Hey Folks,

Havent been on this forum in a while. Been hanging out in the pain management section for the last few months learning about all the medications I am having to take because of my problem. I will try to make this short. Im stuck in a small town medical system with a GP that doesnt know what to do other than feed me drugs.

In 2003 I had been in two major car accidents, one really bad one where I hit the steering wheel with my chest and rt shoulder after breaking the seat belt upon impact. Airbag didnt go off even tho I was going 40mph. Once I healed from this bad accident my neck symptoms would come and go but my shoulder and upper back, under the shoulder blade always hurt to some degree. Most often I just worked though it. One day I went out golfing and took a really big swing and I felt a horrible tear and then burning sharp pain under my shoulder blade. I quit playing and went home and hit the ice and heat routine. At this point the neck, upper back and shoulder were in pain 24/7 and it was much worse than it had ever been in. I took a week off work a stayed in bed. It was springtime and my allergies kicked in gear. Everytime I sneezed, sometimes 20-30 times a day, it felt like someone was stabbing me in the upper back between the spine and shoulder blade, the rhomboid muscles if you are familiar with them. After a week of this I went to the Dr. They did all the basics like Xrays and PT and conservative meds. Nothing worked. Dr the sent me to a Nuerosurgeon thinking I had a cerivcal injury since all the pain follow the nerves out of the neck. 6 weeks later I had a cervical fusion or ACDF at c4-c6 with a titanium plate. It seemed to help for a while but in the end it was really the increased post surgical meds I was on that masked the pain. I kept telling my Neurosurgeon that my original symptoms were mostly unchanged. He wouldnt hear of it. He basically told me that it was a function of my addiction to Norco. I was taking 1-2 ever 4-6 hours, hardly a major issue. I gave up on him and sought care elsewhere.

A month later we were able to squeeze myself somehow into UC Davis pain management clinic. This is a staff of nuerologist, orthopedics, nuerosurgeons and the like. They did a whole bunch of "nuero" tests on me and came up with the conclusion that I had a torn rotator cuff in my rt shoulder. Seemed odd to me at the time as how can a shoulder injury cause upper back and neck problems?? But I went along and they sent me off to a Shoulder Dr. He went into my shoulder arthroscopically and saw no tears but did see some bony spurs so he cleaned them up. In the end, no change. So, time for a new plan again. UC Davis was a 3-4 hour drive for me and I couldnt take it anymore. I need to try closer to home.

I went back home and sought out a great GP Dr to take the lead and get me back on track. At this time everything started to look good. He was on my side and had ideas. He changed my meds around to provide me with more pain relief and contacted a couple of "fix-it" Dr's here in town to see if the would see me. One sad ok. I went to see him and hew saw all kinds of problems with me physically. My right shoulder hung much lower than my left, my right shoulder blade "winged" or stuck out when I motion in a hand shake movement. He immediately scheduled me for a nerve conduction study. The EMG showed problems with two nerves, the long thoracic and the suprascapular nerve. He came up with the idea to send me to a PM Dr. that specializes in injections and treatment to take care of these nerves. Off I went, another Dr.

I saw this Dr, a highly reccomended fellow, and he was great. He put together a 5 point plan of attack that included Epidurals, Facet Joint injections, Medial Branch blocks, Radio Frequency Leasioning and perhaps even Botox injections. I should have mentioned that I have had several MRI's and CT's over this whole period. They did find two moderately bulding disks at t2-t4. So thats why we started off with the ESI's or Epidural Steroid Injections. They were inaffective. We then were to procede on to the Medial Branch Blocks in the Cervical Spine but this Dr left the practice to do full time anasthesia for our two local hospitals. The replacement Dr was no where near as nice or as sharp and he had a bad reputation for being a drill seargent but he at least did the Medial Branch blocks and they worked as intended. They gave me pain relief for about 12 hours. MBB's are the diagnostic test for doing RFL's or Radio Frequesncy Lesioning. So we scheduled the RFL and I was handed a pamplet about the procedure that explained how it would go down. The main key issue to me was pain control while they are doing the RFL because I have heard and read they hurt really bad. Right there in the pamplet it says IV meds for anxiety and pain would be administered. It also had a link to there website which had a FAQ on the procedure and it said the same this. That put me at ease. So I show up for the RFL and get prepped for the procedure. They put the IV in and I asked the nurse what meds we would be using. I like to know in advance. I think we should all know what they are sticking in our IV's. The Dr came over and its one that I had never seen before. Seems the other Dr couldnt make it, nice of the to not call me as this is the second time I have switched Dr's without notice. So now I am on my 3rd Dr with this PM clinic. He want on to say that he doesnt use any medications while doing this. When I started to protest he said, "I have done hundreds of these and even the 13 year old little girls got by without IV meds and we either do them with out meds or we dont do them at all". Nice eh? He would be doing major local anasthesia so I made the mistake of going thru with it. Oh my lord did it hurt. I found out what 10/10 on the pain scale was I actually tried to get up off the table to leave. I was strapped in. Hmm, wonder why. He tried to calm me down and he proceeded. Well, he was only able to do two of the planned 5 lesionings. He had failed to notice that my MBB's were done in a sitting position so the Dr could get the lower cervical areas. Because I was laying on my stomach he couldnt get thru the muscle and couldnt pull my arms done low enough to gain access. Im a big guy at 6'5" and 260lbs. There was no way he was going to get thru the muscle the way he set me up. He then asked me how my MBB's were done and I told him sitting in a chair. All this did was show me he didnt read my chart and prepare for me. He decided to quit right there. 2 out of 5. Yippee. The odds of RFL's working when you complete all of them are only 60-80%. Only doing 2/5 really kills the chances of success.

So here we are now 1.5 months latter. The RFL's he did get done didnt help at all. My GP who sent me there doesnt want me to go back because the original Dr he wanted me to see was gone but also doesnt have any other ideas other that to send me to another PM Dr and its been 2 weeks since I talked to him about it. Im stuck. I can barely function. I need help dressing. I can walk around the house or go shopping for about an hour and I am done. Right now, after typing this long account I am in terrible pain despite the massive amounts of meds they have me on.

Anyone have a clue what I should do. I wish there was some sort of advocacy center that one could call to get help. Im stuck and in a lot of pain and at 37 years old it seems like my normal life is done. Im going to go to the new PM Dr when it happens but I am frustrated that at this point, after all I have gone thru, dont have a diagnosis.

THoughts are greatly appreciated.

BilboCameron,

So sorry for what you are going through. I do understand pain with shoulder injuries, and how difficult to treat. If you were on the boards back when I joined, you would have read where I have had 8 spine surgeries, four were fusions with the last one being 10 levels. There have been herniations into the spinal cord, constant pain, and even was temporarily paralyzed. So, I'm making some recommendations to you, based on what I have experienced.

My first herniation into the spinal cord happened as I got out of bed one day. I knew ortho and neuro's were spine docs. Didn't really understand that I truly needed a spine specialist, being one or the other who had also completed a spine fellowship AND dedicated their practice to the spine. It has meant a major difference in the care received. Not that the ortho and neuros were bad, but as general ortho and neuro surgeon's, they did NOT spend all their time on the spine. I had never had any reason to contemplate that there were those who did this.

Realizing later they spend maybe 25% of their time on the spine problems we are talking about. Therefore, they spend time on updates in a broad field, whereas a spine specialist is the first to be up on and trained on the newest techniques and changes in procedures. My spine specialist and his staff are countinously getting updated training. The specialist is going to have more experience on the newer techniques and offer you more options such as the ADR's or the Dynses flexible fusion whereas the general will offer a fusion as the only option when other treatment fails.

What I found after the early procedures of tests, facet injections, epidurals, discograms, etc was that the general ortho & neuro tended to use the anesthologists in the hospital's to do the injections and tests. Now after one of them paralyzed me, I get frustrated at myself that I allowed a non-spine specialist to be invading my spine, but it was standard practice and I was a newbie to the problem. After I was paralyzed and I did not blame the doc nor the anestheologist as we know there are risks, but I was blown away when my doc who had been so supportive was suddenly distant once I returned for a followup to discuss the surgery he insisted was needed. I needed someone who would not hesitate out of fear that I might sue when I had never expressed any desire to take action against anyone, so I got busy with research.

During the research, found there were true spine specialists, so I got busy checking my states medical licensing data base and found that I could view the doctor's training, fellowships, publications, any suits or complaints lodged, their office info, whether they were truly spine specialists of if they did work on other areas of the body. Checking other web sites which register specializations, associations such as the AMA and others, I found some required a referral from another doctor. So, got all my films and reports together and set up a number of appointments, because even if they had all the training in the world, if they weren't going to listen to me, or answer questions, diagnose after they made an exam and reviewed films instead of taking another doc's initial diagnosis, or talk with me about whether he would deal with my pain and medications at all times or if he would refer me to pain management I would not be confident. I definitely wanted one who would explain to me why or why not new techniques I was reading about would or would not work for me if they were going to be talking surgery. I didn't want surgery and true spine specialists are surgeons, but not all push to jump right into surgery, and I did want to try all logical avenues before cutting.

It took 10-12 visits to find who I knew was the right one. Could have been lucky and found him the first visit and could have cancelled appointments. Instead, I found some who never looked at the films, but jumped right in with recommendations based on the test reports, even without doing their own comprehensive exam. I found some who had themselves convinced patients knew nothing and sure were not to ask questions, and found some who had allowed all of 3 minutes for the initial meeting. Believe me, it got discouraging, but on next to the last visit I made, hit a wonderful doc. Yes, he was a spine doc, but he quickly admitted after reviewing my films that my back was so bad that he would not touch it because he was not THAT skilled, but he had a new partner in the group he wanted me to see him. Came back a couple of days later and spent over 2 1/2 hrs with this doc. He read every film, did a thorough comprehensive exam, ordered more xrays different positions from any before, and then explained he needed to redo the facet injections. Terrified me, but he explained that he did all his own injections. He drew out what he suspected needed to be done, but he needed the injections and films to confirm measurements.

No problems with him doing the tests and he's been my miracle doc these last almost 5 years. All his fusions (3 for 3 levels as one fusion was broken in an auto accident) were successful. The 2nd fusion was with BMP 2 days after FDA approved it, as he had been training on it. He has used the gels to prevent scar tissue from becoming an issue, he's removed scar tissue from encased nerves from the first surgeries, has brought in special equipment when needed, we discuss techniques. Were it not for my spine specialist, I would not be walking today, and my pain is so minimal and even days of no pain, and this 10 level fusion was just barely 8 months ago.

Please consider doing web searches and finding yourself a true spine specialist. I do highly recommend that you find a true spine specialist.
I have to travel an hour away, and hopefully you can find a truly great specialist within an hour or so or your community.

Have had torn muscles and tendons, etc in the shoulder blade area after a wreck, and yes, it you can believe it is the back. It took 2 yrs of therapy and finally 6 months of nerve ending injections to retrain the nerves to quit hurting. I'm not big on PM most of the time as I choose to fix the problem instead of mask the pain, but everyone has to do what works for them. After two years of PT, tests revealed all had healed, and my ortho doc at that time explained that since the nerves had hurt for 2 years, they had "forgotten" that they should hurt only with injury, so had to be retrained. I got the shots every 2 weeks at first, and then got longer between shots; eventually no pain. Perhaps SOME of your pain could be a result of the injury taking a while to heal, and maybe your could discuss such possibility with your doctor.

However, when it came to my back, while I did not want surgery, I did not wish to medicate for the rest of my life to control pain. Plan on a long life and that just didn't work for me. Surgery took care of that problem. I'm not anti pain managment, I'm just a bit different on when I see it fitting for me.

Know this is long, but let me share what my spine specialist told me. I have numb toes now and those will never be normal again. My first docs who were not true spine specialists went through the injections, PT, etc, and not once did they inform me that by delaying surgery, especially when the pain level is signifcant, the more likely the damage will become permanent, and even if not, it will take longer to heal. He gave me the guide that if a compressed nerve is released or repaired within 6 months, there is excellent chance for full recovery, but it drops to 75 percent at 9 months and only 50 percent or less at a year or so. Heck, here I had been stuck bent at the waist and at a level 8+ pain for more than 10 months and then paralyzed when I learned this. I'm lucky that numb toes was all I got stuck with. So, please keep the length of time and the severity of your pain in mind before delaying finding a good spine specialist to take care of your back.

I keep that in mind, but still don't rush into surgery. This tough old bird was still trying to hold on this last time, waiting for ADRs to get out of trials, when my doc showed me my new films which showed significant slippage in less than 3 months. My doc had gone with my delays, other treatment but when he said we cannot delay longer, or the spinal cord would be severed, he was serious. Still we discussed the ADRs, etc and why they would not work for me.

Recommend you visit the spine universe, which the web address is provided in a post at the top of the threads in a topic "new info for lots of you" by BionicWitch. It's excellent, as are several more spine type sites you can find with good search words. Educate yourself, and become your strongest advocate. Docs are human and can't think of everything with every patient. I take a written list of questions I need answered, and can quickly scan them to ask things that didn't get answered in the first part of the visit.

Apologize for the length, but hope it will encourage you to seek out the best spine specialist you can find - one you will be as impressed with as I still am with my doc.

Oh, BTW, it was good that they had you strapped down. My spine specialists people use a number of extremely wide tape to strapped me (while I am awake) to the table when tests or injections are being done. That way, when there is pain such as when you are awakened during a discogram, you cannot move and cause further injury to your spine or nerves.

Best wishes and do let us know how you are doing.

Quitecook, thanks for the reply. I just wanted address a few of the points you made. You mentioned finding a "spine specialist" with in an hour or so away. Not even close to being possible. I live in far Northern California in a town called Redding. Im about 1.5 hours from the Oregon border. The closest "big city" is Sacramento and its about 3 hours away. Thats why I was going to UC Davis Med School Hospital in Sac because they were the closest major medical center that had Dr's that are on the cutting edge of medicine. I was, however, only able to get into the PM Clinic without a referral from an internal GP. My Wife was actually able to get further with them then the GP that I had at the time could. That showed me how little he worked on it and is why we moved on and got a new GP. With some Dr's, work on you file ends when you are out of their face.

You mention you dont care for PM. Trust me, I dont either. Im not going to, however, suffer in pain, and yes I mean suffer, while the Dr's around me figure out what to do. Remember, all of us are different and while you have had an extensive list of medical issues and endured them, you and I have a completely different constitutions and tolerences when it comes to pain. Some people need PM and some dont. I happen to be one that has a very low pain tolerance. Whats funny is I could cut my finger off and not care about the pain. Its the inner core pain, the spine pain that really kills me. I know you were not trying to come across as superior or "tough" but I just felt that I needed to say that. If you can get by without PM then great. Some of us cant. For some people PM is elective but for me it was absolutely mandatory. I would have litterally gone mad (not angry but crazy) if I dint have PM. I have reached pain levels where it caused me to scream, cry and contemplate suicide (long episodes of high level pain left under treated. Many Dr's use pain scales like 0-10. Even with adequate PM I hover around 4/10. If I got too active I can easily push it up to 7-8/10. Who wants to live that kind of life? I dont. I was a very very successful person in the line of work I did and it afforded me to be able to play Golf (a life long passion) 3-5 times a week. We took many vacations to wonderful places. I would much rather have that life back then have the drugs. Since this has happened I have touched my golf clubs and we went to Hawaii which was a nightmare for both me and my wife. PM has its place in medicine and I hope you belive that.

I have spent time over at Spine Universe. In fact, I have often printed out information from there and given it to my Dr's to help them understand that certain "conditions" match up to my symptoms and also to let them know that I have a very serious vested interest in all of this and Im not just along for the ride. Your recomendations to seek out a spine specialist is logical but a recent Dr. I saw along with a Physical Therapist thought that I may have problems associated with my shoulder blade and its relationship to my rib cage. Sure, this could be caused by issue of the spine but it also could be caused by a ruptured bursa under the shoulder blade where it rides on the rib cage. My current GP sent me to him this Dr and he was the one that sent me to the PM clinic Dr who quit and moved on to anasthesia. I believe he is a Neurologist by traning but he takes a much different approach then most Dr's do. He spent at least 2 hours with me on the 1st consultation. He was the one to point out the shoulder blade "winging" without me saying anything to him about it prior. I can feel my shoulder blade moving incorectly and poke out but I got laughed at by all other Dr's and it was alway dismissed. He did so many "nuero" tests on me and had me bending, as much as I could, like a pretzel. Most of all he believe in me. I can only see him by referral and when I asked my GP about going back to him he said that we should try to find someone to do the RFL first since that is what he had sent me there for anyway. Right there is where I get frustrated. Facet blocks and Lesionings are all temporary band aid solutions. The RFL may work if its done right, but it only works for somewhere between 6-12 months because the nerves grow back.

I guess what I need to hear is that whats wrong with me cant be fixed permanently by surgery or other methods. I havent heard this yet as I havent even been diagnosed.

Im going to go back to Spine Universe and the rest of the web and search for spine specialists in Sacramento. Im also going to proceed with my GP's quest to contact another PM Specialist who does RFL's and the like and see how that goes. I did get pretty good relief from the Medial Branch Blocks for about 12hrs but we have to be cautious with those results because everyonce in awhile I will have brief periods of reduced pain. Once I start getting active it all comes back. If I do find someone in Sac I guess Im just going to have to bite the bullet and make the 3 hour trip. I know I will be getting a different vehicle as my 2000 Ford Explorer is to bumpy and it kills me to ride in it. My Wife's car, a 98 VA Jetta rides nice but its way too small.

Thanks for your ideas. I dont mean to make excuses for why some of them wont work but its just a reality. There are some that may work and Im going to get on them. Its time to start demanding proper health care from my GP and if he cant deliver then I will move on and find someone who will. I going to start poking around for a spine specialist 1st. If he or she determines that its not the spine then maybe he or she will have a good reco for another Dr that specializes in shoulder issues. I wont go back to the "Shoulder Specialist" that I did see in Sacramento. He did the exploratory surgery for the Rotator Cuff tear but ended up only cutting some bone off. He wasnt a very good Dr. He had the nerve to say to me at the the follow up appointment that "I didnt think it would help you but it gave me an excellent chance to practice my technique". Thats a direct quote. I wont mention his name but I will say he was a 5 time Olympic Gold Medal winner at the 1980 Olympic Winter Games in Lake Placid, NY. No, I didnt ask for his autograph but I do have scars caused by him. lol

Once again, thanks. Sorry this post was long and all over the place. Its late, Im tired and I took my meds right before I started. Time to go to bed. :wave:

Hi again,

Do understand and certainly not saying anyone should or should not go to PM. Everyone has to do what is necessary for them. I realize that I am a tough old woman, and actually I was better able to tolerate some kinds of pain than my brother was and he was a no wimp special forces guy. We all have different thresholds and certainly I personally would use PM to help me out while getting the corrective diagnosis and repair.

However, some people prefer and accept PM for the rest of their lives versus rectifying what is causing a problem, if that corrective procedure involves any kind of surgery. It works for them, and that's okay if that's what they want. What I was saying was that being an analyst, for me personally, I could not accept taking medications and treatments for the next 30 or more years (as I said, I do plan on being around a while, if at all possible), only masking the problem. One, because we build up a tolerance and what if my pain surpasses what treatments could eventually do for me, because by then the damage to nerves would have become permanent and I would be doomed to total misery with no hope for relief. I did discuss the long term prognosis with the neurologist/PM doc I was sent to and I was thankful that he was truthful in answering my blunt questions about long term. No matter how much I did not want surgery, that prognosis of PM long term scared me even more. Every person has to make their choice.

Also realize that your location is fairly isolated. However, don't assume that all true blue specialists are only in major cities and big center hospitals. Most of the medical databases and especially state licensing databases will allow you to search not only by zip codes, but many allow you to list a city such as your own and then set a mile limit of miles such as 100 or 150 miles of your location. I found that there was actually a specialist in my own town, BUT I've threated to come back and haunt anyone who ever took me to my local hospital! So, no need to go to the local doctor because that is the lone hospital in the immediate area. However, if you don't fact that same problem, you may actually find a spine specialist near you. They usually will actually have offices in 2-3 smaller towns within a 1-2 hour drive as they want to serve smaller communities, want to live outside a major city and this way they can do that plus be the big wheel in their chosen profession. Please consider searching and reviewing doctor's credentials in that type of search, and maybe you too will find the very doc you need. BTW, my heart electro specialist and some of his partners, even though in a major city with a huge practice, travel 150+ miles to serve patients in the smaller communities on the other side of me. They share an office with a local doctor, and one of them goes each day, so that none of them go but every two weeks. They use the little local hospital for minor tests, but their patients travel to the city if heart surgery is involved. Doctors in a number of specialities also do similar arrangements.

Glad you are taking information you obtain on the web to the doctors. Some docs don't appreciate it, but when I meet one who isn't willing to learn or who resents patients being proactive in their own care, I know they are not the one I need to be staying with. Sounds like you intend to be active in your own care and that is excellent.

Didn't mention earlier regarding the spine specialist, but some people have a preference of neuro surgeon versus ortho. I didn't, and had seen both. My miracle doc happens to be an ortho surgeon and I could not find one better. He has brought in special equipment and operators from out of state to monitor my spinal cord during the surgeries when he has had to deal with the scar tissue from the earlier surgeries by the non-specialists. If you are open to seeing either, that may broaden your possibilities, because if they are spending 100 percent of their time on the spine, they are going to be totally trained.

Oh, and another thing that I believe has helped me a lot, is that my primary care doc is an Osteopathic doctor. I have Fibromyalgia, thyoid, asthma and other major health problems, but since the Osteopathic doc considers how each problem impacts the other and balances med changes to lessen any adverse impact one change might have on another problem, I've not had to suffer needlessly with anything. He was the jewel who realized what had happened when my shoulder was injured. The good thing about Osteopaths is that they are typically family practice type docs from birth to death, and according to stats most are located in smaller rural communities. So something else you might consider if you ever need a new primary doc. Mine works great with my spine specialist and my heart docs and vice versa. My osteopath tends to schedule more time with patients and certainly asks more questions and listens better than any primary doc I had in my younger years.

Thank goodness, with his and the spine specialists care, I am again maintaining my home and acre yard and flower beds, except for the mowing. I did use the push mower a few times, but it is too hot here to do that much push mowing, and the spine specialist does not want me to use the ride mower for at least a year. So, don't look for a doc to tell you nothing can be done - go positive and keep up the search until you find your own miracle doc.

Again, best wishes, and do hope you find relief soon.

QuiteCook,

To boil it down to a simple answer, I will not do PM for the next 30 years either!!! That is why I am so vigilant in finding out what the exact problem is. Thats why the title to this thread mentions that I dont have a diagnosis. I want out of this mess.

Im with you on bringing research with me to Dr's. I see it as a test. If they have a problem with me being proactive and if the do not let me speak my mind, well, it ends there. I have had Dr's put their hand up in the air as to tell me to stop talking. THat same Dr. told me there was nothing wrong with me and I needed to take an anti depressant and start excercising. He said all of this while refusing to even look at the MRI's and other tests that I had in my hand. He just wasnt right for me.

I think me and you are very alike in our approach but I have not found that "Doctor" that will take the time and look at the body as a whole. All my Dr's have treated my body with a compartmentalized approach. Take for instance the shoulder surgery. I told that Dr time after time that my chief complaint was pain in the upper back and under the shoulder blade yet he insisted on checking out my rotator cuff when there was little evidence to do so. It was at that point when I began to take the reigns of my care and started weeding out Dr's who did not fit my needs.

Thanks. If anything, you have affirmed that I just need to keep searching for THAT Dr who will GET IT. We (Wife and I) are doing just that. I appreaciate your help.

Take care.