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Kay1974
10-05-2016, 01:11 PM
Hello All,

Well let's see I'm new here on this site, thought it may be beneficial for Scoliosis related talk. I live in Louisiana. I have an 11 year old daughter who thankfully shows no signs of this twisted spine like I have.

My short story of scoliosis. At 11 years old, I was diagnosed with this during PE at my middle school. I was treated by an orthopedic Dr. With the Boston Brace. I hated that brace as I'm sure others did too. Anyway, I had a great team of Drs on my case and got to go to the children's hospital of New Orleans to see Dr. King who from what I hear is the best in the state. Fast forward to today, I'm 42 and am feeling more pain that's different from the muscular scoliosis pain that I have always known. Now the pain I believe is coming from my awful lumbar curve which has started showing degenerative changes in the last year according to my Dr.

My scoliosis is atypical, meaning my curves are not like most. I have a left thoracic curve at 30 degrees and Right lumbar at 42. My Ortho Dr. Did say that my curve has not changed much at all in the last 15 years so it stable.

I have always had it in my heart that surgery wasn't an option, but I'm not so sure now and what and if this pain will break me from my strong mindedness about it.

I am seein a therapist next week to learn about Schroth and to see if it can relieve my chronic low back pain. I'm also Happy to gain knowledge on who to see for my spine. Dr. king only treats kids and I'm afraid I'm too old now but care about my health very much and would drive 10 hours to Dallas or Oklahoma to see someone who is considered great.

I appreciate all the info I hope to learn as I'm facing this again after living many years with it on the back burner. I've always tried to stay strong about this and be positive but sometimes it gets the best of me, ya know?

Thank you:)

My Spine....1895
30 left thoracic, 42 right lumbar

jackieg412
10-05-2016, 01:50 PM
Hi Kay and welcome.
You will see that many of the members have had long journeys with scoliosis.
I only have a little comment on your X-Ray. If you look through some others posted you will see the many with more significant curves.
My other comment would be that you are young yet. And treating the scoliosis that you have may help take the damaging pressure off of your lower lumbar joints. And thus avoid at this time the limiting fusion to the pelvis. That would allow you to maintain more flexibility. It's just a comment.
Others here may know of doctors in you area.
I am near Chicago
But welcome and keep reading .Jackie

Kay1974
10-05-2016, 07:39 PM
Thank you:) I'm just not sure about a lot which is wh I guess I'm here.

Living with chronic pain is not gonna be easy. I know I'm not at a point where I can't function but I feel like this is only going to get worse and accepting that is hard.

Thanks for listening.




Hi Kay and welcome.
You will see that many of the members have had long journeys with scoliosis.
I only have a little comment on your X-Ray. If you look through some others posted you will see the many with more significant curves.
My other comment would be that you are young yet. And treating the scoliosis that you have may help take the damaging pressure off of your lower lumbar joints. And thus avoid at this time the limiting fusion to the pelvis. That would allow you to maintain more flexibility. It's just a comment.
Others here may know of doctors in you area.
I am near Chicago
But welcome and keep reading .Jackie

LindaRacine
10-05-2016, 08:49 PM
Hi Kay...

Welcome to the group.

I think it's very wise to try non-surgical options to see if you can get out of pain. Beware of Schroth. I think many practitioners try to suck patients in to expensive contracts. If you find that to be the case, you might want to try to find someone in your area who uses a yoga or Pilates for scoliosis program approach.

Your curve actually looks a little larger than 42 degrees to me, but I can't be sure. It looks like L5 is relatively level, so you might be able to avoid a fusion to the sacrum (at least for now), if you have to have surgery.

I had a scoliosis fusion from T4-L3 when I was 42, and an extension down to the sacrum when I was 61. While I don't have any lower back pain any more, I really dislike the lack of flexibility. I wish that I had tried harder to avoid the original fusion.

Regards,
Linda

Kay1974
10-05-2016, 09:14 PM
Hi Linda.

Thank you for the welcome. I will let you know how the Schroth stuff pans out. I actually found her from research and am hoping and praying it helps my discomfort. I do some yoga but not very sure what I can and should be doing at this point based off my curve and pain. I did try dry needling and it did not help at all.

I'm glad to hear that you aren't in pain and that surgery was a success for you. I don't know what my future holds as I've always been told the goal was to avoid surgery because of the high risks involved in adults.

My goal is to raise my daughter up and get to that point. My husband is supportive too so my home life is great. For the most part I've lived a pretty great life so far, but at times the unknown gets to me when I feel the lower back pain.

LindaRacine
10-05-2016, 11:15 PM
You might want to check out Yoga for Scoliosis:

http://www.yogaforscoliosis.com/

kennedy
10-06-2016, 02:52 AM
welcome kay

Kay1974
10-06-2016, 08:49 AM
Yes I hope to learn more yoga and stretches that could benefit me. Thank you.

mistybowe
10-06-2016, 02:07 PM
Hello All,

Well let's see I'm new here on this site, thought it may be beneficial for Scoliosis related talk. I live in Louisiana. I have an 11 year old daughter who thankfully shows no signs of this twisted spine like I have.

My short story of scoliosis. At 11 years old, I was diagnosed with this during PE at my middle school. I was treated by an orthopedic Dr. With the Boston Brace. I hated that brace as I'm sure others did too. Anyway, I had a great team of Drs on my case and got to go to the children's hospital of New Orleans to see Dr. King who from what I hear is the best in the state. Fast forward to today, I'm 42 and am feeling more pain that's different from the muscular scoliosis pain that I have always known. Now the pain I believe is coming from my awful lumbar curve which has started showing degenerative changes in the last year according to my Dr.

My scoliosis is atypical, meaning my curves are not like most. I have a left thoracic curve at 30 degrees and Right lumbar at 42. My Ortho Dr. Did say that my curve has not changed much at all in the last 15 years so it stable.

I have always had it in my heart that surgery wasn't an option, but I'm not so sure now and what and if this pain will break me from my strong mindedness about it.

I am seein a therapist next week to learn about Schroth and to see if it can relieve my chronic low back pain. I'm also Happy to gain knowledge on who to see for my spine. Dr. king only treats kids and I'm afraid I'm too old now but care about my health very much and would drive 10 hours to Dallas or Oklahoma to see someone who is considered great.

I appreciate all the info I hope to learn as I'm facing this again after living many years with it on the back burner. I've always tried to stay strong about this and be positive but sometimes it gets the best of me, ya know?

Thank you:)

My Spine....1895
30 left thoracic, 42 right lumbar

Welcome Kay!

We are the same age and your story sounds much like mine. I too wore a brace as a young teen-ager and then went on with my life, married, had 4 kids.... you get the idea. I didn't notice any additional back pain until my mid 30's. I saw a few chiropractors, but that didn't help. I started running a lot, competed in a good amount of races and finally decided to see a spine specialist when I was 38. At this point, my lumbar curve had progressed to 48 degrees but he didn't recommend doing anything different so I just kept on. It was harder and harder for me to keep up with my training so I began seeing a physical therapist to help while training for my 1/2 marathons and finally my full marathon. Fast forward to age 42 and the pain was now getting to be unbearable. I went back to see the surgeon and my once 'stable' curve had progressed to 55 degrees and it was time to do something about it. I had to quit running ASAP and very quickly start evaluating my options and interview surgeons.

Rather than put off the inevitable, I opted to take care of my back right away with the hope that I would recover more quickly if I did it now rather than wait until I am older. My surgery date was August 1, 2016 and I am happy to report that I am 9 weeks post op after a T6-L5 fusion and feeling wonderful. Though I can't run anymore, I have begun to think about my new life post surgery and it is different but that's okay. I am pain free and confident now that I have a stable spine that won't continue to deteriorate that I can enjoy my life and not worry about what's next.

This is a great place to be to talk to others like you and evaluate all of your options. While surgery was the best option for me, it may not be what's best for you. That will be for you and trusted surgeon to decide.

Best of luck to you and you can private message me anytime.

Misty

Kay1974
10-08-2016, 09:34 AM
That is great news Misty. Your story gives me hope. To hear your outcome and talk to someone who understands exactly what your going through brings tears to my eyes. I joined this site because I can't ignore my back any longer and what to learn more about it. Talking and communicating with fellow scoliosis folks does help. There are so many unknowns right now for me. It can be a little on the overwhelming side.

I have great family and wonderful friends who are very supportive of me although most don't understand the complicated mess of a large scoliosis curve and what it feels like. My husband and I have had talks recently and he definitely supports me wanting to start being proactive about my pain. He is going with me next week to travel 4 hours away to see this physical therapist who specializes and runs a scoliosis clinic.

I am facing the fact that I may have to have surgery one day. Many questions run through my mind. I am not getting any younger and I don't believe the chronic pain is going anywhere either but will only get more painful and debilitating. I saw in a different post about a book that Ed recommended. I may purchase that and check it out.

I live in Louisiana where I didn't see any orthopedics listed on any top 50 spine surgeons so that is discouraging but I too like many of you on here, would travel to see someone who is very qualified and trustworthy.

My local Baton Rouge Orthopedic Dr. did see me about a year ago for my back, and said yes, you have some degenerative changes happening especially in the Lumbar area at the L4-L5 site with some marginal osteophytes. I asked him about surgery and he said, you may or may not need it one day but not now as your pain isn't unbearable. I understand his conservative approach but it leaves me feeling scared of the unknown. Its obviously not getting batter and will continue this path. I do not have the trust either that many of you speak of needing to have because I would not want him being the one to do surgery on me when and if it gets to that point.

I'm sorry to keep rambling on but I am putting myself out there and don't want to be scared to discuss any longer and ignore it.

Today I am "walking" the Warrior Dash with my husband and wont be participating in any of the obstacles because I can't but I'm thankful to be taking a beautiful 3 mile walk through the course and clapping and cheering for the folks who can.

titaniumed
10-08-2016, 11:21 AM
Kay

Welcome, welcome, welcome

I see you worked for a Chiropractor. I used Chiro for well over 30 years with probably 15 different Chiropractors....I did manage to maintain and avoid surgery for many years till age 49. I also did a lot of hot water soaks followed immediately by long massages. (I actually miss my massages now) Don’t get hooked, that’s an expensive habit.

Its David Wolpert’s book. He did a good job on it.
http://www.scoliosis.org/shop/product/scoliosis-surgery-the-definitive-patients-reference-third-edition/

Whatever you do, do not let a “regular orthopedic” operate on you. Scoliosis surgeons are the only ones trained to balance our spines. Doing a level or two by a non scoli trained surgeon can present problems down the road....

Degeneration happens when we get older.....it’s what drove me into my surgeries.....I waited 34 years for scoliosis surgery waiting for technology, and watched the surgical evolution all these years. When they started using pedicle screws I did get excited. It was the next step forward....Sort of like the stem cell activity of today.

Eating well and staying active is a good idea. I get a kick out of Jack LaLanne. He once said. “Would you awaken your dog with a cup of coffee and a doughnut?”

Hmmm....Doughnut or dog food.....Poor Fido....

Ed

richardis
10-08-2016, 12:58 PM
Sort of like the stem cell activity of today.

Ed

Why is stem cell R&D so promising? When does that research comes into practice other than clinical trials? Are they already in use and approved by the FDA?

Pooka1
10-08-2016, 01:09 PM
I'm not sure I would characterize cell-based therapies as promising, at least for arthritis. I am not sure they have been studied at all for scoliosis but Ed can correct me.

Here is a short piece written by a horse vet that discussing the literature for humans in the hope it can also help horses. In the search for good studies to consider, they only found SIX total.

http://www.doctorramey.com/cellular-therapies-arthritis/


Anyway, the researchers found six trials. Four of those were trials that were included weren’t blinded, that it, people knew who was getting what. One was a prospective study, that is, people were entered into the trial in order to see what would happen (as opposed to looking back to see what did happen), and one was a case-control study involving 300 knees, where half got a cellular intervention. Three of the studies involved patients with osteoarthritis, where the joint cartilage was pretty much falling apart, and three involved patients with “focal cartilage defects,” that is, patients where the joint cartilage in one spot looked dicey, Of course, these are exactly the sort of things that we see in horses, too.

Anyway, after going to all of this trouble – finding studies, reading them, analyzing them – the authors really couldn’t draw any conclusions at all about how well the therapies worked: or even if they worked. That’s because the studies were all over the board in terms of what therapy was chosen, and what was done, and even what constituted a successful treatment outcome. When there were control groups – groups that didn’t receive the treatment, and who were then compared to those that did receive the treatment – both the treated and non-treated groups tended to improve. If you’re one of those folks that wants to put the best possible spin on things, in some (but not all) outcome measures, there were “modestly better” outcomes in those folks that were treated. But it’s hard to know what to say about that because overall, the quality of studies in the field was so bad.

titaniumed
10-09-2016, 10:42 AM
When they started using pedicle screws I did get excited. It was the next step forward....Sort of like the stem cell activity of today.


Not promising. Exiting...... Were not quite there yet as far as “promising” is concerned with the trials, but there seems to be a push in this direction......The biotech companies are constantly filing new patents. Not for scoliosis per say but just about everything else, which is important.....Regenerative medicine and gerontology.

Regenerating a disc is important because discs herniate and that can start the downhill slide with elder scolis. I might have never had my surgeries if my discs were not compromised....and it would have been nice to go in for a series of shots rather than highly invasive surgeries.

I started looking at this material when Susan had her spinal cord injury.....

Also with the push are doctors using these magic mixes without FDA clearance, so you its important to be vigilant......as with any new procedure.
its important to be vigilant......as with any new procedure.
its important to be vigilant......as with any new procedure.
its important to be vigilant......as with any new procedure.

I’m having problems with my mouse....(smiley face)

In the 1950’s Dr Harrington was considered crazy with his system. He was forced because he had to come up with something after seeing all the kids, the polios ending up in knots. This crazy system led to what we have now, which is a substantial improvement over casting without implants.

Visionaries need time and support....

Some links...

https://en.wikipedia.org/wiki/Human_embryonic_stem_cells_clinical_trials

https://en.wikipedia.org/wiki/BioTime

Ed

titaniumed
10-09-2016, 10:55 AM
https://en.wikipedia.org/wiki/Stem_cell#Key_research_events



Diseases and conditions where stem cell treatment is being investigated include:

Diabetes[65]
Rheumatoid arthritis[65]
Parkinson's disease[65]
Alzheimer's disease[65]
Osteoarthritis[65]
Stroke and traumatic brain injury repair[66]
Learning disability due to congenital disorder [67]
Spinal cord injury repair [68]
Heart infarction [69]
Anti-cancer treatments [70]
Baldness reversal[71]
Replace missing teeth [72]
Repair hearing [73]
Restore vision [74] and repair damage to the cornea[75]
Amyotrophic lateral sclerosis [76]
Crohn's disease [77]
Wound healing [78]
Male infertility due to absence of spermatogonial stem cells [79]


Ed

Kay1974
11-17-2016, 09:49 PM
I have scheduled an appt. to see a neurosurgeon for my low back pain and for my leg pain. I'm guessing it's not just going to clear up and go away, not with the big lumbar curve sitting above it all.

I really sympathize with so many of you on here that struggle with this spine condition. I have good days and bad days. Attitude is everything and I'm learning this more than ever now. Pain is not easy to embrace and live with daily.

This forum has been nice learning from and not feeling so alone out there with these problems.