this case, the numbers may be skewed. I would, again, urge each patient to ask and determine those kinds of risks for themselves.

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Old 11-22-2010, 05:55 PM #12
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Just found this thread, hope someone is about. I was fused Aug.30th C3-7 and the surgery worked for me. For the first time in 7 years, I have a good reduction of pain. I am reducing my morphine in stages through my PPP. This is a ruff surgery, but it is worth it in my opinion. Ginnie
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Old 02-09-2011, 03:46 PM #13
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When I first had ther fusion at l4-L5 it hurt like hell but seemed to help but 22 years later i'm rite back where it all started but in more pain then ever. Personally ask around make sure the surgeon gives you all the pros and cons I'm sure medicine has eveloved in the last 20 years but it still can't turn off my pain.
Quote:
Originally Posted by Suz91941 View Post
Hi everyone-

Could I pls get your take on spinal fusion for C3 - C5?

I have tried everything (acupuncture, PT, epidurals, neurotomy, medial branch blocks, and of course meds.) and nothing works. I am taking Vicodin for pain 1 every 4-6 hours and 2 before bedtime so I can sleep (which I'm not). I work fulltime and don't know how much longer I can stand the pain as I cannot concentrate on work. What a way to live! The only thing my Pain Mgmt Doc is offering is to do another neurotomy and I don't want to go through that one again. He thinks maybe it was incomplete. I am almost ready to have spinal fusion at this point but don't know if this would help my constant pain.

Thanks!

(Laminectony L4-L5, and Facet Joint Syndrome)
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Old 02-20-2011, 04:02 AM #14
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Quote:
Originally Posted by Suz91941 View Post
Hi everyone-

Could I pls get your take on spinal fusion for C3 - C5?

I have tried everything (acupuncture, PT, epidurals, neurotomy, medial branch blocks, and of course meds.) and nothing works. I am taking Vicodin for pain 1 every 4-6 hours and 2 before bedtime so I can sleep (which I'm not). I work fulltime and don't know how much longer I can stand the pain as I cannot concentrate on work. What a way to live! The only thing my Pain Mgmt Doc is offering is to do another neurotomy and I don't want to go through that one again. He thinks maybe it was incomplete. I am almost ready to have spinal fusion at this point but don't know if this would help my constant pain.

Thanks!

(Laminectony L4-L5, and Facet Joint Syndrome)
NO NO NO NO cervical fusion, u will be sorry
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Old 05-03-2012, 05:12 PM #15
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Quote:
Originally Posted by Suz91941 View Post
Hi everyone-

Could I pls get your take on spinal fusion for C3 - C5?

I have tried everything (acupuncture, PT, epidurals, neurotomy, medial branch blocks, and of course meds.) and nothing works. I am taking Vicodin for pain 1 every 4-6 hours and 2 before bedtime so I can sleep (which I'm not). I work fulltime and don't know how much longer I can stand the pain as I cannot concentrate on work. What a way to live! The only thing my Pain Mgmt Doc is offering is to do another neurotomy and I don't want to go through that one again. He thinks maybe it was incomplete. I am almost ready to have spinal fusion at this point but don't know if this would help my constant pain.

Thanks!

(Laminectony L4-L5, and Facet Joint Syndrome)
Hi, This is all a little new to me. I understand your frustration so well.

I just realized a few months ago that surgery may be appropriate for me or as they seem to say in medical circles I am "a candidate".

I have what I guess is called a Triple Major Scoliosis but my PT just told me I have both Idiopathic and Degenerative Scoliosis and I am now trying to figure out what that means. She also said that my three curves are all under 45 degrees and the problem really is in the lumbar spine (surprise!) where I seem to have three discs that have what she calls "Spondo" (Spondolisthesis). The literature seems to suggest that this is sometimes/often a result of untreated scoliosis over time (Gee, thanks mom!). I have also heard it said that our bodies were never really designed to accommodate our standing upright which is a strange thing to think about. Usually creatures opt for evolutionary changes that will enhance their survivability but if there were divine intervention that left us potentially suffering with spine problems that is pretty interesting (Don't want to open Pandoras Box, just wondering). I am sure most of us have at one time wondered why God is doing "this" to us. I know I have but watching videos of people with 80 percent curves and also terrible diseases silenced me. I guess it builds character but it sure does bear down on you sometimes.

A few days ago my right foot started throbbing with pain but there was no pain in that leg so that suggests that it is probably not stemming from my spine...is it just garden variety arthritis I wonder now. What fracking next!!!! It seems to come and go. It would be nice to have one dependable leg, one or the other.

A friend said maybe it is because that leg is bearing a heavier load because I am now limping on the left one due to lumbar "Spondo" which is also why I have these really horrid muscle spasms mostly at night. Last night for the first time I had the muscle spasms in the back of both legs. I was raking a lot in the yard yesterday (Aren't we supposed to get some exercize?). Maybe that was the result. Don;t know if you have the muscle spasms, if not consider yourself really fortunate.

I also take Hydrocodone (Vicodin, 5/325). You can take two if you really need to but be careful not to lose the theraputic effect by taking too many. Also there is this strange neuro loop where you actually feel more pain if you become dependent on the narcotic pain medications. I do not understand this phenomenon well but it is good to try to get a grasp of it to help yourself.

I also have SOMA, Clonezepam and Piroxicam that I can take if I need to. And I take a low dose aspirin every morning and evening. The SOMA and the tranquilizers tend to make you sleepy so not a good option for work or driving generally but really helpful at home. Also the SOMA used to help but not so much anymore. I have no idea why.

If you can get yourself to a pool swimming is amazing...it strengthens your muscles, is non weight bearing and is very healling. Depending on where your live, if you do not have a private or community pool the YMCA and some gyms have them, also High School Pools are often open for free and/or lap swim in the summer. I promise it will make you feel better. Keep moving. You don't have to climb mountains but by refocusing your attention you block the sense of pain and free endorphins, etc.

In my case it seems that I might not have to have a whole body fusion but maybe just lumbar. I meet with the Director of the Neuro Inst. that has ordered a lot of studies recently...I am looking forward to this meeting,,,sort of but it is scary. I find that a little dark chocolate, and either some warm milk or port help me to sleep (Until I wake with leg cramps that is!). My poor dog is very concerned...I start howling in the middle of the night and he looks at me like he has no idea what is wrong. He is A Great Dane/hound hybrid and has those intense hound eyes...he seems to be thinking, "Hey mom, I am the one that is supposed to howl, not you!").

Sometimes I have muscle spasms in my abdomen, in my hands, and once a couple of days ago at the base of my tongue! God, am I going to choke to death on my tongue because of muscle spasms related to my nerves! What a way to go! So you see, you are not doing too badly relatively speaking.

I was really disappointed in what the pain mgt doctor I saw told me also. I do not understand it. Finally he told me that after I have all the tests and see all the physicians I am scheduled to see he wants me to come back and bring me the "studies" and reports and then we will decide what to do about my pain. It is very frustrating when your pain grows deeper with every month that passes. A couple of glasses of red wine at dinner helps also and sometimes a sleeping pad and if you have a TENS unit.

If you have not read through all the posts on the various websites where people address and discuss these issues you should think about doing that. I have found it very helpful even though there is an understandable degree of complaining that you have to muddle through. People need to vent and it is sometimes hard to hear over and over but it is part of sharing our stories and bringing them to life. I actually download the posts and go through them in WORD and edit out what is not relevant and maybe highlight what is. I have found this really helpful and I can go back to these documents in my own files for reference.

You might also want to see a different pain mgt doctor for a second opinion. Unfortunately, because of the serious problem with the misuse of drugs and inappropriate writing of perscriptions on the part of some doctors the pressure is on responsible doctors to not prescribe strong pain medications.

I have also realized that for me Acetemenaphen (sp?) does absolutely nothing for me but Ibuprophen does help. A friend said it is because the later has anti inflamation properties. Anything that can relax you and your muscles and reduce inflamation is probably going to help you and you may have to develop your own combination of therapies until you sort through the surgery question.

I have noticed that several people have said that surgery is not done to relieve pain but to address symptoms and halt progression, etc. We have to ask ourselves how much pain we are really in, what can be done to control is without surgery and remember that there is no going back once it has been done. It is a lot to think about.

Finally, you might want to consult another surgeon for a second opinion. If you are in the LA area you might consult with Nitan Batia at UC Irvine or David Fish at UCLA (He has office hours in Santa Monica and I think he is on the faculty as well).

Keep the faith!
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Old 05-04-2012, 05:14 AM #16
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Quote:
Originally Posted by skygardener View Post
Last night for the first time I had the muscle spasms in the back of both legs. I was raking a lot in the yard yesterday (Aren't we supposed to get some exercize?). Maybe that was the result.
Yes, we're suposed to get some exercise, but in moderation.

Quote:
... Also there is this strange neuro loop where you actually feel more pain if you become dependent on the narcotic pain medications. I do not understand this phenomenon well but it is good to try to get a grasp of it to help yourself.

I also have SOMA, .... Also the SOMA used to help but not so much anymore. I have no idea why.
It's possible to become tolerant of, and/or dependent on, SOMA and/or Clonazepam too; it could be the same effect you've just described. It's also possible that you're experiencing a rebound effect of one, or a combination, of your meds.

Quote:
The rebound effect, or rebound phenomenon, is the tendency of some medications, in sudden discontinuation, to cause a return of the symptoms it relieved, and that, to a degree stronger than they were before treatment first began.
http://en.wikipedia.org/wiki/Rebound_effect
Several of the symptoms you've described could be ascribed to medication rebound or dependence.

Dependence, in and of itself, is not necessarily bad, and is not restricted to pain medications. It's a tradeoff for the lessening of suffering and improvement in quality of life for many people with chronic conditions.

Doc
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Old 05-19-2012, 10:39 AM #17
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Quote:
Originally Posted by Suz91941 View Post
Hi everyone-

Could I pls get your take on spinal fusion for C3 - C5?

I have tried everything (acupuncture, PT, epidurals, neurotomy, medial branch blocks, and of course meds.) and nothing works. I am taking Vicodin for pain 1 every 4-6 hours and 2 before bedtime so I can sleep (which I'm not). I work fulltime and don't know how much longer I can stand the pain as I cannot concentrate on work. What a way to live! The only thing my Pain Mgmt Doc is offering is to do another neurotomy and I don't want to go through that one again. He thinks maybe it was incomplete. I am almost ready to have spinal fusion at this point but don't know if this would help my constant pain.

Thanks!

(Laminectony L4-L5, and Facet Joint Syndrome)

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.
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Old 05-22-2012, 03:54 PM #18
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Quote:
Originally Posted by Suz91941 View Post
Hi everyone-

Could I pls get your take on spinal fusion for C3 - C5?

I have tried everything (acupuncture, PT, epidurals, neurotomy, medial branch blocks, and of course meds.) and nothing works. I am taking Vicodin for pain 1 every 4-6 hours and 2 before bedtime so I can sleep (which I'm not). I work fulltime and don't know how much longer I can stand the pain as I cannot concentrate on work. What a way to live! The only thing my Pain Mgmt Doc is offering is to do another neurotomy and I don't want to go through that one again. He thinks maybe it was incomplete. I am almost ready to have spinal fusion at this point but don't know if this would help my constant pain.

Thanks!

(Laminectony L4-L5, and Facet Joint Syndrome)
Hi, I tried everything you did but acupuncture. I was 47 at the time and had the best job of my life. I talked to several people who had spinal fusion and they had great results, so i thought why not. I wanted to get back to work as soon as I could. I had c-5-6-7 plated, after the operation I had more pain than I ever had. After about three years of all kinds of pain meds my pain mang. Dr. suggested a spinal stimulator, well that only stayed in for about an hour. It was stimulating my legs, I had neck and arm pain! I went to see three different spine specialist and not a one would operate again. So now wear a fental patch and take oxycodone, they take the edge off the pain but I don't know the last day I did not have pain! I don't know what to tell you but spinal fusion is not allways the answer, I wish I didn't have it done! All the best to you and yours!
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Old 05-22-2012, 04:15 PM #19
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Default Hi Suz

I cannot tell you no, not to do this. Each case is different. What is important is that you go for quite a few different doctors, including a neuro surgeon. What you MRI says, usually is the deciding factor. It helps if you research all the words in your MRI. I had a failed fist surgery at C6-7. I had the domino effect, but was not told at the time of my first fusion that more was wrong with my neck. NOT informed. so I had a second C3-7. Surgery can and does work. It is not a blanket yes or no. It is based on the severity of your condition. I am much better, with no shooting pain down the arms. I am not perfect, the surgery WAS horrible pain wise, but I am glad I did it. So many things factor into your decision. That education is the best thing to arm yourself with. If your MRI says "mild" "moderate" perhaps this surgery isn't the best idea. However if it says the words "serious" or "accute" or "severe" then you are getting to the point you need further investigation to see if surgery is a right course of action. Be your own best advocate and ask all the questions you possiblly can. Find out the condition of the verterbre above and below the proposed surgical site. Those vertrebre need to be healthy and strong to support the hardware. Let me know if you have some questions, I will try and help you. surgery can and is something to think about, and good outcomes can happen. It did for me. ginnie
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Old 05-28-2012, 02:52 PM #20
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Smile Seeking input on first lumber fusion

HI,

I originally posted on NeuroTalk about three weeks ago but only two people responded to say "hi" and "welcome". I do not know why no one else had any advice, but maybe I posted to wrong thread.

Anyway, since you had lumbar fusion I wondered if you could advise me at all. I need fusion on I believe L2-L3-L4 and one other, maybe S1, need to look at the radiologist report. I have triple major scoliosis (progression is under 40 and I think stable). I also have spondolisthesis diagnosed in 2011. I believe this in in lumbar spine and worst in two discs. I have a lot of tightness in my low back when I try to do anything more than 20-30 minutes. In January I started limping and this really scared me and it hurt. I learned that this is related to the lumbar spine issues. I also began to have really terrifying muscle spasms in my legs (both, but mostly the left leg where the limp is) and even my abdomen). This also is evidently related to the body trying to compensate for the pathology.

I was told that I should have the fusion done by Dr. Sigurd Bevard at UC San Francisco and that there were only two surgeons in the country that I should ask to do the surgery. I think the other is at the Cleveland Clinic. I wondered if anyone has gone to Dr. Bevard. Also, I sent an email to Dr. Nitin Bhatia at UC Irvine and he replied saying he wants me to come to consult with a spine surgeon they recruited from UCSF who worked with Dr. Berven there. Since I live in Southern CA getting to San Francisco would be more complicated than getting to Irvine (Although more fun!). I would go by train so I could lay down. If I lie on my back I still have Sacral pain. Only laying on my side offers relief. Pillows are wonderful!

Also, I really have no one at home after so will need to manage by myself (unless Medicare would pay for someone to visit a couple of times a week and maybe for physical therapy). Has anyone managed on their own following this surgery? I do have my two dogs to help me (A Great Dane and an Anatolian Shepherd). :-)

I wonder what it is like to have 4 discs fused? I wonder how much post op pain there might be and how long it would be until I recovered. Would they put some sort of brace on me?

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.

Also, I went to an Anesthesiologist recently and he told me that the only thing they could do for me was given me a cortisol injection. I did that once a few years before and not only did it not help at all but the doctor doing the injection told me he did not feel comfortable doing it because of my curved spine.

Only once was I given enough pain medication and that was at UC Irvine in 2009. I wonder if anyone else has had this experience with pain management. They give you these nice little illustrated pamphlets that discuss how they understand the role of pain alleviation in healing but it seems that the application of that philosophy is very subjective.

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. 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.

Any thoughts or advice would be deeply appreciated. Thank you.
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