I have some imaging CD's

[rohrer01]

Yes, they should definitely have to take a class on bedside manners! As if we aren't self-conscious enough. The funny thing is, I wasn't self-conscious until he made that remark. Then I was always looking.

Now that I'm getting older, I can really see my body looking a bit off. One hip sticks out and I look really curvy on that side. The other side I look like a stick, straight up and down. My belly button is off center. I have ribs that stick out in the front on one side. When I look in the mirror at the back I am hollow between my shoulder blades. One blade sticks out because of the rib hump. I've developed a new rib hump where my new curve is. One arm rests on my body when I stand while the other arm dangles inches away from my body. I feel all bad when I point it out to my hubby and he tells me that only "I" can see it, that I'm beautiful to him and he doesn't think I look out of place at all. I love him for it, even if it is a stretch of the truth! I just tell him he needs new glasses and love is blind. We both get a little laugh. LOL

[rohrer01]

Hi rohrer,

I had negative saggital balance pre-op as well. In my case I think it was because i have a very hypokyphotic thorax (like you describe), and because my lumbar area had a loss of lordosis due to arthritis/degenerative changes. I would have been very bent over forward from the lumbar and my head would have been forward from the plumb line. So to compensate, my spine sort of shifted back in the lower thoracic area, which kept my head from tipping forward, but gave me negative saggital imbalance. I believe it is not really of much consequence or progressive.

Hi, Gayle.
Just wondering who did your surgery? I measured mine using the same vertebrae that the scoli docs used and according to."my" measurements I'm at 47* and 42*. The radiologist measured me at 42* and 37* with progression from the previous film that measured 46* and 38*. Soooo, I tend to think that my measurements are more accurate since smaller numbers do NOT equal progression! Did that make sense?

Anyway, I was wondering because you got such good results. I don't think 5* is even considered scoliosis anymore and that's great! How do you feel? Since you had negative saggital balance, did you feel like you were leaning forward when you first stood up? A friend of mine that had the surgery for a very large curve (they could only correct her to 60*) said she felt really weird and her center of balance was off. That's why I ask. I'm sure you get used to it rather quickly. I've been reading the comments on the other thread about this topic. I'm also surprised that they did your surgery with only a 47* curve. I'm guessing it was mainly to address the other problems, right?

Sorry for my rambling curiosity. It's just that I've been progressing steadily in one curve or the other for the past three years. It's year four since the progression started, so I don't know if they are going to do another x-ray in March or not. I would be curious to see if it is finally stabilizing.

[leahdragonfly]

Hi, Gayle.
Just wondering who did your surgery? I measured mine using the same vertebrae that the scoli docs used and according to."my" measurements I'm at 47* and 42*. The radiologist measured me at 42* and 37* with progression from the previous film that measured 46* and 38*. Soooo, I tend to think that my measurements are more accurate since smaller numbers do NOT equal progression! Did that make sense?

Anyway, I was wondering because you got such good results. I don't think 5* is even considered scoliosis anymore and that's great! How do you feel? Since you had negative saggital balance, did you feel like you were leaning forward when you first stood up? A friend of mine that had the surgery for a very large curve (they could only correct her to 60*) said she felt really weird and her center of balance was off. That's why I ask. I'm sure you get used to it rather quickly. I've been reading the comments on the other thread about this topic. I'm also surprised that they did your surgery with only a 47* curve. I'm guessing it was mainly to address the other problems, right?

Sorry for my rambling curiosity. It's just that I've been progressing steadily in one curve or the other for the past three years. It's year four since the progression started, so I don't know if they are going to do another x-ray in March or not. I would be curious to see if it is finally stabilizing.

Hi rohrer,

my surgeon is Dr Robert Hart in Portland, OR. I like him very much and he is coauthor of a number of studies with many other of the "big" names seen here. I had surgery for pain caused by severe spinal stenosis, with spondylolisthesis at L4 and L5. I had a previous fusion there that had a pseudoarthrosis at L4-5. My lumbar curve increased from around 30 degrees to 47 degrees in 2 years time, due to instability and degeneration. Dr Hart told me my spine was the most flexible he had ever seen, which allowed for such a great correction. I have joint hypermobility so I don't know if this is why my spine was so flexible(it was also very unstable due to this). So that is why I had surgery for curve that is smaller than some others. The other severe degenerative problems could not be fixed without fusing up to T8 due to the scoliosis.

I had a really hard time adjusting to my new posture after surgery. I felt like I had someone else's back in my back for over 6 months, although I did get used to it gradually. I had an extremely loud and painful pop in my back yesterday that is still being checked out, but other than that, my back has been doing quite well and I am very active with swimming, light weight training and elliptical training.

[rohrer01]

Now you made me worry for you. Are you going to get an x-ray to make sure one of your rods didn't break? It sounds like you had a LOT of problems with your back at a very young age. I'm sorry to hear that, but glad you are okay now, aside from the pop you felt. I've been told by a physiatrist that I have very floppy joints. My curve, however, is another matter. It is, or was, very stiff. It didn't budge hardly at all for 20 years. I went to a chiropractor for pain and she broke it loose. Now I'm in more pain than before AND my curves are progressing. I guess THAT was a bad choice. The only other problems that I know of in my back are mild DDD in L5/S1 and spina bifida occulta in L5, which is pretty harmless. I have the usual arthritis starting and what not, but nothing outstanding for my age. At least I have that going for me. Thanks for the reply.

[green m&m]

My bad. Thanks for the correction. I just saw the vertebra shifted out there. It still looks awefully painful... What would you call it, then?

Also, what is "negative saggital balance"?

Thanks in advance.

It’s just combination of some vertebral shifting and mainly some bony erosion and changes due to tumors around my spine. It looks painful, but surprisingly and lucky for me, my pain levels don’t match the imaging.

[rohrer01]

I may qualify for botox!

I had some hopefully good news on Monday. I went and had 10 different areas injected for trigger point injections. I feel much better in my upper back muscles today. I reviewed my headache journal with my doc and I had like 23/31 days with headache. He talked about possibly getting botox for my shoulder, neck and head areas to help with the headaches. I see the headache specialist about it tomorrow. If she agrees, then my other doc will work on getting approval with insurance since nothing else is helping with the headaches (I have already failed every medicine that they have tried). I soooo HOPE that I get to try this and will get some RELIEF from the headaches! Wish me success tomorrow at the doctor, PLEASE!

Rohrer01

[titaniumed]

Rohrer

This is good news.....

The injections must be up pretty high on you since your curve is high thoracic and lower cervical....a rare thing.

I’m sure you will report your success.

Ed

[rohrer01]

Rohrer

This is good news.....

The injections must be up pretty high on you since your curve is high thoracic and lower cervical....a rare thing.

I’m sure you will report your success.

Ed

Oh, if I can qualify, I will certainly let everyone know how it goes. I can't get them for my spasms like Jess does, but this might help a LOT for my neck and head pain. I have high hopes! Another plus is they go around your face just like they do for the rich and famous that don't like wrinkles, LOL. I don't have wrinkles, yet. But if I can start getting these shots, it just may help me keep my youthful beauty...hee hee (not that I'm beautiful by the way, just saying)...LOL

If this lady tomorrow lets me down I will be SOOO upset! I'll keep you all posted.

Smiley,
Rohrer01

[rohrer01]

Well, more hoop jumping. I'm disappointed, BUT I was told that a small percentage of people that get botox for headaches actually get a worsening of neck and shoulder pain. That makes me feel better, as I would probably be in that category. I react very strangely to meds... She has me taking 500mg of magnesium now. We'll see what happens with that, as one side effect of magnesium is diarrhea. I certainly hope this doesn't happen!

[jrnyc]

i'd be really surprised if you do not have a stomach reaction....
what was the reason for you to take magnesium....?

i know there are always people who have a different reaction to meds...
but there is no way to know unless you try...
i know a few people who get botox for headaches and they are helped by the shots...
i hope you will be able to try them....

jess

[rohrer01]

Supposedly high doses of magnesium are supposed to help with headaches...???

[jrnyc]

never heard of that....
be careful...i've only heard of it for stomach problems...
(to solve constipation)

[rohrer01]

They use it for preterm labor. At least in my case they used it along with terbutaline. I know about the uh..hum... "cleansing" effects of it. So we shall see what happens.

[rohrer01]

No pain!!!

I just want to shout it to the world. I woke up with NO PAIN this morning for the first time in I can't even remember!!! I'm not totally pain free as the day wears on, but no narcotics needed at all today so far. I'm SO HAPPY! Mornings are usually my hardest time. I have so much pain during the night and when I wake up, it has just become something that I exptect. So I'm in total bliss about this, even if it doesn't last. (SMILE) I had the best night's sleep last night ever, too. I don't know the reason for this. I recently had trigger point injections and magnesium added to my daily diet of pills and yesterday my PCP doubled my heart medicine. I'm hoping it's the combination of the better diet, more exercise, and the new meds. I'm having some hope for the first time in a LONG time that I can get off of the narcotics and NOT have to live with the pain. If I don't take the pain meds then I have to live with pain. Then I can only tolerate that for so long and end up back on them. I have had periods of relative pain relief and not needed them before. But lately, for the past couple of years, you all have read my struggles. So even ONE DAY is a start and I'm really happy!

[Pooka1]

Wow that's amazing news! Very happy for you!