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  • hey rohr
    maybe those questions could be directed to someone like Dr Hey...
    maybe you could e mail Dr Hey and ask him if he has seen it before,
    how often...etc...
    he is one surgeon who might be interested in it...

    it will not be the first theory in medicine that did not prove to be true, nor
    the last...
    more and more, i look at theories in medicine with a doubtful eye...

    jess

    Comment


    • Dr. Hey is done with me. He cancelled my appointment a couple of years ago without explanation. I don't think he'd want to hear from me for sure.
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

      Comment


      • sorry rohr...i wasn't aware of that...

        jess

        Comment


        • Surgery Update, etc., etc...

          Well, shoulder surgery is exactly two months behind me. Honestly, it was the easiest surgery I have ever had with the longest recovery period. How paradoxical! So what they found:
          Lots and lots of red and inflamed cartilage, lots of thick bands of scar tissue (frozen shoulder), and the upper bursa being packed with scar tissue instead of the nice clear fluid that's supposed to be in there. My upper bicep tendon looked pretty good, just a little inflammation in one spot. So I got to keep it intact. YAY!

          What was done: removed upper bursa, cleaned out and debrided the scar tissue.

          I woke up from surgery in NO PAIN because of the brachial plexus nerve block. Doctor came in and explained to me how he was going to fix the HAGL with an open incision and bone graft if I start dislocating. That is super incentive for me to work really hard at my PT and get STRONG!!! My range of motion is already in the normal range for people with normal mobility, YAY!! It improves daily and I am able to use my arm "almost" to its full potential. I can't hang from it, yet (Yessss, I had to try that out when we took grandson to the park). It's not strong enough for that and I can't support very much hanging weight without pain. I had my feet on the ground so wasn't dangling, just testing limits. There's a few other probably stupid things that I've done to test my limits. But, I'm very careful. I can tell by the feel in the joint that some things are just off the plate. I'm thinking that this may be a permanent thing due to the HAGL, but not worth having an open shoulder surgery over.

          The first night was a bear after the nerve block wore off. I was too overcautious to take more meds. My oxycodone was only upped by 20mg from what I was taking. But the nurse thought it meant 60mg more than what I was taking. We were never sure so I erred on the side of caution. After that first night and taking 10mg of oxycodone every four hours round the clock, my shoulder pain was well managed. I did eventually start taking a little more only IF I really needed it. I'm still at that dose. They told me that they don't even consider lowering the dose until THREE months after a joint surgery like that. Right now, my worst pain is in the lower back again. My relief didn't last, but then again neither did my little exercise trick. It could have just been the steroid working on the inflammation or the exercise or both.

          I got another lumbar epidural today because I have once again been reduced to crawling because of the lower back pain. Fortunately, I haven't had to crawl every day. Only one or two days as of late that it's been that bad. But sleeping is horrendous because of lower back pain. If the epidural doesn't work to eliminate my left leg pain, we are going to try an SI injection in a few weeks. Hmmmm.... I'm sounding like Jess! That makes me a little fearful. However, I don't get these shots every three months.

          On the down side, my pain doctor tested me for some symptoms of Muscular Dystrophy and some of the test warranted further investigation. I go in tomorrow to see a neurologist to get the full work-up. If it is MD, that would explain just about every ill that I have. I just have too many symptoms to ignore. I won't be too terribly upset if I have it, so I want to know either way. There may be better ways to treat my symptoms if that's what it is. That also give me more incentive to get back to the gym regularly and try to build up some muscle mass while/if I'm still able. My dad didn't even try to maintain muscle mass. I think he enjoyed the pampering a little too much until it got to the point where it was too late. I'd rather know so that I can stave it off for as long as I can. My dad wasn't diagnosed with it, but when I tell my doctors about him it's pretty consensual that this was likely his primary problem. He was the victim of a horrible insurance plan and was never tested.

          So, I'll post the results of what happens on all fronts as I find out. I hope you all have a wonderful day!
          Be happy!
          We don't know what tomorrow brings,
          but we are alive today!

          Comment


          • Rohrer, I am so glad that your shoulder surgery has been successful. It is interesting that it takes a long time to completely heal. What if anything can be done for you if you do have Muscular Dystrophy? I know we usually think of MD as a childhood disease, but I know of one other adult who was diagnosed with it. My thoughts and prayers are with you.
            Sally
            Diagnosed with severe lumbar scoliosis at age 65.
            Posterior Fusion L2-S1 on 12/4/2007. age 67
            Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
            Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
            New England Baptist Hospital, Boston, MA
            Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

            "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

            Comment


            • Thanks, Sally!

              Muscular Dystrophy isn't always a childhood disease. Those are Jerry's Kids that we hear the most about, but it is commonly in the adults before the DNA repeats get bad enough to affect the kids. But in hindsight, I've had symptoms as early back as I can remember. I went to the neurologist today and he confirmed that I do have muscle "disease". He's 80% sure he'll be able to give me a correct diagnosis. I have to have some specialized EMG studies and muscle biopsies. Then, if warranted, I'll get the DNA test to confirm the kind of MD it is. He also mentioned Ehler's Danlos Syndrome. So far, that's all I know.
              Be happy!
              We don't know what tomorrow brings,
              but we are alive today!

              Comment


              • Wow Rohrer, you have been through the mill.

                I hope you get a diagnosis.
                Sharon, mother of identical twin girls with scoliosis

                No island of sanity.

                Question: What do you call alternative medicine that works?
                Answer: Medicine


                "We are all African."

                Comment


                • hi rohr
                  glad the shoulder surgery is healing...i had heard any surgery in that
                  area is tough to heal from....hope you take it slow....
                  not easy....but necessary...

                  i hope you do not get a diagnosis of MD...but i guess it would explain
                  alot...i still hope that is not what you suffer from...
                  and i hope the doctor has some treatment in mind for you...?

                  i fondly remember the SI joint shots....how much they helped, how
                  i could walk without much pain at first...they lasted 3-4 months for
                  pain relief...and gave me so much relief...but i needed alot of steroid
                  to accomplish it...i hope you do not need as much, because that is
                  what led to my being overdosed with the stuff....
                  let us know how the shots help you...

                  take good care of yourself...
                  rest and heal and be good with your PT...and you will be in better
                  shape to greet the spring, when it is nice and warm outside again...

                  jess...and Sparky

                  Comment


                  • Thanks, Sharon and Jess.
                    We're pretty sure it's MD. I have a lot of symptoms. Based on my dad's history it's looking like Myotonic Muscular Dystrophy and possible Ehler's Danlos Syndrome. Ironically, my mom is the loose jointed one and my dad the one with probable MD. He died in the typical MD fashion two years ago. The doc did some strength tests yesterday that I've never had done. I failed miserably. I had NO IDEA that I even had weaknesses in the areas that he checked. He explained that I could no longer do the heel walk because the muscles on my shins are too weak. He didn't even ask me to do that, probably because I couldn't hold my foot up against any resistance. I'll know more once my testing is complete. I'll let everyone know when I find out. It could be that my scoliosis is a side effect of whatever is wrong with my muscles and connective tissue. That's no surprise to anyone, I'd think. I honestly think that the "idiopathic" will be taken out of scoliosis diagnosis some day. It may be termed scoliosis secondary to (whatever the person has). That's just my honest opinion.
                    Be happy!
                    We don't know what tomorrow brings,
                    but we are alive today!

                    Comment


                    • For those that are interested, I thought I'd touch base with everyone about how I am doing.
                      I have had a rough couple of months to put it mildly. My lower back pain got so bad that I couldn't roll over in bed. We tried the epidural followed two weeks later by the SI injection (WOW did that ever HURT!!!). The pain of that injection mimicked the pain I was having and my leg immediately had strange sensations where it was previously painful. I was really hopeful that this would work. It did. Eventually. It took the full two weeks to kick in. I was hoping to lower my pain meds, but it brought it down to a level that the pain meds were able to work their magic so I have had times with little to no pain in my lower back. I am starting to lower my dose SLOWLY so the pain doesn't kick in and overtake me.

                      As far as my MD testing goes, I don't know much. So far 18 of the over 30 blood tests have come back relatively normal. There's a little high blood sugar but not bad. I had an EMG done which was also relatively normal. That was actually BAD news because I think the doc was quite sure that I have Myotonic Dystrophy which usually shows up on the specialized EMG. He looked frustrated when he said it wasn't MMD. I say bad news because if you're going to have dystrophy that's the "best" one to have. I've had a muscle biopsy done. No one told me in advance that they don't deaden the muscle before they take it!!! I was told in the exam room right before the procedure. It was quite more of a little operation than I thought. For some reason I thought they would just numb me up and jab me with a big hollow needle and take like a core biopsy. NOPE. Nothing doing. I have about a 1-1/2" (4-5 cm) incision. They had the little spreaders and everything in there. I have several layers of stitches in there where they closed it. It's still a little scabby after over a month. Oh, well. It matches my other arm. I don't have those results and will see the doctor in February.

                      Meanwhile, I've had trouble eating and I've had either influenza B or colds or both (three things back to back). It's knocked me off my socks, literally. I started baking cookies to try to keep my weight up. I'm having trouble with intestinal cramping and sometimes even swallowing when I eat. A few days ago I weighed in at a whopping 116#(52.6 kg). I weighed myself again last night to see if I gained anything and I dropped to 113# (51.3 kg). I have no energy to do anything.

                      The thought just occurred to me about what happened to Jess. I hope my cortisol is fine. I've had a lot of steroid within the last several months between my shoulder and my back. Hmmm.... I see the doctor on Friday. I'll ask him. It could be stress, too. I, like everyone else, have more things going on in my life than my health issues.

                      Take care, everyone, and stay well!
                      Rohrer01
                      Be happy!
                      We don't know what tomorrow brings,
                      but we are alive today!

                      Comment


                      • hi rohr
                        PLEASE...ask the doc to do a blood test for cortisol and ACTH...the latter test, in my experience, is done at hospital lab as i was told it had to be processed right away...
                        simple blood test...and maybe the doctor can think of possible things that can cause exhaustion to rule them out, besides checking cortisol function...

                        i just had blood drawn a few weeks ago...my cortisol was at 11, which is good, but down from 14...with no apparent reason...the thing that bothers me is that i am scheduling a steroid shot in left hip for February....supposed to have it sooner but doctor was running really late last time, etc...

                        my GP is not happy with my decision...but i am in SO much back
                        pain...plus bursitis in left hip....and i cannot even take Advil, per my GP...so...no anti-inflammatory meds...none...i am going to steroids
                        in desperation...and i only dare risk one shot...if it doesn't help...
                        i cannot risk more steroid...

                        it amazes me that more pain doctors do not think of SI shots...
                        they seem to work so well, so often, for so much back pain...
                        alot of lower back pain seems to be helped by shots in sacroiliac
                        area...

                        hope you feel better...
                        jess...and Sparky

                        Comment


                        • Thanks for the advice, Jess. I will ask him.
                          I weighed in tonight at 112# even (50.8 kg). I'm a tall woman so this isn't good at all. Food just doesn't taste good. I eat anyway, but surely not enough. I'm going to the health food store tomorrow to see what tasty things they have there to stimulate my appetite.

                          My lower back and left SI are hurting along with the pain down my left leg. I caved and took the dreaded extra pain pill and am in my "special bed" (craftmatic adjustable bed). It seems to be the only bed that doesn't hurt my back, especially if I'm already in pain. The last time I saw the pain doctor he talked about fusing my L5/S1. I told him no way, it's only classified as "mild" DDD. However, it's in an area where I have Spina Bifida Occulta. I doubt if that has anything to do with it. They create fake SBO's by doing laminectomies. He showed me on my last MRI that I do have a pinched nerve root on the left as compared to the right. He'll probably order a repeat MRI. I'll wait for it to get much worse again before having the MRI because the inflammation is still reduced from the shot. I'm terrified that if they fuse my lowest lumbar that it will destabilize my spine since my hips aren't even and I'm kind of twisted, too.
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • rohrer,
                            So glad the steroid shot kicked in to reduce your pain. Have you tried Boost to keep up your nutrition and weight? I drank Boost daily when I had the C. Diff and it really helped. The taste isn't too bad either. I hope the Dr. appointment will give you the answers you need.
                            Take care, Sally
                            Diagnosed with severe lumbar scoliosis at age 65.
                            Posterior Fusion L2-S1 on 12/4/2007. age 67
                            Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                            Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                            New England Baptist Hospital, Boston, MA
                            Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                            "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                            Comment


                            • Thanks, Sally.

                              Sorry, Jess, I didn't ask about the cortisol. I realized the other day that my heart is what's been making me weak. It does that when the tachycardia flares up. I realize that cortisol can affect the heart function as well, but this has been an ongoing problem. I'm weak from being sick for so long, having the tachycardia, losing too much weight from my eating difficulties, and some significant depression due to family issues. I WILL get through this.

                              My doctor changed me from a Beta blocker to a Calcium Channel blocker. I haven't started taking it, yet. I will start that next week. I weighed in at a whopping 110# fully dressed at the doctor's office. I talked to him about it since I've never been this light since I was still growing and about 14 years old. He said the new heart medicine does have some effect on the smooth muscle in the esophagus and might help with my swallowing difficulties.

                              Meanwhile, my lower back hasn't been too bad, but my upper back, neck and shoulders have been really painful. It's time for Botox this month, so that doesn't surprise me.

                              To address your question about Boost or Ensure or any of those other liquid nutritional drinks; they're a no go with me because they all have something in them that disagrees. I think it's the Whey protein. They all give me instant diarrhea and then ALL my food, medicine and calories literally go down the toilet. Sorry for TMI. I found a vegan protein drink that I'm going to try for extra protein to help ward off my muscle loss. I also went an bought a bunch of Macadamia nuts to much on. They are a very high calorie source of protein. I can nibble, hopefully, without overloading my system. I already cook very high calorie, yet healthy, meals. My hubby is also very thin and has a very hard time putting on any weight. He can eat like a horse and not gain an ounce!

                              Thank you all for your concern. I promise that if my energy doesn't pick up, I will insist to the "right" doctors to get my cortisol checked. My GP isn't the one to do that. It would be those in Neurosciences/Physical Medicine/Pain Management that would do that since they are the ones treating me with the steroids. I have three different doctors working with me there.

                              I hope you all are having a good weekend!
                              Last edited by rohrer01; 01-29-2014, 11:35 AM. Reason: affect effect... =)
                              Be happy!
                              We don't know what tomorrow brings,
                              but we are alive today!

                              Comment


                              • Again, for those of you who are following my story...

                                My cervical dystonia has taken a huge leap for the WORSE!
                                I live where it snows. When it snows you have to shovel snow. A couple of weeks ago we had a LOT of snow. It was supposed to be only a couple of inches but was more than a foot with blowing and drifting. Snow plows come by and plow up all of the packed ice and snow from the road and dump it into all of our driveways. This is PACKED and HEAVY!

                                So, I think I'm going to make things easier on myself and keep up with the shoveling so that I don't have to lift heavy shovels full when the storm is over. That's the only way to do it, really. My hubby couldn't do it because he was at work and would not have been able to park the car anywhere. We don't have enough area to shovel to warrant getting a snow blower (I might rethink that).

                                So everything was fine. I had really sore muscles, but kind of a good muscle pain that you get from exercise. Two days later it hit me, and it hit me hard! I started to get this pain that I get on the left from my shoulder and up the side of the neck and around the scapula. When it got to the point where it hurt to breathe and I'd taken all the oxycodone that I felt I could safely take, I called the doctor. I asked them if I could be seen that day, otherwise I WOULD end up having to go to the ER. My doctor, being the kind soul that he is, said to just come in and he would work me in. I called a friend to drive me because I didn't feel safe to drive and I didn't know if I would be getting more pain meds or not. By the time I got to the doctor's office, I had nerve pain down my whole left arm and my hand was swelling and turning red. This had NEVER happened before.

                                When I got into my room I asked the nurse if the doctor would consider giving me some trigger point injections and not just pain meds. She said that she thought that was what he was planning to do. So, he came in and examined my neck and back and just sighed. He said everything was just so tight! I still had bruising from the trigger point injections that I had done three or four days earlier. So, after careful consideration, he picked three more areas to try to release. One was right next to my lung on the inside of the collar bone (that's where it hurt to breathe). This is always a scary place for the doctors to work on with needles, especially without ultrasound guidance, because a poke a little too deep can collapse the lung. So, I got the three injections (more like digging around with the needle to break up the spasms) and no more pain meds, I went home. I was nervous because I was still in some pain. But, to my surprise, by the time I got home the nerve pain was gone and the swelling in my hand was GONE!

                                Fast forward a week. I went to get my regularly scheduled Botox injections this week. This is done under EMG guidance so that they can put the Botox into the tightest muscles. The doctor was examining my neck and upper traps and was just saying, "Oh! this feels like bone!" everywhere he touched. He'd ordered more Botox than usual and didn't remember doing that and asked me if I remembered him saying that he was going to increase the dose. I said no, I didn't remember him telling me that, either. It turned out to be a VERY GOOD thing that we had more Botox on hand!

                                Now, mind you, these shots are NOT painless. They do not numb you up, otherwise there would be so many more needle pokes. I usually tolerate these injections fairly well and might, at most, wince a little. The injections that day were so painful! Every time he put the needle in I got excruciating referred pain somewhere else that felt like a constant burn with electricity! It was going down my back and around my scapula on both sides. Then other ones went all the way down my arms into my thumbs. The one on the left was so bad that my arm involuntarily jumped up and contracted. The tears were running down my face (NEVER ever brought to tears by this procedure before!). I'm trying not to yell and just kept saying ouch, ouch, ouch! I didn't want to say anything but couldn't help it. The doctor is apologizing the whole time. When he was finally done I broke down and was just sobbing uncontrollably. It looked like the doc was holding back tears as well. I felt so bad for him! The pain in my neck was still so severe even AFTER the procedure was done. There was some residual pain still going down my arms as well.

                                I asked the doctor, through sobs, if there were any other treatments for this disorder. I am already on very strong muscle relaxants, get trigger point injections and Botox. He just looked at me sadly and shook his head and said that he wished there were, but that there wasn't anything more that they can do. He said that the muscles were pulling so hard on my neck that the wings of all of the vertebrae were all poking out visibly under my skin. He told me that next time if I'm experiencing discomfort before I get my Botox (I'm limited to every 91 days by my insurance) to call him and he would prescribe Valium to take until I came in for my injections. I told him that I already take Klonopin (a similar drug, also a benzodiazepine) three times a day. He said because I take it regularly my body is used to it, so adding Valium on top of it would help some. I also said that next time I wanted to be sedated. I am having some very stressful family problems. He told me that stress really aggravates this condition and hopefully I won't be so stressed out. He also told me very firmly, "Do NOT get cold! If you HAVE to go outside, double wrap your neck all the way up!" This kind of took me aback a little because he is so soft spoken. He wasn't mean about it at all. He just wanted to get this point across about the cold... We live where it's cold.

                                I also told him about the episode with my arm and hand a few days prior (during the procedure we chatted about it). He told me that my muscles were clamped down so hard that they were pinching off the primary artery and vein that go to my arm. With the vein pinched off the blood couldn't escape my arm and that's why my hand swelled up and turned red. He was really impressed at the other doctor's work with the trigger point injections and said that this is what allowed the muscles to relax enough to return the normal blood flow to my arm. I thought maybe the lymph vessels were pinched off. He explained that this couldn't have been the case since the lymph dumps into the areas below where my muscle spasms are.

                                Fortunately, my DIL wanted to come with me this day. I went back out to the waiting area and took a bunch of pain medicine and waited until I had the nerve to go outside to the car. I didn't even want to move. My neck felt like I had hornet stings all over and my arms ached. I thanked my DIL for coming with me. I was still crying. People were looking at me weird. Finally, the pain meds kicked in and we were able to leave. She drove home, of course!

                                So now I'm a little freaked out, to say the least! I never realized that this condition could get so bad that it cuts off the blood flow to my arms! I thought it was primarily a medical condition that cause pain and contortion of the neck. But, I have a lot more "respect" for what's going on now that I know that it can actually do real damage to my body. It's awful enough to live with chronic pain, but to know that the muscles are strong enough to cut off major blood supplies to other parts of my body is humbling and very scary. I definitely need to be more careful. It was always MY understanding that overdoing things would result in more pain. Now I know it's way more serious than that. =(

                                I hope everyone else is feeling okay. I feel really bad for those of you having trouble with broken rods, bobble head, and other weird seemingly unexplainable pain. For those of you going through this, please accept my cyber hugs!

                                Rohrer01
                                Be happy!
                                We don't know what tomorrow brings,
                                but we are alive today!

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