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Kay1974
12-11-2016, 01:10 PM
Tomorrow I'm headed to a orthopedic local dr and want to know what type of X-rays that I should get? My plan is to send to the scoliosis specialist?

Do they need to be burned to a cd or something?

I just want to get all my ducks in a row.

Thank you.

LindaRacine
12-11-2016, 01:37 PM
If you're seeing a local orthopaedist, it's unlikely that they'll be able to give you the appropriate xrays. You'll need 36" full spine xrays with femurs.

Kay1974
12-11-2016, 03:10 PM
Well I will be requesting it if they can do that size. It's a ortho clinic right next to a main hospital in Baton Rouge. Thanks for the information.

KathyInIowa
12-12-2016, 07:08 PM
Melissa,

How was your appointment today?

Kay1974
12-13-2016, 07:53 AM
Hi Kathy,

My appt with this new orthopedic was good. He was really fast with me but did all the muscle strengthening test by hand and my reflexes which I'm sure I passed them all. It's frustrating because I know my leg muscle is weaker where I'm having all the pain travel from lower back.

He took new xrays and said I did not have a thiracic curve but mainly a lumbar curve or thoracplumberthoracolumbar curve that measured 41. Thankfully he scheduled an MRI but I'm waiting on insurance approval so I hope they approve.

He was not worried one bit about me having an atypucal lumbar curve because he said if there were anything to worry about those come from the left thiracic curve and that my curve looked clearly idiopathic and that I probably got the curve at 12 years old which I told him yes on.

He did not really speculate one way or another his treatment plan but my GP dr. Told me he went to Harvard and did a fellowship in Boston. I really don't know how many scoliosis surgeries he's done but as time goes on at my next appt I will ask. I think a lot will depend on this MRI before he communicates more.

Thanks for asking, I hope all is going ok for your recovery so far. How are you doing this many months into it? I believe your curve degree looks close to mine. When I get home from work tonight I will post my new X-ray picture.

jackieg412
12-13-2016, 08:15 AM
Hi,it sounds like a good appointment. My curve was also lumbar. It was at a 50 degree though. It was actually restricting the L3 level. While I have had problems, the correction of the lumbar was very helpful. This sounds like a positive appointment for you.

KathyInIowa
12-13-2016, 08:31 PM
Hi, Melisse. It does sound like you had a nice, positive appointment!
I am 5-1/2 months post op. I'm doing well - but I still have my "moments." My biggest complaint is I still can get really tight muscle spasms where my rib hump was. I know they say it takes a year for that to sort of go away, so I'm trying to be patient. This weekend I was on my feet too much and probably over did things in trying to do minimal Christmas decorating. So, Monday and today I'm pretty sore. If I take Tylenol a couple times a day and lay down periodically, that seems to settle things down.

Even when I don't over do things, I still lay down during the day at times, just not as often as I used to. But, I can't go 100 miles an hour all day like I like to. My body just won't allow it. So, I'm adjusting to that. I had a hard time walking or standing prior to my surgery, so that actually forced me to slow down in life too.

My curve was also listed as "thoracolumbar." It was 40 degrees at the time of my surgery. So, I didn't have a huge curve, but I had terrible disc issues and stenosis and all that good stuff that causes the terrible leg pain. I let it go for 3 years before my surgery. Looking back, I think that was too long. My left leg is still weaker and now physically smaller than my right leg. I guess time will tell if I can gain back enough strength in my left leg so that I can feel "equal."

I think I am quite a bit older than you, so if I can do it, you can do it!! I hope your MRI comes out OK and that you learn good things about your surgeon. If you don't get a good feel for the surgeon, you can always try someone else!

Good luck and keep us posted.

Kathy

Kay1974
12-13-2016, 09:24 PM
Kathy,

I know what you mean about laying down more. I work full time and have my 11 year old daughter to take care of and about 2:00 in the afternoon, my back is sore and my leg. All I think about is getting home hopefully avoiding any unnecessary trips to any stores and get home to take a hot bath. That always feels great, then some stretching. Those straight spined people just don't know how good they have it:)

My Dr's visit gave me some hope and today was much better as far as my mental nerves. I looked up the Dr as I didn't know much about him going in and he is not listed on this site as a scoliosis surgeon and I'm thinking he has not done many adult spinal fusions but he's my ticket in getting an MRI. The steroids I'm taking are keeping me up at night so I'll be glad when I finish them.

Leg pain from a bad back is no fun but I am realizing now after 4 months of it, it's here to stay. I'm trying to embrace the pain and it just sucks! It sure sounds like you were able to hold out with it for several years before your surgery. I sure hope in time with your recovery that you can strengthen yours up again. When can you start leg exercises?

Can you get in a tub or is that something after fusion that You just can't? I've always been a bath in the evening type person so that would be hard.

KathyInIowa
12-13-2016, 09:54 PM
Well.... I didn't intend on surviving horrible back/leg/foot pain for 3 years! I'm a very active person, and when I started have lots of bad pain, we were doing epidurals. I was getting some relief but not a lot. My local orthoped was like "you are so active, no doctor would cut on you." So, we let it go hoping things would get better. Then my left leg was becoming noticeably weak and more painful. I said I was going to Mayo and he said "first we need to run tests on you here." This was around 15 months of bad pain. So we started the EKG (??) on my leg which showed an L5 nerve impingement. Then they made me go through more testing to rule out MS and other neuromuscular diseases. Then then finally did a CT Myelogram which showed a bulging disk at L4/L5. They said I needed surgery. BUT - my orthoped refers his scoli patients to Twin Cities Spine Center. So, I went there and met Dr. Perra and was given my options. I had 2 engaged daughters at the time so long story short, I had decompression surgery to get me through the weddings knowing full well that I'd need scoli surgery at some point.

The decompression surgery did take away the horrible leg pain, but of course I still had the other problems from scoliosis. And, as you'll read on several posts on this forum, that surgery can make a scoliotic spine more unstable, which it did for me. After the first wedding I could tell I was getting worse, so I schedule surgery for a month after the 2nd wedding. Needless to say, I had a lot on my mind for those 8 months!

I haven't even tried to sit in a tub yet - but I'm pretty sure I couldn't do it. I am still pretty stiff - I move around in normal daily activities very normal and the average person wouldn't know anything is "wrong" with me, but being fused to the sacrum definitely has it's disadvantages. My hamstrings are still really tight and I still can't tie my shoes - even in putting my foot on a table. I can't lift my leg real high anyway - and if I put my foot on a lower item, like a chair, then I can't lean down enough to reach my shoe lace. So, I leave them tied and use my gripper & shoe horn to put my shoes on. LOL! I was in really good shape going into this surgery, and in some ways my recovery is ahead of schedule, but in other ways I'm struggling. So, I guess it's the good with the bad!

I have been going to PT. Mainly for core strengthening and some things to loosen up my tight hips and hamstrings. It think it has helped, but I don't think I've made HUGE strides. I think it's just a slow but sure process.

I do find myself taking showers at random times - I just stand there and let the hot water hit my tight muscles in my back. I'm an empty nester and I only work part time (we run our own company so I only work when I want to and I can work from home. I'm spoiled I know!!). I decided from June 24, 2016 to June 24, 2017 it was all about my recovery. Maybe even past June 24, 2017. My family and friends are very supportive and they understand when "I just can't do that right now."

Christmas Eve will be my 6-month mark! Woo Hoo! I'm almost half way there!

Kathy

Kay1974
12-15-2016, 01:13 PM
Kathy, that's really great that your already in PT, I wasn't sure how long they make you wait for that after such a big surgery. Hamstrings take a long time to stretch, I work on mine day but this leg pain just keeps it from healing I think. It's hard for me to tie my shoes now and I prefer the slip on
Kind. Bore is a great brand of shoe with great support.

I appreciate your scoliosis story and what it's like after surgery. This has helped my fears to a point being able to somewhat understand it. It's been such an eye opener for me to get to connect to others living with this spine and pain that can accompany it. My Dr. Visits these last 4 years have never been great when it comes to my scoliosis, I usually get 5 minutes of their time and it leaves me confused on what I can and should be doing. It's just more of the "wait and see". meanwhile the pain is growing slowly. I'm not in a hurry to get on a table. I think it will do me good to see a scoliosis specialist with a great background to give me a good opinion and be able to see my MRI and give me a clue of what my future may be if I do or don't have surgery. My curve isn't huge but it's sure gotten steadily painful, like yours.

It seems you have a great support system and job. I'm sure keeping your life stress free as much as possible is so crucial to healing and your body is on that path.

Thanks again for everyone and the support. We are all in this together.

Kay1974
12-19-2016, 03:38 PM
It looks like my Dr. Was only able to get an MRI for the Lumbars he said. I hope this will be enough to take with me when I go out of state to see a couple scoliosis specialist.

Does anyone know if this will atleast suffice what Dr's are looking for?

Thank you.

Kay1974
12-19-2016, 03:40 PM
The young gal that called me did not know if the gallbladder clips used will be an issue. She is calling my surgeon from that surgery 2 years ago.

Kay1974
12-20-2016, 02:53 PM
Today I had my MRI and because the young guy in the imaging center was so kind, they included t10, t11, and t12 in the scan as well as the lumbar area that my insurance approved. He was so very nice and I'm very appreciative of this.
M

Tomorrow I go see the Dr. For the read out and hope to get some answers.

Kay1974
12-20-2016, 02:55 PM
Oh and I have no idea how anyone could sleep in that test. It was loud and my arms hurt from being so still and probably tense, it took about 40 minutes.

Kay1974
01-07-2017, 05:07 PM
The orthopedic Dr. said I don't need any kind of emergency surgery based off my MRI. He said I had DDD at L4-L5 with segmental collapse at that level along with right sides foraminal narrowing with some disc bulging eccentric to that side. He advised me to get an epidural in that area and said he'd watch me the next 5 years and that i should consider surgery before going through menopause. He recommended I see a neurologist for my leg pain issues and now I'm set to get an EMG to rule out lumbarplexopathy.

My regular GP tried me on Cymbalta After taking it for 4 days I threw that out. I've never taken a pill that made me feel like a zombie and caused me to stay up over 100 hours straight and lost 10 pounds which I'm not that big to begin with so I can't afford to lose it! Anyway I just wanted something for the nerve pain but Cymbalta is not it for me. I'd rather deal with the pain than take that stuff.

titaniumed
01-07-2017, 10:13 PM
Kay, Didnít you say you were headed in the direction of Plano? Was it Dr Hostin?

I say this because you now have all these docs dictating your scoliosis direction, and they are not scoliosis specialists.

Ed

Kay1974
01-07-2017, 11:07 PM
Hi Ed,

I am heading out of state next month to see a scoliosis specialist for my spine. I decided to see this local orthopedic to get my MRI and any advice on my leg pain. After talking to folks here and even here at home, I would not let a regular orthopedic fix my spine. I've heard too many stories of bad outcomes, it's just too risky.

I don't want to rush into anything but I don't think my pain or curve is leaving me anytime. My lumbar curve is a 41 degree curve and its advancing only at about a half degree per year. I see so many on here having surgery on way bigger curves but my curve sure gives me pain now and has changed my quality of life so I'm just trying to figure out what's best to do. It's just not black and white for me unlike so many others here where it is.

Anyway, hope your doing well.

Melisse

titaniumed
01-07-2017, 11:48 PM
It would probably be best to wait until you see a scoliosis specialist.....

When you have people that donít work with scoliosis patients, even something like CT machine operation, curves and rotation can throw a wrench in the gears. I have had to do re runs on CT machines because of this, and then having someone who doesnít work with scoliosis patients try to land a needle into your rotated spine, its just something to think about.....Its hard to say on the shots by the testimonials here, it probably runs around 50:50. Linda would know more on this...

Iím doing great, its snowing every day out here, and no bear traps this season. I have a thread on this common gripping feeling we get, but this year has been great. Usually this happened during winter storms, but now I donít know what to say. Sometimes, there are no answers.

Hang in there

Ed

Kay1974
01-08-2017, 12:37 PM
I don't know how I feel on the epidural but I'm kinda thinking, why not try it. It can't hurt me. I understand about having a scoliosis specialist treat me as far as a surgery but I've got to be able to have some kind of local care as I wouldnt think going out of state for every conservative treatment is possible.


I miss the snow and the mountains, I bet it's beautiful in your neck of the woods.

titaniumed
01-08-2017, 03:24 PM
I don't know how I feel on the epidural but I'm kinda thinking, why not try it. It can't hurt me. I understand about having a scoliosis specialist treat me as far as a surgery but I've got to be able to have some kind of local care as I wouldnt think going out of state for every conservative treatment is possible.


Melisse, There are complications that can result from corticosteroid shots. I am assuming that these risks are small, but we still need to be aware of....
http://www.mayoclinic.org/tests-procedures/cortisone-shots/details/risks/cmc-20206857

You can also Google "Spinal steroid injection risks"

This article below from Dr Cunningham from HSS will answer some questions....

Under non-surgical treatment, He lists...

observation
avoidance of activities that exacerbate
exercise
heat or cold
acupuncture
manipulations
oral meds
injections
surgery

He mentions using injections if oral drugs do not offer relief....in other words, this list is in sequence. Its easier to try an oral NSAID anti inflammatory, than to do a steroid shot. But the docs and hospitals make a fortune doing these shots....hence the skip process.
https://www.hss.edu/conditions_degenerative-scoliosis-overview.asp


Anti-Inflammatory diet ..... Diet is important! Food for thought...
http://www.arthritis.org/living-with-arthritis/arthritis-diet/anti-inflammatory/

Its raining cats and dogs right now, should turn back to snow in a few days...

Ed