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rohrer01
03-31-2010, 08:16 AM
I went to my neurosurgeon's PA-C yesterday. She thinks that there may be some new techniques out there that we can try using to reduce pain and the need for meds before jumping to the radical surgery. Again, I asked about botox injections under the scapula to help with muscle spasms. She didn't think I was a good candidate for that because something about using that on patients that have contorsion. Anyway, she talked about trying spinal implants that infuse small amounts of medication directly to the spinal chord or electrical impulses to disrupt pain signals.

I'm scheduled for another MRI next week to see what is going on in there so they know what they are working with. I have heard of these techniques (implants) for lower back pain, but I have pain from skull to tailbone. What could they possibly do that would help that? If they suggest PT again, I'll probably blow a gasket, since that seems to always be the pat answer. PT decreases the flare-ups but not the intensity of the pain when they happen. And quite frankly, I am an active person and whatever is going on seems to just be getting worse since January when I fell on the ice. It wasn't a hard fall, so I didn't think anything of it, but I did mention it. And PT always makes me feel like they are blaming me when it doesn't work. All they do is increase, increase, increase the amount of exercises. Excuse me, I have a life and don't want to spend all of it doing stupid exercises that give little benefit.

The gal that I saw was very sweet and seemed knowledgeable enough. She just wants to make sure that I explore ALL my options. She says that the stuff they do in the pain clinic can be "undone" if it doesn't work. If the scoliosis surgery doesn't work, I'm stuck. She just wants to make sure that I am making the most informed decision possible, and I agree. Surgery is a big deal, but at this stage in my life I finally feel mentally prepared, which I never did before.

I really want to go into this with a good attitude. So far, everyone in the neurosurgery department of this hospital has treated me with the utmost kindness and respect. I keep waiting for the other shoe to fall, though. The last time I went to their "pain clinic", I was treated like, well I can't say it on here. The pain psychologist asked me what my pain was that day, and mind you I was full of oxycontin and vicodin, so I told him a 1. He just looked at me and told me that he wished that he felt that good. Jerk! I was like 30 years old and on these meds. Do people NOT realize that not everyone wants to spend their life doped up? He also gave me a book that started out saying that nobody wants to hear about your pain, so STOP talking about it. Oh, I feel much better now.

My husband and I have been trying to have a baby for the last 6 years and have had nothing but miscarriages. We've spent thousands on female reconstructive surgery so that I can conceive, then fertility treatments. It got to the point where the pain was interfering, NSAIDS during follicular phase and narcotics during luteal phase. Then we pretty much ran out of money and were just going to let nature take it's course. We do not want to HAVE to use birth control, but because of the meds, I am forced to use birth control. I am 41 and coming to the end of my child-bearing years. I feel sad that I am being robbed of the chance of having a child with my husband because of crippling pain, or the medications. It so would not be fair to bring an addicted baby into the world, KNOWING you did it on purpose just to selfishly have a child. It wouldn't be fair to put up with the pain and get through a pregnancy just to have a child that I can't hold. I'm having a hard time with this, as you can see. I just apologized to my dear sweet husband last night for not being able to give him a child. He is much more understanding than I am. I think I wanted it worse than he did.

I feel like all of these pain doctors and what not are wasting my precious few years that I have left to try. But if I can't get better, I'm done with babies. Like I said, I want to go into this with a positive attitude. The last jerk that I saw apparently didn't realize that some females want to go on to have children and all these pain drugs just don't fit into that plan. I really hope they have something better to offer.

Even you guys out there, were there any effective treatments that the pain clinics offered you that weren't drug related?

I finally found out just exactly what my scoliotic progression is over the last 5 years. Five years ago my upper-thoracic curve was 40* and mid-thoracic curve was 22*. As of last month, my curves wer 46* and 28* respectively. So right around a degree per year. I wish I wasn't dealing with my "mid-life crisis" right now. But I just need to accept the fact, that whatever pain management method I choose, be it from the pain clinic or surgery, there aren't likely to be any more children for me, except grandchildren, of course. I just thank my creator for the beautiful year and a half old grandson that I have. I know the whole baby thing seems off topic. But scoliosis affects our WHOLE lives, not just our spine. Decisions we make, whether having children, what job opportunities are available to us, to many, many other important life decisions are affected by this wretched disease. I'm angry at my scoliosis right now. I feel like it's beating me down. Maybe I'm feeling a little depressed right now because pain makes sleep virtually impossible.

Any suggestions there? I mean comfortable mattresses, beds, sleeping techniques that have worked for any of you? I've tried firm mattresses because everyone says that is best. I HATE them. I feel totally unrested and like someone beat me with a 2X4 in the morning, literally. I've tried feather toppers (good ones and bad ones), but the feathers still manage to occasionally stick through and the soft fluffiness seems to harden up as the night progresses. I've tried egg crates, even multiple ones (like 4), and finally last but not least, memory foam. I have even combined all of these things in different orders. Right now, I find the memory foam to be most comfortable, but I only have a two inch mattress topper, but it sits on the like 4-6 inch feather topper. I'm thinking a new mattress instead of all these toppers, but don't want to invest in one unless it is going to be comfortable. All suggestions welcome. I've thought of the sleep number bed, but can't incline it. I thought about buying an outright hospital bed (they do sell doubles) with a memory foam mattress. I just don't know.

Anyway, any words of wisdom on any of these topics are more than welcome. Thanks for hearing me out! I hope you all have a great day, it's supposed to be warm here, finally!

rohrer01
03-31-2010, 11:09 AM
Wow! I was very tired when I wrote that. What a pitty party!:eek:
Well, I guess we are all entitled to one now and then.:p

LynetteG,
Hun, I'm thinking about you. Tomorrow's your big day. I wish you the best. You'll be straight and tall in no time. ((((HUGS))))

allycat
03-31-2010, 01:17 PM
rohrer01,
Do not ever apologize for having a "pity party" here. This is your soft place to fall and I promise, we've all had our own party. In fact, I've had quite a few myself and I haven't been run off. This is a group of people that love and accept. You can vent anytime.

I'm so sorry you're dealing with so many challenges right now. I'm sad to say I don't have any great words of wisdom or any answers for you, but I do have big, uneven shoulders to lean and cry on. Sometimes it seems that when it rains, it pours, doesn't it? You are a strong woman and it sounds like you have an amazing husband. All I know to say is keep the faith and continue to be strong even when you don't feel like you can.

I have a memory foam mattress topper on my bed, and it seemed to help for about a year and a half. Now, not so much. The most comfortable place I've found to sleep is on the sofa. It has a bit of a curve to the shape, not as much as a "C" but a little less. I'm able to position myself on my right side with a couple of pillows under my head, neck and shoulders (to give me a bit of elevation) and one between my knees. Having the pillows behind me makes it possible forme to somewhat wedge myself into the space where the back meets the seat and have the back support. Sounds crazy but it works better than my bed. My husband says he's lonely in our king sized bed but he wants me to be comfortable and get some good rest so he manages.

I hope some of this is helpful for you or anybody else that reads it. We're all here to support one another and for that, I'm so grateful!

flerc
03-31-2010, 02:54 PM
rohrer01, in fact I have told about that before, itís around the same idea I have posted here http://www.scoliosis.org/forum/showthread.php?p=95118#post95118 and I donít know if Iím being clear enough.
Of course Iím interested in knowing if that idea could work or not, so I could help my daughter to reduce degrees, but I understand you and Iím sure that itís what I would do if I would have your problem.
As I know so few about braces, maybe that it could have not any sense, but I donít believe that, I think that it should works.
Itís not an original idea, itís belongs to Cotrel who created the Edf method over 40 years ago. Sorry I could not found any page in English http://www.tesisenxarxa.net/TESIS_UB/AVAILABLE/TDX-0609104-113152//TESISILVIA.pdf.
A mother told me that Cotrelís Machine reduced from 30į to 15į the curve of her daughter in an hour, and then she was using a rigid brace keeping that stretch. I donít know what could happen then, but without any doubt, so many degrees can be reduced and I think, that not only with a machine.
Maybe I neither donít know enough about surgery, but I think is logic that you try to be sure if it could vanish the pain and I think that surgery could works for that, only because it stretch the column and keep that stretch. If curve is the source of pain, a reduction of the curve would implies a reduction of the pain. So a right way to be sure if it could works, is doing the same as surgery do.
I think that rigid braces should keep the stretch, but if it is so difficult to use to a child, what could be in the adulthood. SpineCor did not exist in the Cotrel age, so I could not be sure if it could works or not. If it could, why this proof could not works? I could not imagine, but maybe because my great ignorance about medicine, I donít know.
Of course is only an idea, I really want to help you and I hope Iím not only increasing your confusion.

I believe you would find the best for you.

Fer

LindaRacine
03-31-2010, 10:23 PM
I could no more sleep on a firm mattress than I could sleep on a bed of nails. You might want to try a memory foam mattress topper. They're very inexpensive on overstock.com.

LindaRacine
03-31-2010, 10:26 PM
rohrer01, in fact I have told about that before, itís around the same idea I have posted here http://www.scoliosis.org/forum/showthread.php?p=95118#post95118 and I donít know if Iím being clear enough.
Of course Iím interested in knowing if that idea could work or not, so I could help my daughter to reduce degrees, but I understand you and Iím sure that itís what I would do if I would have your problem.
As I know so few about braces, maybe that it could have not any sense, but I donít believe that, I think that it should works.
Itís not an original idea, itís belongs to Cotrel who created the Edf method over 40 years ago. Sorry I could not found any page in English http://www.tesisenxarxa.net/TESIS_UB/AVAILABLE/TDX-0609104-113152//TESISILVIA.pdf.
A mother told me that Cotrelís Machine reduced from 30į to 15į the curve of her daughter in an hour, and then she was using a rigid brace keeping that stretch. I donít know what could happen then, but without any doubt, so many degrees can be reduced and I think, that not only with a machine.
Maybe I neither donít know enough about surgery, but I think is logic that you try to be sure if it could vanish the pain and I think that surgery could works for that, only because it stretch the column and keep that stretch. If curve is the source of pain, a reduction of the curve would implies a reduction of the pain. So a right way to be sure if it could works, is doing the same as surgery do.
I think that rigid braces should keep the stretch, but if it is so difficult to use to a child, what could be in the adulthood. SpineCor did not exist in the Cotrel age, so I could not be sure if it could works or not. If it could, why this proof could not works? I could not imagine, but maybe because my great ignorance about medicine, I donít know.
Of course is only an idea, I really want to help you and I hope Iím not only increasing your confusion.

I believe you would find the best for you.

Fer
There has to be a reason why nothing has been published on this technique since 1978.

rohrer01
04-01-2010, 01:06 AM
Wow! So many responses. Thank you all so much. I didn't really expect any. I am very sad about the baby thing, though. I think I need to quit dwelling on it and be very thankful that I have been blessed with three beautiful children in my younger years when my spine could tolerate it much easier.

My big fish to fry right now is pain control so that I can get on with my life without pills and patches. I do have a two inch memory foam mattress topper. I think I will take your suggestion, Linda, about looking on overstock.com. Otherwise, surprizingly enough, Wal-Mart is selling actual memory foam mattresses. I doubt the quality could be very good and at $245 I don't know if I want to take the chance. I don't know who ever came up with the idea that a "hard" mattress was good for the back. I can tell you one thing for sure, they didn't suffer from scoliosis! :rolleyes: I try all kinds of sleeping positions. It seems as if I lay one way it makes an area hurt. So I change to another position and a different area hurts. It reminds me of the gopher bopping game you see at Chuck-E-Cheezes. :eek: I need SOFT, SOFT, SOFT!!! It makes me feel really sorry for these really frail old people.

Flerc, if you are suggesting a brace for adults, I don't think they do that. When I was a teenager, they told me that my curve was too high up on the spine to brace. They couldn't make one to help me. If, however, 25 years later they have come up with one that would fit, I would wear it in a heartbeat if it gave me pain relief! I wouldn't care one bit if I were metal and plaster from top to bottom if it would help without the use of meds. My GP actually asked me if I would be willing to wear one. Who knows, maybe they are reconsidering it for pain management? I haven't heard of it, but it is one thing I haven't tried.

Allycat, thank you for listening to my pitty-party. Big, uneven shoulders are the best ones to cry on. I have a friend that has it much worse. That's why I feel guilty. She is about 50 years old and is dying from complications from her scoliosis. She led a bad lifestyle, but I can't sit in judgement of her. She got pregnant with a very much wanted baby when she was young and her doctors made her abort by telling her she and the baby would die if she didn't. Who's to say? She turned to drinking heavily and smoking, which is the worst thing she could have done. She has severe asthma and a 90+ curve. She now has COPD and they have given her only a few months to live if she doesn't quit smoking. She still smokes. Her husband has stood by her all these years, too. She is probably one of the sweetest people I have met and has had other much more challenging things in her life than I have. I have so much to be thankful for. Even knowing such a person as her has enriched my life and changed my outlook on things for sure. The general population, I truly believe, does not understand the impact of scoliosis on people's lives. I think it helps me to be more empathetic to other people. Even though they look at me and I "look" normal because I have a balanced spine, my daily struggles make me thankful and more willing to be compassionate to others. You, too, are a very sweet woman and also must have a very excellent husband to be able to sleep apart so you can get rest. My husband has offered that for me, too. The men in our lives are real troopers. I think of what my dear hubby goes through just for me. In fact, when we were dating I showed him my x-rays to try to "scare" him off. How weird is that? He swore he would take care of me, and that he does! By the way, my name is Becky, too. ;)

To all of you who responded, and to those of you who took the time to read this post (even if you didn't respond), thank you. My day has been brightened and I feel much better just knowing that people care. You all take care and have a good evening. Maybe it will be my turn to lend shoulders (on a crooked post) to cry on next time. :)
((((HUGS))))

foofer
04-01-2010, 11:23 AM
Both Becky's,

Thanks for posting, both of you... Wonderful to witness someone in need and then someone with the exact right words to respond. And each named Becky!

Some days are just heinous, especially after a bad night's sleep. Then the mind machine gets very dicey, doesn't it? I hope today will be better, and I will place you in my thoughts for the day. So know that during this day, you are going to be bombarded with good wishes and prayers....

The mattress thing:
I always loved a supersoft mattress with a 3 inch memory foam from Overstock (from pre-Forum days, woo woo) and then feather bed over that. About a year ago I got major insomnia and my usual even temper was highly challenged. For some reason, one day I took off all the fluff and just slept on the mattress which is pretty firm. Now I am a firm mattress person. Don't know why the change, but I am not questioning.

I also like to sleep on the couch sometimes. I have an old leather beater in the living room that I reserve for the real sleepless nights. It's faded and scratched, but still firm, and the leather is sort of coldish. I sleep on my side, pushing my spine into the back of the couch. I think it slightly stretches the contracted muscles around my swayback.

So onward ever onward to all,
Amy

flerc
04-01-2010, 02:02 PM
There has to be a reason why nothing has been published on this technique since 1978.

Maybe that braces in those days were so different.. Spincore did not exist. Surely some muscular treatment was needed. Nothing exists in those days.
I think that surely Cotrel could find the best combination today. The surgeon told me that he was a genious. When I told him my idea of combine Edf with Spinecore, he told me that he had never heard something like that, but he could not say me that it cannot works.
Anyway my suggestion to rorher01 is not to reduce degrees in a permanent way (who knows?) but to be sure if the curve is the cause of pain. Do you think that it cannot works for that? I could not imagine why.

jrnyc
04-01-2010, 02:10 PM
hey rohr
i have been going to a pain doctor..the same one...brilliant russian guy in nyc who is pain and neurology both...also a little psychiatry thrown in! seriously, guy is brilliant..very serious & determined...
i consider those med dispenser things that they put under the skin way more radical than what i have had done...and besides botox for upper back...i have had...for the lumbar... (where botox didnt work for me) epidurals, facet blocks, sacroiliac injections, nerve ablation, and a few other procedures i've forgotten...the nerve ablation worked somewhat, sacroiliac worked best..but all are quite temporary..which is probably the reason alot of folks on forum end up opting for the surgery after months or years of pain management treatment....i am waiting for minimal invasive technique for lumbar to come to nyc to someone who TAKES my insurance (the doc in CA doesnt)...i'd try injections of some kind before i let someone implant something in me, even if only just under the skin!! that is just my own opinion and experience, though...you may feel differently about it...

i have slept on soft mattresses for years and years, after trying the "good" firm kind...they were like torture, just as linda said....i used to have a terrific foam rubber mattress as a child...have never found anything as good since (otherwise known as "they dont make 'em like they used to" :))..right now i have a "pillow top" mattress, but am about to order a foam top thing from overstock.com...think someone on here said they cost around $150...

there are several things that work for kids and adolescents, i think, but not for adults! and others that actually work for no one...

best of luck
jess

flerc
04-01-2010, 05:42 PM
Flerc, if you are suggesting a brace for adults, I don't think they do that. When I was a teenager, they told me that my curve was too high up on the spine to brace. They couldn't make one to help me. If, however, 25 years later they have come up with one that would fit, I would wear it in a heartbeat if it gave me pain relief! I wouldn't care one bit if I were metal and plaster from top to bottom if it would help without the use of meds. My GP actually asked me if I would be willing to wear one. Who knows, maybe they are reconsidering it for pain management? I haven't heard of it, but it is one thing I haven't tried.


In the beginning of Edf method, the grate stretch was reached in a soft way, during about two weeks with the Cotrel machine with neurology doctors controlling the process . Before the curve could be restablish again, a gypsum brace was made (as it could be seen in the photos) keeping the trunk in the posture reached, so I don't think a high up curve could be a matter, the trunk should has no way to be deformed again. After some days, a traditional brace was used keeping that reduction too.
I don't know what doctors said to you about adult braces, but I think that none brace in the world used without the previous spine straight could help to do that proof. If you have 46ļ and they put to you the best brace without a previous stretch, you'll continue with 46ļ. To what kind of conclusion could you arrive if pain remains? I could not imagine.
But if you could reach 23ļ or less and and just a brace is done keeping that reduction, you could see if a reduction of curve implies a reduction of pain or not. And as I know, nobody could say that some reduction could not remains when finally the brace is get off.

I hope I'm being clear enough and the best for you.

tonibunny
04-01-2010, 06:02 PM
Hi, the EDF plaster casts used for Infantile Idiopathic Scoliosis (as promoted by Min Mehta) are applied on a frame as in these pictures.

Back in the early 1980s I wore these casts until I had my first surgery at the age of ten. I wasn't sedated for the application of the casts and remember the process well. The Royal National Orthopaedic Hospital in Stanmore, England (where Min Mehta worked) still casts children on the same frame they used for me. I had a very high thoracic curve and would wear also Milwaukee braces (the girdle of which was moulded using casts applied using the EDF technique) during the summer months.

The Milwaukee braces and plaster casts are generally seen as too difficult a protocol for school-age children to follow today, but I do believe they helped stop my curves from progressing fast. Back in the early 1980s there were no other options for children with Infantile Scoliosis so the goal was to keep the curves as stable as possible and then fuse at the age of ten or eleven. I started out with a 62/40 double curve at the age of 6 months; by the time I had my first surgery my thoracic curve was "only" 76 degrees, though the rotation had increased significantly (29 degrees on the Scoliometer).

Yves Cotrel is a very famous scoliosis surgeon in Europe, he co-invented the Cotrel-Dubousset spinal instrumentation and continues to fund research into scoliosis through the Cotrel Foundation.

LindaRacine
04-01-2010, 10:40 PM
Hi, the EDF plaster casts used for Infantile Idiopathic Scoliosis (as promoted by Min Mehta) are applied on a frame as in these pictures.

Back in the early 1980s I wore these casts until I had my first surgery at the age of ten. I wasn't sedated for the application of the casts and remember the process well. The Royal National Orthopaedic Hospital in Stanmore, England (where Min Mehta worked) still casts children on the same frame they used for me. I had a very high thoracic curve and would wear also Milwaukee braces (the girdle of which was moulded using casts applied using the EDF technique) during the summer months.

The Milwaukee braces and plaster casts are generally seen as too difficult a protocol for school-age children to follow today, but I do believe they helped stop my curves from progressing fast. Back in the early 1980s there were no other options for children with Infantile Scoliosis so the goal was to keep the curves as stable as possible and then fuse at the age of ten or eleven. I started out with a 62/40 double curve at the age of 6 months; by the time I had my first surgery my thoracic curve was "only" 76 degrees, though the rotation had increased significantly (29 degrees on the Scoliometer).

Yves Cotrel is a very famous scoliosis surgeon in Europe, he co-invented the Cotrel-Dubousset spinal instrumentation and continues to fund research into scoliosis through the Cotrel Foundation.
It's a different Cotrel.

rohrer01
04-01-2010, 11:09 PM
Thank you all so much for the information on bracing. If it is something that can be done that is available in my area AND my insurance will pay for, I will try it. It would make sense that if they could cause even a temporary reduction in the curve to see if there is also a reduction in pain. If there were a relation found there, then proceeding with the surgery would make more sense. Am I following you, flerc? I'll have to wait to see what they have available. I hope they are helping your daughter.

I will also have the issue of weaning off the meds, which in and of itself causes pain. It's just the nature of narcotic meds. That's one of the reasons I hate them so much and put off using them long term.

flerc
04-02-2010, 12:57 AM
rohrer01, it's great for me to know that you'll try to follow that idea. I agree that meds are not a good solution. I hope you could do it and I really wish you'll note a significant reduction of your pain. And I hope even more, I wish that when brace is take off, some reduction remains! Why not?
I believe that neuromuscular and balance System, muscles synchronization, ligaments, .. all would be adapted to the new and best posture and that decompression will leads to a significant regeneration of the discs, so doing too the right exercises, the vicious cycle would be transformed in a virtuous cycle.
Sorely Spinecore does not exist in Argentina and surely my adolescent daughter will refuse to use a rigid brace and it would be too much expensive for me to get one, so I should to be reasonable sure that it could works to reduces some degrees of her curve, but I don't know if Spinecore could be used. It would be great if you could asks for that.

I really hope the best for you and please tell me the news

Fer

tonibunny
04-02-2010, 05:57 AM
It's a different Cotrel.

Wow! Is it? What's the name of the other Cotrel? A friend of mine had CD instrumentation and I had the EDF casts (the table was called a Risser-Cotrel table) and our surgeon at Stanmore said they were both named after the same guy. If there's two top scoliosis doctors called Cotrel then it's not surprising if they got confused though.

ETA According to this article, Yves Cotrel did propose the EDF technique:
http://www.ejbjs.org/cgi/reprint/59/4/504.pdf

And according to this one, he co-invented the CD rods:
http://journals.lww.com/orthopaedicnursing/Abstract/1988/01000/Cotrel_Dubousset_Instrumentation.3.aspx

And here here's some info about the Cotrel Foundation, with a pic of Yves Cotrel (and Jean Dubousset) on the front page:
http://www.cotrelspinalresearchfoundation.com/Welcome.html


It sounds like the same guy to me, unless there are two Yves Cotrels?

jrnyc
04-02-2010, 07:53 AM
i could not function without pain meds...so while some are knocking them, others need them to ...survive.....they serve a temporary purpose...though i know some who use them for long term....

rohr...there are some braces that cost $5000 and more...hope they can help you...
if a brace reduces your pain...great...but any permanent reduction on a grown adult...i...dont ...think...soooooo

jess

rohrer01
04-02-2010, 08:29 AM
At this stage in the game, I too, can NOT function without pain meds. To be honest, I don't think I could even walk at this point. I have had a couple of scares WITH the medications. I almost fell flat on my face yesterday just getting up from a nap because my right leg decided it wasn't going to work. It wasn't numb or painful, just not coordinated. Thankfully we have a 4 poster bed and I caught myself. The other issue is breathing becomes increasingly painful. That CAN'T be healthy, even though I get through it. I had that happen to me last night. I had a part in a little skit in church where all I had to do was sit. All of a sudden, WHAM! My intercostal muscles decided to cramp and it almost brought tears to my eyes. I didn't want to be a spectacle in front of about 60 + people. My husband said he didn't notice. But it's that UNPREDICTABLE.

To be honest, flerc, I don't think they even offer braces here where I live for adults. I hear that they are extremely uncomfortable and that's why they have compliance issues with adolescents. I will ask, though. It is spinecore, right? I would not expect any permanent reduction in the curve, but it would be nice to see if there is a relation between curve and pain. Although, when you think about it. With surgery, you get the straightening from the inside, meaning all the forces used are directed at the spine itself. With any kind of a brace, you are applying all the forces externally. Logically, you would think that this could cause soft tissue compression issues that are not good. Sometimes soft tissue damage can be permanent. I think of older people who get bed sores. I'm sure similar things can happen when strong forces are applied to any area of the body externally. So we will see. I will ask, but I try to look at all sides of an issue. If it is available, I will try it at least temporarily. If it CAUSES pain or compression spots (not even sores), then I will discontinue. You really have to be careful that blood flow to soft tissue is maintained.

A question to flerc. Why is your daughter non-compliant? If you and her mother live separately, then it would be best for your daughter if you and her mother could sit down and come up with a plan together that you can all live with. Ultimately, your daughter is going to be the one to live with the aftermath of the decisions made to manage her disease. I wish her the best.

Again, thank you all for your input and advice.
;)

rohrer01
04-02-2010, 08:38 AM
I also have a friend who needed spine surgery, BADLY! She opted for pain meds, then it came to the point where her spine was sooooo bad that there was no longer a surgical option. She lives with/for her meds. It's so sad. I have seen her go from a giddy vibrant person, to a literal recluse that sits in a dark, and I mean DARK, room all day. I do NOT want that to happen to me. I will NOT let that happen to me. I know the pain meds affect the brain, and they affect each person differently. Not a good future to look forward to. I love her so much and it just kills me to see her this way. I wish she would have at least tried the surgery while she could. Then, if it didn't work, there would be more justification to stay on the meds.

flerc
04-02-2010, 12:48 PM
Of course the possibility of permanent reduction of some degrees could not be the objective. The only one should be to make the proof of reduction or not of pain with reduction of the curve. In fact I believe that when growth is absolutely finished as is supposed to be in your case, a perfect muscular and neuromuscular treatment should to be performed to keep some significant reduction (maybe you could find it, why not?) and probably (I'm not sure of that) other absolutely different kind of treatment should to be performed too, so I know it would be so difficult that it could be reached, but probably a few degrees reduction could remains and encourage you to other kind of solution. I agree that probabilities are against that possibility and as I said is only a wish, but when we talk about probabilities we are talking about a lack of certainty.
Of course it would only could be "the icing on the cake".
I'll continue next.

flerc
04-02-2010, 02:39 PM
With surgery, you get the straightening from the inside, meaning all the forces used are directed at the spine itself. With any kind of a brace, you are applying all the forces externally.


Yess!! I absolutely agree with that point. In fact that's the reason because I believe for so often fails of brace during growth. It seems so obvious for me that I could not believe that doctors don't realize that elemental fact!
In fact, surgery apply an external force, directed to the spine itself, but the source of that force is external. I know there are two other forms of external forces directed at the spine itself (maybe no so direct as surgery at all). In fact I know about another form too, but I'm not sure if it could be applied in human beings.



Logically, you would think that this could cause soft tissue compression issues that are not good. Sometimes soft tissue damage can be permanent. I think of older people who get bed sores. I'm sure similar things can happen when strong forces are applied to any area of the body externally. So we will see. I will ask, but I try to look at all sides of an issue. If it is available, I will try it at least temporarily. If it CAUSES pain or compression spots (not even sores), then I will discontinue. You really have to be careful that blood flow to soft tissue is maintained.


Again I agree with you. A proof should not to be harmful.
But brace would not be used to reach that straightening, it would only be used to keep that and I suppose it would not to be too much force required for that purpose, but maybe I wrong, don't know.
Internal or external forces could be used to reach that straight and I don't believe that it could imply that kind of damages. Even the highest external force that could be imagine in a conservative method as Fed Machine is, is being used now in adults.
I'll continuous next

flerc
04-02-2010, 03:06 PM
To be honest, flerc, I don't think they even offer braces here where I live for adults. I hear that they are extremely uncomfortable and that's why they have compliance issues with adolescents. I will ask, though. It is spinecore, right?


AS I said to you, I think that only SpineCor could be used by an adult, but as I also said, I have not any idea about braces, I could say that I have never seen one.
I hope that SpineCor could be useful and if it's not, surely I could not perform that plan with my daughter, but I really hope that you could get someone that could not be so uncomfortable for you at least to be used for some days.
I'll cont..

dailystrength
04-02-2010, 06:18 PM
Hi Rohrer,
Thanks for sharing your deepest thoughts and concerns. That makes the rest of us not feel so alone. I have a 34 T and 49 L (with follow up in a month - whoohoo!), and I have been able to manage my severe pain and get off meds. I did get a mattress topper http://www.amazon.com/gp/product/B000A8BU1K/ref=oss_product after looking at reviews. I have been pleased with it. I also got a memory pillow. A recent item I have really benefited from is the book Curves, Twists, and Bends http://www.amazon.com/gp/product/1848190255/ref=oss_product. Her stretches really do help and the author is one who KNOWS. A third VERY helpful item I got recently is the balance ball chair: http://www.amazon.com/gp/product/B00210CG3Q/ref=oss_product. This has made a big difference. I can feel my spine coming into alignment, unless it's my imagination. I will find out in a few weeks. Thanks again for sharing. I relate about the baby thing. Having never had children, I deeply regret that at this point I do not want to put myself through that. At 44 it's nearly too late anyway, and I'm not even married - ha ha (almost, last year, but... well, I will refrain from commenting about him). Anyway, thanks for sharing your burdens. Christina

flerc
04-03-2010, 12:02 AM
A question to flerc. Why is your daughter non-compliant? If you and her mother live separately, then it would be best for your daughter if you and her mother could sit down and come up with a plan together that you can all live with. Ultimately, your daughter is going to be the one to live with the aftermath of the decisions made to manage her disease. I wish her the best.


In fact we all live together with my other son too but with my wife, we have the most opposite concepts, strategies, thoughts.. that could exists about problem solving, and health matters is not the exception.. In fact, we are so different in our points of view, we could say that it’s a mystery for us that we remains together.
Since this problem appears in our life, we had terrific discussions, we have never seen so close the divorce.
Discussions seems to never end, but since lasts weeks I could say that we reached a balance. Both of us think that is very important her emotional state. We believe that she must to feel happiness, a great lack of worries and to live a good teenage. I saw her how she twist when she is worry or she feel bad for something.
It was so difficult to her to leave dance 2 years ago. She loved Arabic dance, jazz dance and hip hop and she did not forget it. I don't want to imagine what could happens if we propose her to use a rigid brace. When she was 11 or 12 years old it surely would be so different..
But she probably not refuse to wear the Spinecore. I showed her some videos and I think that if she see her Gpr PT and also myself sure enough that it could reduce degrees, she would accept to wear it.
I'm not sure if I'm answering your question.


I wish her the best

Thanks, I’m sure about tor feeling. I think this is the best forum I have ever known.

jrnyc
04-03-2010, 11:07 AM
i am surprised about the ball chair thing..i cant handle stiting on a ball...and back before the pain got so bad, i told my trainer in the gym that i couldnt exercise on one either...and i tried! the pain of my spine shifting was waaay too much..but i am at 40 thoracic and 61 lumbar..new measurements to be taken april 12th at surgeon's office..so maybe higher curves hurt on those balls more...

i am very surprised anyone with scoli can handle that thing...but maybe it is my herniated discs or spinal stenosis that makes it so painful, too...plus the listhisis of L3 collapsing onto L4 and L4 onto L5 :(

jess

foofer
04-03-2010, 11:46 AM
A little warning about the exercise balls commonly used in gyms and exercise classes....

For years, I used one to sit on while I worked. I loved it, as it moved around constantly so it seemed to prevent lumbar muscles from tightening up. From time to time, they would slowly deflate and I would have to replace them...I work with pins all the time, and while I never found one, the way you might find a nail in a road tire after a flat, I would assume that was the cause. A couple of years ago on the job, I was working away and BAMM! The thing absolutely exploded into two pieces, like orange peel pieces, and I hit the ground like a chair had been pulled out from under me. Felt it in the neck, had to go home, out of work for a few days, back to the back doctor....have neck degeneration that it aggravated but nothing more devastating. The ortho doc said he had seen several of such injuries...

It has not been the same since- definitely have neck issues more than I once did.

I think the ball chair with frame would not be as dangerous, as the ball is embedded in a framework. But anyone out there exercising with one, please reconsider, or at least be sure that you use anti-burst balls, and then don't use those either, in my painful opinion.

Amy

Karen Ocker
04-03-2010, 12:10 PM
To everyone who is trying to manage large curves using "alternatives".

There can come a time when breathing capacity is so reduced that anesthesia becomes dangerous/impossible. The operation cannot be done without anesthesia. We are talking in the 80+ deg range but impairment begins before that. It doesn't happen overnight but sneaks up. Those with triple curves, like myself, lose it faster.

Before my surgery, I was contacted by a person with a large curve who told me not to delay because it was too late for her. She needed oxygen 27/7eek: She said she waited too long.

jrnyc
04-03-2010, 12:36 PM
hmmmm...i knew about the damage to heart, lungs etc with largte thoracic curves...mine was only at 40 last october...should get new measurement april 12th at nyc scoli surgeon...but wonder what larger lumbars mess up...i mean, i know aobut the PAIN!! wonder if it messes up other stuff...? i feel like i have to pee all the time lately...never had kids, so it couldnt be that...could be aging, i guess...or...i wonder if my 61 degree lumbar (as of oct. 09) is starting to play a part...?

hmmm wonder what surgeon will have to say...

jess

dailystrength
04-03-2010, 08:17 PM
Hey Jess, I can relate- my larger curve is my lumbar curve - at 49 last year.- I will go the first week of May for new x-rays. I do wonder if my innards (like intestines) get squished. I don't have the frequent peeing issue, but if I've got to do something else, I have to run sometimes! Probably toning up the whole area - the Kegel thing - would help with that.
I'm sorry you can't sit on a ball. I have degeneration but don't know any details about it. With the ball chair, it is stable, and I fix myself in that one position. In fact, I am careful to not bend my back but stay in that position, even after I get up, while moving around. I am bending with my legs and not my back. Today I was cleaning up around the house, and I have not had pain, though I am constantly aware of how I am moving and breathing. Speaking of breathing, I am finding that it is so important to breathe into the concave side, to get some life back to the atrophied muscles.

And Amy, thanks for that warning! I will stop bouncing!

dailystrength
04-03-2010, 08:19 PM
There can come a time when breathing capacity is so reduced that anesthesia becomes dangerous/impossible. The operation cannot be done without anesthesia. We are talking in the 80+ deg range but impairment begins before that. It doesn't happen overnight but sneaks up. Those with triple curves, like myself, lose it faster.

Before my surgery, I was contacted by a person with a large curve who told me not to delay because it was too late for her. She needed oxygen 27/7eek: She said she waited too long.

Thank you for this reminder, Karen. Is there a test a Dr can do for breathing capacity, do you know?

dailystrength
04-03-2010, 08:44 PM
Both of us think that is very important her emotional state. We believe that she must to feel happiness, a great lack of worries and to live a good teenage. I saw her how she twist when she is worry or she feel bad for something.

Your care for your daughter is evident. Your observation about the connection between her emotional state and her movement is very astute, also, I think. We are all one piece. :)