I have some imaging CD's

Wow! That's one big fish. Do you ever watch "Wicked Tuna"? I never realized how big tunas really are.
I hope your pain is better. I don't remember mentioning those things. I used to live eerily close to Mt. St. Helen's in the Cascade Mountains. Our neighborhood was called "Cascade Park" --- eek! We moved right before she blew. I heard that my neighborhood was coated in inches of ash. I remember seeing the snow disappear and then the bulge appeared sometime during the last year we were there. The family went on vacation a few years back and we drove up there. I was devastated. My brother's Boy Scout platoon use to camp at Spirit Lake.

I'm having a bad pain day today. I had my trigger point injections (sore and bruised up) and took my last clonazepam last night. I weaned off from 6mg/day so the muscle spasms are up a bit and the ticker is ticking faster. I have heart meds for that, though. I'm just tired all the time. That's the reason for weaning off the benzos. I'll keep it around for the really bad days once it's good and out of my system.

Rohrer01

I borrowed the sea bass laser thing from Austin Powers. It breaks up the monotony..... Ha ha.

I have not watched wicked tuna but was on a tuna tournament many years ago in Cabo San Lucas. Tuna fishing is not a great scoliosis activity, hanging onto the rod for hours is a workout. It trashes the back. If I go to the ocean, I dive, its much easier. Some of the tuna’s are quite large, some of sushi quality will sell for big bucks in Japan. Approx $800,000.

The Mt St Helens area is a beautiful area......I can see your concern or hesitation on the volcano thing, but, cataclysmic explosions don’t happen often....

I have been struggling with the bear traps or gripping in the upper thoracic. Again, I like to say atmospheric pressure, but have no data, records or proof. I have pain and look at the weather maps and notice low pressure systems moving along and it really jacks up my assumptions. I also have a GREAT sagittal balance, and little scoliosis up in this T4-T8 area which is where the gripping happens. Its not alarming pain, but its really starting to bother me lately. I expected problems down low in my surgeries, and that’s been fantastic. I never expected this upper thoracic problem or the herniation’s in my neck. I am laying down often these days....

I hope the injections help. Its something I never did, only because communication between my “previous” doctor was lacking....(before he retired) I was lucky Dr M came to town.

Communication with surgeons is important. E-mail is the best way through an assistant. I like to establish this communicative subject matter upon the first visit and exchange e-mail addresses.

Ed

Ed,

That upper back and neck pain is horrible. I never expected to have lower back pain as my problem has been upper back and neck pain with arm involvement since I was about 12 which really took a turn for the worse when I was 16. I empathize and sympathize as I know exactly how bad that upper upper back and neck can be. I've had bouts, especially when my kiddos were small and I'd lug them around, where my left arm would be so bad that I couldn't hold a glass of water.

I don't have experience with the bear claw as I'm not fused. But, as of late, have severe muscle spasms that run around between the ribs (intercostal spasms). When it's like that I can barely move. I get trigger point injections into the muscles that are around and under the scapulae that actually help prevent those. The spasms are so painful and feel like there's a tight band pulling the scapulae together and it hurts underneath of them, too. I can barely breathe when that happens. I wonder if what you are experiencing isn't something similar. A little needle work might be worth a try if you have someone feel your back to see if the muscles are hard. I go every two weeks for maintenance to keep it at bay. It mostly works. But, by the end of the two weeks I'm chomping at the bit to get in for those injections. It's just some food for thought for you. Your muscles can't twist your spine around but there are a few muscle groups that attach your fused portion to your neck and head.

My upper back has such a tight twist that I can't move it at all and the muscles resist! They are the resisters!!! That starts a chain reaction in the muscles higher up which leads to nerve pinching mostly down my left arm as always, but the right side is starting to feel "left" out and has flared.

Your bear claws may trigger spasms up higher that make your neck hurt worse. I would talk to your doctor about it. See if he can recommend you to a GOOD physiatrist (MD) that specializes in trigger point injections. Three days of being sore (the first is worst) is well worth evasion of pain.

Anyway, it's just food for thought like I said.

Rohrer01

My dear scoli friends,

Like the title of my topic, it's official that my downward spiral is speeding up. I may not be strong enough to survive a surgery. I haven't heard from Dr. Folgeson's office yet. My guess is that he'll take one look at me and say the same thing. However, the surgery may be lifesaving IF I could tolerate it. I need it so that I can hopefully eat without pain. I've noticed that when I force myself to eat, not only does it hurt but my heart races as well. I have a muscle wasting disease, as you all know. My arms and legs have become very thin and atrophied and I weigh a whopping 108# on my 5'7" frame. I would actually be about 5'9 or 5'10" if not for the scoliosis. I was 5' 8-1/4" at my peak growth at age 15 before I began to shrink despite my scoliosis. I'm sure I must be less than 5'7" now because my scoliosis is worse.

I am weak and sometimes walking is an impossibility. My feet just won't come off of the floor and if I shuffle around too much I lose the ability to walk altogether.

I am bummed beyond belief. I feel like I'm going through the five stages of grief all over again. Right away I felt sad and I still am, but I'm getting angry, too. I want to live long enough to see AND enjoy all of my future grandchildren. I already can't do things with my seven y/o grandson. Life is so unfair. It's bad enough to have the scoliosis but to have this death sentence on top of it all is too much!

That's my update.

Rohrer01 signing out for now.

Dear Rohrer,

I am sorry to hear this. Life is very unfair.

Remember that the median is not the message. You can try to stay above the median and then stretch it out. That is what Stephen Gould learned when he outlived his prognosis by about 20 years. My father outlived his diagnosis by over a decade.

The median is not the message.

Good luck and I hope you continue to check in from time to time.

Sharon

Quote:

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Originally Posted by rohrer01

My dear scoli friends,

Like the title of my topic, it's official that my downward spiral is speeding up. I may not be strong enough to survive a surgery. I haven't heard from Dr. Folgeson's office yet. My guess is that he'll take one look at me and say the same thing. However, the surgery may be lifesaving IF I could tolerate it. I need it so that I can hopefully eat without pain. I've noticed that when I force myself to eat, not only does it hurt but my heart races as well. I have a muscle wasting disease, as you all know. My arms and legs have become very thin and atrophied and I weigh a whopping 108# on my 5'7" frame. I would actually be about 5'9 or 5'10" if not for the scoliosis. I was 5' 8-1/4" at my peak growth at age 15 before I began to shrink despite my scoliosis. I'm sure I must be less than 5'7" now because my scoliosis is worse.

I am weak and sometimes walking is an impossibility. My feet just won't come off of the floor and if I shuffle around too much I lose the ability to walk altogether.

I am bummed beyond belief. I feel like I'm going through the five stages of grief all over again. Right away I felt sad and I still am, but I'm getting angry, too. I want to live long enough to see AND enjoy all of my future grandchildren. I already can't do things with my seven y/o grandson. Life is so unfair. It's bad enough to have the scoliosis but to have this death sentence on top of it all is too much!

That's my update.

Rohrer01 signing out for now.

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Hi...

So sorry that things continue to worsen. Life is truly not fair.

We often see patients who are truly too sick to undergo a long fusion, and occasionally find a way to do something small that can improve their quality of life. Maybe it's time to focus on trying to fix whatever is the most intolerable. There's still a relatively big risk that the surgery will actually make things worse by creating a new problem.

I think that, at least sometimes, the best thing we can do is to manage expectations. It's hard not to imagine that life could be so much better. I think you're probably already there. I hope you stop the downward slide, and hit a plateau soon.

--Linda

Thank you both for your kind words. It's appreciated! My dad outlived his "life expectancy" by about five years. In fact, months before he died they kicked him out of the hospice he was on because they said he could go on forever in the state he was in. He eventually succumbed to a cold. He wasn't getting the proper treatment. Once my step-mom could no longer get him into a car to take him to the doctor he never went again. They lived a block away from where the medical transport would go to take him to his primary care doctor. I begged them to change doctors and they wouldn't. I didn't like the doctor he had, anyway. At least my primary care doctor is actively doing things to make me more comfortable along with the physicians in PM&R in the neurosciences department.

I'm trying to eat more. Unfortunately, this week I've had a nasty cold so lots of fluids and rest but not a whole lot of eating.

I am hoping that they can do something about the hypokyphosis and the neck. The L-spine is being managed with steroid shots which seem to be less and less effective. My arms AND legs ache, zap, and tingle with nerve symptoms. I'll tell you, when the upper or lower back act up (if it's not one, it's the other), it will debilitate and take your breath away...literally!

I'm not 100% convinced that all of the problems I'm having with my legs are related to this muscle disease. The reason I say that is because it's much harder to walk when I've been sitting upright for more than a half hour. The longer I sit, the worse it gets. I'm thinking there is some nerve compression going on because sometimes my left leg is worse than my right and sometimes it's both. I have a bad L5-S1 disc. When I had my facet joint injections, my left facet joint at that level was badly arthritic. There was space where there shouldn't have been and mass where there shouldn't have been. The injections were quite painful and didn't help much at all. Not worth trying again. So it's my opinion that they are just putting too much on the other "disease" and not enough on what my problems with the spine are. I wouldn't be having tingling arms and hands if there weren't some nerve compression in my neck as well. However, I do have cervical dystonia and the muscles can clamp down on the nerves, too. The neck pain is worse the older I get. It's downright nauseating at times and triggers headaches. It's in the bones and not the muscles. I can tell the difference between when my muscles are clamping down and when the bones hurt. The muscles are being taken care of with treatments.

I'm not giving up all hope. It was just a wake-up for me to see my weight so low.

Rohrer01

Okay, I called Dr. Fogelson's office in Rochester, MN. They haven't called me because I am on a very LONG waiting list to get in to see him. The receptionist looked at what they have for me and she said that nothing was forwarded except a two year old MRI. I explained the situation I'm in and she said that might expedite my place in line. Even so, I won't be able to get an appointment until Fall! I started this in MAY. My PCP said that was a good thing in his mind because the doctor is in very high demand so he must be excellent. But with the insurance not willing to foot the whole bill (Mayo Clinic charges more than the hospital here) I'm concerned about the expense IF I'm able to get surgery there. They don't call you until they have an appointment time to offer you. I'm thinking about going back to the doctor in Madison due to the delays and the money. His office accepts my insurance payments as payment in full... Any thoughts on that?

Some good news is I gained two pounds as of last week even though I had the cold. Honestly, I think it's hydration as I turned on the central A/C. We'll see next week. I'll post updates as I hear them.

I've been following the news feeds. It seems some new people are having some difficulties. I'm so sorry for that. I hope everyone is as well as they can be.

Take care,
Rohrer01