What's the big deal with 50 degrees?

[LynetteG]

rohrer01 - I'm really sorry to hear about the pain you're enduring right now, let us know how it goes with your doctor. I hope and pray for you that you can get your surgery very soon, so that you can enjoy your life again.

[rohrer01]

Thanks, Lynette.
My pain is mostly controlled now, but with a ton of meds. I HATE being on them because they mess with my mind. I hate always having to ask what day it is or feeling foggy headed. I like having my MIND about me. But I'm hoping this is temporary and I'll get the surgery soon. I hear that a lot of doctors have waiting lists. I don't know about mine in particular. Maybe someone else out there knows. Thanks again!

[titaniumed]

Sorry about your pain. Been there done that.

LynnMarie74 used Dr Tribus. Send her a Pm, tell her Ed says hi.

Ed

[rohrer01]

Sorry,
I didn't answer some of the other questions. I have been on different types of pain management, from PT, chiropractic, TENS unit, external muscle stimulation (similar to TENS only physician supervised), medications including NSAIDS for most of my life, but also the heavy stuff. I am an active person. I like to swim, hike, ride bike. Lately, I'm feeling "good" about myself if I can get a mile walk in every day. I feel extremely inhibited. I can't even hold my 18 month old grandson for more than a few minutes before I have to put him down (by then It's pretty excruciating). He doesn't understand why grandma doesn't want to hold him and now he is starting to act funny around me. I think that hurts worse than anything.

I was too old when my scoliosis was discovered (16), so I never could try bracing, but I did do traction for years. Nothing helps, and it seems over the last couple of months I've been going downhill FAST. I'm usually very optimistic but this is starting to depress me. That's why I don't want to wait until the magical 50* (although my current doctor never mentioned that magical angle, he's more concerned about outcome).

[joyfull]

I don't understand why your doctor would not want to operate to get you some relief and better quality of life. Does he not think that the scoliosis is causing your pain? There are countless examples here of people who had surgery and are so much better. Does your doctor routinely operate on adults? I have a 90 degree thoracic curve and have not had surgery because I have had no pain. The technology is so much better now that in some ways I'm glad I waited. There are doctors out there getting amazing results. Good luck. Joy

[rohrer01]

My pain has not been constant to the extent that it is debilitating. It has been really getting worse the last couple of months. My pain is definitely scoliosis related and my doctor understands that. I just happened to have a "good" day when I saw him last and actually had full range of motion of my head, which I usually don't. Go figure! He is also really concerned that he doesn't make me WORSE because my curve starts in my neck and I am a very thin person. He's afraid I'll lose range of motion in my arms. He basically told me that when I have my surgery I will be committing to two surgeries because he feels the hardware will cause me problems. My curve is not usually tender to the touch, it is the muscle spasms that are my biggest problem. I am going back to see him next month and just MAYBE he can do something about it. At this point, I'm willing to go through the pain of two surgeries. I look at it this way, if the surgeries go well, I'll get off all these drugs and can have my life back. If it doesn't, I will still be on the drugs. As it stands now, I'm stuck on the drugs. I feel it's my chance of freedom.

I would like to get a job some day. I made it through university as an adult, but was on heavy narcotics. I'm thinking an employer wouldn't be liking that situation and the fact that I would probably be calling in a LOT. I don't want to go on disability (wouldn't even qualify if I could - not enough work history). If you saw me, you would never know that there was anything wrong with me. I stand symmetrical. It's my own private misery. My family is suffering, too. Sometimes I know that they just can't understand the pain I have. Now I have this lower back thing going on so it's a real double whammy! I'm seeing a different doctor for that on the 30th who is going to try to get the insurance company to let me see "one" doctor for my whole spine. I hope it works!

Thanks for all your care and concern.

[rohrer01]

Oh, and yes he specializes in adult scoliosis. It's just a matter of where to draw the line with me. As far as I'm concerned, I've already crossed that line. My husband and I tried to have a baby and it seemed that when I conceived I was always on the wrong pain meds and we lost them all (4). Went to fertility specialist to try to "time" conception with the right meds and never got pregnant. Now I feel I'm too old (41) and will be at least 43 by the time I'm better. That, too, is depressing. We really wanted a child of our own and having to wait for scoliosis really stinks!

[jrnyc]

did your doctor say what levels you need fused..sounds like it would start at the top...

i too am on heavy pain meds...and i LOOK straight & tall...except to scoli doctors & to my tailor! now the the pain management doctor has prescribed a pill to give me energy (not amphetamine..but something with the same effect, supposedly)...havent taken them yet...the pharmacy is ordering them..dont know if i will take it...it upsets me..that i need a pill to counteract the effect of the pain meds! soooo...i am finally ready to discuss surgery seriously...but i want minimal invasive...dr anand doesnt take my insurance...dont know if the dr in chicago who also uses that newer method takes it...i see dr lonner on april 12th to discuss it..and to ask if he thinks any doctors in manhattan will start using the minimal method for lumbar surgery...i know lots of them use it for thoracic....

i hope you can find a doctor who will go ahead with surgery for you, if that is what you think will work...

have you tried botox shots to freeze the muscles so they cant spasm? that is what works for my thoracic pain...i get the shots every 3-4 months at pain doctor's office....

did you say how many opinions you've gotten...cause i dont remember reading that...

best of luck to you...
jess

[rohrer01]

jrnyc,
I don't have a lot of money to get many opinions, as I'm sure many of us don't. I searched the internet a few years back to find Dr. Tribus in Wisconsin when the Twin Cities Spine Center would no longer accept my insurance. I have been seen by many scoli specialists over the years and they ALL (except Dr. Tribus) told me that my pain was NOT due to the scoliosis. My current insurance is an HMO and they made me see the head of neurosurgery at their hospital who also insists my pain is from the scoli. Since they don't treat adult scoli at the hospital where I live he had to give me a referral to see Dr. Tribus, as he is the only one (I'm told) who can do my kind of surgery in Wisconsin. At first my HMO denied coverage twice so my dear hubby said, fine, we'll pay out of pocket if we have to lose everything. But since the HMO doctor agreed that I needed to see Dr. Tribus, it's finally covered. To make a short story long. There's just no way I can afford to travel around the country getting second opinions, especially when I've seen so many doc's already over the years. I'm happy with Dr. Tribus.

I asked my general practitioner about the botox injections (I think I saw it on one of your posts). He's afraid it may cause more harm in the long run because of muscle atrophy. He is of the opinion that I just need the surgery and is keeping me on high doses of pain killers until I can get it.

I see Dr. Tribus again next month because the pain is getting worse. I just have a VERY hard time expressing how much pain I am in and when. I always say, "I'm fine". WRONG... that get's me no where. I am now keeping a pain journal and I'm hopeful that will help.

I hope I answered all your questions, as I can't see your original post while I am writing my reply. Thanks so much for your concern.

[rohrer01]

jrnyc,
What is your degree of curvature and where? Mine starts in the neck. He said the lowest he could start the fusion and get any correction at all would be T2to probably L1. I think I would want him to start higher to get better correction, since I am apparently sensitive to the "curve" aspect of the disorder. My worst curve is only 46*. As far as the low back issue, no diagnosis, yet. He thinks it's a hairline fracture of one of the lower vertebrae. I have spina bifida occulta in L5, so that wouldn't surprise me at all. I don't know what the treatment for that would be, if I would need more fusion or not. If anyone else has that (spondylolysis) and had it treated, I'm all ears???

[jrnyc]

Hi Rohrer
as of this past October, thoracic was measured at 40 degrees, lumbar at 61...i am seeing Dr Lonner April 12th, so i should have new measurements then...i suspect both areas have worsened, but dont know for sure yet...

i have heard the talk about muscle atrophy, but am not convinced it will happen...and the relief i get is well worth any risk...which i personally doubt...in the past, all surgeons, and i've consulted with 5, including Boachie & Anand, recommend fusing L4-S1 and T11-sacrum...but if my thoracic gets worse, i guess they would consider starting fusion higher up.....fortunately, most of the consults were covered by my insurance, except for Boachie & Anand...and i flew out to CA for Anand!! my insurance is also an HMO...

it would be great if your HMO would cover a pain management doctor! i just wouldnt want to go by what a G.P. told me about something so specialized...

just a note...i learned a long time ago, with Lyme disease, that one does NOT minimize one's pain with doctors! if you have to do anything, emphasize it!!

i hope you get the relief you seek with the surgery!

best regards...
jess

[rohrer01]

Yes, they do have a pain clinic here. I went to it when it was first starting out. I was SOOOO NOT impressed. I saw a pain psychologist who basically told me that people don't want to hear about my pain, so stop talking about it. When he asked me what my pain was at the time I said a 1, but I was on heavy narcotics. He just brushed me aside and said he wished he could feel that good. What a jerk! That's why I don't want to go back. I think if they could offer botox injections at the pain clinic, which they say has been improved (I certainly hope so), I would go for it if my curve wasn't progressing. But as it stands, I will need the surgery eventually anyway and I just want to get it out of the way while I'm still somewhat young and healthy. As far as muscle atrophy, I would think that muscles building up in the wrong way could be just as detrimental. I mean having very powerful muscles where they are not needed and very weak ones where you need them to be stronger.
Anyway, I just got back from the doctor and he upped my fentanyl. I hope it helps until I can get in to see the specialists. Thanks again!!
((((HUGS))))

[rohrer01]

Jess,
Are you having surgery? Your lower curve is pretty intense.

[jrnyc]

Hi again Rohr
havent scheduled anything...yet...i really want to find a surgeon who does minimal invasive, which is relatively new for LUMBAR curves...it has been used alot for thoracic curves...and who takes my insurance!!...am waiting to see Dr Lonner in NYC April 12th to ask him about the minimal invasive procedure.....he has been talking surgery with me for at least 4 years! i was actually ready to do it in 2007..but several things got in the way (discovering a benign tumor in left femur, getting married & moving to CT, etc)

i am soooo sorry that you had to see a "pain psychologist"...never even heard of such a creature...and i am a licensed social worker...i would NEVER dismiss anyone's pain...but really, rohr...never EVER minimize your pain to anyone, especially doctors....i actually had an idiot doctor at the infamous Stonybrook Hospital in Long Island tell me that i didnt need pain meds cause "Lyme doesnt hurt that much"!! it does...the arthritis, the headaches, the joint pain, etc...believe me, untreated Lyme disease(undiagnosed for a year and a half) really does hurt that much!!

hope you get the relief that you seek & need!

jess

[rich1752]

hey Jess, I know we spoken before, but no sure if I told you about my fusion. If I remember right you have degenerative disc just like me. When my surgeon went in for surgery, he found out that I had two disc which were completely gone and my disc were already fused in that area. I didn't know that they could fuse on their own. They didn't fuse straight, but in a curve. My correction was less then most. He could only correct it 35 degrees (57 degrees before).

rich