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SpineTime
06-26-2011, 05:27 PM
Hi Everyone,

This is my first post, but I've been coming here for months, reading and learning as much as I can. Many of you have already helped me and answered questions I had, and you didn't even know I was out there, so thank you! I also really love when people share pictures, BTW. It's been a bit of a roller coaster ride with my back, especially in the last couple years since I started going to a pain management doctor, and then in the last couple months since I saw my first spine surgeon and learned my curve is worse than I thought, and he recommended surgery. I also just finished reading the book Scoliosis Surgery, The Definitive Patient's Reference by David K. Wolpert, which I got because I saw several people here recommend it. It is a good book, and I'm sure I'll be referring back to it a lot.

I'm a 44-year-old woman, and I discovered my curve as a teenager, but I think I was 16 yrs old before I mentioned it to my family doctor. He said yes, I had mild scoliosis, but we'd just keep an eye on it. If it didn't get any worse by the time I was done growing, I'd be fine, there wouldn't be any treatment needed, and there wouldn't be any symptoms from it. (Oh, if only that had been true.) He didn't get an x-ray, so I don't know what the degree of the curve was then. And I don't know how we were going to "keep an eye on it" when we didn't know the size of the curve to begin with. I don't remember it even coming up again, and I saw him for years after that. I think he really just felt the curve was so small as to be a non-issue.

At about 20, I started going to a chiropractor for low back pain. He confirmed I had scoliosis, and I remember him showing me the x-ray. He said I had a thoracolumbar curve, and the Cobb angle was 22 degrees, and yes, that was considered a mild/small curve. I was glad to hear that, and had been told it wouldn't progress, so I didn't worry too much. He also measured my legs and said my right leg was a little bit shorter than the left. He gave me a heel lift to put in my right shoe to make my pelvis level. I hated that thing at first, but once I got used to it I really liked how it made me feel level. I still have the last one he gave me and I still use it, even though I haven't seen him in at least 10 years. BTW, he never claimed the heel lift (or any treatment he did) would "cure" my scoliosis, but I went to him about once a month for years, which did make my back feel better.

Incidentally, at age 25, I went to an orthopedic surgeon for knee pain, not related to my back. While there, I mentioned I had scoliosis and that I was seeing a chiropractor. The ortho said, very bluntly (almost rudely) that no matter what I did, my curve would progress by about 1 degree per year. I was very upset to hear this. I think he was mostly trying to say I wasting my money on a chiropractor. But that was the first time I'd ever heard that my "mild" curve would progress, no matter what I did. I'd always been told the opposite. I wasn't sure if he knew what he was talking about, but because of that, I guess it's always been in the back of my mind that the curve might get worse. I just didn't really think it would, or maybe I just hoped it wouldn't. Unfortunately, in my case, he was exactly right.

My 20s and early 30s passed without much of a problem with my back. I would get backaches a lot, but Tylenol or Motrin and rest would take care of it. But then in my late 30s, I started to get severe lower back pain with standing, even for just 10 to 15 minutes. Standing in the kitchen making dinner, I'd have to sit down. Grocery shopping became almost unbearable. Luckily, I had a desk job (still do, but only P/T now), so I could still work okay, though I would often be uncomfortable. I went to my family doctor and we tried muscle relaxers, a TENS unit, exercises, NSAIDs. Nothing really helped. I was in the process of moving out of the area when I saw her for the last time, and she was finally understanding how bad the pain was, and how much it was affecting my life. She wanted to send me to physical therapy and to a surgeon. (I did NOT want to see a surgeon, esp. after that last guy.) But I was moving, so that didn't happen.

To cope, I actually (on my own, and against her advice) bought a lumbar back brace at the pharmacy a few years ago. It has metal springs in the lumbar area. I put on 2 of those "waist-nipper/girdle" undergarments, then put the lumbar brace on over that, then my clothes over it. This little "contraption" has helped me more than anything over the past several years. Of course, I feel like I'm stuffed in like a sausage and it's not very comfortable, but I only wear it to do things like grocery shopping, certain housework, etc., or if I know I'm going to be doing some walking. I'll still have pain, and will pay for doing those activities later with increased pain and soreness, but it allows me to do those things without the pain being unbearable.

About 2-1/2 years ago, I started going to a pain mgmt doctor. He's done steroid facet injections at many different levels, nerve blocks, even a rhizotomy, with no more than a couple days of pain relief. He also did a lumbar epidural steroid injection which was horrendous and actually increased my pain, and I couldn't even stand up straight for days. It took me a good 3 weeks to get back to my "baseline" level of pain. NOT a good experience with that, and that's obviously not what happens with most people who get that injection. He didn't have a good explanation as to why it affected me that way. Needless to say, I was not willing to try it again when he asked. The only thing he's done that's helped is prescribe pain medication. I resisted that for a long time, really not wanting to start down that road, and hoping the injections would work, but they haven't so I do take Vicodin, and sometimes Ultram and muscle relaxers. I only take the pain meds in the evening, after I'm done working, because they make me feel "spaced out" and it feels hard to concentrate. Now that everything else he's tried hasn't worked, the only thing he has left to offer is either a spinal nerve stimulator implant (no, thank you) or referring me to a surgeon.

Now I've had an MRI, CT scan, and lumbar x-rays. I had copies of the reports, but not the actual images. The MRI was done first, about 2-1/2 years ago, and it didn't note the degree of the curve. The CT scan didn't either, but I asked them to calculate it, and they said it was 33 degrees. Same thing with the lumbar x-rays, they said 33 degrees. But they used phrases like "moderately severe thoracolumbar scoliosis" (severe?!) and "considerable rotational component" in the reports, which didn't make sense to me. I mean, for so long now, I've been wondering why I have so much pain, and more noticeable deformity, with just a 33 degree curve? I was thinking I probably would have to have surgery at some point, because of the pain, and as the curve progressed, but I wanted to think it would be way, way in the future - if then! I thought of it as a last resort and wanted to try everything else first. At the beginning of this year, I was even going to get the SpineCor brace, to see if it would give me some pain relief. But once the orthotist saw my images (and e-mailed SpineCor to confirm) he said it wouldn't work for me, and would actually make my low back pain WORSE (I guess because of lateral listhesis I have at 1 level?). Wow. They don't mention that possibility on their websites or testimonials do they? LOL

So... I finally went to see a spine surgeon in May. He said he thought my curve was more than 33 degrees, and sent me down the hall for a full back x-ray. I think that's the key. The other studies were ordered by the pain mgmt doctor and focused on my lower back, since that's where most of my pain is, but the whole back needs to be x-rayed to correctly calculate the Cobb angle, right? I wasn't thinking about that. This surgeon calculated the curve at 46 to 50 degrees! And he seemed more than happy (if you know what I mean) to operate. He said he'd probably fuse me from T10 to the sacrum. I was shocked to hear 46 to 50, but I guess not completely, as it makes a lot more sense now as to why I have as much pain and deformity as I do. I think when they said 33 degrees, they weren't using the right levels to calculate the Cobb angle. They weren't going up high enough. Does that seem like what happened?

I'm now trying to wrap my head around the idea of surgery, and this forum has been a huge help, because for so long I wouldn't even consider it. I remember the first time I saw post-op spinal fusion x-rays here, with all the instrumentation. They took my breath away! But then I started to get curious and want to learn more. Now I really like looking at the pictures. Now I have an appt for a 2nd opinion, but the 2nd opinion surgeon is likely the one I'd want to do the surgery, assuming I can work up the courage, at some point, possibly, maybe, for surgery. LOL. His name is Dr. Ganocy, in Los Angeles, and I saw his name mentioned here by a person who had surgery with him and recommended him. I found that by doing a search here on his name, but I don't think that person is here on the forum anymore. Dr. Ganocy is also listed on the SRS site, whereas the 1st surgeon I went to is not (and I didn't really feel like I "clicked" with him anyway). There is also another surgeon on the SRS list who is covered by my insurance and is in San Diego. That would definitely be an easier drive than to L.A., but I haven't found out much about him, and he's younger (so, less experience?). How can I best find out more about a surgeon?

Well, if you're still reading this, thank you. Any advice would be welcome, and I'll try not to be so long-winded in the future!

Lisa

LindaRacine
06-26-2011, 06:14 PM
Hi Lisa...

It's usually pretty easy to find a bio or CV for most docs. Ideally what you want, if possible, is to choose someone who has done a fellowship, preferably in spinal deformities. The best training grounds for this specialty are San Francisco, Minnesota, New York, Boston, and St. Louis.

Good luck with your search.

Regards,
Linda

golfnut
06-26-2011, 07:24 PM
Lisa,
Welcome to the forum. Don't worry about a lengthy post. It tells your story and if anyone understands what you are going through, it's the people from this forum. Good luck in finding a good scoliosis surgeon. We'll look forward to hearing more from you.

SpineTime
06-27-2011, 02:11 AM
Hi Lisa...

It's usually pretty easy to find a bio or CV for most docs. Ideally what you want, if possible, is to choose someone who has done a fellowship, preferably in spinal deformities. The best training grounds for this specialty are San Francisco, Minnesota, New York, Boston, and St. Louis.

Good luck with your search.

Regards,
Linda

Thank you, Linda. If I remember correctly, Dr. Ganocy did a surgical spinal deformities fellowship in New York, at the Hospital of Special Surgery, and went to a top medical school. His credentials seem impressive. The surgeon in San Diego did a fellowship, but in San Diego. I was also wondering how to find out things like how many scoliosis fusion surgeries a doctor has done, how many he or she does each month, and that kind of thing. Is that kind of info. only really something you can get by making an appt. to see them? The 1st surgeon I saw said he does about 1 or 2 a month. That doesn't seem like very many to me, but I don't know, is it?

SpineTime
06-27-2011, 02:15 AM
Lisa,
Welcome to the forum. Don't worry about a lengthy post. It tells your story and if anyone understands what you are going through, it's the people from this forum. Good luck in finding a good scoliosis surgeon. We'll look forward to hearing more from you.

Oh, thank you, Golfnut! I sent my post, saw the size, and immediately wanted to delete it! I could've written less and left a little mystery! :)

Lorz
06-27-2011, 09:25 AM
Welcome Lisa,
I am 3 weeks post-op, being fused T4-S1. I can identify with everything in your post. I think you know, in your gut, when the time comes to consider surgery. I also did many, many years of chiropractic care, and swore I would never have surgery. The last 2 years, I think the adjustments actually made my pain worse. I switched to a gentle, no thrust method, which helped stretch and condition my muscles, to prepare for surgery.
For me, the key to choosing a surgeon, was experience. I chose Dr. Boachie because he does several surgeries a week, does very complex cases, and has really good outcomes. Also, research the hospital where the surgery would be done. A really important factor is, what is their post-op infection rate? You don't want to get a wound infection. As Linda said, there are a lot of good options in CA, and choosing from a SRS doctor is also key.
Take your time, doing your research, and finding someone you feel comfortable with. I think I read every old post on this forum, which was invaluable. Fortunately, with this condition, there is no rush to make a decision. And, once you do decide, you will second guess yourself, that is normal. Good Luck with your search, and keep asking question. This forum has been my life support.

SpineTime
06-27-2011, 09:32 PM
Welcome Lisa,
I am 3 weeks post-op, being fused T4-S1. I can identify with everything in your post. I think you know, in your gut, when the time comes to consider surgery. I also did many, many years of chiropractic care, and swore I would never have surgery. The last 2 years, I think the adjustments actually made my pain worse. I switched to a gentle, no thrust method, which helped stretch and condition my muscles, to prepare for surgery.
For me, the key to choosing a surgeon, was experience. I chose Dr. Boachie because he does several surgeries a week, does very complex cases, and has really good outcomes. Also, research the hospital where the surgery would be done. A really important factor is, what is their post-op infection rate? You don't want to get a wound infection. As Linda said, there are a lot of good options in CA, and choosing from a SRS doctor is also key.
Take your time, doing your research, and finding someone you feel comfortable with. I think I read every old post on this forum, which was invaluable. Fortunately, with this condition, there is no rush to make a decision. And, once you do decide, you will second guess yourself, that is normal. Good Luck with your search, and keep asking question. This forum has been my life support.

Hi Lori,

Congratulations on being 3 weeks post-op! I hope you're doing well in your recovery. I've seen Dr. Boachie's name mentioned here a lot, as one of the top surgeons, so that's great you were able to go to him. And thank you for your comments. I think that's all very good advice, especially about finding out the hospital's infection rate. Very important.

I am worried about finding the right surgeon. I have Kaiser insurance, and there are only 2 doctors on the SRS list who are with Kaiser and within driving distance of me. But I really like everything I've found out about Dr. Ganocy so far, which is a relief. I won't undergo the surgery unless I feel like I have a great surgeon I can trust. I do wish he was closer, because the drive from my house into Los Angeles is long (probably 2-1/2 to 3 hours each way), and can be a nightmare with traffic. But I know some people have to fly long distances to their surgeon, so I'll stop my complaining! I think I'm very slowly inching my way towards surgery... which I never thought I'd say.

Oh, regarding chiropractors, I loved mine. He was a great guy. I think he was completely honest and ethical about what he could and couldn't do to help me. And he always said if I was in pain, to come in if I needed to, and we'd worry about the bill later. Heck, he didn't charge me that much anyway. Maybe he just took pity on me, because I was so young and broke when I first started seeing him. LOL

I've read a lot of old posts here too. I would do a search for something, then end up reading whole threads and learn all kinds of things. This forum really is a tremendous resource. What's puzzling to me is that doctors don't seem to know that much about scoliosis, esp. in adults. It's not like I kept being told I should see a surgeon and refused - quite the opposite. And the 2 times referring me to a surgeon was sort of half-heartedly suggested, now that I remember, they wanted to refer me to a NEUROsurgeon, not an orthopedic surgeon. Up until the orthopedic surgeon I saw in May, no doctors (including my pain mgmt. doctor) ever seemed to think my curve was a big deal. I'd bring it up, they'd make note of it... and move on. They didn't ever seem to take it seriously as a cause of my pain, so for a long time, I didn't either. It's because of what I read here that *I* asked to see an orthopedic surgeon. How could they not have thought of that? I feel like I had to figure this out on my own. Strange.

SpineTime
06-28-2011, 05:00 AM
Now that I think of it (my memory is terrible sometimes), I said above that my pain mgmt dr. doesn't take the scoliosis seriously as the cause of my back pain. He's never brought it up, but when I specifically asked him if the scoliosis was contributing to the pain, he did say yes, absolutely. But I do often get the feeling the curve doesn't impress him as being all that important. It's hard to tell. He's not very talkative.

Lorz
06-28-2011, 03:10 PM
Lisa,
I had the same experience with doctors. My scoliosis, even with as severe as it was, was treated as an "incidental finding" I was also the one who sought out the scoliosis surgeons, who all recommended surgery. The field is just so specialized, most orthopedic drs. don't even realize what can be done, they just say live with it.
As far as insurance, does yours allow for in-network, and out-of-network payments? Many of the top Drs. (Boachie included), do not even participate with insurance. What they do is, determine what your out of network payment would be, and decide if they will accept it. You may have a small balance, but nothing astronomical. The hospital was in-network, so that helped. So, call the Drs. you are interested in seeing, and ask them how they handle those situations. Some times, there are a lot more options than you realize. I never would have known, were it not for this forum. Good Luck!

titaniumed
06-28-2011, 11:49 PM
Lisa

Welcome.

I also utilized Chiropractic to keep things going for many years. 21 years actually. I wouldn’t have made it with out them. Since it worked quite well for me in “maintaining”, I usually post because I cannot believe that there are not that many posters that use Chiropractic for scoliosis. ???

Anyway, you will know when you are ready. The surgical decision is a tough one....

Lori, you hang in there. Things will improve soon.

Ed

SpineTime
06-29-2011, 10:10 PM
Lisa,
I had the same experience with doctors. My scoliosis, even with as severe as it was, was treated as an "incidental finding" I was also the one who sought out the scoliosis surgeons, who all recommended surgery. The field is just so specialized, most orthopedic drs. don't even realize what can be done, they just say live with it.
As far as insurance, does yours allow for in-network, and out-of-network payments? Many of the top Drs. (Boachie included), do not even participate with insurance. What they do is, determine what your out of network payment would be, and decide if they will accept it. You may have a small balance, but nothing astronomical. The hospital was in-network, so that helped. So, call the Drs. you are interested in seeing, and ask them how they handle those situations. Some times, there are a lot more options than you realize. I never would have known, were it not for this forum. Good Luck!

Well, I guess it's good to know I'm not alone in my experiences with drs. They called your curve an incidental finding? That just doesn't sound right, does it?

I will have to check into what you said about in-network vs. out-of-network. I hadn't even thought about that.

SpineTime
06-29-2011, 10:20 PM
Lisa

Welcome.

I also utilized Chiropractic to keep things going for many years. 21 years actually. I wouldn’t have made it with out them. Since it worked quite well for me in “maintaining”, I usually post because I cannot believe that there are not that many posters that use Chiropractic for scoliosis. ???

Anyway, you will know when you are ready. The surgical decision is a tough one....

Lori, you hang in there. Things will improve soon.


Ed

Hi Ed,

Thank you for the welcome. Yes, I think chiropractors help a lot of people, but they're controversial, plus a lot of times, insurance doesn't cover them (mine never did), so I think people don't know what to think of them. I only ever went to that one. My mom goes to a chiro now who has helped her a lot with neck pain. But it sounds like her current one also has a physical therapist there too, for massage type stuff, so who wouldn't like that?

I have to tell you, part of the reason I finally registered here was so I could see all the pictures people post, and I was dying to see yours that everyone was raving about, with your flexibility. They were right. You have a lot of flexibility with your fusion!

I get a little sad when I think about it - if I'm fused from about T10 to sacrum, because I'm actually very flexible now, still, and I wonder how I'll do certain things.

titaniumed
06-30-2011, 01:27 AM
Lisa
Great! We are glad you joined.

I want you to know that there were no guarantees on my flexibility. I think that my surgeon didn’t want me to be dissatisfied after my surgeries. I had to expect the worst. I’m a 49 year skier. (Big mountain) yes, that includes high cliff jumps.

I’m off to Mammoth tomorrow for some 4th of July skiing. Don’t worry, I’ve slowed down and my wings are clipped now.
I will post next week.

Happy 4th of July everyone. 235 is the number now.
Ed

debbei
06-30-2011, 06:19 AM
Lisa,

welcome. I remember feeling like I could be knocked over by a feather when the first Dr. I saw 3 years ago told me how high my curves measured. I never imagined in a million years that I would progress so far to need surgery.

You will get through this. Get as informed as possible, and don't rush into a decision. You've only got one back! My advice is to get the best surgeon possible, one from the srs.org list and go from there. http://www.srs.org/find/

This isn't the type of condition that you go to the general orthopedic who might deal with spine issues as well.

Good luck, and ask any questions here. This is a great group.

SpineTime
07-01-2011, 10:43 PM
Lisa,

welcome. I remember feeling like I could be knocked over by a feather when the first Dr. I saw 3 years ago told me how high my curves measured. I never imagined in a million years that I would progress so far to need surgery.

You will get through this. Get as informed as possible, and don't rush into a decision. You've only got one back! My advice is to get the best surgeon possible, one from the srs.org list and go from there. http://www.srs.org/find/

This isn't the type of condition that you go to the general orthopedic who might deal with spine issues as well.

Good luck, and ask any questions here. This is a great group.

Hi Debbe,

Thank you for the welcome. Yes, this does seem to be a great group of people here.

I think I would have felt like you could knock me over with a feather when the surgeon said the curve is now 46 to 50* (when I thought I was only 33*) except for the fact that not only has the pain gotten worse, but I've really started to notice my left waist area sort of "caving in" much more than it ever did. If not for that, I think I would have been very shocked!

Now it's all about managing the pain as much as I can, exercising regularly (which I've never enjoyed for some reason, even though it makes me feel better!) and finding the best surgeon I can find.

Lisa

jrnyc
07-02-2011, 03:03 AM
hey Lisa
welcome to the forum...

a lot of what you wrote sounds familiar...scoli that didn't bother me for many years...
then i herniated discs, and it was downhill from there! i now have scoli, degenerative disc disease, listhesis, hypokyphosis, spinal stenosis, spinal arthritis, and a few other things i have probably blocked out!
surgery has been recommended to me by every surgeon i've consulted, including several in NYC, 2 in CT, and one in southern CA...
my curves are now holding at T42, L61, but my discs are getting a lot worse...surgery recommended is for scoli and for disc replacement....
for now, i am just having pain management tx...oral pain meds, lots of different shots i've tried...epidural, facet block, nerve ablation, trigger point, etc..only ones that have worked are botox shots in thoracic area, and sacroiliac joint injections in lumbar area...the SI joint shots are a blessing, as nothing else had helped my lumbar pain, which is worst area of my spine...

there are many good SRS surgeons in CA...including one who only does minimally invasive approach, in LA, at Cedars...

i wish you luck in your search for answers...i know you will find the right answers for you...

jess

kennedy
07-02-2011, 04:03 AM
Lisa welcome to the froum. Don't worry about a long post. good luck with your surgery. there great scoliosis surgeons in CA even @ UC Davis

mabeckoff
07-02-2011, 02:23 PM
Lisa, Welcome to the forum. Where do you live? I just moved to Southern CA from NC and am having my revision surgery July 18th

Melissa

SpineTime
07-06-2011, 03:01 AM
hey Lisa
welcome to the forum...

a lot of what you wrote sounds familiar...scoli that didn't bother me for many years...
then i herniated discs, and it was downhill from there! i now have scoli, degenerative disc disease, listhesis, hypokyphosis, spinal stenosis, spinal arthritis, and a few other things i have probably blocked out!
surgery has been recommended to me by every surgeon i've consulted, including several in NYC, 2 in CT, and one in southern CA...
my curves are now holding at T42, L61, but my discs are getting a lot worse...surgery recommended is for scoli and for disc replacement....
for now, i am just having pain management tx...oral pain meds, lots of different shots i've tried...epidural, facet block, nerve ablation, trigger point, etc..only ones that have worked are botox shots in thoracic area, and sacroiliac joint injections in lumbar area...the SI joint shots are a blessing, as nothing else had helped my lumbar pain, which is worst area of my spine...

there are many good SRS surgeons in CA...including one who only does minimally invasive approach, in LA, at Cedars...

i wish you luck in your search for answers...i know you will find the right answers for you...

jess

Hi Jess,

I've seen your posts about going to a pain mgmt dr. I wonder why my pain mgmt dr hasn't done Botox or trigger point injections with me. I think I have the same things you listed, minus disk herniations (mine are just bulging, so... yay? lol), and minus the spinal stenosis.

Most of my pain is right-sided muscle strain and spasm-type stuff, because the right side of my back has to do more of the work with the imbalance caused by the curve. But there's also a nerve pain, with a sensation of heaviness and pressure right in the middle of my lower back that is much harder to deal with. I guess it's more of a pinched nerve thing in that area. I just wish I'd gotten even a couple months of pain relief with anything he did. I'm glad the SI injections have helped you. It's just so nice to get some relief!

Do you think you'll avoid surgery as long as the curves hold? And do you think you will have min. invasive surgery? I think I read that you saw Dr. Anand in L.A. who only does min. invasive? I've looked at his website. I'm interested in that, except if it takes soooo much longer under anesthesia, that sounds scary, and if they need to deflate a lung (do they still have to do that?)... yikes, don't know if I'd be brave enough for that. But my curve is low, so maybe they wouldn't need to do that, and the shorter healing time might just make up for it. Lots to think about.

SpineTime
07-06-2011, 03:05 AM
Lisa welcome to the froum. Don't worry about a long post. good luck with your surgery. there great scoliosis surgeons in CA even @ UC Davis

Hi Kara,

Thank you for the welcome. I'm in awe of you and everyone else who has already gone through the surgery!

SpineTime
07-06-2011, 03:12 AM
Lisa, Welcome to the forum. Where do you live? I just moved to Southern CA from NC and am having my revision surgery July 18th

Melissa

Hi Melissa,

I'm near Palm Springs. Are you more towards L.A., or San Diego? I used to live only about 45-60 min. from the L.A. area (and the beaches, I miss that...), so it feels like I'm reeeaaally far out here now. I hope all goes well with your upcoming surgery. I think I read that you are settled in but don't have a car? It is hard to be in this area without a car.

peachrush7
07-06-2011, 05:12 PM
Lisa,
Your post reminds me so much of my initial posts when I joined the forum....it was like FINALLY! People who understand first hand what I'm going through, and are interested to know what's happening with me! There's nothing like going through your whole life without ever speaking to another person with scoliosis, and then suddenly realize there are hundreds and hundreds of us. So don't feel bad, I think sharing our story is such a big part of accepting what is wrong with our spines, and moving forward with taking care of them.

Blessings,
Rebecca

mabeckoff
07-06-2011, 06:18 PM
Hi Melissa,

I'm near Palm Springs. Are you more towards L.A., or San Diego? I used to live only about 45-60 min. from the L.A. area (and the beaches, I miss that...), so it feels like I'm reeeaaally far out here now. I hope all goes well with your upcoming surgery. I think I read that you are settled in but don't have a car? It is hard to be in this area without a car.

I am in Hesperia . I have a car now but once I have my surgery I will not be able to drive . We went to Palm Springs to take the tram ride. I am having my surgery in Orange CA. We are about 90 minutes apart.
Melissa

SpineTime
07-27-2011, 05:49 AM
Lisa,
Your post reminds me so much of my initial posts when I joined the forum....it was like FINALLY! People who understand first hand what I'm going through, and are interested to know what's happening with me! There's nothing like going through your whole life without ever speaking to another person with scoliosis, and then suddenly realize there are hundreds and hundreds of us. So don't feel bad, I think sharing our story is such a big part of accepting what is wrong with our spines, and moving forward with taking care of them.

Blessings,
Rebecca

Hi Rebecca,

I was reading Doreen's post today, where she mentioned reading your blog, and I realized I never thanked you for your post above to me or told you I also read a lot of your blog. You did a nice job on it, and I found it very helpful. I also read Scoligirl's blog though, that you mentioned. Now I'm just afraid I might confuse and "co-mingle" your stories! I don't think I will though.

I'm in a holding pattern right now as far as my back. I had an appt for a second opinion this month but had to cancel. I have to reschedule for August or Sept when my husband can go with me when his work schedule calms down. So... I'm just kind of hanging out, reading the posts here each day.

I also wanted to add an x-ray to my signature but couldn't get it to work. It's not a very good x-ray anyway (small and hard to see). Hope you're still doing well and thanks for your reply!

Lisa

jrnyc
07-27-2011, 07:08 AM
hi Lisa
sorry i didn't see your reply to my post til now...

i do not believe minimally invasive takes any longer...if you read the posts on surgery in forum, people write of being on the table for 10, 11, 12 hours...i do not believe minimally invasive is a heck of a lot longer than that....

the botox is only for my upper back...my worst pain is lower back...the pain spreads an ache, like a heaviness, into my hips and lower...i am now getting sacroiliac joint injections for that....for some reason no doctor can figure, they are working, when nothing else did...not trigger point, not nerve ablation, not epidurals, not facet blocks, etc....nothing else! my lower back pain makes walking very difficult...that the SI joint shots work is a blessing!

my curve goes toward the left, and the right side carries much of my body...i have a "hump" on my left side, near the scapula....

i am resistant to surgery that needs to go to the pelvis (to the sacrum with pelvic fixation)

i would speak up to your doctor and ask why he/she is doing this or that, or not doing it...it is your body...you have a right to know...at least, that's what i think...

best of luck....
jess

peachrush7
07-27-2011, 06:07 PM
Hi Rebecca,

I was reading Doreen's post today, where she mentioned reading your blog, and I realized I never thanked you for your post above to me or told you I also read a lot of your blog. You did a nice job on it, and I found it very helpful. I also read Scoligirl's blog though, that you mentioned. Now I'm just afraid I might confuse and "co-mingle" your stories! I don't think I will though.

I'm in a holding pattern right now as far as my back. I had an appt for a second opinion this month but had to cancel. I have to reschedule for August or Sept when my husband can go with me when his work schedule calms down. So... I'm just kind of hanging out, reading the posts here each day.

I also wanted to add an x-ray to my signature but couldn't get it to work. It's not a very good x-ray anyway (small and hard to see). Hope you're still doing well and thanks for your reply!

Lisa

Lisa,
Thanks for letting me know the blog is helpful!!! That's what I'm realizing it has really turned into...a way to share my story, and to help others who are going through it or about to go through it. This forum and the people here have really helped me, and I really want to help others in the same way.

I know about that holding pattern...all of last year was like that for me. All those appointments and everything take time. Thankfully I didn't have to get a ton of opinions at that point, since I had already found my surgeon. I read this forum religiously though lol. It really does help prepare for what to expect!

Thanks again for the compliment, it's always nice to hear it's doing what I hope it to!