I have some imaging CD's

[rohrer01]

Good luck rohrer01. Hope you get the relief you so deserve.

Thanks, Jennifer. You've always been one to lift my spirits. I'm a little nervous, but we'll see. Jrnyc (Jess) gets botox for her upper back pain. I know they are afraid of progression if they treat the whole upper spine. There's not a whole lot of experience with adult scoliosis at my hospital, yet. It's a great place, but they just don't have anyone who treats adults, only peds. So I feel like I'm an experiment.

[loves to skate]

Rohrer01,
I hope the Botox works for you. I have a friend who was in a study that was testing Botox on Migraine parients and it helped with her migraines a lot. You will be in my prayers.
Sally

[rohrer01]

Rohrer01,
I hope the Botox works for you. I have a friend who was in a study that was testing Botox on Migraine parients and it helped with her migraines a lot. You will be in my prayers.
Sally

Thank you, Sally. That gives me some hope. The doc's pretty sure that the occipital injections will help a lot, but if not, then he'll do more around my head and face. I hope the shoulder pain settles down, too. I'm getting a little nervous as the day approaches!

[rohrer01]

Botox update

I just wanted to update everyone on how my Botox injections went yesterday. First of all the injections don't hurt. I had a couple done in the paraspinals on both sides of my neck. I don't think he did the occipitals like he had planned on. I didn't feel any injections there anyway. He also did my left upper trapezius in three spots. When he did that my shoulder and head jerked because of the "trigger points" in the muscle. He told me that normal muscle doesn't respond that way when you put a needle into it. Okay....

Afterward I felt fine. On the way home my left shoulder and arm started feeling very weak and weird. It ached and felt numb all the way down to the top of my hand. That went away pretty quickly and by the time I got home (an hour drive) my left shoulder and bicep HURT like I had done a major work-out and wrenched my shoulder in a bad way. That lasted through the day and I had a headache. I also noticed that the muscles that were injected were extremely swollen. When I looked in the mirror, I also noticed that there was a stringy piece of muscle sticking out that stretched from my upper neck to my shoulder.

Today, my shoulder and upper arm still ache a little. That weird muscle strand still sticks out and my neck HURTS. I don't know why it hurts today and not yesterday, but it doesn't feel like bruising. It feels like muscle spasms. So far I still have pain through the neck and shoulder upon standing. I am hoping that the Botox will eliminate this symptom. He said it takes anywhere from two to six weeks to get the full effect of the Botox. So I have a little waiting to do to see if it helps.

My usual pain meds aren't helping, so I reluctantly put on my last fentanyl patch, which isn't helping either. My doc offered to give me a refill of the fentanyl to use when the pain gets out of hand, but I declined. I told him I had one patch left and today I'm using it. I don't like the patch delivery system because it seems that you still need to take pills with it anyway. Although I will say that the oral medication usually works better with a patch. But that's a different topic.

I will keep you all updated as time goes by, since these shots don't work right away. I'm waiting for the initial trauma of the injection to pass. It should take about three days.

Hope you all had a wonderful day!
Rohrer01

Just one last thought. I am getting a massive headache from this neck pain. It's right sided today. This is a symptom that I would have before I got the Botox, so I can't blame it on that. I'm hoping that the Botox will kick in and stop this from happening! I hate headaches! :-(

[JenniferG]

Sorry you're going through this. I hope you don't have to wait that full length of time for relief.

We're going away for the weekend, back Monday night. Hope to read you're feeling a lot better by then. Good luck!

[jrnyc]

rohr, i am so sorry you are going thru this...

i usually get the injections in upper left spine, where
my "hump" is...now and then they will inject a little into upper
right spine...
the shots always hurt...seems the tighter my muscles are in
those areas, the more the shots hurt...i have never had a shot
anywhere in my spine or SI joints that didn't hurt, i don't think...
doctor said to try to relax muscles, but i can never seem to do that...

i have never had any reaction of any kind, though...
no swelling, nothing...
the botox relieves my muscle spasms...but it not the same kind of
relief as i was getting with SI joint injections of steroid...

i hope the botox kicks in fast and relieves your spasms...
i know botox can kick in for cosmetic tx in 2 days....
i NEVER heard of a doctor saying it took any longer than 2 weeks for it
to kick in when used therapeutically for muscle pain type stuff

jess...& Sparky

[rohrer01]

The swelling was gone by the next day. I had the migraine starting before I got the injections, so it could be that it's just running its course. The pain in my neck doesn't feel like bruising, but certainly could be. I've never had a bruise to my paraspinals as far as I know. It's worse in the right side, but that correlates with the headache. He's being ultra conservative with the amount of Botox because he doesn't want my head to droop. So I may not get any benefits this time around. He said that I might notice a difference in two or three days but the full effect may not happen for two to six weeks before it starts to decline. If anyone's going to have a strange reaction to any medicine, it's going to be me! LOL... Not really funny, but so true!

[jrnyc]

rohr, i bruise from any needle most of the
time, like from blood work....i usually get a little bruise from
any kind of shot in spine...and for me, they hurt...really hurt...
my muscles are probably more tense than i am aware of...
same thing can happen with acupuncure IF the muscles are
tense...or if you move while the acupuncture needle is in...

jess

[rohrer01]

For some reason, needles don't hurt me. That's okay with me! My muscles were so hard that he teased me and asked if I had a rock implanted under there! When the needle went in, my muscle gave a HARD jerk. He said that was definitely from trigger points within the muscle because normal muscle doesn't do that. It was a weird feeling. It felt like the tics that I get there, though. It was just induced by the needle. I don't know why, but it was a little embarrassing to jerk like that because I was trying to hold very still.

It may take a couple of treatments to get the dose right. I'm going to ask him about the other areas around the spine that are painful. Now that I have the dystonia diagnosis, maybe I can get injections in the other spasmed areas. The fear of the other doctor was that my spine might start collapsing if the paraspinals are weakened. This new doctor may have other opinions, I don't know.

I don't quite understand why they won't let me have another epidural injection, though. They work so well and totally get rid of my lower back pain. I know my DDD is pretty mild and has actually improved. But the pain is still there daily. It's not severe, usually, but it's wearing. I take more pain meds because of it, even though it doesn't seem to help that much. Walking USUALLY makes it feel better. But I have days that walking aggrivates it, so I never know. I'm doing EVERYTHING that they are suggesting I do, so it's not like I'm an uncooperative patient. It's just so hard when you have daily pain. It just wears me down to the point where I feel like I have no energy. If I do have a really good day, then I always have worse pain when the endorphins wear off. I can't be in the gym or vigorously doing stuff all of the time. I've never been a high energy person. My metabolism is just too fast. I go in bursts.

I suppose that's all for now. Oh, I got bit by something on my side while working in my garden the other day. Ugh. Either that or I'm getting Shingles. I haven't looked that closely at it. It definitely hurts and itches and the red is spreading around my side. I certainly hope it's not Shingles!

Have a good night!
Rohrer01

Ugh! I think it is Shingles! I have three bumps there now instead of only one! Argh!!!

[loves to skate]

Sorry to hear the shots have caused you extra pain and hope the start to work for you soon.

Shingles start out with tingling before you see any sine of blisters or itchy spots.

Take care, Sally

[rohrer01]

Okay, so here's my update:
It turned out that I did have shingles. The good news is I caught it super early and am on megadoses of the antiviral acyclovir five times a day. I started getting better within two days of taking the meds.

My neck pain is worse than before the Botox, unfortunately. I think the weaker muscless are making the other muscles work harder. My head doesn't droop forward but if I tilt it back it droops backwards fairly easy. Headaches haven't stopped because the occipitals are working overtime, at least that's what I think. I developed pain in my left arm right away. It seemed to subside after about a week. The bad news is that there is an area in my range of motion that is excruciating. I went to the gym and did the side arm lifts. It was absolutely agonizing! If I hold my arm straight to the side and lift it, it starts hurting before I get to shoulder level with it and a little beyond shoulder level. I had to quit that exercise. The funny thing is, if I bend my arm like a chicken wing, I have full range of motion in the shoulder. My neck feels much stiffer than it did before. I feel like the range of motion in my neck has also worsened. I'm saddened by this outcome. I had such high hopes for some relief. I also feel like I'm due for some more trigger point injections, but am not sure if I should get them done. It is really hurting between my shoulder blades again.

This may just be a trial and error process OR Botox may not be the solution for me. I kind of felt like it was my last hope. I'm actually taking MORE pain meds now. =(

[jrnyc]

i am so sorry that botox has not helped you, and seems
to have made some things worse...
it basically freezes muscles...
i do not know what it did to you, freezing muscles where
the doctor injected...to make the pain get worse...
i have had times the botox helped me a lot and times it
didn't seem to help me as much...
the ONLY time it ever made anything worse for me was when
it was used, without my knowledge, to inappropriately
inject sciatica...THAT made the sciaitca worse...
i was really upset that the pain doc did that without
consulting with me...
but whenever botox has been used appropriately on me,
it has helped...either a little or a lot...

so sorry, rohr, that you are in more pain...

jess...& Sparky

[JenniferG]

I'm so sorry to hear that very disappointing news.

[mabeckoff]

I am sorry to hear that you are still having problems

[rohrer01]

Thanks everyone. I actually noticed today that I DO have trouble lifting my head up if I'm leaning forward. It hurts to do, as the unaffected muscles are strained so hard. But, as long as my body is upright, I have no problems. I definitely do NOT need a larger dose in my neck! I think I will ask him about injecting different muscles next time. My upper trapezius is still as hard as can be. I don't understand this. I got three injections in it! I'm not quite sure what to do next. I'm not even sure I should call the doc about it, as there is nothing he can do at this point. It just has to "wear off".