I have some imaging CD's

[rohrer01]

Update

For those of you who are following this thread.

My Dr.'s appointment last month was a waste of time. I declined Fentanyl and was offered Lyrica. So I didn't do either. I don't really know what I expected. My expectations were too high. So I'm working on mentally lowering my expectations since I'm going to have to live this way for the rest of my life.

I had an appointment today with my new physical medicine doc. He's quite brilliant, actually. He's an M.D., Ph.D. in his field. Today was the follow-up for the Botox. He's going to lower the dose of Botox since I had quite the pain episode when the drug peaked out. My shoulder and arm pain is from the release of the upper trapezius. When it relaxed some, my shoulder lowered which put stress on the muscles in my neck and arm, thus the left arm pain. My PCP wasn't able to make the connection and thought I had common bursitis in my shoulder. This new doc is brilliant! I know I said that already. =) He gave me occipital nerve blocks today to help with the headaches. I don't know if it will work because the injections caused more pain and it contained two anesthetics. It's the steroid in it that's supposed to reduce the inflammation from around the occipital nerves. We shall see. I go back on Tuesday for some trigger point injections around the scapulae. These won't contain steroid, which I'm fine with. He's worried about too much steroid dropping my cortisol. He seems to remember everything. I'm very sad to see my old physical medicine doc move away. He was very good, too. But the new one is trained in doing the more dangerous procedures, and does a lot of them. I'll need some work on my left scalene which is attached to the first rib and VERY close to the lung. I'm not quite sure what the plan is there. I'll find out on Tuesday. He seemed a little disturbed by how out of whack my neck and upper back are. I have a bony prominence at the base of my neck, which is either part of T1 or part of the first rib which is very displaced.

The pain I experienced from the Botox releasing the few muscles treated is just a drop in the bucket to what would happen with a fusion that straightened that area. I concluded that to him out loud and he told me that would be putting it mildly! The possibility of having fusion really scares me now that my muscles have developed and been so short in places for so long. I don't know how you all survive. My whole arm went numb after the Botox! I still can't bring it straight up and out to the side without a fair amount of pain. I'm trying to get my mind around how this surgery could make anyone feel better when they have it done in middle age or later. Maybe it's just because of where my particular curve is and more muscles are involved. Dr. Tribus did tell me that I wouldn't be able to raise my arms after surgery. Now I know why he said that.

All in all the appointment went very well. I'm actually feeling better these last couple of weeks and have begun the weaning process once again. It would be nice not to be on this rollercoaster, but that's life. I hope everyone is having a great day! =)

I'm thinking of JennaKB especially today. She's having her long-awaited surgery tomorrow. I hope all goes well with her!

Take Care!

[mabeckoff]

Thanks for keeping us informed

[JenniferG]

Rohrer, after reading that, I just want to reach for that magic wand. You wonder how others get by, and I wonder how you get by.

I'm glad you've found such an excellent doctor,. The pieces do seem to be falling into place to form a proper picture of your back and knowledge is power, they say. Hope the new injections quickly do their work and you get some relief.

[rohrer01]

Thank you, Melissa, for taking the time to read this. I'm now wondering if some of your pain is caused by your new anatomy as well. Really, when you think of it, our muscles grow to accomodate our spines. When that gets changed, especially around the neck area, it really makes the neck and shoulders hurt! It can also make your arms go numb. Mine was much more minimal than yours. I asked if I should try to stretch it every day and he said, "Yes." I know your case is much more complicated than mine, but it's something to think about. It takes time to reconfigure those muscles.

Jennifer,
Thank you for those kind words. It is encouraging. Really, though, when I think about it, I'm not as limited as I could be. I can do most anything that anyone else can do. I just avoid the stuff that hurts me. Otherwise, I'm able to be active and don't walk with a limp (unless my lower back is really hurting). I avoid running, but have to at times when my grandson darts away from me. It hasn't hurt me, yet. So I'm one of the more fortunate ones when I look at life in those terms. I see elderly people just struggling to get around the store. I can see the pain on their faces as I walk effortlessly by. I'm not saying I don't hurt. But it's better controlled than many people's pain.

I was saddened a couple of days ago to have to take a pain pill to get rid of withdrawal symptoms and not for pain. This tells me it's time to cut back. Although today was kind of rough (well it's yesterday now) and I had to take four pills. I really want off of this stuff if for no other reason than to give my body a chance to readjust and desensitize. That way when the pain gets really bad, then the pills will work ten times better! I'm hurting tonight, though. It's a bummer not to be able to sleep. The "cure" keeps me awake. That's my response to narcotics! I can't believe that junkies actually like taking the stuff. They know that they'll feel like garbage if they get addicted and can't get any more. Why would anyone want to willingly put themselves through that if they didn't have to? It's just inconceivable to me. I'm rambling.

Good night all!

[titaniumed]

Rohrer, after reading that, I just want to reach for that magic wand. You wonder how others get by, and I wonder how you get by.

I'm glad you've found such an excellent doctor,. The pieces do seem to be falling into place to form a proper picture of your back and knowledge is power, they say. Hope the new injections quickly do their work and you get some relief.

I also agree.....yours is a special case.

I’m thinking of Jenna also. They have probably started on her as I type this. She will have a long complex surgery......Deep breaths.

Ed

[jrnyc]

i am glad to know there is at least one doctor who KNOWS about steroids dropping cortisol
levels when too much steroid is given....a rare doctor, sorry to say....

hope you feel better, rohr...

jess...& Sparky

[rohrer01]

Ed, I guess that means I'm "special". LOL

Jess, I told him about your case and he just cringed! Yes, I'm glad he's aware of that as well. When I asked my PCP about it and requested a blood test, he refused. He said that wasn't something they were worried about. I just thought to myself, okay. I even told him about you and he didn't seem to be concerned about it at all. At least the new doc is aware of it. He even said something about being concerned about my lifetime intake of steroids. So I'm wondering if it could be cumulative over time as well. There's so much to know and so much we don't know! I hope you are feeling better, too. =)

[rohrer01]

Okay, it's been awhile since I've updated anyone as to what is going on. So here it goes. I had another L5/S1 injection a couple of months ago. It didn't work AT ALL. So, the doc wanted me to try chiropractic...again. Sigh...I know all the negative stuff I've said about chiros. Well, it turned out to be the same negative experience. My pain has increased in the lower L spine/sacrum as well as my right shoulder (will explain more). The only thing that feels a little better is my neck. My range of motion in my neck seems a little better after chiro. So not completely ALL bad, but the doc told me never to go back. That, after telling me to go. ha.

Meanwhile, my right shoulder has started hurting as well. I "think" that started around the time of the second Botox, which by the way did relieve much of the pain around my left clavicle/shoulder. So both shoulders were hurting and it gradually got worse on the right. I played tennis, which probably wasn't a good idea. But my shoulder didn't hurt bad enough to prevent me and there was no sudden pain. After that, though it got worse and worse. Not sure if it was tennis related or not because I was able to play again at a later time. Now there is NO WAY that I could play tennis. My doc said it looks like a rotator cuff injury.

So now for the treatment for both:
I'm being sent to PT for both problems. I hate the questioning session that goes on for an hour. I don't know if I'm even consistent with my answers because it depends on how I'm feeling at the time. My lower back was feeling pretty good yesterday, when I went. So I didn't have any significant limitations that particular day. However, my doctor wanted the PT to give me an SI belt to try for the lower pain. So I wore it all day, wasn't sure if it was helping or not, since I was having a "good" day in that regard. I also slept with it on at night. I had a decent nights sleep and the pain didn't wake me up too frequently. Yes, I awake with pain a LOT. I got up to use the restroom and when I took the belt off to do so, OUCH! The pain set in. So, maybe this belt will help after all. I have yet to go to the gym to see how I do there. Since it's only day 1 I can't really give a good evaluation of whether this was coincidence or not. My only fear is that it will weaken some muscles that normally stabilize these joints. So any input on this would be appreciated. The PT guy told me to wear it in any situation when I have pain. He said that when I'm laying down or sitting watching TV or what-not that I didn't need it. I told him that it hurts worse when I sit and lay. So he thought that maybe the belt woudn't work for me. I'm just going to try wearing it all of the time for a little while, then compare it by taking it off for a couple of days.

As for the shoulder, the muscles are very tender around it. I'm hoping that it's just muscular. When the doc examined me, he said that the scapula wasn't moving freely and was kind of stuck down because of my altered anatomy. The docs goal was to free the scapula. The PT is leaning toward massage around the deltoid muscle. At least that's the impression I got. I know that there is a little muscle under that shoulder that is extremely sore. My range of motion when twisting or trying to reach up and behind or down and behind is very limited and hurts a lot. So I'll have to see where that goes. The doc suggested a cortisone shot into the shoulder if PT doesn't work. I'm hoping PT will work because I'm getting enough shots, although the trigger point shots are without steroid now, at my request.

It's hard to decrease pain meds when these "new" things keep cropping up. I can feel my body rotating and my left hip is starting to shift forward. So, I just might have to admit that I'll be on pain meds for the long haul. I'm adding some NSAIDS to try and stave off my narcotic use. All it's doing is helping me keep the dosing steady, as my pain is increasing in some areas as it decreases in others. So I feel a little like I'm at an impasse. At least the headaches are less frequent. I had a pretty significant vitamin D deficiency. That can cause neurological deficits including migraine, a fact that I was not aware of. I still get them and have one today. But they're not every day and not as severe.

So that's the latest. I'll try to update more frequently, as it helps me keep track of how I'm feeling and I hope helps some of you who are in similar straights. I hope you all are having a nice day!

[rohrer01]

Hello,
For those of you who are following my thread, I'm giving another update. I'm being sent to the surgeon again for a consult. PT didn't help the shoulder at all. The pain is aweful and runs down my arm. Sometimes it's so excruciating that I just can't stand it. I have lost nearly all the strength in my arm for certain movements. My neck pain is ridiculous as is my upper back pain and my low back pain. I'm whining, I know, but my quality of life is horrible. It especially upsets me that I dread playing with my grandson because the pain is so bad that it just sucks the joy right out of it. I'm sad about the whole thing.

I'm in a lose lose situation. IF the spine surgeon agrees to do surgery, that will be just aweful because I'm scared of that surgery. My guess is that I have torn something loose in my shoulder. So I will need surgery for that as well. I think I can pinpoint when my shoulder got REALLY bad. It was when I went to the chiro. She grabbed my arm and yanked it HARD in a full range of motion circular rotation. I thought I was going to pass out from the pain of that. It literally caused tears to stream down my face. So I'm pretty sure that if something got torn, it was at that moment. So the point of that is, it would mean two surgeries if my shoulder is torn. I have a friend who is a PT and she said she's almost positive something is torn because of my symptoms.

The other bad news for me is if the surgeon doesn't want to do surgery on my back. I'm in so much pain all of the time that my quality of life really stinks. Also, because my shoulder originally started bothering me due to impingement syndrome (scapula can't move freely), there would be no point in trying to fix the shoulder as my doctor thinks it would just tear loose again because of my scoliosis. So I'll have to live this way. I can't express how sad and frightened I feel about either option.

So I had x-rays done yesterday. It looks like the scoli has progressed on both curves. It also appeares to me that there is a lateral listhesis forming at the apex of the upper curve next to the left clavicle. I will repost the x-rays so you can give me your opinions on progression. When I measured the new x-ray, I got around 50* upper and 40* lower. I'll be curious to see how the doctor measures it on Monday the 18th. I'll let you all know. So here are my films, again:

2005 2005%20radiograph[1].jpg
2010 I0000001.DCM2010_001_1.jpg
2013 below: I've never had so much trouble uploading pictures! It seemed I had it right and it linked the one I edited in its unedited version. Now it's linked my 2013 in a weird way. I've done the same procedure for uploading each item. There must be a glitch in the system.

[Pooka1]

Rorher, very sorry to hear about this.

I agree the chiro may have torn something. That sounds reminiscent of my husband who tore his rotator cuff. Very painful and no sign of abating until he had surgery (his first ever). That ROM for people without scoliosis might be dangerous on someone with a high curve like you have. A chiro can't know that.

So you have a double thoracic curve, yes? Also, without measuring, there doesn't seem to be a lot of progression in the last three years, no?

Hang in there and don't give up. Solve the problem.

Sharon

[leahdragonfly]

Hi rohrer,

I notice your pelvis is not straight forward on the new x-ray. It appears that you are turned to one side, not standing completely square to the x-ray plate. The rad tech should have probably repeated the film and ensured you were standing with your pelvis square to the plate. It is sometimes hard to make accurate comparisons on x-rays when you are standing incorrectly. My kids have both had repeats of similar x-rays due to their positioning. I would definitely ask about that when you see the surgeon.

Sorry to hear how much pain you are in. Please do not give up, and let us know how things go next week with the surgeon.

[rohrer01]

Rorher, very sorry to hear about this.

I agree the chiro may have torn something. That sounds reminiscent of my husband who tore his rotator cuff. Very painful and no sign of abating until he had surgery (his first ever). That ROM for people without scoliosis might be dangerous on someone with a high curve like you have. A chiro can't know that.

So you have a double thoracic curve, yes? Also, without measuring, there doesn't seem to be a lot of progression in the last three years, no?

Hang in there and don't give up. Solve the problem.

Sharon

Well, I actually got my x-ray report in the mail today. The hospital where I had the films done says my lower curve improved from 37* three years ago to 33* this year. Maybe the exercise at the gym is really doing something. However, it isn't helping with the pain. Not sure what the solution for my problem is. They measured the top curve at 42* from two years ago (not posted) and 42* this year. However, two surgeons, Dr. Tribus and Dr. Hey both measured my curve at or within a half of a degree of 46* three years ago. Not sure how it will be measured. Just noticed that I need to edit my 2010 film. (embarrassed)...

The thing is, I don't know what to do to solve the problem. Back pain is a bear. The shoulder hurts constantly and if it's impingement syndrome, can't be fixed without fixing the spine, which I don't think will happen. I'm stuck with no obvious solution. As far as giving up; there's no way to give up unless I die. I'm stuck not giving up. My insurance carrier is hard to work with since they are an HMO. UGH!

[rohrer01]

Hi rohrer,

I notice your pelvis is not straight forward on the new x-ray. It appears that you are turned to one side, not standing completely square to the x-ray plate. The rad tech should have probably repeated the film and ensured you were standing with your pelvis square to the plate. It is sometimes hard to make accurate comparisons on x-rays when you are standing incorrectly. My kids have both had repeats of similar x-rays due to their positioning. I would definitely ask about that when you see the surgeon.

Sorry to hear how much pain you are in. Please do not give up, and let us know how things go next week with the surgeon.

That is very observant of you. Yes, my left hip was up against the machine because I'm twisting. That's the way I stand. However, she was trying to move me around in the films and trying to position me rather than just letting me stand how I normally stand. The saggittal view came out horrible. You can't see anything except a few vertebrae through my lower thoracic area and my neck. Everything else is totally whited out. She kept telling me to lean forward in those ones. It was a very frustrating session. She had me facing the film instead of standing in front of it. I have NEVER had an x-ray done that way before.

As Sharon mentioned, it doesn't look like a whole lot of progression in three years. However, if you look at where my right clavicle is, you can see that it is much farther away from my spine in the recent film. I don't know whether this is due to progression or rotation. I'm going to guess that there is rotation. When I zoomed in at that level on my computer, it looked like the vertebra at that level was starting to slightly shift to the left. I hope this is NOT happening and I'm imagining it.

My guess is that my trip to the surgeon on Monday is going to be a wasted trip. I'll be left hanging on what to do about my shoulder. It's a very frustrating situation because there's no good solution.

Thanks for looking at my films. I noticed that one was kind of indecent, so I cropped it off. =/

[rohrer01]

Okay, here's the scoop. I went to see the surgeon today. He measured my x-rays from 2005, 2010, and 2013 side by side. He used all the same end points and got right around 42* for the upper curve on all of them. We didn't discuss the lower curve. It was decided that the scoliosis is indeed causing the pain I'm having in my upper left back. However, since there is no progression, the shoulder injury has to be unrelated. This is GOOD NEWS. That means that if the rotator cuff is torn, I can get it fixed without worrying about it tearing loose because of the scoli. He said my shoulder blade moved like it should when he had me put my hand behind my head.

So based on the fact that much of my pain is muscular (or of unknown origin), the shoulder is a separate problem and he is unsure what the outcome of surgery would be painwise for my upper back (it could make my neck hurt worse), that means NO SURGERY on my spine. I had mixed feelings for a little bit because I have always thought that getting the surgery done might help my pain. Then this overwhelming sense of thinking that this surgery may never be in my future came over me. It's a nice feeling. I've been told since I was a teen that I definitely would need this surgery some day. It's like a release of a dread that's been hanging over my head.

I know Dr. Hey and Dr. Tribus both said I had progressed in 2010 and both measured it at 46*, which scared the life out of me. But there they were, all measuring around 42 degrees! That means I have a really stable curve since I was diagnosed at 16 years old with a 39* curve. He apologized for giving me a scare. He also commented on me being thin and muscular and that being athletic was good. That made me feel good for all the hard work that I've been doing trying to build up my back and core muscles.

I know I will have to combat this horrible pain for the rest of my life. But at least the scoliosis is only part of the monster and not the whole monster. Whatever is wrong with my muscles (dystonia) and whatever ails me from natural aging (DDD and arthritis) are the things that I CAN manage. The scoli pain will always be there, but this somehow takes the scary out of this monster. I'll just deal with it and not worry so much about progression anymore. =)

I guess it's time to change my signature, too!

Take care all.

[Pooka1]

Well that's pretty good news that your curve reached what it did as a teenager and just hung there for decades. Maybe that means it will never progress any further. Let's hope so.

I'm happy for you! :-)

These testimonials are so valuable.