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Chronic Pain-Doctor dosen't have answer/anyone else?

Started by ilovecoffee on 06/19/2010 1:24pm

Brief description of my story- severe herniated disc at L5S1 2 years ago, surgery after about 2 weeks of debilitating pain-Discetomy. Did not have immediate relief- did my walking, walking, water therapy, physical therapy- seemed to get better, then! Flare up 15 months later, advice from two surgeons to have a fusion or another discetomy- had mylogram, MRI, nerve root injections, physical therapy, pain meds, meds to help with chronic pain-nerve pain.
My current doctor I had a follow-up this week and a list of questions, and most of my answers were, we just don't know. I did ask if he thought I had a failed back surgery and he said I guess we could say that, since I still have pain. I have a lot of burning pain in my hip, twitching muscles in my legs, ankle and foot have numbness and tingling and sometimes my lower back is killing me. I think I have some scar tissue. I have decided not to worry about a Diagnosis and just be concerned with the treatment, and stay with this doctor and try to form a good relationship and let him get to know me. I have traveled around the last several months going from doctor to doctor and going to pain management for shots, and having tests....2 doc's telling me to have different surgeries and now my current doctor telling me that he does not think that is going to help me. I believe that he does not know why some of us have this situation after having a surgery that was supposed to help. I guess I am just one of those people that fall into that category. My advise for people that can get around, and don't have severed debilitating pain from a Herniation, is to wait as long as you can, because you do not know if you will fall into that category. I know there are plenty of people that have walked away with surgery having positive outcomes. I wake up feeling pretty good, really good on the weekend after I get to sleep longer, and as the day wears on, I get more and more pain. I am going to pace myself better, and try to realize that I will never be the same and some things I will no longer be able to do. It is very hard when I was once so active, and now I have to slow down and step it back.

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You aren't alone. I don't think its a failed surgery. If you had relief for a few months then its probably reherniation. And if it's reherniation it could be at the same location on the L5S1 or somewhere around it (on the same disc).

Now, the pain that went down your legs prior to surgery - Are they in the same spots this time? Note that there are 2 nerve roots opening out from L5S1 one is the S1 serve and the other is the L5.

I know this because I forced the doc to explain all this to me. Well, I had a discectomy in 2003 and have a reherniation now. Yes, in deep pain. But the prior pain went down on S1 and now its on the lateral side hitting L5, which goes on my hip/but, lateral side of calf , foot and toes. I blacked out twice due to the attack 2 weeks back and had 911 pick me up - twice!

A good doc, should be able to compare your old and new MRI and tell you -

1) what the differences are
2) how much of disc have you lost
3) is it worth having a discectomy or not. If you have or are going to lose a lot fo disc material this time then its not the right surgery since it wouldn't last long.
4) Fusion is an alternative. Doctors talk of 90% success rate, patients talk of 33% success. Doctors say you could be normal in 3 months, we have patients who have still been in bed for 9 months now.

I didn't mean to demotivate you with point #4, just that when in pain WE sometimes want the quick route to heal and might opt in for another surgery.

Take your time, do your research. Have you tried alternatives like an ESI?

How about acupuncture and/or homeopathy? Many believe in these but there are equal amounts who don't believe in it.

I got my first ESI when I was in the hospital 10 days back. It got me back to my foot. Yes, I wasn't able to walk. I am getting a booster shot on Thursday.

I also will get my first acupuncture therapy tomorrow.

Lots of water intake, veggies, LOW sodium diet... - helps

Some have had success with the DRX machine too.

You could also consult a doc at Mayo online if its within budget. I think onlines consultations with cleveland/mayo/JH are not covered by insurance.

all the best.

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Thank You - luvdodo
I did have a little relief after those 15 months, it seemed slow, but I think I did have it. I do have what they said is a slight protrusion from the disc L5S1. The pain seems the same going down the leg, not as intense as the first time. It goes from my hip, into my left thigh on the far side, traveling down the calf and into my ankle and foot. If I stand, walk, sit too long, aggravates it and then I must go lay down to rest. I know I have noticed my back pain more recently, and I told the doctor that when I went to see him, but I still did feel like it was more the leg than the back. I remember my first visit with my current doctor, he kept asking if my back hurt, and at the time it did, but it still seemed more like leg pain. I have a month before I go back to see him and I plan on jotting down a few notes, and I think your questions are good ones, for that I thank you. I know I have held off for 8 months or more, trying everything, not wanting to rush to surgery, of which I did the first time. The first time, I was in such pain, I should have gone to the ER, instead of waiting 3 days to see my primary, and then minimizing the pain. Although I did tell her that I could not sleep, but never really got anything for the pain, and an answer of waiting 6 weeks to do an MRI. I came home with more anxiety about the wait, and how I did not have the time to wait, and needed help now. I was moaning in bed at night, trying to get through the pain with ice packs and laying around, because I could not do a thing. Midway through this, I did go to the ER, and they checked my calf to make sure I did not have a blood clot, and they did give me some pain meds, and said follow-up with your primary physician.
I seen an ortho surgeon about a week and an half into the pain, and he did the MRI and the film showed and extrusion of 2 cm. When he told me I should have surgery, I said Okay, When? Today would be good. Well that did not work, I had to have some pre-op stuff done, and I ended up having the surgery to trim my disc at about a 2 week point. I know I rushed into it the first time, but literally think it was the right thing, my hip felt like it was burning a hole in the mattress when I would wake up from sleeping. Several times I filled the tub with cold water and just sat in it, and it felt so good. (Now I vision a hot poker in the tub of cold water.) I know after reading so much stuff over the last 2 years, that surgery is not always the answer, we would so much like for it to be. I did have and ESI, early November, and in Feb I had what they call Nerve Root Blocks, what is the diff? Do you know? The way it was described to me was that it is the same meds, just injected closer to the nerve root instead of in the Epidural Space. Maybe I should see if I could have another ESI. I read a little bit about the DRX machine. I guess I could always try a chiro, and see how it goes. I may consider the Mayo online consultation…..
Thanks for responding-will talk.

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You are right on the ESI/nerve block differences. For us, the nerve block typically works best. It all depends on how good the pain doc is and how/where he injects the medication. I am assuming your nerve block was under the guidance of a fluoroscope (pretty sure), I'd say try it one more time. The pain docs need to carefully understand , from the MRI, as to which side/corner of the nerve is being compressed.

Keep you hopes high. When I first had my herniation in 1998 , I suffered until 2003. Those 5-6 years made me feel older by 50 years. Then when it hit hard, I could not escape the surgery and I was painless for 7 years, did everything I wanted to do..Gym, playing with kids, shoveling driveways and decks filled from the snow storms. And guess what? I woke up with the re-herniation, without doing anything bad - nothing. I am still shocked.

I'm trying acupuncture tomorrow to see how it goes. Will keep you posted.

B/W.

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Hi

Since you asked about the acupuncture in the other thread, I've responded there -

http://www.spineuniverse.com/community/h...

Thanks.

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ilovecoffee,

When my L5-S1 disc was protruding, I went to see a chiro and he put me on the DRX machine for 2-3 times a week for months. At that time it was still experimental and insurance didn't pay for it. But now it seems that insurance is covering it. It did work, that isn't my problem anymore, but I no longer have that disc oozing out the side. Good luck to you and please keep us up to date!

Wendi

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I love Coffee makes a good recommendation. I would contact a chiropractor or medical doctor that treats using the VAX-D or DRX-9000. Both of these machines do a great job of relieving chronic back or neck pain. I had horrible Facet Joint pain and i was able to relieve it using the Vax-D. Hope this helps.

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John - I thought I saw your response to this post and had questions. Wonder where it went.

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Luv,

Is that Dr. John you are wondering about?

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I was referring to John Miller , who was referring us all to his site (in his posts) and he seemed to a physical educator (not a doctor).

But then the links to his site did not provide a solution :)

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Luv,

I think the "Dr." John was bumped from the site because of the continuous advertising he was doing in the boards and how insulting he seemed....like he was telling us that we have all these problems because we were lazy, but his ebooks would cure the world. That's fine, we are here to help each other, not berate or judge.

This site is all about helping and the boards are like a gift to us. The creators of this site wanted us to be able to communicate and share our experiences. AND they aren't charging us a penny to share with each other. I've talked with one of the creators about a chat room for us and they are talking about the possibilities of it. He told me what they envisioned when they built this site and I think they did a damn good job of it.

I kinda figured that Dr. John would get the boot because of his advertising. I've seen others get the boot for it too. Helping each other is one thing, but don't push crap in our faces to help yourself to our money, which we all don't have because of our problems.

Just my thoughts....

Wendi

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Well that was what I wanted to check with "Dr." John. He has posted a response to an article I had found and shared on this about disc regeneration and the future with this process.

He replied to my post that it was a false article which kind of surprised me. I wanted to find out more about the miracle exercises and how he plans our restoring all of our degenerated discs.

Having said that you are right about the advertisements. I am not sure if you are familiar with the IT world, but there's this internet search technology called Search Engine Optimization (SEO). The more reference you have of your site on "other" sites [ terminology: backlinks], these search engines like Google give your site a better search ranking :). Everyone wants to be on Google's 1st page ranking these days. I'm in this business and it's fun :).

I started working from office this week but pain has doubled in comparison to last week, still manageable. Sitting is not a problem, but sitting and driving the car is a problem is what I see. The constant switch from the accelerator to the brake is what's causing this (I'm guessing). Let's see what happens by the end of this week.

Hope you are doing well.

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Luv,

I'm sorry your pain has doubled this week. I know how driving can make the pain worse and I hope that next week will be better on you, should be just a four day week, right?

God bless you and keep you safe!

Wendi

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Thanks Wendi. Yes, its a 4 day weekend. But busy with packing bags for the family as they leave for 2 months and leave me alone for recovery:).

I had my second visit to the surgeon and he was happy with progress. I asked him for more PT and he agreed. So I'll try some more PT and see how it goes. So far so good, managed to do 2 miles the last 2 days. Still away for all meds.

Stopped acupuncture, could no longer afford it. Its like $600 a month. But continuing with homeopathy since its been working well and is cheap.

Hope you are doing well and are enjoying your long weekend.

Thanks.

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