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Old 01-26-2006, 11:01 AM   #1
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Exclamation Newbi post- please read. R neck/back/shoulder problems.

Hello everyone. I'm not sure where this post belongs, so if the moderators need to move it, that's fine. I'm a newbie.

In june of '03, I was a passenger in a jeep that was hit by a semi going about 45mph. We were stopped, waiting to turn left, when we felt that horrible crunch. Luckily we were belted in, but the entire back end of the jeep was pushed into my seat. I happened to be sitting with my feet up on the dash and my chair leaned back at the point of impact.

Today, at age 27, I have had 3 occipital blocks, 3 sets of facet injections, trigger point injections, and an epidural. I had almost 2 years of PT and trigger point injections before the more invasive procedures. An mri in '04 revealed bulging discs at C5 C6 area, but my current physiatrist doesn't believe that is the source of my problem. My symptoms are as follows:

Constant right side neck pain and sore scalene muscles, a deep burning in my back above the right shoulder blade, and in the mid back beside it. Basically the pain travels from the back of my skull, down toward the shoulder, and down the right side of my back. I have pain underneath my shoulder blade, and it looks different than my left. I think it is a winged scapula. I also have cervogenic headaches, very sore ribs on the right side (the serratus muscles (sp)) and tight right side chest muscles. I am currently seeing a chiro for PT, massage, adjustments, and accupuncture as well. Nothing has helped. Botox is now being brought up as a possibility ( it had been before, but was always put on the back shelf by the docs), as well as a facet rhizotomy.

I go through cycles of intense flare ups. I didn't know how my shoulder was contributing to it until the most recent flare up. Usually flare ups happen after an activity, sometimes it's as minor as wrapping presents, sometimes it's after a cleaning job, or doing laundry. After doing some research, my husband and I came to the conclusion that my scapula is winged, because all of the symptoms fit, and the activities that flare it up involve certain movements and postures. Of course my neck and shoulder are related, and once one thing flares up, everything else follows. Sometimes it gets so bad I can hardly move. Flare up or not, I am in constant pain.

In my research and my own medical file I have seen diagnoses of "facet disease," "cervical spondylosis," "neuralgia" But no one has ever been able to tell me exactly what is going on. I've heard I'm a classic case of whiplash that didn't heal from the Chiro, but he is so anti doctor, and promised me he'd heal me in 3 months- I've been there 2 1/2 months. I have seen 3 doctors, starting out at a leading local osteopathic clinic, and 2 separate physiatrists since the accident.

I have decided to see a pain pyschologist, as well as a psychiatrist, because I also struggle with anxiety and depression. My current meds are elavil (for sleep, possible nerve pain relief),cymbalta(pain and depression), fentanyl (patch form 25mg), percocet 5mg and valium 5mg. A lot of medication.

It's coming up on the 3rd anniversary of this accident, and things seem to be getting worse not better...I see my physiatrist next friday, and I will be going over the latest details since last month, talking about what to do next. I'm wondering if the Chiro is hindering- I've had a bad vibe there, for various reasons. I'm also wondering if anyone out there has any advice or words of encouragement. I feel like a shadow of my former self, I'm not the same person anymore. I'm too young to feel this way, and to be on so much medication. Can anyone relate? Help??

Last edited by moderator2; 01-31-2006 at 07:15 AM.

 
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Old 01-26-2006, 11:36 AM   #2
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Pebble Beach HB User
Re: Newbi post- please read. R neck/back/shoulder problems.

Hi and welcome to the board. I think the people that post to this forum can really relate to the way you feel. We have been thru ongoing medical problems. Here is my story so you know where I am coming from.

- 1988 - bulging discs in the lumbar area, traction 2 weeks
- 1994 - herniated discs in the lumbar area; surgery
- 1994 - diagnosed w/Parkinson's disease; treated to 1997 misdiagnosis
- 1995 - cervical stenosis; surgery
- 1997 - surgery lumbar area with instrumentation "flatback syndrome"
- 2000 - two (2) surgeries cervical area with instrumentation "kyphosis"
- 2003 - surgery of the left leg for blood clots, if surgery wasnt done would have leg amputated
- 2005 - Spinal cord implant to control pain
- 2006 - peripheral neuropathy of legs and arms from diabetes and spine not sure which was the cause
- 2006 - current problems include additional stenosis in the neck and lumbar area

The doctors are afraid to do more surgery do to prior surgeries. Feel I won't benefit from any mor surgeries. Pain has become a part of my life. Some days are better then others.

So I can certainly understand what you are going thru. I too have thought about seeing a psychiatrist to deal with the pain issues.

Good luck in whatever route you take. Keep us posted.

Allan

 
Old 01-26-2006, 01:46 PM   #3
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carol632 HB User
Re: Newbi post- please read. R neck/back/shoulder problems.

Hi, mrsaa and welcome to the forum. We're glad to have your here, tho I hate that you are having these kinds of problems.

I honestly think you are doing yourself no good at all by seeing a chiropractor, especially when dealing with cervical issues. Only the rare chiro is qualified for spine issues and after this long, I dont think yours is one who does.

If you haven't been evaluated by a spine specialist, you really need to do that next. Find either a neurosurgeon or an orthopedic surgeon (my choice) with a spine fellowship. That means that they work exclusively with the spine. You really need a current MRI to see where things stand with those discs. I honestly think it would be a mistake to see any other kind of medical professional until you have a solid diagnosis in hand. I have been on this road for 26 years, and with all I have read, and all I have learned, I would not dare try to diagnose myself. There have been times when I have been certain that such and such was wrong only to find out I was wrong!

I wish you the best of luck and hope you are able to get to the bottom of this soon.

Carol
__________________
2 lami's, 3 fusions
bone spur removal
cerv. fusion, 1 level
morphine pump

 
Old 01-26-2006, 02:20 PM   #4
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mrsaa HB User
Re: Newbi post- please read. R neck/back/shoulder problems.

Thanks pebble and Carol.

I am not a doctor, and anything I think, I talk to my doctor about. The winged scapula hasn't been diagnosed, but I do plan on bringing the possibility up to my physiatrist. I just want answers and I'm not getting them.I didn't go the chiro route on purpose for over 2 years, because I heard such bad things about them from the doctors. I tried it hoping for change, but realize it's nothing but wallet draining. I will talk to my physiatrist about a spine specialist as per your advice, Carol. I see him every month, and am very comfortable talking with him. The chiro is another story, I get a bad vibe, and they keep stalling with my request to send the records to my physiatrist. A current MRI is a good idea, since I seem to have worsened with time. Thank you for the advice, Carol.

 
Old 01-26-2006, 05:58 PM   #5
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carol632 HB User
Re: Newbi post- please read. R neck/back/shoulder problems.

You are very welcome. I do hope you will continue to post here and get to know us. This board is so good at offering not just advise, but friendship and comfort as well. I would love to follow you as you go on this journey and get to know you better.

Be good to yourself.

Carol
__________________
2 lami's, 3 fusions
bone spur removal
cerv. fusion, 1 level
morphine pump

 
Old 01-26-2006, 08:46 PM   #6
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mel1977 HB User
Re: Newbi post- please read. R neck/back/shoulder problems.

Oh wow. I got so sad for a moment-I was just reading my own problem-and so understand what you are going through. Though, mine is not related to any kind of accident, though oh how I wish it were, then I would know why atleast or how. Maybe we can kinda help each other out here. You are a bit further in treatments than I am though, I have only had PT, ESI, massage and a TENS unit. I haven't really been aggressive the past few months about my treatment as I could be. So, I guess I'll share my story. I was going to post here anyway cause I need help too. I am not sure if I will duplicate my story, but I thought posting on yours would be good so you knew there was someone else out there who is going through similar stuff.This might be long, so get comfortable-if you can. I am propped up in bed with my laptop and am on a heating pad, and have been on it for the past five hours.
Okay......
I am recovering from a two level fusion in my lumbar spine. I am not having much in the way of problems with that, thank goodness. I had the disks in L4-5 and L5-S1 removed in December 2004. I actually went on disability in June 2004 because of shoulder and neck pain. My back pain did accompany it though. I had an MRI before my surgery of my neck too. It showed a small herniation at C5-6, some degenerative changes at a couple of levels above it. I have according to the MRI loss of lordosis as well. Xrays didn't show any problems with my shoulder. I have burning pain from my waist up to the base of my head. Some times I get sharp muscular pain in the upper traps (connection between side of neck and top of shoulder), back of my neck, front of my neck. I can pinch the skin very lightly in the front and it is painful. Most of the pain feels like it is between the ribs and under and on the bones of the shoulders and scapulas. I have some growing sciatica in my butt and off and on pain in my legs, though that might just be chronic stuff I have to deal with, not horrible though. My feet hurt, I get pain on the lateral side of my left forearm and down the top of the arm (I used to have a pinched nerve, but it has resolved). There are so many spots.
SO, I did myofacial release and neck strengthening and it was great til I left. Then it just tightened back up again, same with massage. The tens was fine if I had just ONE spot that hurt, but with like fifty sore spots it was impossible to keep on. I used it for a week and it has been collecting dust ever since (anyone know if I can sell it? Sheesh, still paying the darn thing off!).
I did traction and ESI a while back, not much help. I just recently had Botox, and it didn't help. I was pretty upset. I was so hopeful. SO, then I went to a Rhuematologist to see if I had Fibro. While I had ALL the tender points, I was mostly asymptomatic for fibro. THe tenderpoints and fatigue are about all I have. I can work out and I don't hurt worse, but then again, I don't feel better either.
So, that was a NO. I just emailed the head of ortho at our university and he actually emailed me less than three hours later (how cool is that?) and unfort. he doesn't have a spine specialist/surgeon on staff right now, and won't until June. He recommended another dr, the one I work with and don't care for and was my first doctor with my initial back injury in 1999. I can't decide if I should just bite the bullet (and my ego) and see him again, or hold out until June.
See, I am in nursing school and simply can't miss. I am okay for the first hour of class and clinicals then the burning starts and just progresses. I have until July, when I graduate.
Motrin and Tylenol do nada. I take Zanaflex every night. I have percocet 5mg but I only take 1/2 of one. I get so tired, I hurt all the time. SOMETHING always hurts, burns, aches, whatever. I am only 28 and to be told by the last dr I saw that I just need to learn to live with it almost destroyed me. AND I have TRIED to. I am just not sure I have the energy to. BUt, I don't want to succomb to chronic pain either. I have to find out if there IS sometihing causing this. There HAS to be. I don't give up easily. We are young, there should be an answer. Most likely, if things progress this way, I will end up with Fibro and I am just not ready to accept that.
I saw a dr at work, a DO and one day he did some manipulation. See, he did a spine fellowship and they have a different way of looking at the body. Well, whatever he did helped me so much. I felt much better. It has worn off and I can't find one I can go to regularly. He said I was so knotted up he could work on me for three hours. My pelvis, pubic bone muscles, muscles of my breast bone, ribs, knees, hips-gosh so many spots hurt when he pressed on them. And though I was sore the next day(it is like being stretched, he didn't crunch me at ALL) I could feel a difference. Whatever I get or don't get from the next spine dr I see, I will try my darndness to find a good DO who does that manipulation(most are in private practice).
Jeeze this is long.
I sure hope you can get some help through all of this too, I know how miserable it is to live like this. My question often is:
How NORMAL is it for a 28/27 y/o to have chronic pain if there is no MAJOR damage? According to the drs I have seen too, that stupid little herniation ISN'T THE PROBLEM. well then, PLEASE, by all means tell me what is. I mean, what kind of problems cause constant muscular spasms, tightness, burning and aching in young people??? I wish to Zeus someone could answer this one teen question for me!!!! And you of course. If I find something that helps me, I will let you know as soon as I possibly can. In the mean time, try to rest as much as you can. Attempt to get rid of as many stressors as you can, take nice hot relaxing baths (though, just after it feels like the bath never happened). I live on a heating pad when I am home.
Please keep me updated on how you feel. There are people on here who understand and this board saved me when I was going through the problems I had over a year ago, and now I turn to them again now.

 
Old 01-27-2006, 06:04 AM   #7
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mrsaa HB User
Re: Newbi post- please read. R neck/back/shoulder problems.

Mel, my heart goes out to you. Thank you for sharing. It has been cathartic coming here, reading and posting- I've found out that I'm not alone. You are my age, and you're right, we shouldn't be fighting chronic pain the way we are. I am trying to become my own advocate. I am doing as much reading as I can, and learning to assert myself with those who are in charge of my care.

I've had the same types of treatment you've had- I own a tens unit too, I've had 2 different types of traction, sooo much PT. I was referred to a DO about 45 mins away, for manipulation, by my current doc, but my insurance denied it, because there are DO's locally. None specialize in the spine though, they are all family practices... I am also trying to get botox approved by my insurance, because if it doesn't work, it's a lot of money to throw away.

I use ice daily, my tens when I have a headache, icy hot patches along my shoulder, and of course, the meds. I have a hot tub that helps temporarily as well. I try my best to stay sane, and not stress over everything, but it's very difficult for me, and I know it takes it's toll on my body. But when no one has had definitive answers or diagnoses, and I'm so young, and feeling so old, I can't help but worry. My husband,who is usually my solid rock admitted to me last night that he's scared for me. He's always said we'd find the right doctor, we'd get this thing figured out, but he sees the pain I'm in, the changes in my demeanor, the cycle of it all. It's no wonder he's getting scared too.

Thanks again, to those that have responded. I feel very welcomed.

A.

 
Old 01-27-2006, 05:20 PM   #8
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mel1977 HB User
Re: Newbi post- please read. R neck/back/shoulder problems.

I sure hope the botox does help you if you get it done. I had most of mine inj into my posterior neck muscles and had the issue that the muscles did relax but in a way so that holding my head up to read, write, clean made the pain worse bc the muscles were so relaxed. It didn't help the traps at all, maybe if I had him inject more into that area there would be a better outcome. But, I just didn't get enough of a good outcome to do it again. Plus, I haven't gotten the bill yet so I don't know how much I owe. The RX for the Botox was only a fifty dollar copay, but haven't gotten the bill from the doc.
My husband, bless his heart has been with me since my first surgery and it is so frustrating for him to see me hurting all the time and not be able to help me. It gets to the point that he is afraid of my future, as I am too. I move around sometimes like I am eighty as well. My knees are horrible and my joints flare up if held in one spot for even five mins. This is just horrible!
I think you should call your ins company and tell them the reason you need to go out of town to see the DO. They might okay it then, or even have the DO call them and see if he can get them to okay it. I have no idea if ours will pay or not. I talked to the dr at work and he is working on a list for me of DO 's who do manipulation.
You know, we drove to my grandparents today, to St. Louis which from my home is an hour and a half. I was taking a percocet before we even got there at ten am. Just starts in my neck and flares out from there. Man this sucks!
Anyway, I am going to think about this dr and talk to my family some more (mom and hubby and his mom) and see what we can figure out.
Good luck to you and keep me updated.

 
Old 01-30-2006, 12:26 PM   #9
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mrsaa HB User
Re: Newbi post- please read. R neck/back/shoulder problems.

Mel,
Thanks for the advice. I, too, have upcoming appointments with my doc, a pain counselor and even a psychiatrist this week. Hopefully I can get pointed in a better direction myself... I have been doing so much research and want to be assertive,and agressive if I have to be, with my treatment. My phsyiatrist also specializes in neurology, and he's always been very easy to talk to and good to deal with. Hopefully we can get some things sorted out.

Last weekend, hubby and I had to go to Cleveland to pick my father in law from surgery- it's 4 hours from here and we had to be there by 10 am. There I am at 6 am popping a percocet like it's my breakfast I know how it feels- your trip to St. Louis reminded me of that. I will keep you updated mel, please do the same.

Last edited by mrsaa; 01-31-2006 at 07:21 AM.

 
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