PDA

View Full Version : Kstrong



Kstrong529
11-19-2016, 12:29 AM
Wow. I'm so confused. This shouldn't be this difficult. After roughly 18 months trying to be allowed to ask a question, I finally got approval and am now trying to do this on my iPhone so I don't wake my husband using the computer. I'm new too. Wore Boston brace at age 13. It was miserable. Supposed to be 5'7" only 5'4" and now I'm only 5'3". Long story short I'm age 50 now. Been living off of pain meds and seeing pain mgt dr for 2 years. I'm so depressed from my pain I was having very dark thoughts. My outside looks better than my inside. I'm
Told I look young for my age but my spine feels otherwise. I'm 55 degrees in my thoracic spine 40 something lumbar. Neck is wrecked and presses on my cord. Supposed to have total fusion surgery to my sacrum next year at UCSF. Dr Ames is wonderful but I don't want to be disabled, not being able to put my own shoes on. I'm angry. So angry that all my hours and hours of research no one seems to care much about scoliosis. All sorts of funding for diabetes. Cancer...u name it. Not much for scoliosis. It's the spine! Pretty important in my opinion. I have one son. He's 23 years old 6'4" tall and has my back. Was told when I was pregnant I was having a son and I was grateful because of the propensity of scoliosis being more likely in girls. Well nope. My kid got my spine. Even curves the same. Recently I cancelled my 2 day surgery set for next May (3 neurosurgeons were required for my lovely spine) and I charged $4500 on my credit card for the Spinecor brace. Has anyone my age worn one for very long? Only had it 3 weeks. It's not fun but better than the Boston one I had at age 12. Right now I feel I blew $4500 on basically nothing. It holds me up better but I still have low energy. Pain and muscle spasms and worse pain in my neck because it pulls on it. I don't know what to say or do. I see specific PT in some states where Schroth exercises are taught and the CLEAR method PT for scoliosis but there's none of that in Reno Nevada. I've been to UCLA & UCSF & got two different surgical options. Who on here my age had scoliosis surgery to their sacrum. Are u glad u did? Reading the risks in my paperwork I received made me want to throw up. I was physically sick for days. I don't know what the right thing to do is. I'm grateful I finally got approved to post after 18 months, but I'm so sad depressed and anxious and angry I can't think of anything but my curved & crumbling spine. The stabbing pain kind of doesn't let me forget. I'm not sure how to navigate thru this site. Tears blurring my vision now but does anyone know how or where I can find out how to get more research into scoliosis treatments? How much money goes into it per year or is it basically surgeons doing it on their own time? It's almost 2017 and no one knows how it's caused. So upsetting. Sorry for the rant but I'm so sick of ppl saying how good I look and hearing "back problems at your age?" Um yeah. Double S curves, arthritis throughout herniated & bulging discs & pain daily that's indescribable. Any thoughts or directions to point me in is greatly appreciated. Oh and the lady who said her 11 year old doesn't show signs of it yet... my son was diagnosed pretty much by me during his well child check up with his pediatrician. I told her I saw it when he was 13. I was right. Went from perfectly straight to curves in less than 2 years. You'd think at this day & age there'd be tools to stop it.

titaniumed
11-19-2016, 07:08 AM
Double S curves, arthritis throughout herniated & bulging discs & pain daily that's indescribable. Any thoughts or directions to point me in is greatly appreciated.


Been there done that.....

If you have sciatica, true leg pain, I would suggest going down to Steamboat Hot Springs and getting a tub room and boiling your back. That would be the cheapest easiest relief for right now especially with this storm thatís moving in. A good massage would be helpful right after you soak.

I had 4 lumbar herniationís in a 70 degree curve years ago and was taking Celebrex for pain which was a life saver at that time. There was a recent study done on Celebrex, and it looks as if the dark cloud has blown away from this medication as far as heart problems go.....Once again, I wouldnít consider it safe as milk, and long term medication usage can present issues.
http://www.npr.org/sections/health-shots/2016/11/13/501033431/safety-of-painkiller-celebrex-affirmed-in-new-study

We have posters here from all over the world, from Argentina to Moldova, its not often that the Reno scolis post, but glad you did. (smiley face) Iím out in Spanish Springs.

This is a good forum.....We have covered quite a bit here sitting around the table for many years, glad you sat down.

How did you get your Spinecore brace? Is there somebody in Reno fitting these? I am interested in what you think about the brace.

Oh, and I finally did have surgery with Dr Menmuir.....(He saved my life) I am almost 9 years post now.....Iím fused to the Pelvis.

if you need to talk, e-mail me titaniumed@hotmail.com

Deep breaths!

Ed

LindaRacine
11-19-2016, 01:28 PM
Please note that I have moved these posts as to not hijack the other thread.

LindaRacine
11-19-2016, 01:39 PM
There's a thread that has stories of people who are happy that they've had surgery.

http://www.scoliosis.org/forum/showthread.php?12823-The-I-m-Happy-I-Had-Surgery-Sticky-Thread

Also, if you haven't already pursued it, you might want to start working on your depression with a professional. People with significant depression have a much higher risk of having a poor outcome from spine surgery.

--Linda

Pooka1
11-20-2016, 01:01 PM
Hi and welcome.

I just wanted to echo what Linda said about treating any depression. There is no reason you need that suffering on top of what you are already dealing with.

I also wanted to say that you can try PT. I think surgeons try to exhaust that option for pain before going to surgery. It may help with pain.

There is absolutely no reason to seek out Schroth or Clear over regular PT. There is no evidence those things help more with pain than regular PT as far as I know. Schroth was invented by a lay person and it shows. Clear is chiro which is not a science. Chiro schools have been compared to trade schools for a reason. They are nothing like medical school in terms of rigor.

Good luck. I hope you find relief. Life is very unfair. Both my twin daughters needed fusion. We are just all doing the best we can.

Kay1974
11-20-2016, 03:21 PM
Yes I wanted to say, that I feel PT is helping me with my pain as well as my attitude. Trust me, I know how easy it is to let the "Scoliosis pain" and my"curve feels like it is getting worse"thoughts take over. I am able to walk with some amount of discomfort but I do continue to walk daily for 30 minutes. It helps me keep my mind right and not let the discouraging feelings take over. Just being outside deep breathing helps also.

As far as Schroth stretches that I am learning goes, it is no different than other stretches I do that I have learned from you tube and stuff like that. Do some Scoliosis PT searches in you tube and see what you find,. I do a combination of PT that I have learned over the years, some yoga stuff for my sciatica, some Schroth, some cardio. I don't believe in any single thing I guess, I do whatever I can and feel like is working and making me feel better.

Good luck and remember that we are all here for the same thing, support, education, and acceptance.

burdle
11-21-2016, 11:03 AM
I am in UK and have roughly same size curves as you ( well over surgery levels). I am 58- I too suffer from depression.

My surgery ( if I ever have it ) will be from neck to sacrum also.

I too need to rant over the lack of research and treatment for Scoliosis.

I have just had my latest 6 month check up at the London Centre of excellence for spinal problem ( RNOH). saw yet again a different consult. Never have seen the same one twice. This one just launched into the cons of surgery- said 80% have complications. I waited 3.5 hours for my apt and was in for 10 mins. he ordered another MRI and because of the long-waiting lists will not get to see him for results till nov 17 even though it should be a follow up within 6 weeks.

I left in tears- travelled miles to the hospital in bad weather etc.

We patients get no help with scoliosis in UK- so many medics are uninformed about it but will STILL give you their depressing opinion. There is no conservative care from the NHS and many charlatans who will take your money privately.

I do not know much about the Spinecore brace except that patients seem to think it is not much help- not sure why it is recommended on the NSF site? I think it is time the info regarding it was updated.

Kstrong529
11-23-2016, 01:03 AM
Been there done that.....

If you have sciatica, true leg pain, I would suggest going down to Steamboat Hot Springs and getting a tub room and boiling your back. That would be the cheapest easiest relief for right now especially with this storm thatís moving in. A good massage would be helpful right after you soak.

I had 4 lumbar herniationís in a 70 degree curve years ago and was taking Celebrex for pain which was a life saver at that time. There was a recent study done on Celebrex, and it looks as if the dark cloud has blown away from this medication as far as heart problems go.....Once again, I wouldnít consider it safe as milk, and long term medication usage can present issues.
http://www.npr.org/sections/health-shots/2016/11/13/501033431/safety-of-painkiller-celebrex-affirmed-in-new-study

We have posters here from all over the world, from Argentina to Moldova, its not often that the Reno scolis post, but glad you did. (smiley face) Iím out in Spanish Springs.

This is a good forum.....We have covered quite a bit here sitting around the table for many years, glad you sat down.

How did you get your Spinecore brace? Is there somebody in Reno fitting these? I am interested in what you think about the brace.

Oh, and I finally did have surgery with Dr Menmuir.....(He saved my life) I am almost 9 years post now.....Iím fused to the Pelvis.

if you need to talk, e-mail me titaniumed@hotmail.com

Deep breaths!

Ed

Hi Ed!
I'm actually in Sparks, NV...D'Andrea area...not far from you!

Dr. Menmuir...that's is so funny because he was the ortho surgeon who fixed my broken ankle when I was in high school. Small world for sure. Orthopedic docs can't help me. I'm neurosurgery now, I guess because it's my cord that's being smashed. I hate how risky that surgery is, because days like today, I'd happily take the risk. I appreciate you giving me your email address and if you wouldn't mind, I'd like to bother you some more and ask questions. I clicked on your links of your xrays. I'm glad you are happy you had the surgery.

My Spinecor brace - I researched and found Dr. Tom Pappas. He's out of Chicago, IL, but he also works in AZ once every 6 weeks. I called him up, met him in AZ...he reviewed my films and $4500 later...I got my brace. I saw a post from "Burdle" who lives in the UK - and actually that's where the brace is made. I'm not sure if I'm replying in the right area or correct format, but I was going to tell you that too.

Thank you ....I will email you shortly. Scoliosis IS AWFUL! Doesn't really hurt as a kid, but I can't do anything before 11:30 am....my life is garbage because of this darn back. I know someone mentioned PT...I've been doing PT since I was 12 on and off. Spine Nevada - are you familiar with that place? Horrible PT there. I was going to the University for the past decade, but once I get home after the 15 minute drive, I feel horrible again. It was more helpful when I was younger.

Again, thank you for your help and insight. :o)

Kstrong529
11-23-2016, 01:13 AM
I am in UK and have roughly same size curves as you ( well over surgery levels). I am 58- I too suffer from depression.

My surgery ( if I ever have it ) will be from neck to sacrum also.

I too need to rant over the lack of research and treatment for Scoliosis.

I have just had my latest 6 month check up at the London Centre of excellence for spinal problem ( RNOH). saw yet again a different consult. Never have seen the same one twice. This one just launched into the cons of surgery- said 80% have complications. I waited 3.5 hours for my apt and was in for 10 mins. he ordered another MRI and because of the long-waiting lists will not get to see him for results till nov 17 even though it should be a follow up within 6 weeks.

I left in tears- travelled miles to the hospital in bad weather etc.

We patients get no help with scoliosis in UK- so many medics are uninformed about it but will STILL give you their depressing opinion. There is no conservative care from the NHS and many charlatans who will take your money privately.

I do not know much about the Spinecore brace except that patients seem to think it is not much help- not sure why it is recommended on the NSF site? I think it is time the info regarding it was updated.



Hi! I'm so sorry you left in tears after traveling all that way. That's what happened to me last month after my surgical consult in San Francisco. Dr. Christopher Ames is amazing and I'd be in good hands, but I wasn't expecting him to say TWO separate surgeries! And the RISKS...OMG!

Spinecor brace is helpful to me when I'm standing for longer than 15 minutes. It holds me upright and pulls my sholders back. When I do my PT exercises with it on, it seems more beneficial because I feel stronger while doing them with the brace on. Not happy about the $4500 - I guess it's worth it to actually be able to do basic household chores without wanting to scream from pain.

Please tell me how your MRI went. Are you able to function somewhat normally? I saw a post - I think the gal is a bit younger than I am - but wow, for me - I'm not overweight, I was always active, worked in the criminal justice system, I had pain daily, but when I turned 47, it was a rapid decline. I mean rapid! I get up in the morning and I feel like I'm going to fall over. I cry while taking my medications...after an hour or so, I shower and my miserable day doesn't start til around noon. My favorite part of my life is going to sleep. My bed is amazing. Serta Icomfort mattress and that's the ONLY time, laying flat on my back, that I'm not 100% miserable. But then I go to sleep and my arms and legs fall asleep so I'm up 10 x per night.

Can you get a Spinecor brace in the UK? I'd definitely try it out if it doesn't cost you anything. I hate wearing it out of the house because I'm stuck with wearing leggings, but I do have the thing on when I'm cleaning the house or cooking.

Are you considering surgery? I'm going to have to go back on and find the links of the people who are happy with their surgeries. I got the bejeezus scared out of me after reading an article by Dr. Axe saying to stay the heck away from scoliosis surgery due to the high failure rate.

Praying for relief for you and I appreciate your response.

Kstrong529
11-23-2016, 01:22 AM
Yes I wanted to say, that I feel PT is helping me with my pain as well as my attitude. Trust me, I know how easy it is to let the "Scoliosis pain" and my"curve feels like it is getting worse"thoughts take over. I am able to walk with some amount of discomfort but I do continue to walk daily for 30 minutes. It helps me keep my mind right and not let the discouraging feelings take over. Just being outside deep breathing helps also.

As far as Schroth stretches that I am learning goes, it is no different than other stretches I do that I have learned from you tube and stuff like that. Do some Scoliosis PT searches in you tube and see what you find,. I do a combination of PT that I have learned over the years, some yoga stuff for my sciatica, some Schroth, some cardio. I don't believe in any single thing I guess, I do whatever I can and feel like is working and making me feel better.

Good luck and remember that we are all here for the same thing, support, education, and acceptance.

Hi, thank you for your response. I'm still trying to figure this thing out. You are all so kind. I've had PT for over 35 years now. I just stopped because I'm tapped out on funds after buying my brace my insurance wouldn't cover. I do my exercises everyday on the days that I can. I'm unable to do so many things and will only do surgery as a last resort...but I think my last resort...with this Spinecor brace....is my last resort. I'm just scared. I've seen a psychologist for depression/anxiety for about 4 years and even took meds, but I think my depression and sad moods are from my spine. I'm not real thrilled to meet friends for lunch, shop or see a movie when it hurts to move around. I'm confined to my house most of the time, but if I put my brace on, I can walk my dogs with my hub. ALL I think about is the surgery the neurosurgeon told me I needed to have. It's all consuming and I wish someone else could make my decision for me.

Thank you for your support and I'm glad you are doing things that make you feel better. :o)

Kstrong529
11-23-2016, 01:30 AM
Hi and welcome.

I just wanted to echo what Linda said about treating any depression. There is no reason you need that suffering on top of what you are already dealing with.

I also wanted to say that you can try PT. I think surgeons try to exhaust that option for pain before going to surgery. It may help with pain.

There is absolutely no reason to seek out Schroth or Clear over regular PT. There is no evidence those things help more with pain than regular PT as far as I know. Schroth was invented by a lay person and it shows. Clear is chiro which is not a science. Chiro schools have been compared to trade schools for a reason. They are nothing like medical school in terms of rigor.

Good luck. I hope you find relief. Life is very unfair. Both my twin daughters needed fusion. We are just all doing the best we can.


Hello,
I'm so sorry for your girls. They both need fusion surgery or did they already have it? I get so frustrated because I saw 3 neurosurgeons and got 3 different surgery opinions on my very same spine! The only one I trusted was Dr. Christopher Ames. There's a reason why UCSF is #1 in neurosurgery (at least on the west coast).

I see a chiropractor...to help me move around my stiff spine. He's pretty good. He told me I have time and there should be new things to come regarding scoliosis surgery, but really there's not much research from what I can find. When I've research the CLEAR method and SCHROTH exercises, I've seed adults who had improvements in their curves. Seems to be very helpful in young kids. I just had my son's x-rays taken last Friday, (he's 23) and his scoliosis is progressing as well. Not nearly as bad as mine is, but I see that his back is causing him pain lugging around the laptop in the backpack at school.

Do you yourself have scoliosis? It ran in my mother's side of the family with me being the worst. My two female cousins have it slightly and my dr told me when I was pregnant that it was a 1% chance my son would have it. If I had a 9 1/2 lb, breech baby boy, with scoliosis which developed later, I'm not thinking I have luck on my side to go ahead with that miserable two day surgery in San Francisco next May. That clamshell brace to wear for 6 months during the recovery and not being about to put my shoes on ever again isn't sounding so nice right now. 24/7 all I think about is my stupid spine. I can't even focus on a good book.

Thanks for your kindness and support. I hope your girls are doing well! :)

Pooka1
11-23-2016, 07:14 AM
My Spinecor brace - I researched and found Dr. Tom Pappas. He's out of Chicago, IL, but he also works in AZ once every 6 weeks. I called him up, met him in AZ...he reviewed my films and $4500 later...I got my brace.

Pappas is a chiro. I searched his web site and he never admits it. He is trying to fool people into thinking he is a real medical doctor. The problem is that chiros are allowed to use the "doctor" title. This problem is avoided in Europe where chiros are NOT allowed to use that title.

In the US, the Spinecor brace is sold almost completely by chiros because there is no evidence it helps kids avoid surgery. Orthopedic surgeons are honest and know this so they don't offer it. Chiros do not care about evidence and so they sell the braces. though the Spinecor was invented by orthopedic surgeons, it was never shown to be effective. But people wanted it. This became a cash cow to chiros. It may help adults with pain but it doesn't help anyone avoid progression.

He would have sold you the brace no matter what was on your films. He doesn't know how to interpret films because he is a chiro. They think there are "subluxations" in the back yet no two chiros can point to the same spot on a radiograph as to where the subluxation is. Chiro rests on a imaginary concept. It is a trade school peddling nonsense.

https://www.sciencebasedmedicine.org/chiropractic-education-for-primary-care/

And if they can't even do primary care then they are completely untrained for orthopedics.

Pooka1
11-23-2016, 07:32 AM
Hello,
I'm so sorry for your girls. They both need fusion surgery or did they already have it?

Yes. In 2008 and 2009. They have moved on with their life and our family has moved past scoliosis. It is no longer a topic in our lives. The surgery saved their lives literally in one case and figuratively in both cases.


I get so frustrated because I saw 3 neurosurgeons and got 3 different surgery opinions on my very same spine! The only one I trusted was Dr. Christopher Ames. There's a reason why UCSF is #1 in neurosurgery (at least on the west coast).

Yes I think that is because there may be more than one right answer. But nobody knows which is the very best answer if there is one.


When I've research the CLEAR method and SCHROTH exercises, I've seed adults who had improvements in their curves. Seems to be very helpful in young kids.

There is no evidence anyone improved their curve permanently with Schroth or Clear. That's why there is still surgery on people who tried these methods. There have been several kids on the group who were doing PT. Most drop off and are never heard from again WITHOUT posting the result. There is probably a reason for that. But the condition is so variable that you can never know if the PT is doing anything.


I just had my son's x-rays taken last Friday, (he's 23) and his scoliosis is progressing as well. Not nearly as bad as mine is, but I see that his back is causing him pain lugging around the laptop in the backpack at school.

I am very sorry to hear that. I wanted to mention if he ever progresses to surgical range that there are options instead of fusion for him and maybe you too. There is stapling and tethering. I wish my girls presented a few years later because they may have been tethered instead of fused.

http://pediatricspinefoundation.org/vbt-and-vbs/


Do you yourself have scoliosis? It ran in my mother's side of the family with me being the worst. My two female cousins have it slightly and my dr told me when I was pregnant that it was a 1% chance my son would have it. If I had a 9 1/2 lb, breech baby boy, with scoliosis which developed later, I'm not thinking I have luck on my side to go ahead with that miserable two day surgery in San Francisco next May. That clamshell brace to wear for 6 months during the recovery and not being about to put my shoes on ever again isn't sounding so nice right now. 24/7 all I think about is my stupid spine. I can't even focus on a good book.

I don't have it but my aunt has scoliosis and my husband has a cousin who needed fusion for scoliosis. My daughters have a connective tissue disorder though not Marfans at this point. Their scoliosis is most likely linked to that and so would be syndromic and not AIS. Their curves progressed at a pace quicker than any other child I have seen mentioned on this forum so they aren't typical. Their spines were collapsing. That's why I say the surgery saved their lives.

I hope you find some relief from the pain in your back and your emotional pain. There is no need to suffer. Depression is very treatable. Actually much depression is cured whether you treat it or not. But if you depression has persisted, you can treat it.