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WHEELSOFLIFE
11-20-2005, 06:29 AM
Hi

I am new here and can't seem to find my way around!...

I have such a need to find advise and help please.

I have lived with bad pain since 2002.. and life as become the pits.

I have three degenerative disc - one at top and two at bottom..

It has got so bad I have been in a wheelchair for the past 12 months.. I am awaiting trial for a new disc replacement here in uk.

I was promised I would have them asap.. now told that due to having harrington rods in back I am unable to be part of the trials and have to wait 1 -2 years when medical trial results are in.. only if good can they help me..

I can't live like this.. I have two children and a husband that are the best and they do all to help.. I need a good night sleep..

It's a killer to sit and type this but I need to find some answers and to find out if anyone else is like this or it is just me!

I have been told that the disc degeneration is nothing to do with RODS OR SCOLIOSIS! - what do you think?

That you for taking the time and reading my post...

Kind Regards

sad Uk Lady age 30 - scoliosis correction 1990 (15 years ago)

CHRIS WBS
11-21-2005, 11:08 AM
So sorry to hear about the pain you are in. From everything I have read with regard to previously treated scoliois patients, disc degeneration above and below the fusion appears to be an all too common problem. I do hope and pray you will find a solution soon as you are too young to be in so much pain and wheel-chair bound.

Chris

Sharon B
01-04-2006, 04:31 PM
My god I cant believe it, it was like reading about me, when I saw what you had put, I had my harrington rod in 18yrs ago at 16, it had broken by 1994 and have had a disc removed, I am now 34 and having been in a bad car accident, am suffering a lot. Have you had problems with MRI scans etc? because I've been told that they cant see exactly what the problem is because the metal-work distorts the picture. The same words keep coming up: gross disc degeneration and cauda-equina syndrome(???). So sorry to hear you are in a wheel-chair, I'm still managing with crutches but feel as if my spine just can't support my torso. Please let me know how it goes.
Regards, Sharon.

5Terre
01-16-2006, 07:22 PM
I have disk degeneration and was told that is is a common occurance with harrington rods. I had my rods put in on August 1989. I was also in a serious biking accident in 2001 and have been dealing with pain since the accident. Sitting is just awful. I find that when I exercise on a regular basis my pain is better. Perhaps physical therapy may help strengthen the surrounding muscles taking some pressure off the spine.

I never had back problems prior to my biking accident. Now it's pretty awful. I am sorry that you are in so much pain.

SHARON, after my accident I had the same problem with MRI's the rodsweredistorting the images and could not be read. Which was awful because being in pain makes you want answers and since nothing could be seen I didn't get any special treatment. What was done for you?

katblack
01-16-2006, 08:00 PM
I have disc degeneration and haven't had surgery yet.
many of my discs are in really bad shape and I'm getting six of them replaced with new plastic ones.

I hope you can find someone to help you.
I know all too well about pain and not sleeping well.
Good luck to you! :)

The Professor
03-29-2006, 07:40 PM
I've often wondered about the link between disc degeneration and scoliosis. Does anyone that hangs out here know anything about the effects of torsion, stress, and pressure on vertebral disc fibroblasts or chondocytes?

Differences in levels of matrix metallopeptidases (that degrade extracellular matrix) have been noted when comparing the edge of scoliotic vertebral discs from the concave versus convex sides. Whether it's just a secondary effect or contributes to the disease is still anyone's guess.

angela505
03-30-2006, 10:05 AM
I think disc degeneration has a lot to see with scoliosis. I'm 27 and haven't have a surgery yet. Recently I found out 3 of my disc are showing early degeneration and the lates notice is that I'm having a hernia in one of them. Pretty much scoliosis messed up our entire spine. I don't really know what's better: surgery and latter on have problems with broken rods, more surjeries and more pain or just live with the pain and discomfort that I'm used to have.;.......

toraco-lumbar: 53 degrees.

ahhhhhh and plus that my spine is twisting with the curve. :p

If some one there had surjery having the same problems. please let me know how everything went.

Thanks!

purecain
03-30-2006, 10:57 PM
i have had terrible pain with my scoliosis from an early age and admittedly the curveture is only mild. i am 27 and started to get lower back pain also last year. after an mri i was told i was suffering from a degenerative disc in that area. i have been offered no treatment and told by a phisio that its all in my head to boot, in the face of phisical evidence. this contradictory behavior seems to be the norm with nhs doctors and professionals in the north of england. i'm afraid that if you need help in this country you need to have the money to pay for it. i have spent a fortune already and seem to be no further on with getting the propper help than i was 10 years ago.
this all makes me very unhappy as i live out my days in agony. i have a wife and child and feel i need to be healthy for them. i know exactly how you feel all of you living with this terrible burden and my heart goes out to you.....

angela505
04-04-2006, 10:02 AM
Hey thanks for let me know I'm not alone. It makes me feel so good. I read your dr didn't gave you any treatment, that's horrible what kind of dr. is that one?. My Dr. as soon as he found out about my disc degen and hernia he order an epidural (cortizone) shot and yesterday they gave it to me. Even when I'm a little bit in pain because of the shot it sems to be working already. The pain in my leg is going away, probably if you ask to your dr he can send you one.

How bad is your curve?

bbest
04-05-2006, 06:56 AM
Wheels, I cannot imagine what you must be going through. I wish I had some advice for you or knew all the right things to say. Please hang in there, don't give up hope. It sounds like you have a wonderful family. I will pray for a positive change in your condition.

Brandi

waterpixie1327
06-08-2006, 10:42 PM
Hello. I'm sorry to hear about your pain and sleepless nights. I hear you, believe me! I also had harrington rods placed when I was 15.
I had the placement in Jan. 2002, and was diagnosed with disc degeneration in Sept. of the same year. Both of my parents and their parents have it. You may want to look into your family history. I've been told that it's genetic (degenerative disc disease).
Now, I am facing a second surgery most likely. I have an infection with the rods and they need to be taken out. I'm afraid, but trying to keep my head up. Thats the most important thing to keep in mind. With all these problems we have, the best thing to do is too be optimistic.
I've also heard, on this site, that after 18 months to 2 years of having harrington rods, if you have the rods removed, your scoliosis curvature won't come back. So depending on when you had them placed, you might be abe to have them removed.
I wish you the best of luck, and I'm glad to hear that you're family is there for you. Thats very important.
Good luck with everything, and I'm sorry I have no advice for your pain, I am having trouble with that myself.

wheels
11-13-2006, 06:28 PM
Hello Everyone

I've changed user name because I changed internet supplier and forgot old password!!

I'm no further on since the last time I posted.. infact I'm worse.. I've had three hospital stays in the past 5 months each time for two weeks.. due to pain crisis.. or that's what they are calling it.

I collapsed at home and lost the feeling in the left side of my body.. and to make it worse.. the hospital staff where to busy to get me out of bed for 10 days so I had a dropped foot to go home with..

I was sick during the whole months of May,June,July. When I say it was upto 7 times aday.. hospital doctors didn't have a clue..

My own gp was my "God" he worked it .. it was the fentalyn patches I was on.. I had lost 3 stone and couldn't eat.. I only started eating proper food again two weeks ago..

I was ment to have a hospital appointment to see the spine specialist this wednesday and today I received a letter cancelling it because the surgery was too busy to fit me in.. i've had the appointment for 12 months and they cancel it two days before I go..

I'm desperate for help.. Noone (hospital doctors) are hearing me..

My gp is the only one.. but obviously his help is limited.

I don't know what the answer is but I just can't live with the pain.. I just can't get use to it even after all this time.

take care all
x

ck43
11-13-2006, 06:39 PM
Hey, Wheels. Visit us also at Adult Scoliosis Surgical Revision. You will find many a kindred spirit in addition to those you have found here. You will also find some folk who got the initial run around from some doctors. I joined recently and have led the effort to virtually thwack them. Mama joins in the cause, via a phone call.

I have disc degeneration in my neck but was told it was too far above my rod to have anything to do with it. I believe my doctor. I believe others too though with disc degeneration above and below the rod.

I'm 43 and just came out of a really good scare and near 8 weeks continuous pain mostly in my shoulder. Slept fine most nights though.

You are too young to be in a wheel chair.

wheels
11-13-2006, 07:00 PM
hello ck43

thank you for you reply.. When I brought my new electric wheelchair my two children came with me(aged 6 and 4).. hence I ended up coming home with a candy pink chair (barbie to our daughters!).. but it makes me feel good because they couldn't get over the fact it was pink!!.. makes me feel less of an old woman and more trendy.. I get alot of people stop and admire it!!! :)

Looking forward to christmas.. hubby has had to do all the shopping, I am not up to getting out at the mo... just hoping I am well enough to enjoy the festive time.. I am going to give it all I have.. I don't want to miss out with the kids.. they are at a great age..

Thank you again for posting me.

Kind Regards
x

macky
11-15-2006, 01:16 AM
Hi Wheels, I to know where you are coming from. I have degenerated discs just like you. I have been in pain since 1997 and I do mean PAIN.

As you can see from my signature I had my operation in 1966 and honey believe me you arent by yourself. I do feel sorry for you as I know how debilitating it can be. I have 4 discs that are on their way out. I have lately had unbelievable pain near my right shoulder blade which is the side my rib hump (which I call it) is on, and that I cannot hardly stand.

I am thankfully not in a wheel chair as yet but I think yours sounds pretty cool, I mean if you have to be in one you may as well be in a groovy one.

God bless,
Lorraine. (Macky)

wheels
11-19-2006, 04:43 PM
hello

Thanks for your reply.. it's nice to know i'm not alone

Best Wishes
x
:)

purecain
01-22-2007, 01:29 PM
well nothing has changed in my situation only my wife has left as she was put off being with me by doctors saying they couldnt help with the pain. she couldnt deal with me being in pain all the time and said it brought her down. i miss my daughter terribly.

Cena75
01-26-2007, 12:16 PM
Hi I just had surgery 3 months ago for several problems - one of which was disc degeneration below my original fusion.
Sharon, I also had cauda-equina syndrome prior to this last surgery. What kind of symptoms are you having?

Jinseeker
01-23-2014, 04:04 PM
degenerative disc disease(DDD) is not linked to idiopathic scoliosis. I've researched on this subject, and I have yet to find one that pairs the two in connection with each other. But i have found countless of statements and research attributing DDD with spinal fusion in the segments below and above the fused vertebrae.

DDD can happen to anyone regardless whether one has scoliosis or not. But having a scoliosis curve can wear and tear the vertebrae faster leading to DDD, but it seems spinal fusion can do just as bad if not worse.

I'd like to know of any research or study as to whether having a large 50+ thoracic curve will wear the discs faster than if you had a thoracic curve spinal fusion up to L1 or L2 in the longrun. And if one does have DDD with a large idiopathic scoliotic curve, then will having disc replacement surgery or a laminectomy benefit him/her and prevent another onset of a deterioration, or would it be better idea to just fuse the spine instead?

Opinions anyone?

Pooka1
01-23-2014, 05:10 PM
Hey. Once again, I think you have mastered the fact case. What you wrote is close to my understanding. Linda might know some of the answers to your questions.

The only thing I will note is that, just reading testimonials, adults tend to have longer fusions than kids. That is just anecdote at this point unless Linda has data. But if that is generally true then it might mean compensatory curves are becoming structuralized in untreated large curves over time. In contrast, there is evidence that T fusions that end at T12 or L1 or so do stabilize the lumbar over at least two decades in false doubles and purported over a lifetime if the lumbar straightens and stays aligned as it did in my kid with that type of curve who now has no scoliosis anywhere in her back after her (T4-L1) fusion. She has a straight spine and I assume that is why the surgeon told her she is back in the general population for rate of back problems (meaning DDD in the unfused areas I assume which everyone gets if they live long enough). Of course we don't know that those lumbars would have become structuralized had these people not been fused. Again, I hope Linda knows something about this.


degenerative disc disease(DDD) is not linked to idiopathic scoliosis. I've researched on this subject, and I have yet to find one that pairs the two in connection with each other. But i have found countless of statements and research attributing DDD with spinal fusion in the segments below and above the fused vertebrae.

DDD can happen to anyone regardless whether one has scoliosis or not. But having a scoliosis curve can wear and tear the vertebrae faster leading to DDD, but it seems spinal fusion can do just as bad if not worse.

I'd like to know of any research or study as to whether having a large 50+ thoracic curve will wear the discs faster than if you had a thoracic curve spinal fusion up to L1 or L2 in the longrun. And if one does have DDD with a large idiopathic scoliotic curve, then will having disc replacement surgery or a laminectomy benefit him/her and prevent another onset of a deterioration, or would it be better idea to just fuse the spine instead?

Opinions anyone?

jrnyc
01-23-2014, 05:13 PM
hi Jinseeker
this is an old thread....

as far as i know, as Linda Racine told me, a patient with a large
scoliosis curve cannot just have disc replacement...
i wanted to do that, but she said it makes the spine more unstable
and cannot be done....one must have fusion at the same time of
the discs being replaced...
a surgeon in NYC offered to do mine with partial minimal incisions...
the back would be fused with regular incision, but the discs would
be done from side, with minimal incision....another surgeon in CA
offered minimal incisions for both back and discs...
but i have not had any surgery as yet.

best of luck
jess...and Sparky, the wonder puppy

Jinseeker
01-24-2014, 02:20 AM
Hey. Once again, I think you have mastered the fact case. What you wrote is close to my understanding. Linda might know some of the answers to your questions.

The only thing I will note is that, just reading testimonials, adults tend to have longer fusions than kids. That is just anecdote at this point unless Linda has data. But if that is generally true then it might mean compensatory curves are becoming structuralized in untreated large curves over time. In contrast, there is evidence that T fusions that end at T12 or L1 or so do stabilize the lumbar over at least two decades in false doubles and purported over a lifetime if the lumbar straightens and stays aligned as it did in my kid with that type of curve who now has no scoliosis anywhere in her back after her (T4-L1) fusion. She has a straight spine and I assume that is why the surgeon told her she is back in the general population for rate of back problems (meaning DDD in the unfused areas I assume which everyone gets if they live long enough). Of course we don't know that those lumbars would have become structuralized had these people not been fused. Again, I hope Linda knows something about this.

2 decades may not be enough reason for anyone to have spinal fusion immediately. It still seems like an accelerated progression of the wear and tear process on the discs. So in other words doesn't really add any real benefit to having no surgery at all even with a large curve on the deterioration of the discs. I have heard from multiple doctors that some people don't ever get DDD or any significant wear on their discs all the way to their 90s, and that osteoporosis are more linked to kyphosis not scoliosis. Just like any disease it is a natural selection.

Pooka1
01-24-2014, 05:36 AM
2 decades may not be enough reason for anyone to have spinal fusion immediately. It still seems like an accelerated progression of the wear and tear process on the discs. So in other words doesn't really add any real benefit to having no surgery at all even with a large curve on the deterioration of the discs. I have heard from multiple doctors that some people don't ever get DDD or any significant wear on their discs all the way to their 90s, and that osteoporosis are more linked to kyphosis not scoliosis. Just like any disease it is a natural selection.

At least two decades for a false double (which you do not appear to have). The study was small but all the patients were doing well as I recall. These people, like my one daughter, have two large curves but only one is structural. My daughter's lumbar is now in the mid twenties, below the "magic" 30* mark for long term lack of progression. Had she not been fused, I could see that large lumbar becoming structuralized over time and her having disc problems and having further progression. But her T curve was larger than yours and her lumbar curve was larger (eyeballing your radiographs) while she was still growing so your case is very different... reaching 50* at some point and hanging there. my daughter's curve hit the high 50s* and she was still growing. Something had to be done. There is widespread agreement among surgeons about fusing large, progressive T curves in adolescents. There is not so much agreement for other curve types.

You appear to have a curve like my other daughter who was hyper-corrected. Her lumbar now has NO CURVE. To the extent long term disc health is a function of alignment (and that her fusion ended at L1), that seems to be why the surgeon said she was back in the general population on risk of future back problems and it would be one-stop shopping for surgery for her for scoliosis.

Based on our surgeon's comments and Boachie's comments, a fusion no lower than about L1 with lumbar alignment is expected to stabilize folks for life.

Pooka1
01-24-2014, 05:40 AM
2 decades may not be enough reason for anyone to have spinal fusion immediately.

You are not an emergency case by a long shot. You shouldn't do anything immediately in my opinion. :-)

Your questions are great. You could ask a surgeon about long-term lumbar disc health at the angle it is now, if it progressed, and if it was corrected (or hyper-corrected). Since your T curve does not appear to be progressing, your are able to shift your focus to possible damage to the lumbar if the T curve is untreated. Those would be the bulk of my questions to a surgeon were it me.

Good luck.

Jinseeker
01-24-2014, 07:23 AM
My doubt is it would be unnecessary to ask a surgeon about what a large T curve would do to my lumbar spine as it is impossible to really tell. Just the fact that some large curves do not have pain while other small curves do proves my point that it is completely arbitrary and there is no link between disc degeneration and scoliosis whatsoever.

What I'd like to know though is if you have any references or documented proof of spinal fusions that fall above L1 disc can stabilize the spine for life. I have yet to find any articles or documented research supporting this. In fact most research i have found tend to lean on the documented evidence that discs do wear out below or above the fusion over time.

Most surgeons cite the reason for not fusing below L1 is to preserve some flexibility for the patient, they don't claim anything else otherwise.

Pooka1
01-24-2014, 09:12 AM
My doubt is it would be unnecessary to ask a surgeon about what a large T curve would do to my lumbar spine as it is impossible to really tell. Just the fact that some large curves do not have pain while other small curves do proves my point that it is completely arbitrary and there is no link between disc degeneration and scoliosis whatsoever.

What I'd like to know though is if you have any references or documented proof of spinal fusions that fall above L1 disc can stabilize the spine for life. I have yet to find any articles or documented research supporting this. In fact most research i have found tend to lean on the documented evidence that discs do wear out below or above the fusion over time.

Most surgeons cite the reason for not fusing below L1 is to preserve some flexibility for the patient, they don't claim anything else otherwise.

Fusing to L1 is done when the structural curve ends there to my knowledge. On bending, my kids were able to level L1 so that's where their fusion stopped. That's my understanding. Had they not been able to level L1 then it would have gone lower. That's my understanding. Stopping at L1 is not arbitrarily done to preserve flexibility because not fusing all of the structural curve will create problems later. The exception seems to be kids who have L curves who seem to have their fusions stopped at L3 or so arbitrarily to preserve some flexibility because surgeons seem loath to fuse kids to pelvis. I don't know the long term on that. You have a T curve, not an L curve.

Here is evidence from a top surgeon that your lumbar can be stabilized for life given the conditions specified... it comports with what our surgeon told us...

http://www.hss.edu/professional-conditions_adult-scoliosis-low-lumbar-degenerative-disease-spinal-stenosis.asp


If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. So I tell them to take it easy a little bit, and avoid excessive high impact, rotational sports and activities, no other things that will cause early degeneration. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted.

So I am assuming this applies MORESO to an adult who has less years remaining than an adolescent but there may be other issues I don't know about. There probably are.

rainbow2010
01-24-2014, 09:13 AM
I know what you are going through. I have ddd also. My doctors have told me it is because of the wear and tear on the discs due to being fused. We have less usable discs it our back so they wear out quickly. I have RF ablations to control my pain.

Pooka1
01-24-2014, 09:16 AM
I know what you are going through. I have ddd also. My doctors have told me it is because of the wear and tear on the discs due to being fused. We have less usable discs it our back so they wear out quickly. I have RF ablations to control my pain.

Jinseeker, Rainbow2010 has an L fusion, not a T fusion. Disc degeneration associated with the fusion is expected in the L5-S1 disc and perhaps above the lumbar. Compare and contrast that with Boachie's comments about T fusions ending at or above L1. Apples and oranges.

rohrer01
01-24-2014, 11:31 AM
Sharon (Pooka1), I know YOUR doctor said "one stop shopping". I can't say that I agree with this because of what I see in my DIL. At age 23 she is having lumbar pain. She has a T fusion. The problem here, as I see it, is that the cushion that is provided with the thoracic discs is no longer there. This seems very logical because there is more stress on the lumbar discs because they have to take the shock absorbance for the WHOLE spine. So even if there isn't much movement in the T-spine, those discs DO absorb the every day impact of normal movement like walking. So I can see that the lumbar discs WOULD indeed tend to wear out faster with fusion than the "normal" population. With that said, an unfused progressive T-curve WILL eventually cause a lumbar curve. This would also wear out the lumbar discs at an accelerated rate. It's a lose lose. Perhaps, as in the situation of your daughters, the T-fusion would definitely SLOW the progression of DDD in the lumbar spine by way of properly aligning the lumbar spine, therefore REDUCING wear and tear on the lumbar. Either way, though, I can't see this fitting into the rate of spinal degeneration as the general population.

If you look at MY x-rays, my lumbar looks great and straight. However, it's not as great and straight as it looks. I have some twisting in the lumbar and my pelvis isn't perfectly straight. I have very painful DDD in the lowest disc (L5/S1) along with SI joint dysfunction. Is this caused by my scoliosis? In my opinion it likely is at least aggravated by the scoliosis. But BECAUSE of my scoliosis I feel uncomfortable with having a disc replacement or fusion there for fear of destabilizing the rest of my spine. On the other hand, my dad had some significant DDD in his lumbar for which he had to wear a support belt and he had no scoliosis at all. So my DDD could be totally unrelated to my scoliosis. As the scoliosis is creeping into the lumbar region as I get older, I expect more DDD issues to crop up a little sooner than most people. I've been having significant lower back pain since my late 20's. That's NOT normal.

Pooka1
01-24-2014, 01:54 PM
Sharon (Pooka1), I know YOUR doctor said "one stop shopping". I can't say that I agree with this because of what I see in my DIL. At age 23 she is having lumbar pain. She has a T fusion.

Where does her structural curve end? My daughter's ended at L1.

Where does her fusion end? My daughter's ended at L1.

My one daughter fits into the situation Boachie is addressing which agrees with what our surgeon said.

Jinseeker
01-24-2014, 03:24 PM
I seem to agree with the analysis of rohrer, even if it means disagreeing from Dr. Boachie himself. Once you have a fusion, the discs that were part of the fusion are gone and now the discs below L1 will indeed be overworked and thus will increase in degeneration at a much faster rate than that of the normal straight spines population. It is a pretty clear and logical analogy. It may slow down the degeneration of the spine vs the pre existing curve, but does in no way compare to that of a normal spine's.

Thanks Pooka for the article you sent me from Dr. Boachie, I have read it all and would like to address my thoughts..

It seems like dr boachie will treat his patients conventionally through exercise therapy rather than surgery for degenerative scoliosis, regardless whether there is progression or not. It seems as if Dr.Boachie still believes that exercise may slow degenerative scoliosis and that a spinal fusion can be just as detrimental as simply carrying on with the condition. Only when the patient does not respond well to conservative treatment is when surgery is suggested he says.

As for how his article came off from addressing scoliotics like me,

it also seems that in the example he gave, he only mentions if a young child like age of 13 is fused to L1 will benefit from a lifelong free of degeneration, but not a young adolescent or adult like me with a large curve. In his article he states,

"The adolescent or the young adult who comes in with a 60 degree scoliosis is otherwise healthy. They may have pain, but they have no stenosis, no degeneration, no segmental instability. So we measure the curve, assess the fusion levels, and fuse them to whatever levels we chose and you are done. You don't have to worry about the junctional levels until maybe 20 years later when they come in with junctional degeneration especially if they haven't been properly aligned, functional deformity may result from excessive activity causing the unfused segments to eventually go through an early degenerative process."

In other words, in my case and age, a fusion to L1 would result in the same wear and tear that I have always been apprehensive about.

He also mentions in his article, which was rather vague and almost sarcastic was
"You can live the rest of your life with a 50 degree thoracic curve. If you are lucky, it won't cause pain. It won't cause pulmonary problems, no. The patient may be able to live with the cosmetic deformity, but it is difficult to live with progressive symptoms of subluxations and spinal stenosis."

Wonder what you people think about what he meant there. Did he mean you are truly doomed to be in pain and degeneration with a 50 degree curve or that you may be able to do just fine throughout your lifetime?

Anyways, I have tried and book a meeting with him. I am wondering if he will allow an email or skype consultation since I am not living in New York?

Pooka1
01-24-2014, 03:56 PM
He also mentions in his article, which was rather vague and almost sarcastic was
"You can live the rest of your life with a 50 degree thoracic curve. If you are lucky, it won't cause pain. It won't cause pulmonary problems, no. The patient may be able to live with the cosmetic deformity, but it is difficult to live with progressive symptoms of subluxations and spinal stenosis."

Wonder what you people think about what he meant there. Did he mean you are truly doomed to be in pain and degeneration with a 50 degree curve or that you may be able to do just fine throughout your lifetime?

I read that three times. My best guess is he is saying you can do fine and that subluxations and spinal stenosis are not inevitable. You may hang at 50* for the rest of your life and not get those things.

The main thing as I understand your situation is the pain is getting less and less controllable with PT, yes? So unless the pain overtakes you, you may not need fusion. That's my guess. I'd like to hear what others say.

Pooka1
01-24-2014, 05:03 PM
Sharon (Pooka1), I know YOUR doctor said "one stop shopping". I can't say that I agree with this because of what I see in my DIL. At age 23 she is having lumbar pain. She has a T fusion.

Did they only fuse the T portion of a double major curve?

Pooka1
01-24-2014, 05:12 PM
I seem to agree with the analysis of rohrer, even if it means disagreeing from Dr. Boachie himself. Once you have a fusion, the discs that were part of the fusion are gone and now the discs below L1 will indeed be overworked and thus will increase in degeneration at a much faster rate than that of the normal straight spines population. It is a pretty clear and logical analogy. It may slow down the degeneration of the spine vs the pre existing curve, but does in no way compare to that of a normal spine's.

Here are two points that come to mind.

1. How can Boachie say this about stable over a lifetime, especially in adolescents, when the modern instrumentation hasn't been around long enough to say? My only guess is he must be extrapolating from the H rods. I am guessing that people with pure T curves who were fused only to L1 with H rods and were balanced are largely doing well. To the extent that the modern instrumentation can hyper-correct people, that can only be better. That is the only rational explanation for why I think Boachie can possibly be talking about "lifetimes."

2. If most or all of patients with false doubles who are selectively fused through the thorax and who are necessarily left with curves in the lumbar (to avoid high left shoulder) are stable at least 20 years out, that bodes even better for the hyper-corrected folks if alignment is the key thing to long-term disc health with or without a fusion. For my one kid who was hyper-corrected and has a straight spine, there is no imbalance on the unfused discs. Her lumbar is as straight as mine. I will likely get DDD... I already have had two sports-related disc injuries. My daughter will likely get DDD. Like death and taxes, I have read DDD is inevitable if you live long enough. On the other hand, my mother lived to 84 and never had any back pain to speak of. But maybe 84 wasn't old enough. Who knows.

Just more thoughts to throw out there.

rohrer01
01-25-2014, 11:03 AM
Where does her structural curve end? My daughter's ended at L1.

Where does her fusion end? My daughter's ended at L1.

My one daughter fits into the situation Boachie is addressing which agrees with what our surgeon said.

Sorry, I haven't been on the forum as this discussion ensued. I see you asked this question twice.

My DIL is fused from T2 to L1, if I remember looking at her x-rays correctly. She had a curve that looked a lot like Jinseeker's, except with a ton more rotation. Her actual Cobb measured 48o at this hospital, which measures very conservatively compared to others that I've been to. They only ever talked about the angle of the one curve. She was also progressing rapidly "in-brace" to which she was compliant 22-23 hours a day. So if there were a false double, it's completely gone now. Her lumbar looks great. She has some reduced lordosis because of the hypokyphosis in her T-spine that wasn't corrected to a great degree (not nearly as bad as mine). But, overall her lumbar looks GREAT. Her hips are even and her pelvis doesn't appear twisted.

Pooka1
01-25-2014, 11:11 AM
Sorry, I haven't been on the forum as this discussion ensued. I see you asked this question twice.

My DIL is fused from T2 to L1, if I remember looking at her x-rays correctly. She had a curve that looked a lot like Jinseeker's, except with a ton more rotation. Her actual Cobb measured 48o at this hospital, which measures very conservatively compared to others that I've been to. They only ever talked about the angle of the one curve. She was also progressing rapidly "in-brace" to which she was compliant 22-23 hours a day. So if there were a false double, it's completely gone now. Her lumbar looks great. She has some reduced lordosis because of the hypokyphosis in her T-spine that wasn't corrected to a great degree (not nearly as bad as mine). But, overall her lumbar looks GREAT. Her hips are even and her pelvis doesn't appear twisted.

Okay well then maybe the pain is from the incorrect lordosis left in the lumbar. I guess that would not fit into Boachie's comment about being aligned correctly even in the sagittal plane.

rohrer01
01-25-2014, 12:08 PM
Jinseeker,

Just out of curiosity, why do you want a conference with Dr. Boachie? It's relatively difficult to get consults with these big name doctors. He also doesn't accept insurance. It's up to you to find out if your insurance will pay and up to you to do the filing and paperwork. I would think that an insurance company might frown upon paying anything for a conference where no physical exam can be performed. I'm not convinced Boachie would grant you such a "visit", either. But, hey, let us know if he does!

I was able to contact Dr. Hey, send him my x-rays, and talk with him over the phone and e-mail. He gave me his opinion that I would benefit from surgery for pain reduction, but no guarantees, of course. So I booked an actual consult with him and was going to travel to NC for the physical exam. He suddenly, without any logical explanation, cancelled my appointment and told me there were plenty of good doctors closer to the area where I live. But the fact that he didn't charge me to talk to me at length was nice. I don't know if he still does that or not. I heard that he is now only taking patients by referral only. You might contact his office and ask. He really is very personable and knowledgeable. I'm quite sure that he would recommend surgery for you, especially since you are so young. It would probably fit into the "saving the lumbar" from future, more rapid degeneration. He didn't mention anything to me about my lumbar. He fuses some people with pretty small curves, like in the lower 30o's. So if you're not into having surgery, he might not be your guy. However, he might also give you some food for thought even if you don't want surgery.

There was one catch to my cancellation, though. My insurance denied paying for my consult. So, I told him I would be paying out-of-pocket. To me this is probably the real reason for the cancellation even though another reason was given to me. I do have to give Dr. Hey very high regard for the time he did spend with me at no charge. It helped give me some more insight. Since that happened, I haven't sought out another second opinion.

I really need a doctor that I can depend on. I was really hoping that he was the one for me since he meets MY criteria for a good surgeon. If my insurance won't even pay for a consult, they surely wouldn't pay for surgery. So my visit with him would have been for a second opinion ONLY. I really wanted that second opinion so that I could build my case with the insurance company. My insurance carrier will allow me to see only one scoliosis surgeon with NO second opinions from any other specialist. I need another opinion because I found out that my heart is compressed with my 40o+ curve. I'm just not there mentally to go through that again, especially with the new diagnosis that I have of Cervical Dystonia and MD. Although compressed, my heart is functioning normally, so it's not an emergency.

rohrer01
01-25-2014, 12:19 PM
Okay well then maybe the pain is from the incorrect lordosis left in the lumbar. I guess that would not fit into Boachie's comment about being aligned correctly even in the sagittal plane.

I'm not sure. Many people with otherwise healthy spines have more or less kyphosis and lordosis in their spines. I'm not going to say that her lordosis is out of range for normal because it "looks" fairly normal and she hasn't been diagnosed with flat-back syndrome. You can see that she has lordosis, it's just not huge. So it's MY opinion that her lordosis is reduced. My medical records say mine is reduced (not flat-back), even though looking at me and on my x-rays you can see it's there. Hers looks about like mine, maybe a little more curve there? Do your daughters have perfect lordosis and how can you tell? There is a large range of "normal". So if a person falls into the normal range, is it absolutely normal for that person?

I think a better surgeon would have done a better job on her. So maybe this is the reason for her lower back pain. However, every fused person isn't going to have perfect kyphosis or lordosis. They can only correct people so much. My original thought stands. This is because there are no thoracic discs to take the normal everyday impact on the spine.

Pooka1
01-25-2014, 12:29 PM
Do your daughters have perfect lordosis and how can you tell?

Just based on the one-stop shopping for scoliosis surgery comment and that she was back in the general population for back issues. Of course the vast majority of people are driven to a doctor of back pain at some point if they live long enough so that latter statement is practically empty in my opinion. Even if 100% of fused patients later have back pain at some point, it's not the case that they probably would have avoided that had they not had scoliosis and fusion. Rather the figure I saw was ~85% of people will have back pain so bad at some point that it drives them to a doctor. That's the point. Maybe they would have been in the ~15% that never gets bad back pain if they didn't have scoliosis and a fusion but the odds are against that.

And we always have to ask what percentage of people with big curves that aren't fused get driven to doctors for pain. If that's damn near 100% then all of this is a mute point... most people, with scoliosis or without, with treatment for scoliosis or without, will get bad back pain if they live long enough.

rohrer01
01-25-2014, 07:33 PM
I've also read somewhere that about 85% of all adults will seek medical attention for back pain at some point. So, in a sense it is a moot point. However, my point is that those with T-fusions are at a higher risk for lumbar pain at a younger age and/or at higher levels in the lumbar. Now, compare this to not treating the scoliosis at all... the problems will likely come even sooner. So, like I said earlier it's lose, lose. But you are right that it's not anything to get all worked up about. It's just a bad side effect that comes with having scoliosis. If the loading is uneven, there WILL be more wear and tear. period. EVERYONE who lives long enough DOES get DDD.

I guess my biggest problem is with your doctor's statement of, "one stop shopping." It sounds like they are selling surgery as a quick fix with no adverse side effects. When, in fact, it is a very serious operation and shouldn't be undertaken lightly. Again, not accusing you of having that attitude, either. You didn't say it. The doctor did. It made you feel better in knowing that you made the right choice for your girls.

I'm sure my DIL's lumbar issues at present are far less than if she had not had surgery. She's one who is better off for having her surgery just as your girls are. It probably saved her life, too.

So there you have it, Jinseeker. No one is promoting you do anything you aren't comfortable with. There are options for pain management and if you live long enough you WILL get DDD just like the rest of us. Unfortunately, it will probably be sooner than the general population just because you have scoliosis and regardless of whether or not you have surgery. I agree with Pooka1 that a well balanced lumbar will stave it off longer, but at what cost (not talking money)? That's up to each individual to decide.

rohrer01
01-25-2014, 07:36 PM
Just based on the one-stop shopping for scoliosis surgery comment and that she was back in the general population for back issues. Of course the vast majority of people are driven to a doctor of back pain at some point if they live long enough so that latter statement is practically empty in my opinion. Even if 100% of fused patients later have back pain at some point, it's not the case that they probably would have avoided that had they not had scoliosis and fusion. Rather the figure I saw was ~85% of people will have back pain so back at some point that it drives them to a doctor. That's the point. Maybe they would have been in the ~15% that never gets bad back pain if they didn't have scoliosis and a fusion but the odds are against that.

And we always have to ask what percentage of people with big curves that aren't fused get driven to doctors for pain. If that's damn near 100% then all of this is a mute point... most people, with scoliosis or without, with treatment for scoliosis or without, will get bad back pain if they live long enough.

I know that I already commented on this, but do they have a "like" button? Just kidding. Yes, I'm in agreement.

Pooka1
01-25-2014, 08:40 PM
I guess my biggest problem is with your doctor's statement of, "one stop shopping." It sounds like they are selling surgery as a quick fix with no adverse side effects. When, in fact, it is a very serious operation and shouldn't be undertaken lightly. Again, not accusing you of having that attitude, either. You didn't say it. The doctor did. It made you feel better in knowing that you made the right choice for your girls.

Well I do not think he says that about all the fusions he does or even most of the fusions he does. My daughter was able to be hyper-corrected with a fusion that ends at L1. That's the magic case perhaps.

She has no scoliosis anywhere in her spine, in the fused or unfused sections. She was a twisted up pretzel before her surgery. In two months she will be 6 years out. She has occasionally complained of minor pain if she sits or lays in a funny position to which I say "DON'T DO THAT!" She has not taken pain meds to my knowledge for back pain after her recovery though I suggested it. The other kid with the residual lumbar and less well-balanced due to having a false double has occasionally complained about back pain but I doubt it was unlinked to anything she did. I don't think she has taken any pain meds for back pain since her recovery to my knowledge though I have suggested it. She is 4 years and 3 months out.

He did not say my other daughter was one-stop shopping but I could have inferred that from his reason given for why the first kid was... the fusion stopped at L1. That's what he said when I asked why it was one-stop. That's why I bang on about people not letting their T curves encompass their lumbar. It might mean the difference between one surgery or more than one surgery and eventually losing the lumbar when that could have been avoided.

In re choices, there is no parent in my shoes who would think they had a choice after seeing my girls. I never at any point felt there was a choice and neither did my husband. The surgeon did not present it as a choice. It's like saying my parents chose to let me have an appendectomy when I had appendicitis. That's not a choice. I think the surgeon would have elevated it to the courts had I refused for either of my girls because they both had the one situation that there is near universal agreement on as to need for fusion... large progressive T curves in adolescents. I had NO choice in the matter. I would have had to allow the surgery even if I KNEW a second surgery was in the offing because whatever two surgeries involved was better than not having fusion. That's how bad it was.

Jinseeker
01-26-2014, 08:40 AM
hi Jinseeker
this is an old thread....

as far as i know, as Linda Racine told me, a patient with a large
scoliosis curve cannot just have disc replacement...
i wanted to do that, but she said it makes the spine more unstable
and cannot be done....one must have fusion at the same time of
the discs being replaced...
a surgeon in NYC offered to do mine with partial minimal incisions...
the back would be fused with regular incision, but the discs would
be done from side, with minimal incision....another surgeon in CA
offered minimal incisions for both back and discs...
but i have not had any surgery as yet.

best of luck
jess...and Sparky, the wonder puppy

That's quite unfortunate to hear? What if the discs that are worn out are not located within the area of the curvature but in the straighter parts of the spine?

And can discs be replaced right below the fusion, or will those have to be fused as well if they get worn out and damaged?

This offers little hope for us scoliotics since it may be all too easy now to jump to spinal fusion as we have no choice but to in the event of a disk deterioration, since the curve does increase the wear and tear of the spinal segments a lot faster. Hopefully this new breakthrough in surgical options may shed some hope for all of us pre-op someday.

http://www.medicalnewstoday.com/articles/263496.php

rohrer01
01-26-2014, 12:09 PM
Well I do not think he says that about all the fusions he does or even most of the fusions he does. My daughter was able to be hyper-corrected with a fusion that ends at L1. That's the magic case perhaps.

She has no scoliosis anywhere in her spine, in the fused or unfused sections. She was a twisted up pretzel before her surgery. In two months she will be 6 years out. She has occasionally complained of minor pain if she sits or lays in a funny position to which I say "DON'T DO THAT!" She has not taken pain meds to my knowledge for back pain after her recovery though I suggested it. The other kid with the residual lumbar and less well-balanced due to having a false double has occasionally complained about back pain but I doubt it was unlinked to anything she did. I don't think she has taken any pain meds for back pain since her recovery to my knowledge though I have suggested it. She is 4 years and 3 months out.

He did not say my other daughter was one-stop shopping but I could have inferred that from his reason given for why the first kid was... the fusion stopped at L1. That's what he said when I asked why it was one-stop. That's why I bang on about people not letting their T curves encompass their lumbar. It might mean the difference between one surgery or more than one surgery and eventually losing the lumbar when that could have been avoided.

In re choices, there is no parent in my shoes who would think they had a choice after seeing my girls. I never at any point felt there was a choice and neither did my husband. The surgeon did not present it as a choice. It's like saying my parents chose to let me have an appendectomy when I had appendicitis. That's not a choice. I think the surgeon would have elevated it to the courts had I refused for either of my girls because they both had the one situation that there is near universal agreement on as to need for fusion... large progressive T curves in adolescents. I had NO choice in the matter. I would have had to allow the surgery even if I KNEW a second surgery was in the offing because whatever two surgeries involved was better than not having fusion. That's how bad it was.

No, I never felt from your posts that you had a choice in your girls.

My DIL was given a "choice" to do or not to do the fusion because the Cobb angle was 48o. However, if you had seen her "before" I don't really think there was a real choice, either. She was so twisted that when she was leaning over you could not see her ribcage on the left AT ALL. That would have just been a matter of delaying surgery in her case.

I know a woman who was born with congenital scoliosis and grew up bent over. Her parents were divorced and she lived with her dad. He absolutely REFUSED to let them operate on her. By the time she reached 18 it was do or DIE. Her mom flew her across country and somehow paid for her surgery (maybe put her on her insurance). The best correction they could get was 60o. She's in her mid-50's now and dying from pulmonary complications due to the scoliosis. Last year they gave her two years to live. I hope they are wrong. She is on oxygen and has nearly died at least three times. Fortunately, her husband found her each time, blue and unconscious.

For some people this is necessary. The choice to try non-surgical options is for those with more minor or non-life threatening curves.

My DIL always had problems with her lungs like constant bronchitis. She would have been in trouble had she not had this done when she did. The whole bracing thing upsets her because she was totally compliant and ended up with surgery, anyway. We talked about it and she is of the opinion that maybe the brace held the curve enough so that she didn't progress as fast making the surgery a little easier. At first when I asked her would she still do the brace knowing what she knows now and she said, "yes". Now when I ask her she says, "NO!" I think if the brace did help somewhat it would have been for the purpose just mentioned. If she hadn't been braced and the same were true, she just would have had her surgery a year or two sooner. That's something that I don't think would have mattered to her. The brace emotionally scarred her for life. She has PTSD episodes from it, sometimes quite severe.

rohrer01
01-26-2014, 12:23 PM
That's quite unfortunate to hear? What if the discs that are worn out are not located within the area of the curvature but in the straighter parts of the spine?

And can discs be replaced right below the fusion, or will those have to be fused as well if they get worn out and damaged?

This offers little hope for us scoliotics since it may be all too easy now to jump to spinal fusion as we have no choice but to in the event of a disk deterioration, since the curve does increase the wear and tear of the spinal segments a lot faster. Hopefully this new breakthrough in surgical options may shed some hope for all of us pre-op someday.

http://www.medicalnewstoday.com/articles/263496.php

Jinseeker,

I've wondered the same thing as I have been offered an artificial disc or fusion at the L5/S1 level. It was never a serious conversation with my doctors because I rejected the idea right away. For one thing, my DDD was last classified as "mild". For another thing, I was afraid of spinal destabilization. As it turns out, at the level of my DDD my left nerve root is pinched. I also have sacroiliac (SI) dysfunction. I'm assuming that means arthritis in those joints. This also causes the lower back and leg pain. For me its hard for the doctors to sift out which one is causing the bulk of the symptoms. Both shots help (epidural and SI injection). So in my case I don't think a disc replacement or fusion would necessarily help all of my lower back and leg pain. There's just too much at risk for me to "try" a procedure like those offered.

That was a really interesting article that you found! I don't see what it would matter if you had scoliosis or not for that therapy. The only problem that I can foresee with something like that on a scoliotic spine would be that the discs are wedged on us. It would be harder to keep the cell "juice" right where they would want it because of the uneven pressure on the disc. We'll have to wait and see if this ever gets FDA approved. EVERY disc in my neck is dry and has been since my late 20's. As far as I know the only other bad disc I have is that lowest one. I'd sure rather try that then have a fusion!

Pooka1
01-26-2014, 01:13 PM
That's quite unfortunate to hear? What if the discs that are worn out are not located within the area of the curvature but in the straighter parts of the spine?

And can discs be replaced right below the fusion, or will those have to be fused as well if they get worn out and damaged?

This offers little hope for us scoliotics since it may be all too easy now to jump to spinal fusion as we have no choice but to in the event of a disk deterioration, since the curve does increase the wear and tear of the spinal segments a lot faster. Hopefully this new breakthrough in surgical options may shed some hope for all of us pre-op someday.

http://www.medicalnewstoday.com/articles/263496.php

I agree with your analysis. Dr. Hey seems to think earlier shorter fusions are better in the long run than later longer ones but I have to wonder if there is a lot of evidence for that. I don't get the same vibe from the testimonials for other people for other surgeons. Dr. Hey may be in the minority on this but he does post a fair number of collapse cases which he may feel strongly could have been avoided had the curve been treated.

Pooka1
01-26-2014, 01:17 PM
My DIL always had problems with her lungs like constant bronchitis. She would have been in trouble had she not had this done when she did. The whole bracing thing upsets her because she was totally compliant and ended up with surgery, anyway. We talked about it and she is of the opinion that maybe the brace held the curve enough so that she didn't progress as fast making the surgery a little easier. At first when I asked her would she still do the brace knowing what she knows now and she said, "yes". Now when I ask her she says, "NO!" I think if the brace did help somewhat it would have been for the purpose just mentioned. If she hadn't been braced and the same were true, she just would have had her surgery a year or two sooner. That's something that I don't think would have mattered to her. The brace emotionally scarred her for life. She has PTSD episodes from it, sometimes quite severe.

That's really interesting how she changed her mind. It sounds like she has been through the mill with scoliosis. So far, I would say it was only a blip in my daughters' lives. I hope it stays that way.

rohrer01
01-26-2014, 03:02 PM
I think she was trying to justify wearing the brace. Now that she's learned a little more, she sees that it just delayed surgery at best. It wasn't worth the emotional cost. It gave her terrible social anxiety.

Pooka1
01-26-2014, 03:48 PM
I think she was trying to justify wearing the brace. Now that she's learned a little more, she sees that it just delayed surgery at best. It wasn't worth the emotional cost. It gave her terrible social anxiety.

Wow. I can believe it. My night-time braced daughter stated, after she had fusion, that she would not have worn a 23 hour a day brace. That says a lot to me.

The other one who was diagnosed in Sept and fused in March and back in school full time before 4 weeks post-op was the lucky one. She started and stopped dealing with scoliosis in about a seven or eight month period. She said she never thinks about scoliosis. Both girls look and feel normal. They don't realize other people have a bit more ROM bending side-to-side. They have no loss of ROM from front-to-back which I imagine would be most noticeable if they had lost some of that. They don't remember what it was like before their diagnosis so it's all normal to them going forward now.

If there is a down side, we haven't seen it yet and I don't expect to given the surgeon's comments. It looks and feels like a total win so far. But we will see.

rohrer01
01-26-2014, 11:36 PM
The reason your girls probably don't "remember" more ROM before their surgeries is likely due to the fact that they didn't have it. My ROM is WAY diminished from my scoliosis and I'm not fused. The bends in the spine take away MUCH of the lateral motion. I hope they continue to do well. I'm thinking there may be a rod removal revision sometime down the road for my DIL. But that may be years away. Who knows?

Pooka1
01-27-2014, 06:55 AM
The reason your girls probably don't "remember" more ROM before their surgeries is likely due to the fact that they didn't have it. My ROM is WAY diminished from my scoliosis and I'm not fused. The bends in the spine take away MUCH of the lateral motion. I hope they continue to do well. I'm thinking there may be a rod removal revision sometime down the road for my DIL. But that may be years away. Who knows?

Well that is something I never considered! I just assumed it was the fusion. But maybe you are right.

As a general matter, if that is true for many T fusions, it could be these kids actually do perceive no difference at all before and after surgery. And if stable for life then they didn't lose anything that they hadn't already lost. The only thing they lost was the scoliosis. Blows my mind.

rohrer01
01-27-2014, 11:28 AM
Well that is something I never considered! I just assumed it was the fusion. But maybe you are right.

As a general matter, if that is true for many T fusions, it could be these kids actually do perceive no difference at all before and after surgery. And if stable for life then they didn't lose anything that they hadn't already lost. The only thing they lost was the scoliosis. Blows my mind.

Of course I'm right! LOL
I live with the scoliosis part. There are a lot of "normal" things I can't do. I can't touch my chin to my chest and I can't bend sideways very far through the rib cage. I also can't hunch my back like a cat. So for me, as things progress, it does feel like I'm fused. I got really hurt trying to do a summersault when my grandson was a toddler. I was trying to teach him how and I REALLY couldn't bend that way. I ended up wrenching my neck so badly that I had to go to the doctor!

Pooka1
01-27-2014, 03:58 PM
Of course I'm right! LOL
I live with the scoliosis part. There are a lot of "normal" things I can't do. I can't touch my chin to my chest and I can't bend sideways very far through the rib cage. I also can't hunch my back like a cat. So for me, as things progress, it does feel like I'm fused. I got really hurt trying to do a summersault when my grandson was a toddler. I was trying to teach him how and I REALLY couldn't bend that way. I ended up wrenching my neck so badly that I had to go to the doctor!

This is why it is so valuable having patients talking with parents. I really never considered any of this. All I ever could assume was that any loss in ROM must be due to the fusion.

This is very valuable information you have given me. Thanks so much.

Jinseeker
01-28-2014, 05:06 AM
Has anyone had the feeling of a pinched nerve, whether ? I know I haven't mentioned this much but I do get it. It feels like someone pinched me in my back and then a burning sensation follows. Fortunately, I only get it very rarely and often times only when sitting for long periods of time. The intensity of the pain varies but always dissapears in an instant, sometimes it is slight, sometimes it is enough to startle me and stop me from working. The pinched feeling ONLY happens in my lumbar area right where my thoracic curve ends at L1(I presume) and meets with my lumbar curve. Sometimes it is closer to the middle of my spine, but often it occurs more nearer to my left external oblique at my back where the concave rib cage rests.

Could this be a prelude to degenerative discs even though often the pinched nerve feeling occurs far from the spinal area? I have researched the causes of pinched nerves, and they all are mostly associated with the discs. Thankfully though treatment options are mostly just exercise therapy and if worst comes to worst, surgery to clean out the surrounding bony area around the discs or widening the spinal canal, no disc replacement surgery needed, therefore no fusion is neccessary :)

Pooka1
01-28-2014, 06:39 AM
Ti Ed had I believe years of disc problems before he was fused so he would probably know if this is consistent with disc issues. But this part,

"Fortunately, I only get it very rarely and often times only when sitting for long periods of time. The intensity of the pain varies but always disappears in an instant, sometimes it is slight, sometimes it is enough to startle me and stop me from working."

sounds exactly like what happened to me with my herniated disc in the early 1990s I would be at a meeting and at some point move and I went from zero to ten to zero in like a second. Like a knife in and out. And only when I had been sitting for a while. I screamed out at times and had to explain what happened.

The diagnosis was herniated disc and they gave me PT but told me rest would help also. After a few months, the episode was over.

I herniated another disc (probably the same one) in 2012 while riding and this time got instant sciatica down my butt. I was debilitated to a point where I was not sure how I was going to get off my horse. Episodes of this pain have caused me to be nauseous. Knowing what it was and that it wasn't going away after 1.5 years of daily pain, I eventually just rested it for three months (meaning stopped riding my horse) and drove up the world-wide price of Motrin for inflammation. I am now back to zero pain. I can't produce the pain now no matter what I do. The disc injury healed. I expect to re-injure it episodically the rest of my life.

I bet PT will work for you. Good luck.