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Jimbo
01-30-2008, 10:45 AM
In my last post I talked about the pain and discomfort I am experiencing with my scoliosis (L-38/T-25). The pain has actually gotten much worse and I have had to withdraw from my university course and spend alott of time in bed. I have been talking back and forth with the Baylor Institute and they seem to be taking me more seriously than my ortho surgeon. He just keeps telling me to try alternative therapies, even though I already have!! Argh so frustrating. I have noticed a great reduction in my happiness and are strongly considering surgery. I know my curves are not really large but they are significant and are causing me endless pain and unhappiness. Just wondering what some of you thought about the surgical option. I have read up extensively about it and know allot of the downtime, possible complications and the rest. Anyways, thanks in advance for any advice you may have for me.

Also there doesnt seem to be many males who have had any corrective surgery, or is there?

Susie*Bee
01-30-2008, 11:12 AM
So sorry this is affecting the quality of your life so much!!! I don't know what to suggest other than getting another opinion from a qualified, board certified, SRS belonging type specialist whose interests/expertise are in scoliosis-- surgery or management. Hopefully you will get lots of input from others. As far as guys go, part of it may be they don't spend as much time going to forums as some of us gals do. Best wishes in getting some much needed help! I'm feeling for you!

crepehanger
01-30-2008, 12:07 PM
My gosh, Jimbo-

Your quality of life sucks when pain causes you to have to put your life on hold. Are you going to Baylor in Plano? I ditto everything Susie said, and wish you the best.....keep searching and don't give up.

skoshi314
01-30-2008, 12:09 PM
Hi Jimbo,
I'll give you my experience and see if it helps you any. In 1995 I went to a chiropractor for a 'rib that I had thrown out of place' when I was putting my then 2 year old son in his car seat. My x-rays at that time were in the neighborhood of T-25* and L-*35*. But since I wasn't having any pain I didn't seek further treatment after the rib incident. Then, about 10 years ago I noticed every now and then I'd have a little back pain but nothing significant. Over the course of the last 10 years the pain has gotten slowly, progressivly worse. But being the stubborn (according to my precious family) and independant (self-proclaimed) person that I am I just ignored it and kept right on going. Early last spring I noticed I was taking a lot of Motrin for the pain and it was helping less and less. By July, I'd had enough and set an appointment to visit with a spine surgeon/specialist. In August, my curves were T-49* and L-60*. Oddly enough that made me feel a little better about the pain since I didn't want to admit to being old or a wimp. At that point we decided to try a few options. I've tried heat/cold, 3 spinal steroid injections, different non-narcotic pain meds through a pain management doc, and now I'm trying physical therapy. Back in August, I was pretty hesitant to even think about surgery with the amount of down time. I have 3 very busy kids and I don't want to miss a single activity they take part in. Since December, the pain level I'm experiencing has multiplied many times over. I don't know what has changed, but I've moved my next appointment up with the surgeon/specialist to Feb. 21 from late March. Now, all that being said, I have gotten to the point in my life that I'm 90% sure I'm ready to jump into surgery, potential complications, recovery time and all. Back in August I never would have believed that I would be saying that this soon, but I'm tired of being tired and I'm ready to do something. I think as individuals we know when the time is right for ourselves. It's a very personal, difficult decision because this isn't just an outpatient procedure. This is a life changing procedure. It would be much easier if someone would just make the decision for us. For me, this has been an amazing learning experience because I've had to learn to trust my own instincts. No one else can measure the amount of pain we are in. Everyone has different factors to consider when deciding on this surgery. For me, if I don't do the surgery this summer, I will probably have to wait another year and a half or so before I can consider it again since my daughter will be a senior in high school next year. I know I'll be recovering while she's a senior, but I'm just not sure I have it in me to wait a year and a half.
Anyway, now that I've told my 'tale of woe" :( I hope it helps you some. I think it helped me, too, to be able to sound all of this out. WOW! Thanks, Jimbo! You were asking for help but you helped me!

txmarinemom
01-30-2008, 12:48 PM
In my last post I talked about the pain and discomfort I am experiencing with my scoliosis (L-38/T-25). The pain has actually gotten much worse and I have had to withdraw from my university course and spend alott of time in bed. I have been talking back and forth with the Baylor Institute and they seem to be taking me more seriously than my ortho surgeon.

Jimbo,

To which Baylor are you referring? Assumedly, you're in Texas ... Dallas or Houston?

Jimbo
01-31-2008, 01:18 AM
Thankyou all, I am really happy with the input I receive on this forum, it really does help with making those really important decisions. skoshi314, thankyou for your disclosure, I hope you receive the best treatment and have great success with it. I really do think that within us all we know if we are needing more than just the basic therapies, I feel as though surgery would be best for me as I am having this amount of pain at age 26 and I am quite fit too.

Um, I am nowhere near Texas! Actually in Sydney, Australia so that will make it hard to get help from Plano. I was just seeing all my family scattered throughout the U.S for the past 2 months and saw the Baylor ad on an American Airlines flight, which appeared to me like a sign from heaven, as I was sitting in that nasty little economy class seat with my back feeling as though somebody was jamming screw drivers into my spine. I am either having surgery or am going to live on the international space station, aaahhh just thinkin of that low gravity!

Aussiemum
01-31-2008, 05:45 AM
Hi Jimbo,

I'm in Sydney as well. My 12 (nearly 13) year old is having her surgery in just over a week on the 12th Feb. She sees Dr Andrew Cree at Westmead but he also treats adults for Scoliosis. You could always give him a try and see what he has to say. Really the ortho's will only give you advice on three things - either wait and see, bracing (and your too old for that now) or surgery. Surgery is not to be taken lightly but since your still relatively young, I suppose if your going to need surgery better now at 26 than in another 20 years at 46 when your curves are much higher.

It's funny how scoliosis affects people in so many different ways. When you have these low curves and so much pain it makes you wonder how those that reach 70's and above manage at all. I know Elysia is in pain almost 70% of the time now, she's constantly complaining of rib pain, no back pain but her ribs are hurting a lot due to her rotation.

I wish you all the luck in the world that you can get some good and correct help.

Cheers
Del

lady
01-31-2008, 10:07 AM
Aussie, I guess we are just the few fortunate ones who reach a ripe age (I'm 60) with 67 degrees thoracic curve and ? lumbar with very minimal pain. On the downside, our situation makes it very hard to decide on getting surgery despite the unsightly hump.

CHRIS WBS
01-31-2008, 11:21 AM
Im not so sure we are fortunate, because sooner or later our collapsing spines will give us problems. Then we are facing a bigger surgery with more risk for complications and a much longer recovery. I often wish Id had pain long before now.

Jimbo
02-01-2008, 08:32 PM
Thanks aussiemom, I will look into that. I do have another option, my auntie is currently running a large section of St Vincent's Hopsital in Sydney so I am going to contact her about this problem. I will post up who/what she recommends when I hear from her. I wish you and your daughter the best of luck, so sad to here about it when a young child is in so much pain, however it is good that she is young and can be treated. I am under that same philosophy myself in that I should really consider agressive treatment whilst I am still sort of young and healthy.

Can anyone answer me these couple of further questions: Do the current instruments used in the spinal surgery (if no breakage occurs) contribute to deteroration of the spine as you age. Last up, has anybody been covered for the surgery by their insurance company after joining a health company ( as a pre-existing condition)? I spoke with my guys NIB and they told me they could only tell me if I could give them a surgery code, also told me if I am considering such things to up my cover from mid to top, which is double the cost, something hard to pay when a full time uni student, sigh.

KScribe
03-07-2008, 09:09 AM
Hey Jimbo,

I also noticed that most of the posters on this board are female rather than male. I do think they say that scoliosis affects females more than guys (don't know what that is though?)

43 year old male here in Florida. Wore a Milwaukee Brace all through my teenage years. I was on the borderline for having surgery as a teen, and my parents decided against it feeling it would be too extreme. I kind of wish now that they just opted for the surgery. I'm wondering if my quality of life would be better now if I had it done back then (early 1980's).

How old are you (just wondering). Did you wear a brace as a teenager? What do your doctors say in terms of surgical options for your scoliosis and chronic pain? My next step is to consult with several specialists in ADULT scoliosis down here in Miami. So far, none of my orthopedic doctors has even really mentioned my scoliosis as a contributing factor to my disc problems and pain. The only people that always make an issue out of it are my physical therapists -- every one that I've been to has said the scoliosis is DEFINITELY a factor in my back pain and disc problems. SO now it's time to take care of this once and for all and to proceed with back surgery to correct this issue, if that's what the specialists tell me to do.

WIshing you luck. If you ever feel like you need another guy to talk to/write to, feel free to PM me. Kevin

skoshi314
03-07-2008, 10:14 AM
Hey Jimbo,
I also noticed that most of the posters on this board are female rather than male. I do think they say that scoliosis affects females more than guys (don't know what that is though?)
43 year old male here in Florida. Wore a Milwaukee Brace all through my teenage years. I was on the borderline for having surgery as a teen, and my parents decided against it feeling it would be too extreme. I kind of wish now that they just opted for the surgery. I'm wondering if my quality of life would be better now if I had it done back then (early 1980's).
Kevin
Hi Kevin,
Yes, apparently scoliosis does affect more females than males. I've not researched it extensively, but I don't think anyone really knows why. If someone has knowledge of why this is, I'd love to know.

I've had the same quality of life questions as you. I don't have a clue what my curves were when I was diagnosed at 13 (late 70's) but my parents opted to not pursue surgery or even consult with an ortho, just did the chiro thing. In order to not drive myself insane over the issue, I have to believe everything happens for a reason and there is a spectaculare lesson in all this for me. I sure hope I learn that lesson soon, 'cause I'm a little tired of the pain!

Take care!

Suzy
03-07-2008, 11:22 AM
Hi Jim,

Sorry to hear about how much pain you are in, sounds like how bad I was. Your curves don't have to be huge to cause pain. My lumbar curve was 49*. (I had no upper curve.) Once my quality of life was effected I knew I needed surgery. One thing I learned is you need to push the issue of your scoliosis when talking about your pain. Your orthos are use to back pain being from disc problems most often. We scolio people are a rare breed to most orthos. Did you know some Dr's. don't think scoliosis causes pain? Yup, true. There was a post about it here awhile back. As for there not being a lot of men with scoli you are correct, most are female. There have been a few here since I have been on the forum that have had surgery then disappeared. One who is exercising and going to the chiropractor and will check his curves this summer to see how it is going. (That is BrianB for those of you who might remember him.)

As for your question about deterioration of the spine after surgery I can only tell you what I am facing per my Dr. I know I need to be careful with my L5 and S1 area. (I am fused T10 to L4) My Dr. said 50/50 chance I would need those fused later depending on how I took care of my back. (Keeping my core strong and not stressing my back.) They might deteriorate on their own or not at all. I asked if I should go ahead and fuse those last 2 now because of the stress they might be under with my fusion and he said no. Now on that same subject my friend Penny (Here on the forum and near where I live.) had the ligaments above her fusion give way rupturing the disc. She had 3 levels added to he fusion due to this at about 9 months out from her initial surgery of T4 to S1. This has NEVER happened in any of the surgeries her Dr. has done. She had to be different I told her.

KScribe
03-07-2008, 07:14 PM
One thing I learned is you need to push the issue of your scoliosis when talking about your pain. Your orthos are use to back pain being from disc problems most often. We scolio people are a rare breed to most orthos. Did you know some Dr's. don't think scoliosis causes pain? Yup, true. There was a post about it here awhile back.

I have been dealing with orhtopedic doctors, pain management doctors, neurosurgeons and so forth for the past 4 or 5 years, and I MUST agree with you that the issue of scoliosis as the cause for my chronic back pain is NEVER addressed by any of them. In fact, when I asked them if my scoliosis could be causing all the problems with my discs ( four of them herniated right now) they have all told me "NO -- that has nothing to do with it." Do you believe that? I'm learning so much from this board and I've only been on it for one day so far!

I will say, though, that every physical therapist I have been too immediately notices my scoliosis without my even telling them about it as soon as they look at my back -- my shoulders don't line up, my hips don't line up -- the curve is noticeable if I take my shirt off -- you guys know the deal. They seem to the be the only people so far who acknowledge and contribute a lot of my pain and disc problems to the scoliosis. This is what made me think about investigating this further and trying to find a specialist who deals in scoliosis in adults. Thank goodness I found the NSF website and this forum.

Thanks to all of you out there for sharing your stories and experiences and advice, etc.. This board has proven so helpful to me so far and has really helped my depression today.

Kevin

Jimbo
03-10-2008, 02:01 AM
Thanks again all! I saw my Ortho today and he was alott more attentive and he actually agreed that scoliosis is the source of my pain. He has ordered MRI scans, I think I am getting somewhere now. I have just had surgery on my eye too, I have kerataconus, which sucks. They had to cut my cornea open and remove an intac, I watched the scalpel coming toward my eye the whole time and the pain was tremendous and I had all 4 wisdom teeth yanked out with a local anasthetic earlier this year too. I am getting more familiar with surgeries! It has been quite a year for me.

I find comfort in hope. Just knowing that somebody is taking me seriously and that there are options available helps me alot. Anyways sorry to unleash my problems upon you all, just need to vent sometimes. Anyways, i better go, its hard to type with one eye!

carolad
03-10-2008, 07:30 AM
Sounds like you've been having an awful time - and its all the more distressing when people don't take you seriously. At least now you have got someone to listen to you - that is half the battle.

In the meantime, I wonder would you consider taking some Alexander Technique lessons to help deal with the pain? I've been taking lessons (about 8 now) and I've found it has helped me, both by making me more aware of my posture so I put as little strain on my back as possible, but also by giving me a more positive outlook. It has made me feel like I'm more in control of my life again.

I know its difficult in these situations, because everyone tends to recommend their favourite therapy....but all I can tell you is that I've tried chiropractic, physio, massage, ulstrasound therapy, acupuncture, pilates, stretching exercises, anti-inflammatories, painkillers.... All have helped a bit, but the effects soon wear off. The Alexander Technique is the one thing that I think has given me lasting relief. Maybe worth a go??

Good luck anyway, and stay positive - you will get something sorted in the end :)