Update on me and MULTI-TOPIC rambling

[rohrer01]

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]

Wow! I was very tired when I wrote that. What a pitty party!
Well, I guess we are all entitled to one now and then.

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]

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]

rohrer01, in fact I have told about that before, it’s around the same idea I have posted here http://www.scoliosis.org/forum/showt...5118#post95118 and I don’t know if I’m being clear enough.
Of course I’m interested in knowing if that idea could work or not, so I could help my daughter to reduce degrees, but I understand you and I’m sure that it’s 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 don’t believe that, I think that it should works.
It’s not an original idea, it’s 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...TESISILVIA.pdf.
A mother told me that Cotrel’s Machine reduced from 30° to 15° the curve of her daughter in an hour, and then she was using a rigid brace keeping that stretch. I don’t 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 don’t 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 don’t know.
Of course is only an idea, I really want to help you and I hope I’m not only increasing your confusion.

I believe you would find the best for you.

Fer

[LindaRacine]

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]

rohrer01, in fact I have told about that before, it’s around the same idea I have posted here http://www.scoliosis.org/forum/showt...5118#post95118 and I don’t know if I’m being clear enough.
Of course I’m interested in knowing if that idea could work or not, so I could help my daughter to reduce degrees, but I understand you and I’m sure that it’s 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 don’t believe that, I think that it should works.
It’s not an original idea, it’s 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...TESISILVIA.pdf.
A mother told me that Cotrel’s Machine reduced from 30° to 15° the curve of her daughter in an hour, and then she was using a rigid brace keeping that stretch. I don’t 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 don’t 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 don’t know.
Of course is only an idea, I really want to help you and I hope I’m 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]

Thank you!

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! 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. 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]

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]

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]

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]

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 46º and they put to you the best brace without a previous stretch, you'll continue with 46º. To what kind of conclusion could you arrive if pain remains? I could not imagine.
But if you could reach 23º 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]

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]

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]

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]

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