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titaniumed
09-01-2016, 07:29 PM
Here is the Dr Boachie “Surgery saved my life” video with Juma Genda.

He was operated on around 10 years ago, and this program was on Discovery for a limited time. I watched this video probably around 10 times before my surgeries. Informative and inspirational.

It helps with understanding the seriousness that we go through as patients, and what surgeons also go through.

Please realize that he was a polio induced scoli, and extremely serious. This surgery also done in Ghana Africa.

This is a GRAPHIC SURGICAL VIDEO. Please don’t watch if you cant handle it.

https://www.youtube.com/watch?v=Ci9XXSJyv50

Ed

Pooka1
09-01-2016, 10:04 PM
Thanks for posting that, Ed.

I think it emphasizes how surgeons take patients as they come and balance desperately trying to help with dealing with the risk. It is so important to catch these curves much earlier.

titaniumed
09-03-2016, 10:20 AM
Sharon, Your welcome.

I have a lot to say about this video as it was extremely important for me as a patient.

I wanted to bump this one up, and want to comment but my eyesight is hampered by dry eye and cataracts and need a break from computer screens.....

Hoping for more input on this from others....

Notice the “Old school” method of attaching top and bottom and connecting at the middle. Dr Boachie has been around the block a few times.....Man-o.man!

Ed

LindaRacine
09-03-2016, 12:44 PM
Ed...

There have been several other conversations on this program. Search on BOACHIE SURGERY SAVED MY LIFE and I think you'll get them all.

--Linda

tae_tap
09-04-2016, 09:57 PM
This was really inspiring. When you feel down you have to remember there is always someone worse. Thank God for giving the talent of spinal correction to our specialist.

titaniumed
09-05-2016, 10:27 AM
Linda

Years ago, I had this video recorded on a DVR. Upon returning that DVR, I lost it and could never find the video again.....(and was upset with Discovery Channel) I looked for a few years and then gave up.

Some of the old threads and posts have FOCUS link attached, but they don’t have that particular video on that webpage. They started their You Tube channel, and I stumbled across it there. This is the only place I have been able to find it, and thus posted it, titled correctly. (smiley face) Searching things sometimes can be a pain, you know its there, and it doesn’t come up. Titling e-mails and documents really takes some thought and is very important. I get e-mails from the lazy ones at work, and re-title so searching becomes a tad easier.

I hate looking for things.... I lost my grabber on the 2nd day, used it once, that sorta proves it (smiley face) I don’t worry about lost things anymore.....the little things, they don’t matter much.

https://www.youtube.com/user/ORTHOFOCOS/videos?view=0&sort=da&flow=grid

Dr Boachie mentions in one of the videos that procedures can change on the fly due to spinal cord monitoring and blood flow (and pressure) which does drop upon general anesthesia. I have read approx 26%. I found this material looking into eye problems here recently, reading about neurologic complications from general anesthesia.

The Juma vid shows (on a layman level) the complexity that we sometimes have to endure which is helpful in understanding what happens. For ourselves, and for caretakers or inner circle....It shows that surgeons are humans that can only try to do their best, with varying results and no guarantees. It explains why I was rejected for surgery, and why my surgeon told me I could be fused “as is”.

What is amazing is that we actually do heal after going through all of this. Hopefully without something going wrong. Sometimes we have to take that chance as patients.

When Juma was 3 months post, I remember how it was difficult just getting up from a chair and carefully negotiating stairs. He gets his hug from his mom, and you can see his arm do that protective reach because hugging a scoli patient after surgery can be painful for us since we are so delicate.

I already had some insight, or intuitive understanding of what was to happen before I made my decision.....I think this is important.

May everyone understand what’s involved to make their decisions....

Ed

mistybowe
09-06-2016, 08:47 AM
This was really inspiring. When you feel down you have to remember there is always someone worse. Thank God for giving the talent of spinal correction to our specialist.

I completely agree! I watched this video and was immediately reminded not to feel sorry for myself ever again. My curves were nothing compared to what this poor kid went through. Thank god for good surgeons.

Jjohnsonphd
09-07-2016, 05:55 PM
Linda

Years ago, I had this video recorded on a DVR. Upon returning that DVR, I lost it and could never find the video again.....(and was upset with Discovery Channel) I looked for a few years and then gave up.

Some of the old threads and posts have FOCUS link attached, but they don’t have that particular video on that webpage. They started their You Tube channel, and I stumbled across it there. This is the only place I have been able to find it, and thus posted it, titled correctly. (smiley face) Searching things sometimes can be a pain, you know its there, and it doesn’t come up. Titling e-mails and documents really takes some thought and is very important. I get e-mails from the lazy ones at work, and re-title so searching becomes a tad easier.

I hate looking for things.... I lost my grabber on the 2nd day, used it once, that sorta proves it (smiley face) I don’t worry about lost things anymore.....the little things, they don’t matter much.

https://www.youtube.com/user/ORTHOFOCOS/videos?view=0&sort=da&flow=grid

Dr Boachie mentions in one of the videos that procedures can change on the fly due to spinal cord monitoring and blood flow (and pressure) which does drop upon general anesthesia. I have read approx 26%. I found this material looking into eye problems here recently, reading about neurologic complications from general anesthesia.

The Juma vid shows (on a layman level) the complexity that we sometimes have to endure which is helpful in understanding what happens. For ourselves, and for caretakers or inner circle....It shows that surgeons are humans that can only try to do their best, with varying results and no guarantees. It explains why I was rejected for surgery, and why my surgeon told me I could be fused “as is”.

What is amazing is that we actually do heal after going through all of this. Hopefully without something going wrong. Sometimes we have to take that chance as patients.

When Juma was 3 months post, I remember how it was difficult just getting up from a chair and carefully negotiating stairs. He gets his hug from his mom, and you can see his arm do that protective reach because hugging a scoli patient after surgery can be painful for us since we are so delicate.

I already had some insight, or intuitive understanding of what was to happen before I made my decision.....I think this is important.

May everyone understand what’s involved to make their decisions....

Ed


Hi Ed,

I really could not get over the remarkable video. I covered up the graphic scenes but let my 9 and 12 year old watch the rest and they were mesmerized by the whole thing. They could not get over that was the surgery I had (albeit not remotely that severe). Thank you so much for sharing it.

I SO appreciate any research you can discover on my vision complication/damage. I will see the big wig eye doctor who essentially did a huge shoulder shrug " dunno" when I went the first time. I was very much in the throws of the survival stage then at 5 weeks, on a lot of pain medication, and could not drill him on my condition. Now, at 12 weeks, I am in a clear state of mind ( if I am not drooling tired) and want to know exactly what happened during surgery. Any info will help. I am still unclear if it was an anesthesia-related issue or something else. My spine surgeon did say he had to un-correct my upper curve because I was unbalanced by the measuring technique and would have been leaning to the left. I had no indicators of distress though, which is what I don't understand. I am expecting post-op 6 or more months the eye doctor will recommend strabismus surgery. I really can't imagine having surgery again without more answers to what went wrong.

Thanks so much 😌
Jana

titaniumed
09-07-2016, 11:16 PM
Jana, You might never end up having or getting an answer on this.... It could be multiple things which are hard to pinpoint.... and far from being simple. Sometimes things are simple and sometimes there are no answers. I lost my gall bladder, my vascular surgeon blamed it on “chemistry”. Nice to have that answer even if nobody knows, but did have to eventually have my gall bladder removed due to golf ball sized stones that formed. It’s a rare complication that happens to scoliosis patients, I saw it it the Moe handbook, 1978. 2 posters here in 8 years reported losing their gall bladders....

I take it your off meds now? and how is the spine? At 3 months I was just flapping my wings a little bit and feeling a little better.

I’m wondering if at some point they will offer steroids for the eye?

Ed

Jjohnsonphd
09-08-2016, 01:50 PM
Hi Ed,
You are probably completely right. I know I am seeing a very seasoned neuro-opthamologist and I need to trust that he is covering the bases. He said there have been no recorded complication of my kind and he has no one to compare me to.

I am off meds completely most days, sometimes will take 2 Dilaudid once a day if I feel terrible but I don't see it even helping much at this point. Laying down and ice packs are the best help. There are times where I feel good and want to do things but a lot of this week I have felt very tired and worn out. I went from sleeping pretty good to now terrible and I think that has a lot to do with feeling so crummy. I am trying to adjust to getting up at 6am and getting everyone out of the house so by 8:30 am I am shot! If I could stay feeling good until lunchtime, I could work in the morning but I don't feel up to it yet. I am not sure if this fatigue is normal this far along. There is still a lot of discomfort in my back and I am very aware of the hardware. The top on my fusion is the place that really hurts when I am up and around for too long. Not very exciting news yet! The recovery hike...is....slow. And what the heck about sneezing? Oddly I never sneezed until 2 weeks ago and I couldn't even do it, the pain knocked it out before I could sneeze. Ooooo, it hurts.

Thanks for the thoughts!
Jana

mistybowe
09-09-2016, 09:57 AM
Hi Ed,
And what the heck about sneezing? Oddly I never sneezed until 2 weeks ago and I couldn't even do it, the pain knocked it out before I could sneeze. Ooooo, it hurts.

Jana,

This made me laugh out loud!! Sneezing does really hurt!! I hate it.

Robbi1464
09-09-2016, 05:08 PM
Ed,

Thank you for sharing this video. I sat and cried watching this. What an amazing thing to happen to this little boy. I too noticed the Mother trying to huge him and seeing his protective mode physically and emotionally. I hope they showed her what they did to him. You can tell he was still in a lot of pain just by the way he walked and his facial expressions as well. I can't imagine the mental and physical strength of our surgeons and staff that stand for hours on these surgeries and just the sheer detail that has to be involved. Did it say how long this surgery took? I will have to look for more of the videos of him as I wondered if his spine did fuse... and how life is for him now. Again, thank you for sharing this.. and Linda for the additional information on where to find more.



Suggested surgery
t4-pelvic
anterior and posterior approach
T 63 degrees L 50 degrees
Second Opinion 9/30/16

kennedy
09-09-2016, 08:10 PM
i came across that movie the other day on youtube

titaniumed
09-10-2016, 07:39 PM
Hi Ed,
You are probably completely right. I know I am seeing a very seasoned neuro-opthamologist and I need to trust that he is covering the bases. He said there have been no recorded complication of my kind and he has no one to compare me to.

I am off meds completely most days, sometimes will take 2 Dilaudid once a day if I feel terrible but I don't see it even helping much at this point. Laying down and ice packs are the best help. There are times where I feel good and want to do things but a lot of this week I have felt very tired and worn out. I went from sleeping pretty good to now terrible and I think that has a lot to do with feeling so crummy. I am trying to adjust to getting up at 6am and getting everyone out of the house so by 8:30 am I am shot! If I could stay feeling good until lunchtime, I could work in the morning but I don't feel up to it yet. I am not sure if this fatigue is normal this far along. There is still a lot of discomfort in my back and I am very aware of the hardware. The top on my fusion is the place that really hurts when I am up and around for too long. Not very exciting news yet! The recovery hike...is....slow. And what the heck about sneezing? Oddly I never sneezed until 2 weeks ago and I couldn't even do it, the pain knocked it out before I could sneeze. Ooooo, it hurts.

Thanks for the thoughts!
Jana

Jana, Now you can understand why I say see-saw recovery. If you are feeling well at times, that’s good news. I have never used opoid’s on an occasional basis (on and off) and wonder if its really worth it? Once I quit, I quit all meds. Quit chemicals and replaced with nutrients. I felt much better after a few days.

The fatigue lasts a really long time....I battled fatigue for 2 years. (and still get tired today). When I have to nap, I have to nap.

Sneezing, coughing and laughing hurts....but those pains pass in time....

I really felt better after the 4th month passed, still a long recovery but remember that particular milestone...

Hang in there

Ed

titaniumed
09-10-2016, 08:15 PM
Did it say how long this surgery took?

I have no idea how long Juma’s surgery took....some of the surgeries can be quite long.

Here is something interesting...National Geographic chose this picture “Best picture of 1987”

In the photo, after 23 hours, he is staring at vitals on “sub standard” equipment....In 1987 Poland, I wonder about the age of that equipment? Man-o-man!

http://www.zmescience.com/other/great-pics/zbigniew-religa-picture/

I believe it was the 1st heart transplant in Poland....

Looking and reading through these videos and articles will help give a understanding as to what’s involved.

As patients, we need to know that anything can happen. Its not like making a cup of coffee. (Even though someone ruined a pot of coffee at work the other day)

I couldn’t say anything.

Ed