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twisterLA
09-19-2006, 09:16 PM
Does anyone have any suggestions regarding alternatives to surgery? I have a thoracolumbar curve that has been measured at almost 60 degrees with fairly constant moderate pain.

Pips
09-25-2006, 09:33 AM
I'm afraid I never found any myself and ended up having surgery. This way I know I don't face a future of deterioration and my pain levels have definitely improved since the surgery. I wouldn't dismiss surgery out of hand and hope someone else can help you.

Singer
09-25-2006, 10:45 AM
I always said I'd do anything to avoid this surgery, but once a curve passes 50 degrees or so, it USUALLY progresses relentlessly. There are certainly people walking around doing okay with big curves, but everyone's curves and circumstances are so different it's hard to generalize. I know that in my particular case, my degree of rotation is so bad my rib cage is just a few degrees away from crowding my diaphragm and my discs are all bulging like crazy. For that reason alone, even if my curve doesn't progress any more, I can count on major disc problems later in life. Those are the things you need to think about.

Good luck....

SandyC
09-25-2006, 03:54 PM
TwisterLA,
With a 60 curve, there is not going to be a lot your going to be able to do about the pain, other than corrective surgery. Muscle relaxants/narcotics for the pain is about it.

Are you afraid of the surgery, is that why you want alternatives?

Cakedec
09-25-2006, 10:54 PM
Dear Twister LA,

I had curves in the 60's for years and the doctors usually will send you in for physical therapy to see if that gives you any relief before they want to consider you for surgery. You might get one to refer you to a therapist experienced in treating scoliosis and give it a good try. It can be a big help in stretching and strengthening muscles that are being pulled and abnormally stretched by scoliosis curves. But it can't stop the progression of your curve.

I didn't have surgery until my curves were in the 70's and they were only able to correct them into the 40's. If you get your curves straightened now, you might be able to get a better correction than if you wait. Keep good tabs with a dr. about how they are changing each year.

Deb
age 47
posterior surgery 7/24/06
for S curve T70,L76
30 degrees correction
"DON'T WAIT"

twisterLA
09-27-2006, 03:28 PM
Thanks everyone for taking the time to share information and experience. To answer the questions, I admit to being afraid of surgery. Mostly I am concerned about achieving the maximum possible correction and about the loss of range of motion with a fusion from T10-L4 as suggested. I am very active in many sports and have done Physical Therapy in the past but without major benefits. I practice Yoga, Pilates, and Strength Training almost daily. My pain can become severe and is due to some degenerative changes and a bone spur- I'm in my early 30s so I dread how bad this might get in future. I never use painkillers or other meds because I get little relief from them. So far, the only thing that gives me true pain relief is yoga and stretching.

SandyC
09-27-2006, 05:09 PM
TwisterLA,
I had the A/P done in '02 at 52 yrs. I was fused from T4-S1. I won't tell you that it isn't a HUGH surgery, but, having said that I would do it again in a heartbeat. Yes, there are some things that I have a hard time doing, but I can still get on my hands and knees to plant spring blubs or pull weeds. With a long fusion like mine, I had to learn how to do somethings differantly. With a fusion to L4 you would still have movement at waist level and would see very little differance on how you move or what you can do.

Perhaps going to see a doc that deals with ADULT scoli patients and hearing what he/she has to say would help. Also, you could ask the doc to talk to a couple of his patients that have had the same surgery. Meeting with other patients that have had the same surgery would give you a realistic idea of how you would be impacted by the surgery.

macky
09-30-2006, 04:50 AM
Twister honey, you have some great information here from some very experienced people. I too would definately opt for surgery. I did 40 years ago and did absolutely everything and enjoyed every minute of it. The surgery did not stop me from not doing absolutely anything.

OK so now I have been pulled up a bit and have to take things a bit easy, but hey I am 55 so I dont care!!..

Macky

twisterLA
12-10-2006, 05:06 AM
Thanks again for all the feedback. It seems appropriate to post an update.....I had surgery in October and am recovering at a slow but steady pace.

bluestone
07-18-2008, 10:38 AM
Having read the replies to this I feel worried sick about my situation.I have a curve of 60 degrees and problems with my neck and arms now-due to see a soecialist about this.Last time I went I was told that my curve is too severe for surgery and that I would only be opened up to release a trapped nerve.My pain seems to get worse every year even though I take medication.I dont know what to do anymore and am fearful for the future.I have done a couple of postings not yet replied to and am DESPERATE for some advice and what steps I should take next.

Writer
07-19-2008, 03:31 AM
Since the old posts in this thread there are some physiotherapy options for scoliosis in the UK. See:

http://www.scoliosissos.com/

http://www.foxburgh.co.uk/

The main Schroth clinics are in Germany, particularly:

www.skoliose.com

The likelihood of Schroth treatment alleviating your pain is very good.

orchid
07-19-2008, 05:00 AM
You should note that Scoliosis SOS in the Uk does not provide Schroth therapy. It originally claimed to do so, but it was actually providing physiotherapy that was simply based on Schroth without many of the important facets of the therapy (including bracing, which is essential for growing adolescents). Dr Weiss has stated his wish to be disassociated with the clinic and they are now touting a therapy called Scoliogold which is they claim is the only scientifically proven nonsurgical alternative for scoliosis, yet there doesn't seem to be any independent medical research studies to back this up. If anyone can point me in the direction of such studies I would be very interested to see them, and I would also be very interested to know who the Scoliogold therapy was designed by, because the clinic is run by people with no medical qualifications and is staffed by one doctor who only qualified in the past few years and some physios who are also relatively newly qualified. The more I hear about this clinic, the more it worries me. A friend of mine contacted them and was told that his kyphosis would definitely progress if he didn't start their treatment at once, desite the fact that he told them he has had a long spinal fusion which is solid.

Buyer beware!

txmarinemom
07-19-2008, 05:13 AM
Since the old posts in this thread there are some physiotherapy options for scoliosis in the UK. See:

http://www.scoliosissos.com/
http://www.foxburgh.co.uk/

The main Schroth clinics are in Germany, particularly: www.skoliose.com

The likelihood of Schroth treatment alleviating your pain is very good.

And here's the thread from yesterday on Scoliogold (the link Writer provided as http://www.scoliosissos.com/)


http://www.scoliosis.org/forum/showthread.php?t=7544

I have NO idea how anyone can read the referenced thread and consider this a valid "treatment".

Seems to be that everyone feels it's bogus (including our moderator, Linda Racine).


I agree... at least half of the pictures are totally faked.

--Linda

Writer, when will you learn?

Writer
07-19-2008, 04:13 PM
Marine -- take off your combat boots and act like a lady.

I wouldn't blithely condemn the Suffolk clinic based on what I've seen at this forum, which is mostly second- or third-hand information that I saw long before it turned up here. At least some of their therapists were trained in Bad Sobernheim. Dr Weiss later wrote not about the quality of the therapy but about some administrative issue that is long since solved because the person left the clinic.

Bluestone is well past adolescence. Thus mention of bracing is irrelevant. She is mature and fully competent to do her own evaluations. I am simply offering information sources.

I explained in another thread why combative people like the Marine are threatened by nonsurgical treatments and thus attempt to stomp out information about it.

http://www.scoliosis.org/forum/showthread.php?t=7483

Incidentally, spinal fusions long or short, unless it's all 24 vertebrae, are no protection against progression, as many victims of multiple surgeries can attest. The unfused spinal segments can continue to progress, sometimes many years after surgery, because surgery does not address the central problem of scoliosis -- complex muscular imbalances. Here is a reference to an article that explains how to avoid it:

http://www.scoliosis.org/forum/showthread.php?t=7178&page=2&pp=15

orchid
07-19-2008, 05:00 PM
This is not quite true, I have been looking for information on the Scoliosis SOS clinic myself and a friend of mine has also been in touch with them. So we have firsthand knowledge. They are not registered with any regulatory healthcare body in the UK and there doesn't appear to be any clinically proven evidence that Scoliogold will work in the longterm, yet they are claiming that this is the ONLY proven nonsurgical treatment for scoliosis. Only their doctor and one physio originally trained at the Barcelona clinic and since then they have simply certified their own staff. The staff are all relatively newly-qualified (2004 at the earliest - dates for the doctor are available on the GMC website and for the physios on the clinic's own website) and it is unknown exactly who created this Scoliogold method.

Since the clinic has a doctor working for them, they are required by law to register with the UK's Healthcare Commission, but they have not done this and the Healthcare Commission say that they have been told Scoliosis SOS only has physios and no doctors. This means that patients are not protected should something go wrong at the clinic - they'll have no-one to turn to if they have complaints.

I'm not against alternatives to surgery, and I think that Schroth looks really very good, especially for adults who have finished growing, but there have been some clinical studies that have been done regarding the effectiveness of Schroth and it has the benefit of years of proof that it can help. In addition, the clinics in Germany and Barcelona are run by medically qualified doctors. The evidence doesn't appear to exist for Scoliogold and the clinic is run by people with no medical qualifications. I will be happy to revise my opinion if someone can point me in the direction of some clinical, peer reviewed research studies into the efficacy of Scoliogold but no-one in the medical/scientific world seems to have heard of it the clinic ignores you when you ask for them!

Writer
07-19-2008, 05:28 PM
Thank you orchid, that is a reasonable response. I hope that Erika Maude's clinic will document their claims. I am very familiar with Schroth and its extensive literature, but am not clear about what the distinction is with "Scoliogold."

I suggested that bluestone have a look at this clinic -- and others I mentioned -- simply because it is not too far from the Midlands where she lives. It is extremely unlikely that physiotherapy would do any harm, but very likely that scoliosis-specific PT will help at least for pain, and probably fairly quickly.

txmarinemom
07-19-2008, 05:33 PM
Marine -- take off your combat boots and act like a lady.

That's ridiculously classic, Writer, and quite possibly, among the most non-sequitur statements I've seen you pen. How uncouth of me to display the poor manners to disagree with an expert like you!

I didn't even comment on Schroth (since you obviously weren't paying attention when you read my response): The ONLY thing on which I commented, and referenced the comments of others from another recent thread, was Scoliogold.


I wouldn't blithely condemn the Suffolk clinic based on what I've seen at this forum, which is mostly second- or third-hand information that I saw long before it turned up here. At least some of their therapists were trained in Bad Sobernheim. Dr Weiss later wrote not about the quality of the therapy but about some administrative issue that is long since solved because the person left the clinic.

Such a typical response from you, and no wonder many believe the link you purport to Schroth is understated at best, disingenuous at worst.

While core-strengthening is never a bad thing, progressive curvature above/below a fused area is most often caused by decompensation (non-inclusion of all curve-involved vertebra in the fusion). If you're going to pretend to know *everything*, at least get the basics correct.

(... just like I'm not "the Marine")