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Old 01-21-2013, 01:46 AM   #1
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Anyone out there? please help!

I'm really hoping for some feedback and understanding from people who have been where I'm at in some way or another. I apologize ahead of time for the lengthy post. I have a very supportive family and husband, but with a chronic pain condition, I believe its truly difficult to understand until you've been there and are going through it. My issue began within days of my daughters birth, which was by c section, but all docs say that has nothing to do with any of my issues. It began with severe right shoulder pain (back of shoulder), &within the days the pain had spread to the whole shoulder, halfway down right arm, under armpit, and scapula. I also list almost all user of the right arm, only being able to lift it between 45-90 degree angle and with extreme pajn. Ive NEVER felt pain like this in my entire life. I'm in years almost daily because of it. I feel as if it has consumed part of me. So here we are, six months later. Two MRI's, a half a** EMG, months of Piratical therapy with no improvement whatsoever, medications (only tried what I'm on now),& an ACDF surgery that did nothing but cause more pain and give me false hope. Sorry to sound like such a Downer. I'm just SO frustrated that I can't get a strait answer out of anyone why this had happened and how to fix it. I am farting another EMG done on 29th, which I will be more aware of what muscles are being tested ect. Thank you ahead of time for any replies. Has this happened to anyone? Anyone you know? Any ideals? Any help would be greatly appreciated

 
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Old 01-21-2013, 07:15 AM   #2
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Re: Anyone out there? please help!

Sorry for your pain, but there is not enough detail and timeline for us to comment on very much. All I can suggest is, have they looked at your shoulder as a contributing source of your pain? Nerves can be significantly impinged there also.

In addition to my cervical problems, I've had rotator cuff surgery and general shoulder decompression for moderately severe arthritis throughout. Various doctors and surgeons debate whether my continuing shoulder and arm pain is caused by 90% neck-10% shoulder to 60% neck-40% shoulder. They are also at odds over what PT and activities I should do, or should be avoiding.

Your increased pain raising your arm in just the 45-90 degree range is consistent with a shoulder/rotator cuff problem, as well as with cervical nerve impingement at several levels.

 
Old 01-21-2013, 09:25 AM   #3
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Re: Anyone out there? please help!

Thank you for your reply. I'll give stome more detail. Like I said, I had my Daugherty in July 2012, 2 days after her birth my right shoulder began to worse than my c section incision. By the time we got home 3 days later the pain had spread throughout the shoulder, scapula, underarm. The first MRI I got was in August 2012 of the cervical spine, which showed; spondylotic changes, c4-c5 spur with right lateral recess stenosis&neural faraminal narrowing. C5-c6 spur, right sided bulge. C6c7 left sided bulge, focal thrall sac deformity in c7 nerve root. I'm a little unsure of some of the terminology. I had another MRI OF brachial plexus w contrast. Which showed normal brachial plexus. Also showed patchy edema in the Infraspinatus and teres minor. The first physical therapist I went to written he did testing, thighs two muscles weren't working atty all. I know three suprascapular nerve supplies to thoughs muscles. The emg I had was not very thorough, that's why I'm having a repeat one with a new doc on the 29th. I had ACDF on c4-c5 on Dec.13th 2012, which helped nothing and only had caused more pain. Hope that helps so maybe someone can relate or have any ideas. Thanks

 
Old 01-21-2013, 10:12 AM   #4
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Re: Anyone out there? please help!

The "c4-c5 spur with right lateral recess stenosis&neural faraminal narrowing. C5-c6" is consistent with your arm and shoulder pain. And this is the one level fused last Dec 13. It takes time for inflamed and damaged nerves to heal. The operation can make it worse in the short term. Some very luck people do get very quick pain relief, a significant minority never get any net significant pain relief. You are just now entering the time period when hopefully you will start to feel slow, but steadily increasing relief which can continue over the 6 to 12 months. A lot will depend upon how you take care of yourself over the next year.

Your doctor should have told you that the ACDF surgery was primarily to stabilize your neck and prevent further nerve damage. Pain relief is hoped for, but is not the primary purpose of most neck operations.

I hope your next EMG shows that you are on a path to pain relief. Though it is more likely to show little, one way or the other.

 
Old 01-21-2013, 11:40 AM   #5
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Re: Anyone out there? please help!

Quote:
Originally Posted by Daffydolphin View Post
Sorry for your pain, but there is not enough detail and timeline for us to comment on very much. All I can suggest is, have they looked at your shoulder as a contributing source of your pain? Nerves can be significantly impinged there also.

In addition to my cervical problems, I've had rotator cuff surgery and general shoulder decompression for moderately severe arthritis throughout. Various doctors and surgeons debate whether my continuing shoulder and arm pain is caused by 90% neck-10% shoulder to 60% neck-40% shoulder. They are also at odds over what PT and activities I should do, or should be avoiding.

Your increased pain raising your arm in just the 45-90 degree range is consistent with a shoulder/rotator cuff problem, as well as with cervical nerve impingement at several levels.

 
Old 01-21-2013, 11:57 AM   #6
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Re: Anyone out there? please help!

What exactly caused your left arm function? I really appreciate all your input, its been very helpful. Do you not think EMGs are very useful? The Neurosurgeon told me that 99% of his patients have complete pain relief immediately following surgery. when I didn't and wad in more pain he blamed it in me being an addict, he dosen't believe in chronic pain medication. when I called to tell him I was in more pain he called Me into his office that day to give me the"you know what pain medication does to your life..." Lecture. That was six days post op and he told me I should be feeling great. I all him if he'd liked or even listened to my history and he informed me that his job was to do surgery, not research on his patients. He said I'm reased to do what ever I want. Lift what I want do whatever I want and I'll never have to see him again. Its been a little over a month. I'm frustrated. So that's that

Last edited by FHL7410; 01-21-2013 at 12:01 PM.

 
Old 01-21-2013, 12:02 PM   #7
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Re: Anyone out there? please help!

Quote:
Originally Posted by FHL7410 View Post
What exactly caused your left arm function? I really appreciate all your input, its been very helpful. Do you not think EMGs are very useful? The Neurosurgeon told me that 99% of his patients have complete pain relief immediately following surgery. when I didn't and wad in more pain he blamed it in me being an addict, he dosen't believe in chronic pain medication. when I called to tell him I was in more pain he called Me into his office that day to give me the"you know what pain medication does to your life..." Lecture. That was six days post op and he told me I should be feeling great. I all him if he'd liked or even listened to my history and he informed me that his job was to do surgery, not research on his patients. He said I'm reased to do what ever I want. Lift what I want do whatever I want and I'll never have to see him again. Its been a little over a month. I'm frustrated. So that's that

 
Old 01-21-2013, 12:28 PM   #8
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Re: Anyone out there? please help!

I would see if your primary care physician will help you out with some pain medication at least until this is figured out. If not, then ask to be referred to a specialist for both your shoulder and your pain. It's like opening up a can of worms, but people in pain will go to extraordinary lenghths to quel it. I see a pain specialist monthly, my primary care as needed, and a surgeon as (hopefully not) needed. all of these doctors know of each other and communicate regularly in order to provide me with the excellent care I truly appreciate. I wish you the best of luck,
Sean

 
Old 01-21-2013, 12:42 PM   #9
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Re: Anyone out there? please help!

Ido hsve a pain specialist that ive seen for four months now and a primary. Like yours they are I'm constant communication. I have a physical therapist and im going to see a psyiotherapist(I think that's what he is called) He will do all testing, pt, and pain doc will do all meds.
Thanks for your reply

 
Old 01-21-2013, 12:53 PM   #10
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Re: Anyone out there? please help!

Sorry for all the typos, I guess the Swype on my phone isn't as accurate as I thought
I have been taking medication for the issue since it began in July. I take percocet10s, one every for hours, ibuprofen 1200Mg daily, ganapentin900 Mg daily and others for bipolar disorder. All of these just make our so that I can somewhat function for the day. I hate to take all off this and am unsure of other options.

 
Old 01-21-2013, 01:26 PM   #11
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Re: Anyone out there? please help!

My shoulder and arm problems are mostly from severe neural foraminal stenosis at 2 cervical levels, and to a lesser extent moderately severe osteoarthritis in my left shoulder area. Other problems in my cervical area may also be contributing.

EMGs results depend upon the skill and experience of the tester. If it shows a problem with a nerve, then it is 99.9% certain you have a problem with that nerve. EMGs miss things. If the nerve is not exhibiting a problem at the moment of the test, it looks fine. My first EMG showed absolutely nothing wrong.

I do not know what to say about your surgeon !?*#?!. I will let others who have had a single level ACDF respond. You can also look for postings/stories here at Spinal Cord Disorders or in the forums over at spine-health. An often quoted expectation about pain relief after spinal fusion is: 1/3rd get good pain relief, 1/3rd get very little change, and 1/3rd get worse.

I know results, recovery, pain varies greatly by the exact surgical situation and the patient's age and overall spinal and general health.

I am 64, and putting off cervical surgery as long as possible. I have seen 3 surgeons. My surgery would involve fusing (ACDF) 4 or 5 levels plus other procedures in 1 or 2 surgeries. I was told there was between a 25% to 40% probability of a net significant pain reduction, but a greater probability of significantly more net pain after a miserable 6 to 18 month recovery period (1 or 2 surgeries). All 3 surgeons said, if it was them, they would not voluntarily have the surgery.

Last edited by Daffydolphin; 01-21-2013 at 02:08 PM. Reason: Addition

 
Old 01-21-2013, 04:28 PM   #12
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Re: Anyone out there? please help!

I definitely jumped into surgery thinking it would fix all my problems and that I could get back to my life with my new baby. I only saw one surgen, looking back I definitely would have done things differently, but what is is. I REALLY appreciate all that you've told me, you've helped more than you'll ever know
Do you have a lot of pain? What are the limitations of your arm?
Thanks again. I'll take a look at the spinal cord disorder and ACDF boards.

 
Old 01-21-2013, 04:32 PM   #13
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Re: Anyone out there? please help!

I definitely jumped into surgery thinking it would fix all my problems and that I could get back to my life with my new baby. I only saw one surgen, looking back I definitely would have done things differently, but what is is. I REALLY appreciate all that you've told me, you've helped more than you'll ever know
Do you have a lot of pain? What are the limitations of your arm?
Thanks again. I'll take a look at the spinal cord disorder and ACDF boards.

 
Old 01-21-2013, 04:57 PM   #14
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Re: Anyone out there? please help!

hi FHL-

Your doctors have FAILED you miserably. That surgeon who told you 99% are helped/cured, i dont recall from your post which lie he proclaimed. and to imply you are a drug addict because you are in pain, you physically SUFFERING-what part didn't he get i do not know. But i will tell you they ALL do that(doctors)when their treatment/surgery does not work-they twist it around and somehow it's your fault-the old "you just wanted me to give you narcotics" or "you are a drug addict" or"pain medicines never work", and on and on. My PM told me these doctors refuse to educate themselves.

My PM told me their are many reasons people have pain; the most common one being post-traumatic, and then there is pain as a result of no trauma but can become severe enough that one will seek out medical help and most are the type who never evan go to doctors. The minute you mention pain now a days(and you can thank the war on drugs and the heavy hand of DEA=you will have a hard time fining a legitamate doctor to even listen to you. They are just not comfy. But there are plenty of good Specialists out there you will find one too if you are persistant and dont ever give up.

I came upon my PM due to traumatic injury which left me in indescribable horrible pain, and before I found him I was told similar rediculous stuff-and i just gave up and was ready to put a bullet in my brain-but my husband would'nt have any of that so one thing led to another, any how thus my getting an apt with whom was the best around.(I came to find out later-God answered my prayers)

Well to make an already long story short this man saved my life. he scoured over all my records/tests tried me on numerous drugs til we found what helped best; and not just narcotics-2 of the prescrived meds are narcotics and the other 4 are not; he also has me on regimen of essential minerals/vitamins/aminos/omega 3-have cut out all preservatives and glutens an dairy. First I was able to get out of bed and shower by myself, then , make dinner for my family, sit thru a movie. go out to a movie! things you take for granted.

I do everything my PM asks and my pain is really managed well' as long as i dont over do it and remember-my body has permanent injuries and i must take care of it as per my PM Specialists insrtuctions. My PM told me that it is absolutely criminal to prescibe any narcotic pain medicines without also supplementing the patient with minerals/vits and the others i mentioned-cuz pain meds deplete our bodies of these so we must supplement-and it is impossible to get the minerals we need from the food we eat because the soil we grow in has been depleted of the minerals we need-so we must supplement these essential-and when i say essential I mean we cannot be healthy without them-i-this all true-I have the best Pain Specialist in the world I think.

I could go on and on about what he has taught me and how well my pain is managed; i have bad days; but that's how pm goes. If you want to read somethings that are interesting by a Dr Joel Wallach look up "dead doctors dont die" Good Luck friend.
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Old 01-21-2013, 06:11 PM   #15
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Hi FHL

I see you got a post in I had not read while I was composing my last one. Glad to read you seem to have a good group of docs, other than the surgeon. Hopefully they can better control your pain while you look for a complete and good diagnosis.

I had a couple very rough years while having a useless operation, lots of useless injections, and months of harmful physical therapy. All the while trying to get an accurate diagnosis. A test that help put the puzzle together was a myelogram with contrast CT. Now I have a good PM Dr. and pain program that includes narcotics, safe helpful PT, appropriate restrictions on activities, and nutrition supplements. Pain is controlled enough now that I lead a reasonably normal retirement. I just have to be careful in what I physically do. Left arm is pretty useless. I can pick up and hold a glass of water in it, but not drink from without making a mess. I have a series of light exercises I do to keep range of motion and some muscle tone. Fortunately, it is all on the left side sand I am right handed.

Hopefully you will still get benefit from your ACDF surgery while you and your doctors figure it all out.

Your very welcome, glad my input might be helpful.

 
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