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Thread: T4 - Pelvic Surgery Suggested...

  1. #16
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,267
    [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 .
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

  2. #17
    Join Date
    May 2008
    Location
    reno,nevada
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    4,472
    Quote Originally Posted by Robbi1464 View Post
    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
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #18
    Join Date
    Mar 2013
    Location
    Chaska, Minnesota
    Posts
    41
    Quote Originally Posted by Robbi1464 View Post
    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

  4. #19
    Join Date
    Feb 2013
    Posts
    10
    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?

  5. #20
    Join Date
    May 2008
    Location
    reno,nevada
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    4,472
    Quote Originally Posted by Robbi1464 View Post
    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
    Attached Images Attached Images
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #21
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    1,106
    Ed where do you find this stuff?
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

  7. #22
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    118
    Quote Originally Posted by Robbi1464 View Post

    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
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  8. #23
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,472
    Quote Originally Posted by jackieg412 View Post
    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
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  9. #24
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    1,106
    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.
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

  10. #25
    Join Date
    Feb 2013
    Posts
    10
    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.

  11. #26
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,472
    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
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  12. #27
    Join Date
    Feb 2013
    Posts
    10
    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?
    Last edited by Robbi1464; 05-15-2018 at 10:41 AM.

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