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  • Originally posted by LindaRacine View Post
    Hi Rohrer...

    Glad you have a definitive diagnosis, but sorry it's CMT. Your scoliosis would now be considered neuromuscular.

    Linda
    Thanks, Linda. I'll have to tell my scoli doc if/when I eventually go back to see him. I don't know if it will affect whether or not I should have surgery. I read on the NIH page that they sometimes to preventative joint surgeries and preventative bracine BEFORE symptoms appear to spare the body part from degenerating as fast. My left rib is so high up in my neck and the doctors are always having to work around it. They are always scared because they are afraid of collapsing my lung. My physiatrist has brought up scoli surgery a couple of times... So I don't know what this means, maybe nothing?

    Do you get any CMT scoli people in your clinic?
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

    Comment


    • I think I've only seen the diagnosis a handful of times. I'm really curious whether it's that patients aren't getting diagnosed or if those who have CMT don't look to have their scoliosis treated. It's also possible that the only CMT patients who seek treatment of their scoliosis are kids. We do see kids, but only at a relatively low ratio. Another thought is that I typically only see diagnoses on our surgical patients, so it's possible we're seeing patients, but they're not encouraged to have surgery.

      I'm off to the SRS meeting next week, but when I get back, I'll talk to some of my surgeons about you. The one thing I'd be concerned about is what impact a big surgery might have on your other symptoms. I have to say that it's really common that people with significant co-morbidities end up with at least a short-term increase in their symptoms.

      --Linda
      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
      ---------------------------------------------------------------------------------------------------------------------------------------------------
      Surgery 2/10/93 A/P fusion T4-L3
      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

      Comment


      • So sad about your father, not even getting a diagnosis therefore not receiving any treatment. Do you know what the treatment is, and how effective it is? I have everything crossed that you're finally going to get some relief from your symptoms soon. Best of luck and keep us informed.
        Surgery March 3, 2009 at almost 58, now 63.
        Dr. Askin, Brisbane, Australia
        T4-Pelvis, Posterior only
        Osteotomies and Laminectomies
        Was 68 degrees, now 22 and pain free

        Comment


        • Originally posted by LindaRacine View Post
          I think I've only seen the diagnosis a handful of times. I'm really curious whether it's that patients aren't getting diagnosed or if those who have CMT don't look to have their scoliosis treated. It's also possible that the only CMT patients who seek treatment of their scoliosis are kids. We do see kids, but only at a relatively low ratio. Another thought is that I typically only see diagnoses on our surgical patients, so it's possible we're seeing patients, but they're not encouraged to have surgery.

          I'm off to the SRS meeting next week, but when I get back, I'll talk to some of my surgeons about you. The one thing I'd be concerned about is what impact a big surgery might have on your other symptoms. I have to say that it's really common that people with significant co-morbidities end up with at least a short-term increase in their symptoms.

          --Linda
          I was thinking the same exact things. Thanks ahead of time for asking them about me. I know a huge surgery would take a lot out of me. But if the nerves could be kept from dying I would recover. On the other hand, the twisting of my neck has become so bad that the muscles feel literally like rocks and have cut off normal blood flow to my left arm at times. This causes my hand to turn red and swell and the nerve pain is excruciating. I have two doctors that do the trigger point injections that release these muscles. So far if one is busy the other can see me. The physiatrist talked about unkinking my neck. But he's for sure not big on surgery, either. But the dystonia is putting so much strain on the nerves, blood vessels and muscles there because of the altered anatomy. It's near the brachial plexus. If I weren't able to get relief from this, I don't know if I would eventually lose my arm because of the blood flow issue.

          Surprisingly, my hands are strong (my sister has more hand problems). I just can't move my fingers fast enough to be a really good musician. I also have constant twitching in my right ring finger if there is any tension in it at all. My hands are a bit shaky, but not bad. My sister can't button her shirts. I think it has to be coordination. She adopted 4 little kids over the last few years and two of them were newborns. They are all from the same family. But the point is, she has two and three year olds right now and the oldest one is only 7 (she started with a 1 and 4 year old and the woman kept having babies). Her pregnant daughter (the one with scoliosis) has four little kids. The oldest is 10 and the youngest just turned one. My sister watches all eight kids! So her hands can't be super weak. Otherwise, she wouldn't be able to pick up the babies. So I think, so far at least, it is the fine motor coordination like me only worse.

          My coordination has always been poor. I was always the last chosen for the team (any sport), literally. I've never been really strong, although I have been in very good shape. I used to ride bike a LOT as a teenager and later got into bodybuilding for a short time. I never bulked out but was able to get good definition and tone. But there seems to be a critical tipping point where you go from being "normal" with what you think are individual limitations (everyone is not good at everything), to realizing that something is really wrong. It's at that point that you look back on your life and see symptoms that you ignored or thought you "outgrew". My legs feel like they did when I was 3 or 4 years old (surprisingly I remember) when I would get whacked on the butt by my grandma for dragging my feet, or chastised by my parents for walking pigeon toed. It's all back, only worse. I can FEEL the weakness. Yesterday I did a little cleaning and cooked dinner. My thighs were literally quivering and exhausted. I've had complete muscle exhaustion before. By complete, I mean not able to move the muscles AT ALL. I was born with slightly clubbed feet. It was bad enough that the pediatrician wanted my mom to consent to putting my legs in a brace that would hold my feet outward. My mom said, "No!" My feet are now shaped normally, unlike many other CMT sufferers. I also lacked the "instinct" to breath through my mouth if my nose was stuffy. I almost died at about 4 months old because I had a cold. My mom said I was as blue as a pair of new denim jeans. She did mouth to mouth resuscitation and rushed me to the hospital where they told her nothing was wrong with me except a slight ear infection and a little cold. They sent her home with me not breathing unless I was kept crying! My poor mom!

          Now I'm prone to falling. I fell hard twice within 6 days. Like I said before, the second one knocked me out and gave me a concussion. I'm scared to move around my house! What if I fall when no one is home?

          The reason my doctors thought we had MMD is because if the muscles are held with strain for a longish time, they don't release. For example: My sister and I thought it was "normal" that we could not open our hands right away after playing on the monkey bars. Those kinds of symptoms threw my doctors for a loop. But HER doctors didn't even look in that direction. They told her she had Parkinson's (99% sure), which devastated her! Then they changed their minds and said they were sure it was MS. But she had no definable lesions on her scan. Then they decided on some kind of right sided neuropathy of unknown origin. Why they said right sided is beyond me. I haven't seen that her right side is obviously different from her left.

          MY left leg is weaker, but an MRI I had a couple of weeks ago shows that I have a ruptured L5/S1 where before it was just bulging.

          My sister gave up. She was given a false diagnosis so many times which caused her emotional devastation too many times. So she said she was done trying to find a diagnosis. So I was the only one left to try to figure this thing out. My dad was dead and my sister had given up! I told her I would keep going for "us" and our dad. I would NOT give up! And now I'm glad I didn't. I'm glad that I live in an area where I have access to some of the best health care in the nation. My sister and father didn't have that good fortune. But I really was afraid of coming to a dead end, too. I honestly thought that would happen. I am so HAPPY I can't explain that we have answers. Without answers we would have had to go through this without help like my dad, and that was awful. He died a horrible death drowning in his own fluids. So whatever kind of CMT this is, it's one that doesn't stay only in the peripheral nerves of the arms and legs like most CMTs. My dad's chest was paralyzed and his belly was flaccid. By the end, even his lower jaw was partially paralyzed and all the joints in his arms were completely frozen.

          The best health care in this country is at both coasts and in the upper midwest. If you live anywhere else it's tough. They live/d in AZ where healthcare is TERRIBLE. And if you're unfortunate enough to be stuck with an HMO it's even worse!

          By the way, Linda, I hope you came through the earthquake without any injuries or property damage. I know when I lived in AZ I could feel those CA shakers. They'd knock stuff off of MY walls!

          Take care and THANK YOU!
          Be happy!
          We don't know what tomorrow brings,
          but we are alive today!

          Comment


          • Linda,

            Just one more thing. It's my understanding that people with CMT usually have mild scoliosis. That may be why you don't see a whole lot more of us.
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

            Comment


            • Update

              To my good scoli friends, I have an UPDATE: I saw the neurologist yesterday. He's completely baffled and sending me on to Madison for more extensive genetic testing. Meanwhile, my good friend that happens to be a Ph.D. geneticist is coming to have lunch with me and go over some new information she has found and shoot some ideas around. I asked my neurologist if he wanted her info and ideas and he gave an overwhelmingly positive response! Since my friend teaches AND does research, she HAS to keep up on all the latest in genetic research. She is a highly intelligent and wonderful person, especially to take time out to come to my town and help me. She was my mentor when I did my undergraduate research, but that was 11 years ago! Many have come and gone and we have seemed to remain in touch. She's a very special lady!

              Meanwhile, enough about my friend. My neurologist and my geneticist are going to see if I qualify for the rare genetic disorders study being done by the NIH. At first they were against the idea. Now THEY are the ones bringing it up. If we can't figure this out for me, then maybe for my kids and grandkids (a nurse told me that). They know now that it's a race against the clock. They see it clearly as new symptoms crop up faster than I can report them.

              I also saw the urologist today. So far, so good in not needing a bladder pacemaker. He had to change my meds due to my low blood pressure. I had a TON of testing done today. I guess it was okay. I only failed one part, not being able to pee a second time after my bladder was intentionally overfilled. Other than that, I think I did okay. He didn't say otherwise. So, hopefully this new med will work and my blood pressure will come back up. He was going to UP the dose of the one that I was on because it was working, but not as great as it could have been until I told him how low my BP has been running (80's/40's or 50's). So here I am, awake in the middle of the night because I had to PEE and only a trickle. It has get better than this. I do NOT want a bladder pacemaker!!!

              I'm excited because I am using one of my spare bedrooms as my own in-home gym! I had to give my treadmill away because obviously I can't use it properly if I can't walk properly. Anyway, if what I have is related to CMT, walking is contraindicated. So I bought a three-in-one stationary bike, recumbent bike, and elliptical machine. I went back to Sears today to look at theirs and mine is BETTER. The foot rests for the recumbent bike part are bigger and wider and the arm poles adjust in a way that doesn't interfere with the comfort of the grip. I have also found a fourth way to use it! I can use it like the sitting stair machines that they used at the Heart Center. I can sit, use the upper foot pedal AND reach the arms all at the same time. I set it on low and warm up just as I used to do. I also bought a weight bench. I could care less about the bench press feature. I bought it because it has leg lift features where I can do BOTH front and back leg lifts. I also have my big ball, stretchy bands 1 - 3 lb hand weights and ankle or arm weights that are 2-1/2lb and 5lb. The great thing about these little things is that they have six removable sandbags each so you don't have to start at 2-1/2lb and can work your way up gradually. I also have my small ball used for various PT exercises. So I'm set with whatever I need if they give me a specific PT routine. Otherwise I've been trying to mimic what I was doing, adding the elliptical instead of the treadmill. I am SO out of shape! My heart rate shoots right up again...which leads to the other update.

              I may have mentioned this already, so bear with me if I have. My heart rate is slowly creeping back up there. I have to have nerve conduction studies on my heart. :-( Not looking forward to that AT ALL. I misread my letter from my cardiologist.

              Another thing happened to me that is concerning. We had to take my grandson to the ER in the middle of the night the other night (he has pneumonia, poor baby). On our way there I was talking to my daughter as if she were my SISTER! I could NOT understand for the life of me why she didn't know these people from MY past that I was talking about. I was talking about this girl who was my age and her brother, whom my SISTER had a crush on. When my daughter was trying to make sense of what I was talking about, I told her that she had the biggest crush on this guy. Then she asked me if he was older or younger than my high-school girlfriend. I said he was OLDER and that he was in HER grade! Seriously??? At that point I realized that I was out of my mind! I've called my daughter by my sister's name a few times, as has my sister with HER daughter. They remind us of each other in some weird way. But, I'm definitely reporting this one to my doctor. It could be part of the concussion. I thought I would be all well by now. I feel all well, mostly. I know I don't have a brain tumor or anything because they did a CT scan when my headache didn't go away. The doctor said my brain looked normal. I don't have dementia on either side of my family. I'm having difficulty typing and spelling words, too. A LOT of trouble. I type letters out of order and make way more typos than I ever have. I'm constantly having to hit the back button every couple of words.

              That's some scary stuff right there.

              Anyway, you all have a nice day.
              Be happy!
              We don't know what tomorrow brings,
              but we are alive today!

              Comment


              • FRUSTRATED and HURT!!!

                Grrrr....

                My family wants me to call them EVERY time I have a doctor's appointment related to my neuromuscular degenerative disease. So the last time I called my mom I told her exactly what the genetic counselor said in wanting to test my mom for two mutations. She INSISTED that I let her know WHEN this would happen since her physical is coming up and she wanted to give the blood samples at the same time. I told her I didn't know and it probably wouldn't coincide and not to put her physical off. She went on and on how she doesn't like to be stuck with needles. (she give herself shots monthly) So I told her that maybe they could just have her do the cheek swab when the time comes. She got angry with me and cut our conversation short. Later called my husband and ranted about me and included my sister in the rant against me (not the affected sister). I knew she was ranting and my sister didn't say the things she was accused of saying.

                Meanwhile, I get referred to the neurologist who is baffled by the results of my test and want to refer me on to a hospital that can do more extensive DNA testing in-house, rather than sending them out. So no mention was made of those two mutations. So, again, I call my mom and let her know. The same rant continues about coinciding the tests. I told her I wasn't sure if they were going to take that route now that I had been referred on.

                So I want to talk to my sister about what happened with "the phone call". I end up getting yelled at because I can't give her a diagnosis of what I have. She couldn't understand that there are diseases out there that are unique, rare and haven't been named. The insinuation that's being made is that I'm comparing myself to my deceased father in the sense that I'm looking for things to happen to me that happened to him, foresight. I tried to explain that I made no connection with my father until muscle weakness and paralysis began AND in talking to my "affected" sister noticed that our symptoms are similar to that of our deceased father's. All along, I assumed he died of undiagnosed ALS, so made no connection what-so-ever. I tried to explain that all of this is hindsight.

                So here I sit, feeling once again like I'm being called a hypochondriac looking for sympathy. I told her so. She denied it, but INSISTED that if I have CMT that the life expectancy is normal, which it is in most cases. IF that's what my dad had, he did live a normal life expectancy and died at 79. The last 10 years were pure HELL-O for him, though, AND his walking troubles didn't START until he was 70. I'm 45. I tried to explain that the NIH website says that people with CMT "usually" have a normal life expectancy. That "usually" means NOT ALL. Nope, she wouldn't listen. I said I may not even HAVE CMT but may have a variant of it related to it but different.

                My neurologist was VERY alarmed at what he saw in me this month vs when I saw him in January or February. The progression is rapid. The nurse even told me that if they don't find a solution for me, that at least I might be able to help my kids.

                I ended my conversation with, "I don't want to be yelled at because I don't have the answers. I just want to be loved and enjoy my family with however much time I have and that none of us know how much time we have." I also said that I'm NOT updating ANY more of my appointments.

                It's just causing my family to be upset because they can't understand the science part of things. It's frustrating and hurtful to feel like a child crying in pain, being doped up with aspirin, and being called a hypochondriac all over again. Having insinuations made that I'm "looking" for trouble by having DNA testing done. I probably shouldn't vent here, or at least change my username so they don't know who I am. I now know WHY my other sister (the affected one) QUIT telling them ANYTHING. I'm the only one she talks to about it. She's tired of the testing and the misdiagnoses so is just living her life. I was told I should do the same. I said I would if I could walk normally! But my affected sister knows I'm doing this for "us", meaning her, myself, our dad, and our kids/grandkids.

                My rant is over. This is why I joined the forum to begin with...so I wouldn't "talk" about it so much. But, for me, it's scary to go through what I'm going through and have absolutely zero family support. Even my hubby hates doctors and every bad thing that happens to a person (a doctor finds it) makes it the doctor's fault. My kids are completely apathetic. My daughter admitted to me that all these years that I've been in pain (symptoms of nerve degeneration) that she thought I was faking to get attention...until she saw me walk after not seeing me for months. Every time I was feeling really horrible with pain, she would be sicker or in more pain so that I would be forced to watch her son. EVERY time! Now I know why.

                I feel all alone in this...totally alone.

                Just one more thing. My mom says that she would trade places with me in a heartbeat. If she knew all that I've been through, even the urology testing this week was a nightmare, she wouldn't say that. If she's making such a big deal out of a needle stick in the arm, how could she even imagine the rest of the testing, let alone day to day living! She told my husband that I'm accusing HER for my illness. That's absurd! From a scientific point of view you can't blame anyone. It's genetics! From a moral point of view, how could I blame her? She gave me life! We don't get to choose what our genes are, but I'm still glad I was born!
                Last edited by rohrer01; 09-19-2014, 09:55 AM.
                Be happy!
                We don't know what tomorrow brings,
                but we are alive today!

                Comment


                • hey rohr
                  am going to write a private e mail to you...

                  jess...and Sparky

                  Comment


                  • Rohr, you are never alone, we are here for you. You are not asking for trouble having genetic testing done.

                    Do whatever you want with the following advice. Your mom has her own guilt problems to sort out, she needs to deal mentally with her problems. I might suggest that when your conversations with your mom degrade to her calling you names, have a script written down that says something like, "mom, I love you but this conversation is very stressful for me. I am going to say goodbye now. If you cannot be supportive of me, please do not put me down. Comments like......., are not helpful".

                    Hugs to you, Susan
                    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                    2018: Removal L4,5 screw
                    2021: Removal T1 screw & rod

                    Comment


                    • Awww, Rohrer. I am so sorry for all the problems, especially with your family. Just when you need understanding the most, you get the opposite. Life isn't fair at all sometimes. We are here for you and hopefully when (if) they are able to dx your disease(s) some resolution can take place. In the meantime, know that you have a special place in many of our hearts, and I know how hard and strong you are battling through this. I am praying for you and sending my best and cyber hugs.
                      71 and plugging along... but having some problems
                      2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                      5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                      Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                      Corrected to 15°
                      CMT (type 2) DX in 2014, progressing
                      10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                      Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                      Comment


                      • Thank you...all of you, REALLY!
                        I was having a moment of self pity, but still feeling the sting.
                        I told someone that I got my own in-home gym and got the snarky remark, "Well, are you using it?" I just got it! AND I told her that I had been working out in the gym for 2 hours, three times a week for the year and a half, at least (the implication was that I did NOTHING except lay around). I can't get comments like that out of my head! But that was from the rant above, so I should just let it go. I hate knowing how people are so judgemental over something I have NO control over. If I was doing nothing, I would get blamed for that, too! It's a lose, lose.

                        Your kind words and advice are really appreciated. Susan, that IS good advice that I will take!

                        I have a new symptom! Yeah! Just what I wanted. I already had trouble with eyelid paralysis, almost ALWAYS one eyelid at a time. Once I manually opened the eye, the muscle would work just fine. It happened when I was tired or waking up. Now, upon waking I am unable to open my eyes at all unless it's manually. Then I can't see! Everything is blurry for a good few minutes, like the muscles in my iris are being affected and are paralyzed, too. So my pupils are fixed for those several minutes. I can't look at the very large digital clock in the middle of the night, AT ALL. I have to wait until my eyes start working. It's important because I have a middle of the night medicine that I can take as needed, which it is. I can't see to go to the bathroom. Fortunately I know my way around. I don't know if my dad had these symptoms. He was BLIND from macular degeneration.

                        So, just to take note of this in my "journal" this started about a week and a half ago. I always wait a little while just to see if it's something incidental that goes away. I'd already talked to my eye doctor about the paralysis of one lid at a time and he told me it sounded neurologic and to talk to my neurologist.

                        Now my eye doctor DIED on Thursday! I'm SO SAD. I saw him, I think it was the end of July because my eyes were getting bad so fast. He said that was normal for my age and upped my bifocal 2X and my regular Rx 1X, which I haven't had filled waiting for my husband to go. So my husband had an appointment a little farther out than I would have preferred, but I wanted to wait to order glasses together and save on shipping. So he got a phone call the week before his appointment that the doctor was out sick that week. The next week we get a letter saying that he was retiring early (he looked fairly young...Maybe late 50's or 60, but didn't look that old). I assumed the worst and it was. I believe he had pancreatic cancer. BOOM! In a day he went from healthy to very, very sick. I don't think he lasted even a month from his diagnosis. It's all so very sad! :'-(

                        The bold is for me. It's just in case I need to refer back to when things started.
                        My mom's been calling me every day since a few days after the "incident". She's being super nice, but wanting to talk about "it". So I try to change the subject because I don't know any more about "it".

                        You guys are the best people to "talk" to about my symptoms. My hubby doesn't even know the new one. I haven't told even him and don't know that I will...

                        It would be nice if you all were tangible. But cyber friends that will listen without criticism are better than no friends. I know that at least 99% of you ARE who you say you are and experience the things you say you experience. It's helpful and thanks again! I do have LOTS of friends. Don't get me wrong. But really, who wants to hear a sob story every time they see you?! So when I see them and they ask how I'm doing I say, "I'm here and glad to be here!" wherever we are. That's a positive and truthful answer! Then we can talk about other things. :-)

                        (((HUGS))) to everyone!
                        Be happy!
                        We don't know what tomorrow brings,
                        but we are alive today!

                        Comment


                        • Again for those interested in following my story:

                          Many new symptoms. However, I found out that my sister has the same difficulty with her eyes! She even has it in the daytime. The other day I was talking to my dear daughter-in-law and she was shocked at how large my pupils were. Oh well.

                          Some of my new symptoms are rather embarrassing but I will share all that I can think of right now.

                          1. despite my cervical dystonia Botox injections I'm unable to turn my head to the left more than about 45o. That is scoli related. I'm slated to see a neurosurgeon at my hospital who has an interest in scoliosis. A different doctor, my physiatrist was nice enough to order the x-rays because my neurologist dropped me for the reason he couldn't figure out what was wrong with me. He's not even willing to follow my decline as a learning experience should someone else like me come in. The problem with the x-ray is it was ordered for only a coronal view so I'm going to have to straighten that up (ha ha a pun!) and get the neurosurgeon to order a sagittal x-ray as well. If he doesn't, it will show me how interested he really is. No worries, there's no one qualified to do any surgery on me here. My scoli doc admitted to only seeing about 1 patient with a high curve every couple of years. He wouldn't answer me as to how many lefties he's seen. I'd wager I'm the only one. He's NOT touching me if I ever have to have scoli surgery to relieve the symptoms in my neck and arm.

                          2. I now have pretty significant hand weakness. I can barely get through opening a can with my very easy to use manual can opener. I don't want to switch to an electric until I absolutely have to.

                          3. Balance is very bad. I take minor spills every day that I can roll with. I can no longer walk normally, but this has nothing to do with balance as I fall even when I'm crouching down. I don't remember if I posted about my major fall at the end of September. I got up in the night because I couldn't sleep and had a bit of a head rush which was not that uncommon at the time. I leaned forward on the doorjamb to let it pass. The next thing I know I hear a loud noise and my husband was standing over me. I had been out cold for I don't know how long. I wasn't making sense and kept telling him to call 911 and then not to. I was in excruciating pain from head to toe but especially my neck, left arm and legs were the worst. I was wedged under the bed somehow. I took a nasty blow on the metal bed rail to the left side of my head and managed to get stuck under the bed where my head does NOT fit. So the bed was on my head. I lay there for an hour and a half trying to use my EMT skills to assess myself (stupid), not thinking clearly, clearly! I knew I needed a hard collar and back board. I scooted myself as straight out as I could and don't remember when or how I got up, still. I went to the doctor finally on Thursday and this happened on a Saturday/Sunday night. The head pain was horrible and hurt opposite where I hit. The doctor tried to have me follow his fingers and I couldn't. I was in CT five minutes later! My brain looked good he said but I suffered a doozy of a concussion. So I'm afraid of falling! I've taken to riding the scooter at shopping centers that have them because I can't walk that far AND I'm afraid of falling. This is partly why I stopped posting. I've had trouble typing. I think I spell a simple word and it's a jumble of letters. I had amnesia of the actual incident. I still don't remember falling. I am still having trouble with word recall and remembering names of people I know. I have no idea if I cracked a vertebra in my neck since no one checked it out despite me telling my PCP the next week! I'm healed now but still recovering my typing skills and word recall. So sorry I've been gone for so long. My spelling is terrible now, too. It's getting better and thanks to word processors that catch the misspellings! So sorry if I posted about this already. It will go to show how I'm doing now if I did.

                          3. I can't whistle! I was listening to a song I liked the other day and found that I can no longer whistle! That means my mouth muscles are being affected.

                          Now for something I'm proud of! I've weaned myself nearly off of oxycodone with no substitute! I accept the fact that I am in constant pain and will need it when my pain can't be controlled any other way. I am down to 10mg a day from 60mg and 80mg when doctor approved. So happy day!

                          Well, I can't say that there is no substitute at all. My doctor put me on a whopping dose of gabapentin. As it turns out, most of my pain was nerve related. I've had it upped twice and am having nerve pain in a really weird place right now. It's the muscle that goes on the back side of my right armpit. This IS a new one! My left leg a little.

                          My L5/S1 disc is now ruptured. I saw the MRI and the disc matrix was spilled all over the spinal canal (yes, I realize that the actual spinal cord ends at the bottom of the thoracic spine). I can't help to think that this stuff touching all of those nerves could be contributing to my leg pain. My doctor that gives injections in the lumbar said it was stable. Hmmm it went from bulging to rupture and is stable?

                          4. An embarrassing development. I, at times can't urinate because of muscle spasm so I have to cath myself. There are times that I can't even feel the urge to go. It feels like menstrual cramps at times I shouldn't have them. So I go in and cath and the "menstrual" pain goes away with a whole lot of pee!

                          5. I've been through a battery of tests and have reduced feeling in my rectum which is probably what led to a rectocele that protrudes posteriorly which is nearly impossible because the spine is right there. So it must go from side to side. So when I have to go, I have to go NOW. I'm debating on having the further testing that was recommended.

                          6. I had a barium swallow test because of my swallowing problems, food/water doesn't want to go down. There were a couple of areas of my esophagus that were in spasm and not letting the barium go down. The doctor, not technician, that performed the test made me drink water until it released. At the end he wanted me to swallow a barium pill. It sat there on a little ledge and wouldn't enter my stomach no matter how much water he had me drink! I take a TON of medication. I'm sure some makes it down and some doesn't. It's the ones that burn that are the problem! So, I was told to eat VERY slowly, which I already do. I was recommended to have another endoscopy. I had one two years ago. I don't know what different things they would be looking for this time. The doctor didn't see anything abnormal last time. I asked the PA-C what the treatment for the esophageal spasms was. She said Botox to the affected muscles under anesthesia. I have Botox in my neck. I know what it does. I think I'm going to pass on this one. If they get it wrong I won't be able to swallow at all! Nope, nope, nope!

                          7. I had my hair cut short because I was losing so much. I lost over half, which is really nothing as my hair was so thick. I decided I wanted long hair again and have been growing it out. I never wore it down until today and was surprised at how long it got! It came in THICK, just enough to give it too much volume because most of the hairs have little tiny but subtle kinks in them! I've always had stick straight hair. I have NO idea what happened. Maybe hormones?

                          That's all I can think of for now. We got our new porch/deck/ with stair and ramp access to our home built. It's awesome! I had them change the position of the door and widen the entrance inside. It looks great. Now to deal with the payments! Grrr...

                          8. Oh, I almost forgot about this one. I had my calf muscles completely freeze up. It didn't hurt, but it felt like my lower legs turned to wood. I could NOT walk without a LOT of support that way. I crawled my way up the stairs and managed to hang on to the banister where my craftmatic bed is. It's happened a couple of times. That's how my walking problem started. I hope it doesn't happen again.

                          That is my very LONG update.
                          I hope you all have a great day/night!
                          Rohrer01
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • Hi...

                            I can't say it's good to hear from you with so much getting worse. Glad to hear that you're getting off narcotics and that neurontin seems to be controlling some of your pain. I hope that find the right doctors who know how to treat more of your symptoms. My heart goes out to you.

                            --Linda
                            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                            ---------------------------------------------------------------------------------------------------------------------------------------------------
                            Surgery 2/10/93 A/P fusion T4-L3
                            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                            Comment


                            • rohrer thanks so much for checking in. I miss you. I am greatly saddened by the laundry list of medical issues you are dealing with. Please hang in there.

                              Sharon
                              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


                              • Thank you, Linda and Sharon.

                                I didn't just drop off the face of the earth as some may have thought. Reading is hard, so I don't like to do it. Now that I'm getting better at spelling and my jumbles are mostly gone, I can participate more.

                                What are your thoughts about getting a sagittal x-ray? They did measure my thoracic kyphosis at 7o last time. My heart is misshapen and displaced because of it. I found that out when I had my CT angiogram of the heart.

                                The valves are working properly despite the fact that they are misshapen, too. But I'm on two different heart meds plus potassium. I was hypokalemic before I was on the heart meds. I'm on a beta-blocker and a calcium channel-blocker and my heart rate is on the rise again, along with my BP which is normally low. It's where it was before I was on meds that bring it down! Eek, I hope I'm not getting high blood pressure and am just getting used to the meds that I've been on now for a couple of years. It could also be going off the meds and my pain level being higher. Surprisingly they aren't that much more than they were! Ed was totally right! I could never go cold turkey like he did, though.

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

                                Comment

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