Anybody have experience of using PAMM for scoliosis?
Posted , 6 users are following.
Hello
A local physio has suggested use of a power assisted micro manipulation machine (PAMM) for treating scoliosis. She claims to have used this very successfully for several years on many patients for different back problems including scoliosis.
Has anyone else come across this?
Thanks
0 likes, 9 replies
Jay91157 Hepclan
Posted
betty14688 Jay91157
Posted
I agree with the idea that this can't fix a curve. But you must know that there is no way to correct a curve, even through surgery. It is a bandaid. After 10 years, our backs will still curve, even with rods. I have had mine since I was 12 and now doctors tell me there is no cure. I have developed flat back syndrome, because this spine has a mind of its own,and it curves where the rods aren't placed, even the neck.Then, with the rods, you go into risk of titanium failure, the nuts and bolts disintregrate.I guess there is no real fix,I just wanted to reach out to you in case you're considering surgery,to let you know that it's not a permanent fix.
Jay91157 betty14688
Posted
I had my surgery last Feb 28th so nearly a year on and I am still adjusting to the feelings I get, the stiffness of not being able to bend except from the hips, and muscles spasms. Yes the curve will always reamain as trying to straighten in would almost undoubtedly break the spine but the rods prevent it getting worse and straighten you up.I was having massive problems with my ribs sticking and chronic hip and back ache. My curve top was 71 degrees and bottom curve 48 thoracis. The surgery corrected me to 37 top and almost pefectly staight bottom. I was 57 when I had the surgery and the middle of my back over the years stiffened so they could not straighten me up completely. The titanium rods are the scaffolding for the spine as I see it. Do you know what your curves were before your surgery and what they are now. Also would you mind me asking your age? I have not heard of titanium disintergrating. I know the screws can get loose, lets hope it does not happen to me. I took 2 years to decide on this surgery and I would advocate this surgery is not to be taken lightly. However I have never felt so good about myself and a month ago I brought and wore my first dress since the age of 11. I got diagnosed at the age of 14 and fell of the radar of the NHS at 16. By chance a trapped nerve in my neck got me a visit to a spinal surgeon and the rest is history as they say. Were you told by your surgeon that in 10 years your back will still curve? Are you in the Uk? If so may I ask where you had this done and how long ago? Thank you for your advice.
betty14688 Jay91157
Posted
I am 37 years old, and had the surgery when I was 12-56 Degree S curve.Wasn't supposed to make it to 33 years old, and i'm 37 now.When I had my surgery, my surgeon told my parents that getting the rods removed was an option, but the chance of paralysis would increase by 50%-Time went by, fell on hard times, never had the option to get them removed.
I am so elated to hear that you got to wear your first dress!I
live in the U.S., so no one touches this after this long.
I own a construction company, and no man outworks me, 5 years award winning, so please don't think I was being discouraging! I know all about the ribs, as I cant sleep on my back, and rotate every 3 hours at night, can't go the movies, because my right rib makes me feel as if someone is hitting me with a hammer.I had the same neck thing, got pregant,and lost the baby because my spine decided to almost decapitate me.My doctor told me that my head was at a crazy angle, as my spine had decided to move outside the paramters of my rods!
Titanium disintegration isn't so much about the titanium.It's more about the muscles and ligaments that hold it in place.They can't keep up with the metal, but once more, I was young when I had my surgery.
I talk to so many customers who have never had our problem, and they are in bad shape. On meds, and getting addicted, ya-da-ya-da.We have a gift, if we see it. We are given this pain as a challenge, and we wouldn't of been given it if we couldn't handle it,right? I have influenced over 10 people to get off the pain meds, because if we can do it, so can they.
Whether you're told or not, your spine will still curve. It's a bone disease.I started donating platelets a few months ago, as my Aunt has Leukemia, and I wanted to be a bone marrow donor. You know what the question they asked me was, that knocked me out of the game? Do you, or have you had scoliosis? The reason they ask this is that this isn't some spur of the moment affliction, like breaking a leg.It continues, and doesn't ever stop.I cried for 2 days, but said" Hey, get over it!Donate platelets!" We all have a special purpose, and just because we have this affliction, doesn't mean we can't kick butt!
betty14688
Posted
After you read my previous response,I received an email from a doctor - I don't have health insurance,let me preface this by saying that. I originally started my investigation beause I wanted to know and thank the doctor who had performed my surgery.I may not be perfect, but the older I get, I am inclined to contact the one who put the 2 rods in, and say thank-you.Whether it's better now than it could be, I'm not able to know.So this email came in response to my search for my surgeon.
Emis Moderator comment: I have removed the email that was pasted in full here as we do not post personal correspondence like this and it contained contact details. You can use the Private Message service to pass things like this on if required.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
betty14688
Posted
Apparently me previous post with the paste of the email from a doctor was deemed unable to be posted, as there were references to an individual person included in his email to me. I'm sorry for that, if you ever need or want to read it, email me or messgae me directly and I can provide it. This is a great site, and people like you keep me fighting, not just for myself, but for others who may be a bit new to this gift.Trust me, this pain is a gift, whether you see it now or not.Hopes and prayers for you, and best wishes!
Normagray02 Hepclan
Posted
betty14688 Hepclan
Posted
But, if you are in great pain, what is there to lose?
If you aren't in great pain yet, try some other things.If you want some advice, let me know. Had metal rods since I was 12, and I'm 37 now. There are pros and cons,and any alternative to surgery is always the best. This looks nonsurgical. Best of luck!
Glynnjaj Hepclan
Posted
Hi I've just realised this was dated 2 years ago- did anyone try PAMM?
My Titanium Rod has broken( fractured) in 2 places
I'd be interested in knowing the above helped anyone
Thankyou