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Robbi1464
08-31-2016, 10:45 AM
Hi Everyone,

I am new to the forum. I think I've searched every resource on the internet that I can find about my curves. I was diagnosed with scoliosis when I was 12 years old. My sister found it when she was trying to get me to do a back-flip and I kept twisting out of it. She looked at my back and told my Mom that something was wrong.. then the long 4 years till I was 16 of wearing the Milwaukee Brace occurred. It's an emotional thing as I think all of us can relate to. Going to school and looking different.. Junior High was brutal to me. I had to wear my brace 23 hours a day only to take it off for gym class and showering. I cheated though to take it off to ride horses. Anyway, years have gone by now and like so many of us in our later years the curves start to hurt or the degrees get bad enough that we have to do something about them. I was told last week that my curves are 63 T and 50 L. That I will need Posterior and Anterior surgery with spinal fusion T4 to pelvic. My husband and I have built a life around our ranch and ride horses for pleasure. I'm not a wahoo riding. We walk mostly. I have been so saddened by the advise that I would never be able to ride again. I have scheduled an second opinion at the Baylor Scoliosis Center in Plano TX at the end of this month. I don't have much pain except in the lower lumbar area that keeps me up at night. I would love to hear from others that have had this long of a fusion and what their life has been like 12 months out after it. I'm feeling emotions of being scared, depressed.. you name it. <3

52 year old female
Milwaukee Brace - 12 years to 16 years - T 35 L 32

2016 T63 L 50
Suggested surgery T4 - Pelvic

jackieg412
08-31-2016, 01:38 PM
Yes go for that second opinion. I don't know if you would be able to ride but many people go back to everything after healing. Also check how long you can postpone the surgery. You mentioned you weren't in a lot of pain so maybe you can wait. I wish I had waited. Even with significant pain I wish I had waited.

Robbi1464
08-31-2016, 04:36 PM
What happened that you fractured so quickly after surgery?

titaniumed
08-31-2016, 08:56 PM
Robbi,

We have been sitting around the table here for many years wondering where everybody is? Glad you you could sit down with us. Your testimonial is familiar...

I guess I will start with the horse statement and yes, that surgeon was preparing your expectations just in case you cant ride. I have attached a photo below of me getting ready to ride in the Colombian mountains a few years back. I must say it went quite smooth. I rode for 4 hours and all the others (non-scolis) were complaining of back pain except me. I guess being fused to the pelvis is a good thing.

At 12 months, I was 90% healed. It took another year to say I was completely healed, so 2 years. The 2nd year is the fine tuning year, all the soft tissues have to be re-built again and it takes a long time.

I would say the simple way to figure healing rates in a 50 year old adult would be to figure 10% per month.....The first few weeks are pretty much a survival mode where you spend every single minute trying to get comfortable. Getting comfortable after surgery is hard, and sleep is difficult. Sitting down is generally limited to 2 minutes for the first month, but it does get better with time.

I did contact Dr Shelokov many years ago before I met my current surgeon. I had a massive ALIF done, and it worked well. It was extremely serious surgery but it worked out well considering the complexity. It will be good for you to visit Baylor for a 2nd opinion.

Ask any questions you wish, you can also PM anyone here if you wish to e-mail or chat on the phone...

Welcome to the forum

Ed

JenniferG
08-31-2016, 09:14 PM
Hi Robbi, My single thoracic curve was 68 degrees when I had T4 - Sacrum surgery with iliac bolts. I was almost 58. That was 7.5 years ago. I have had no pain since, for which I'll be forever grateful. I am able to do anything I want, though my surgeon told me not to run as it was too jarring on the few unfused vertebra above my fusion. I am quite sure I could ride a horse, especially if it was just walking, though I haven't done so.

I am left with a 22 degree curve, which is unnoticeable to the untrained eye. All my clothes fit just fine apart from one shoulder being slightly lower than the other, and necklines tend to drop away to that side a little.

Surgery was the best thing I ever did. Drop me a message if I can answer any questions for you! I hope the second opinion is more help.

jackieg412
08-31-2016, 09:28 PM
Robbie I think you asked why I fractured so soon in the thoracic spine. I reached for a tissue. And the vertebrae above the fusion fractured. I do not have osteoporosis so the best reason I can guess at is I was still real strong and the muscles pulled. The second guess would be that the spine should have been fused up to T2 during the first surgery. My SPINE was first fused to t10 and quite apparent it was not a stable vertebrae. So while my spine team wanted to be conservative, it wasn't the best decision. After the fracture, I had the rest fused a few years later. I went rapidly into hyper kyphosis. Feel free to ask any questions.

LindaRacine
08-31-2016, 09:50 PM
Ed...

Shelokov is deceased. He died about 6-7 years ago I think.

--Linda

titaniumed
08-31-2016, 10:56 PM
Yes.... Downhill mountain biking at Telluride. I skied there in 1981. Its an extremely scenic area of Colorado.

Downhill mountain biking is probably THE hardest upper body workout I have ever experienced.....

Its such a shame....and he was around 51, I believe.

I have decided not to push as hard anymore.....No more extreme workouts for me.

He was good surgeon...

Ed

Robbi1464
09-01-2016, 02:12 PM
Thank you everyone for your hope and encouragement. Ed, your photo brought tears to my eyes.... very emotional ones. Was it hard to get off the horse? Or did you just swing your leg over? I want to also thank you guys for giving me the truths of all this and the expectations that I should have, if any.... Dr. Richard Hostin is the physician at Baylor that I will be seeing. Has anyone heard of him? Dr. Weinecke here in Oklahoma is well known for his abilities and comes highly recommended, but I just want to make sure.. Is there a preference to what type of physician does the surgery? Neurologist vs. Othropedic Surgeon?

There was one thing I remember from being a young girl of 12 and being first diagnosed. I kept dreaming about the DNA helix.. every time I closed my eyes to go to sleep that figure appeared and I really at that time had no idea what it was.. I know that sounds so strange but after all these years now facing these fears again.. that's what I remember from the beginning of this journey.

Jennifer thank you for sharing your story... I'm hearing more hopeful stories.. and Jackie I hope that you are okay now.. I sneeze pretty hard too...<3


God Bless <3

mistybowe
09-02-2016, 10:25 AM
Is there a preference to what type of physician does the surgery? Neurologist vs. Othropedic Surgeon? <3

Good morning,

I had an orthopedic surgeon perform my surgery, but a neurologist was there for the entire surgery as well monitoring my spinal cord function.

I understand completely how you feel about potentially being limited in future activities and giving up something you love. I was a runner pre-surgery and miss it every single day and still get emotional looking at my race medals or even another runner on the road. The way I look at it, I'd rather live a full, happy, less painful life and NOT run than to continue running and be in pain. It's hard to trade something you love... but in the end, do we have a choice? I'm obviously still working through this change in my head and I'm sure you will do the same. Ed always speaks of being patient and letting yourself heal properly and I think that is such great advice and I try to remind myself of this every single day.

Best of luck to you.

KathyInIowa
09-02-2016, 12:24 PM
Hi.....

I agree 100% with mistybowe. I would rather be pain free than continue with certain activities.

I was a runner & biker - competed in local road races and triathlons. I was 52 when I herniated the only halfway decent disk I had left, L4/L5. That pretty much ended my running days. Heck, I could barely walk for 3 years.

I am 10 weeks post op from anterior/posterior fusion from T10 - Sacrum. I'm obviously still in the "recovery stages" but am doing well. I only walk for exercise but I can walk pain free and that is like heaven to me! I walk 25 minutes at a time, 3 or 4 times a day. I'm still adjusting to certain movements being fused, so there are certain daily tasks I still use the grabber for. But, all in all, I'm learning to adjust and I know it takes at least 12 months to get even just 90% there.

I had an orthopedic surgeon do my fusion & hardware. I had a thoracic surgeon assist with the anterior approach. There was also a person in the OR room that monitored my spinal cord activity. I'm not sure if there was a neurologist there or not.

"Ed's quote: I would say the simple way to figure healing rates in a 50 year old adult would be to figure 10% per month.....The first few weeks are pretty much a survival mode where you spend every single minute trying to get comfortable. Getting comfortable after surgery is hard, and sleep is difficult. Sitting down is generally limited to 2 minutes for the first month, but it does get better with time. "

In regards to Ed's posting that I copy & pasted part of (above): I agree with this. I am at 10 weeks, and I still remember vividly the first several weeks. Definitely survival mode. Not necessarily just the pain - thankfully good drugs helped a lot with that. I was not prepared for the effects of getting no sleep, chronic insomnia, and thigh pain. My legs hurt worse than my back ever did. They still do. And, I was unprepared for the emotional roller coaster that I would be riding. I don't usually struggle with emotions but I sat around crying for no real reason in the early weeks. Looking back, I think some of that was the effects of the drugs. Who knows.

Since I was having an anterior approach, I was very scared of abdominal pain. I can honestly say, I had very little. I don't know if the pain meds were handling that, or if it was so minimal compared to my other pain or what, but that was never an issue for me.

I wish you luck & success on your journey!

Robbi1464
09-02-2016, 03:28 PM
Misty, you just recently had your surgery... how are you doing on the pain medications? I have to feel like I would be like Kathy because I've only taken them a couple times in my life and they seem to get to me emotionally if I take them for too long. I know this road is going to be the most hardest I have ever had to endure.. and the word that Ed used, "survival"... really hit home to me. I have resolved myself to the fact if I may never be able to get back on a horses back.. I will take care of the one I have as a pet. I'm adjusting already. Since I wore the brace for such a long time, I never have bent from my back.. I bend naturally from my waist so that probably won't change. I don't bend to tie my shoes now, I raise my leg and tie them. I think that is from being braced for that time. I worry about the pain I will have - a lot! I read the posts here and want to ask so many questions.. like how do you sit in a car for your follow-up visits... such little things we do now.. that I have the fear of the unknown...

Why do you think your legs are hurting so bad Kathy? Has anyone else had that problem?

jackieg412
09-02-2016, 03:56 PM
Actually you will not be able to bend from the waist. If you are fused to the pelvis it is not possible. But you can bend from the hip. The difference is if you sit on the ground with your legs straight out and try to bend ,that is the waist. Can not be done with fusion to pelvis. But if you sit and bend your legs toward you you will be able to reach forward some. That is from the hip. It is a difference and almost everyone adjusts. Also you can squat or get all the way down and then stand up. Of course this is after you heal. Us fused people just keep working things out.

Pooka1
09-02-2016, 04:40 PM
I have resolved myself to the fact if I may never be able to get back on a horses back.. I will take care of the one I have as a pet.

Hi. I am a fellow horse owner. My twin daughters were fused several years ago.

I just wanted to say I admire your decision to keep your horse as a pet. That's what I did with my first horse after I retired her and what I will do with my present horse when I retire him.

Please don't give up hope of ever sitting on your horse again. Please ask your surgeon about whether you could ride again after you are healed. I am not a surgeon and I have no knowledge but I would be shocked if you couldn't at least walk trails on your horse. I think you might even be able to post trot (maybe not sit trot) and ride canter on a smooth horse. My daughters were fused T4-L1 and they do not have a riding restriction though they gave up riding long before they were fused. I am not sure if people fused through the lumbar would necessarily have a riding restriction. You have to ask. And when you do, please ascertain your surgeon's level of understanding of riding. I am not sure these guys know what is involved necessarily. I don't think the issue is falling off either but you have to ask.

Good luck.

LindaRacine
09-02-2016, 08:29 PM
To sit, no one really bends at the waist. If you take a look at this picture, you'll see that all of the bending occurs at the hips:

https://s-media-cache-ak0.pinimg.com/736x/e3/7e/27/e37e27cfd3ff5dc1dd96137a3bc0b155.jpg

The only bending at the waist anyone does looks like this, and is something you won't be able to do once your lumbar spine and sacrum are fused:

https://thumbs.dreamstime.com/x/x-ray-illustration-human-anatomy-skeleton-20598960.jpg

mabeckoff
09-03-2016, 09:02 AM
[QUOTE=Robbi1464;167258]Thank you everyone for your hope and encouragement. Ed, your photo brought tears to my eyes.... very emotional ones. Was it hard to get off the horse? Or did you just swing your leg over? I want to also thank you guys for giving me the truths of all this and the expectations that I should have, if any.... Dr. Richard Hostin is the physician at Baylor that I will be seeing. Has anyone heard of him? Dr. Weinecke here in Oklahoma is well known for his abilities and comes highly recommended, but I just want to make sure.. Is there a preference to what type of physician does the surgery? Neurologist vs. Othropedic Surgeon?


I spoke to my surgeon and he spoke highly of Dr. Richard Hostin .

titaniumed
09-03-2016, 09:42 AM
Thank you everyone for your hope and encouragement. Ed, your photo brought tears to my eyes.... very emotional ones. Was it hard to get off the horse? Or did you just swing your leg over? I want to also thank you guys for giving me the truths of all this and the expectations that I should have, if any.... Dr. Richard Hostin is the physician at Baylor that I will be seeing. Has anyone heard of him? Dr. Weinecke here in Oklahoma is well known for his abilities and comes highly recommended, but I just want to make sure.. Is there a preference to what type of physician does the surgery? Neurologist vs. Othropedic Surgeon?


No, not hard to get off, but I did want someone holding the horse when mounting or dismounting....I “was” drinking Aguardiente, the local firewater, which is the social norm down there...was riding with a billionaire, and 5 of his attorneys. It was one of those things where you cant say no. My Aunt down there has a Paso Fino ranch and is a well known breeder of these horses. I couldn’t say no to scoliosis surgery, and couldn’t say no to riding horses after scoliosis surgery.
https://en.wikipedia.org/wiki/Paso_Fino

Dr Hostin worked with Dr Shelokov many years ago. Dr Shelokov was a well known master surgeon in the scoliosis community. There are a few members here that been done by both surgeons....Like I mentioned, a good idea to go and talk to him.

Be careful with your insurance if leaving the state. They used to only cover 50%, so you will need to be aware of this since these surgeries are not cheap. My hospital bill alone was 785K. I had 2 scoliosis surgeons, a vascular surgeon, and a few others hanging out. My hospital reports were written by around 9 doctors. Apparently, they thought I was an excellent historian. I was out for a few days in ICU, lights on, nobody home, and no pain if you know what I mean. The injectable and IV meds they use in the hospital have the ability to remove ALL PAIN. From General Anesthesia to clean involves a weaning process, this process can be painful.....

From all the posters around here I think Jennifer and Karen (Golfnut) came through with flying colors. We had many members here around 7 years ago that had outstanding results from scoliosis surgery. We also have a few that didn’t do well even using surgeons of outstanding caliber, like Dr Lenke and Dr Boachie, so it shows that there is an element if risk involved. The main things we have to worry about are pseudarthrosis (non-union) and infection. Osteoporosis needs to be addressed and can present problems with bone integrity and holding or anchoring ability of the screws....Its nice to be in good physical condition with a strong immune system when doing surgery. Our bodies go through an incredible shocking with many changes, some unpleasant, adjusting to medications and things like hydrostatic pressure, edema, blood changes etc. Recovery involves a healing and biochemical balancing process that takes time and adjustment.

I see that Kathy in Iowa has hit a no pain situation, which is almost like a “concept” for some of us. Congratulations Kathy! I remember getting there again after decades of pain, I actually had to adjust to zero pain. I actually didn’t know how to handle it. I never expected it.....But, we are scolis, and nothing is forever with constant change. I do have my neck herniation’s which have been controlled somehow with steroid’s (One application of Medrol pack) only one, (lucky me) and Diclofenac, (A must have in our NSAID arsenal). I treat meds like a fire extinguisher, (Break glass if necessary)

I also had little pain from my anterior (ALIF). I had a huge ileus (stopping of lower GI) but this gets resolved in time.....

We have horses in Nevada. I also have friends who have horses here but years ago I couldn’t ride due to lumbar pain. I would take my RV and park next to the corral. My friend had a Tennessee, and we would have these in depth discussions together along with the occasional carrot. Boy this horse had some personality! I would go back in my RV and read and all of a sudden the lights would go out. Upon going out to see what was wrong, I see that this horse figured out how to remove the 50AMP plug from the socket by the horse water heater. I then discussed the dangers of this with him and he stopped this dangerous activity. It was a mutual understanding, and I didn’t even have to cut off the carrots. Amazing stuff, you know? This guy thought he was Mr ED, well I straightened him out let me tell you! (smiley face)

Ed

mistybowe
09-06-2016, 08:42 AM
Misty, you just recently had your surgery... how are you doing on the pain medications?

Good morning Robbi,

I am 5 weeks post op and completely med free at this point, unless you count Tylenol! I was not using any pain meds prior to surgery though and was on a pretty low dose of hydrocodone (5/325) so it was not too difficult. What I had to realize was that I was still going to have aches and pains and that it is something that I need to get used to. The aches are bearable and if I am stiff or sore, I just lay down for 20 minutes and the problem is lessened. The biggest problem that I had going off of the pain meds was the inevitable insomnia that ensued. I tried Tylenol PM and had the opposite reaction and was fidgety and up all night long. Last night I tried Unisom since it has a different active ingredient and I slept like a baby. Hopefully I am off of that before too long as well. The important thing is to just listen to your body and do what's right for you.

Misty

Robbi1464
09-06-2016, 10:29 AM
Ed, I think you may be the "most interesting man alive" VERY inspiring!! I laughed so hard reading your fire water story. That must have been a really fun time! When we first bought our farm I would sometimes drink a little too much vino and go down to the paddock and just lay on the back of my draft mare and look up at the stars. Each time she moved to eat grass I could feel the natural adjustment movement to my lower spine, and she timed her movement so well that I could really feel my lower spine move... it felt amazing. I thought of you Ed this weekend when my next door neighbor asked me to ride one of her horses while she jumped her other horse during a lesson. She wanted to have both of them in the arena at the same time. I told her I could only walk and trot her horse because I was having back issues right now. I know I'm not in denial of this anymore, I can talk about it now without feeling like I'm less adequate from others with a straight spine..and that feeling of "why did this happen to me?" Idiopathic? No explanation? Feeling sorry for myself... ick! Very thankful that something can be done about it. Thank you also for letting me know that Dr. Hostin has trained under a master. It's a 3 1/2 hour drive to Plano which I keep thinking is good going down there for the surgery, but coming home how can people travel that distance?

Linda, thank you for your references to the bending. Does bending at the hips get easier when it's fused. Right now the pain is severe lower, that even bending at the hips I tend to lean more weight on my left hip going down.

Misty, that is inspiring that you are off pain meds 5 weeks out! I use a natural melatonin vitamin "Olly Sleep" they have worked great for me with fighting the pain at night and getting to sleep.

I would like to schedule the surgery for February 2017.. I have a few months of down time then. About 5 months actually. Is that enough time to get to feeling a little normal again after this kind of a surgery?

titaniumed
09-06-2016, 08:59 PM
Ed, I think you may be the "most interesting man alive" VERY inspiring!!


You have to learn to laugh even when your in pain....I try to keeps things interesting around here. (smiley face)

If I posted something like this, (see attachment below) now that’s interesting. Burning Man just ended out here, I saw this photo and laughed for an hour. Its art......Now if they had a huge 200 foot wooden scoliosis spine that they burned, I would go. $390 to camp in the desert, no thanks. But 70,000 attend each year. I believe the tickets sold out in 1 hour. With vehicle fees, it’s a minimum $35 million dollar gross.

I would still consider your local surgeon.....I think what it boils down to is “how many” scoliosis surgeries one does? Also, they have done studies at UCSF on “multiple” surgeons and having better outcomes. So, a good question to ask. People do travel for their surgeries, but its easier if its done locally.

In my case, at 5 months, I was approx 50% healed. I did take 18 months off work which was what I needed since I had my shoulder and gall problems. The fatigue took a really long time, and I was saying that I missed my naps, and cant say that anymore because I started the naps again.

I think it’s a really good idea to read and post here for a long time before making your decision. There are going to be things you never thought of that will show up on any particular thread, (except any alien photos LOL)

Reading David Wolpert’s book would be a good idea. He did a great job on it.
http://www.scoliosis.org/store/books.php

Ed

jackieg412
09-06-2016, 09:39 PM
Ed where do you find this stuff?

KathyInIowa
09-06-2016, 09:53 PM
Why do you think your legs are hurting so bad Kathy? Has anyone else had that problem?

From what my surgeon & my local orthoped say, thigh pain is very normal. It was just my quads. They say because with anterior approach, the muscles, tendons & nerves around the lower abdomen really get pulled & stretched and that's what causes the post surgery pain. Also, in my case, my hips were way out of whack and there was about a 45 degree swing of my pelvis when straightening my spine. That movement alone would cause a lot of pulling and stretching.

I'm not gonna lie, it HURT! I am now 10 weeks out & it is much better. But the first 6 to 7 weeks I was miserable with it. Some of that might just be my body, I've not read many postings where people complained about thigh pain.

I could still do my post surgery walking. But if I even slightly touched my thigh, it was terrible pain. So weird. Like everything else, it has eased up.

Kathy

titaniumed
09-06-2016, 10:18 PM
Ed where do you find this stuff?

Its in my back yard.....The one and only, replicated all over the world, but just not the same.

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

70,000 people come through town and we see them.....they come from all over the world.

Reno holds a few events....

Hot August nights
Burning man
Reno Air races
Street vibrations
Camel races
Balloon races

Ed

jackieg412
09-07-2016, 07:31 AM
Well you live in an exciting place and my back yard ( not that close) is Chicago. While the city is beautiful it has become a tragic killing field. It seems impossible to make any improvement in the very horrific amount of innocent people being shot. And I have to travel there next week for a follow up with the surgeon. That being said , if it is a nice day the drive along the lake is stunning. Like another world.

Robbi1464
09-07-2016, 12:39 PM
My dear friend just got back from Burning Man. They go every year.. I think this has been their 4th year. Interesting week to say the least!!! ha ha.. She said she made a burn offering for me during this whole process of the back thing right now. If that's your back yard Ed.. its very dusty there and I probably would die of sinus issues!

Melissa, thank you for asking your physician about Dr. Hostin. I'm anxiously waiting for his opinion!


Jackie... ugh.. the anterior approach. That's something I will have to get acquainted with as well... I hope that pain subsides for you soon. I have heard the Chicago has the highest murder rate in the nation. I grew up in Galesburg Il.

titaniumed
09-07-2016, 11:44 PM
Jackie, you have to admit, aliens are exciting.... I would laugh so hard I would hurt myself.

I have been to many of the most dangerous cities in the world. TJ, Juarez, NYC in 1978, San Pedro Sula, Honduras currently in 1st place, Medellin all my life, Caracas....

Burning man is around a 90 minute drive north of here, out in the Black Rock desert. You can drive you car in reverse at 75MPH without looking and you wont hit anything. There is nothing to hit. Complete desolation, and a great place to go to if you need to be alone. Good for healing or studying.

Robbi, Let us know when you visit Dr Hostin. Once again, just because you visit doesn’t mean you have to commit. We need our time to think things over.....

Ed

Robbi1464
09-08-2016, 09:51 AM
Hi Ed,

The second consult is 9/30 at 1:30 pm. (sigh) I start my first PT session today.. this man came highly recommended to me and has worked with a lot of folks that have decided not to do the surgery. I feel like I'm in a holding pattern to land right now. I'm afraid my patience is not the greatest and that worries me for this procedure as I hear so many of you with stellar patience skills.

Ed, by the way, you are a terrific writer. I hope you have done something with that gift!

I received my xrays today.. I don't know how to post them.. Can someone help me? :)