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titaniumed
01-28-2013, 10:42 PM
Well, Iím sitting here thinking it was 5 years ago that I walked into the hospital for my scoli surgeries. After a 34 year wait, I felt like a fish being reeled in after it gives up in the last 10 feet. The fight was finally over.

I was dropped off by my neighbors, walked in, paid $1000 and sat there and waited around 30 minutes. I then went downstairs and they hooked up an IV. Another 30 minutes later, they wheeled me back upstairs to the staging area by the operating room. My surgeon told me that I wouldnít see him and that my vascular surgeon would start things off with my anterior He came by and asked me if I was nervous. I told him that I should be, and he then inserted an IV into the top of my wrist in 1.6 seconds and said that they had to get going, we have a long day today....I was out in 4 seconds. Vascular surgeons are really quick with IVís.....

I woke up around the 6th day, didnít remember anything other than being woke up by Dr Menmuir asking permission for the second surgery.(posterior) He turned a valve and that was that....What a handy valve! In and out in 2 seconds.

It worked out well even with a 2 year recovery. If I were to do it all over, I would have had surgery at age 40 instead of age 49, and I would have paid for a private room.

I cant say it was the best decision I ever made, since there really was no decision. Waiting till the pain is out of control wasnít worth it.

Ed

Pooka1
01-28-2013, 11:18 PM
Warm congratulations, Ti Ed, for your accomplishments in deciding on the surgery and making it through to the other side in rare form as always. Attitude is everything.

You are our treasure. :-)

Thanks so much.

Sharon

Confusedmom
01-28-2013, 11:20 PM
Five years, Ed! You are an inspiration and comfort to all of us!!!

Evelyn

Irina
01-28-2013, 11:34 PM
Congratulations, Ed! We are very lucky to have you here.

kennedy
01-28-2013, 11:50 PM
Wow Ed congrads

LindaRacine
01-29-2013, 12:25 AM
A long road my friend. Congratulations.

tae_tap
01-29-2013, 07:37 AM
Ed,
Many of us here look up to you and your never ending positivity! I for one am thankful to have had you to keep perspective through my process. Happy 5 year anniversary!
Tamena

JuliaAnn
01-29-2013, 02:58 PM
Thank you, Ed, for your posts on this board. They encourage so many people! Scoliosis surgery is never easy. Your posts create a path of optimism for us to follow. I really appreciate it.

I'm like you and wish I'd had surgery when I was younger. I tried several times but two surgeons and one doctor told me I was too old. Of course I wasn't too old but it's a shame that those professionals weren't willing to at least tell me why they thought I was too old. I believed them. I'm glad I didn't get surgery with any surgeon who was not a specialist in scoliosis.

You are an inspiration to us. Thank you for sticking around, even though you are well enough to move on. We appreciate you.

JenniferG
01-29-2013, 04:20 PM
When it was my turn to make the decision, you were one of a handful who gave great advice and encouragement. You knew it would be good for me and did what you could to help me make/stick with the right decision. This forum needs the long-termers, because anyone making the decision today, wants and needs to know that years down the track, the chances are good that they will be good. Your great attitude, your humour, your knowledge and experience is very important here, so I hope you'll stay with this forum for many years to come.

Congrats on a brilliant five years!

Susie*Bee
01-29-2013, 04:49 PM
Hey, friend! Congratulations are definitely in order! You've been to He** and back and are able to tell others in a very grand way all about your personal trek. Thanks from me also, for always being there for so many folks. You are wise beyond your years... (big smile!) Shoot-- that just reminded me I need to change my signature. I turned 62 yesterday. Feeling really good!

golfnut
01-29-2013, 08:55 PM
Ed,
Congratulations on your 5 year anniversary. You are such an asset to this forum. You certainly gave me encouragement during my pre-surgery stressful months and I still read your advice to others. You always nail it. Your positive attitude is contagious and so beneficial to all of us! Thanks for staying involved in the forum after so many years. I know it takes a lot of your time to reply to all of us but just know that it is appreciated.

Happy Birthday, Susie Bee, yesterday. We're the same age.

titaniumed
01-29-2013, 09:38 PM
Aww....shucks. I’m all choked up now....(sniffle-sniffle and other assorted guttural,nasal,sinus,bovine,wheezing,related mechanical type vibrations transmitted through the air “and” internet)

Bovine?....yes, I heard an emotionally charged “moo” in there.

Its been a sort of duty, or obligation for me to post and try to help those struggling with ”Our thing”. Since its not a disease, I will call it our thing....(smiley face)

Our thing has been a long road for sure......but one thing I know about our thing, is that it’s not such a bad thing, and a good thing since I have gotten to know all of you...... Hope that makes some sort of sense and not overly mushy.....Many guys are not mushy. Were from Mars remember?

I wish I could spend more time reading and posting like I did in my recovery.....work keeps me very busy these days.

Its been a real pleasure posting here....its nice to have an interest in the same subject together, sitting around the table chatting with one another. I owe a sincere thank you to NSF and Linda Racine for this forum....its something that I could have used back in the 70’s when I had to make my own decisions and wondering what was going to happen.

I have many e-mails come in, which is fine, but I do like to have the group input on things.....very important. I have always enjoyed brainstorming and covering all the bases which is why the forum is so important, besides, my surgeon wanted me here.

Doctors orders, you know?

Ed

TwinmomTN
01-29-2013, 10:02 PM
Congrats Ed! You are a true asset to the forum. Thank you for all you contribute!

Pam

mabeckoff
01-29-2013, 11:58 PM
Way to go Ed! You are a inspiration .I hope that someday I will have some more quality of life

rohrer01
01-30-2013, 12:34 AM
Ed,
Thank you for sharing your story. I'm in a predicament now where my right rotator cuff is injured because of my curvature (impingement syndrome of the right scapula). It's extremely painful and my arm is weak with limited range of motion. Sooo, my physiatrist is sending me back for a surgical consult. PT failed to make the shoulder any better. I think of you when the pain is really bad. How you went through all of the stuff you did with a BROKEN shoulder. I know my curves aren't that bad compared to most of you. I don't know if surgery is looming around the corner for me this time or if it would evenl help. However, I look to people like you that care to share. There's light at the end of this tunnel. Thank you.

susancook
01-30-2013, 12:16 PM
Hey Ed! You continue to be an inspiration for everyone.....well, especially me! Your statement that you wish that you had had the surgery earlier addresses my personal question about waiting.

Thanks for posting your ski video. Frankly, it scared me! Glad that your titanium is so strong! And backpacking with a 40 pound pack! I love backpacking and Dr. Hart said that I probably would not be able to do it after surgery. Maybe I can....but I only usually carry 25 pounds anyway. Backpacking in the NW is why we moved here. We like to hike and camp. You have given me such courage that an active life is possible after fusion. Thanks!

I hope that you had a party to celebrate the occasion. Why didn't you invite me?

Question: you said that your doctor had you sign another consent after the anterior procedure day so that he could do the posterior procedure. So, what if you said no?

Again, congratulations and continue to LIVE your life!

Adios from Susanna in Puerto Vallarta

jackieg412
01-30-2013, 05:12 PM
Way to go!!!! You always make me happy! I am a little behind you in the years since surgery---but I am always wowed by all you do!! As I said--Way to go!

titaniumed
01-30-2013, 10:05 PM
Question: you said that your doctor had you sign another consent after the anterior procedure day so that he could do the posterior procedure. So, what if you said no?




You know, I have thought about that....I guess my lumbar would have fused at 70 degrees with the spacers intact....I remember it, and its also stated in my hospital reports. There was no decision at that stage, it was Admiral Farragutís ďdamn the torpedoísĒ attitude that was in my mind as I walked in. Sometimes, we have to take risks, big risks.(I attended Farragut many years ago).

I had a long post written up for you the other night but deleted it. This happens sometimes....I can change my mind or go back and forth.

I believe that you are at the stage where you need to sit and talk face to face with one of us posties....We are all over, perhaps talk to Gail or Jenee in Sisters, Ore. Or come down here or in the bay area, go talk to Linda. Meets and greets at scoli meetings are also highly advised for support.

-------------------------------------------------------------------------------------------------------------------------------------

Its nice to know if and what effect my posts have had on those making decisions.....and Iím glad that it helped many of you in your decision making and recoveries. Not that surgery is the correct answer, more of a understanding of what it entails, and at least making an informed semi educated decision. Its an important decision, probably the most important we can make in our lives. You can run in and have a rotator cuff operation, or a cholecystectomy, or a knee job, but scoliosis surgery takes time in our minds....we need to feel somewhat comfortable with it all. Accepting the changes, the lack of mobility, and being prepared for recovery is essential.

Thanks for the appreciation and thanks for all of your posts.....I have learned much from all of you, thinking about all the different subject matters.
Ed

Doodles
01-31-2013, 02:00 PM
Ed--
Congrats on your 5 years and for being such an important member of the forum for positive attitudes and good, factual information. Kudos too to staying so active here.
I will be 4 years at the end of March and only weigh in on rare occasions it seems--and I'm retired. No excuses. I have found since Nov. I can get down to pick things up off the floor so much better and have fewer aches and pains than before. I had returned to taking Synthovial-7--hyaluronic acid--at about that time so now I'm uncertain if it was that or just time. I had taken this pre-surgery--along with everything else I could come up with that might work for pain. I definitely thought it helped. It dawned on me in Nov. when I was having sciatica pain again that I used to take it.
In case this might help anyone, can get on line and on Amazon. You put a dropper full of the tasteless liquid in water. Super easy. Not cheap though.
Thanks again Ed for all you do! Janet

loves to skate
01-31-2013, 08:11 PM
Hey Ed,
I just got back from a Clipper Ship cruise in the Leeward Islands leaving and returning to St. Marteen. What a great experience. I am also five years post-op in December and I am so grateful to be able to go places and do things I never could have done before my surgery. I still hope to meet you some day. You are a model of inspiration to so many people on this forum. I'll drink a toast to that - how about a margarita? Ed, you are the best.
Sally

titaniumed
02-01-2013, 11:31 AM
I'm like you and wish I'd had surgery when I was younger. I tried several times but two surgeons and one doctor told me I was too old. Of course I wasn't too old but it's a shame that those professionals weren't willing to at least tell me why they thought I was too old. I believed them. I'm glad I didn't get surgery with any surgeon who was not a specialist in scoliosis.



Ohhhh......Now Iím emitting grumbling noises....(Iím a noisy guy lol) and feel sorry for those that might have done this route, climbing Mt Everest is not for your everyday climber! Your lucky to have stumbled into Dr Hey....and its probably a really good thing we waited....Yes, earlier might have been better, but our timing and selection and faith, and belief in our surgeons worked out....Things always have a way of working themselves out no matter how difficult our paths might be. Creating a path of optimism is the only way......there is no sense in having negative thoughts.

We might have lived in a time of confusion regarding scoliosis years ago, but now its different....We know certain basic things, being too old is not something that one should hear from anyone anymore. They operate on patients just shy of 80, possibly older.... but I wouldnít use this as an excuse IF the person ďreallyĒ needs scoliosis surgery....I also am wary about thinking that a particular method of non surgical treatment that just might improve a curve or make a person feel better, buys time, when in fact their diagnosis of degeneration like in my case is in fact the biggest problem. You see, you really CAN live with big curves, but you cant live if your spine is rotting away, osteoporosis takes hold, or nerves become encapsulated in bone etc. I donít think the untrained can diagnose these things, and Iím not sure if the trained are totally sure on some issues. Going in on a surgery and discovering a major problem after getting in and backing out is devastating!

Timing is everything.

Ed

jrnyc
02-01-2013, 02:13 PM
Ed...congratulations...i am so glad you are pain free and able
to fully enjoy all your activities!

Janet....i never heard of taking hyaluronic acid by mouth....
i have been offered shots (for bad knees), but haven't had any yet...

how does the stuff help when taken orally....? i thought it had
to be injected right into where the problem is...????

jess...and Sparky(age 6 tomorrow)

Doodles
02-01-2013, 03:29 PM
Jess--
It just lubricates the joints wherever needed I think. I have a finger that developed arthritis about 4 months ago--weird. One date it hurt and then swollen joints etc. Since I've taken it THAT for sure has gotten less swollen and doesn't hurt much at all. Knock on wood I also have not had sciatica pain which seemed to crop up every 4-6 months and last for at least a couple weeks. We shall see. It might be worth a try. Obviously, I had to quit all meds before surgery, so I'd really forgotten about it.
The company must be quite small. The # on bottle is 866-318-64150 but someone--like a real live person--always answers. They are extremely nice and helpful. One time a few years ago I was desperately out of it and the guy actually said he would drive 1/2 way to get it to me. It's around Kansas City MO about 3 1/2 hours from here. I said that wasn't necessary but couldn't believe he offered. It is now cheaper on Amazon. Can't remember price but they only have it in 1 oz. bottles so I started just ordering 2. Probably lasts about 1 1/2 months. May take that long or more to really see differences. Janet

titaniumed
02-01-2013, 04:03 PM
Sally

Sounds like a great trip! I was in Curacao once and in Utila on a dive trip....Where they get these names from, I donít know. LOL I would never dream of naming a chunk of sand Utila, but they had pretty good imaginations back then.....

I cant drink Margaritaís. Too acidic for me.....Iím more of a wonderful wino these days.....

Its is good to have our lives back.

Someday, I will come to NC to dive......Morehead City of course, and in August since I hate cold water.

Ed

jrnyc
02-01-2013, 04:05 PM
thanks for info, Janet...
i will look into it...

jess

Pooka1
02-01-2013, 04:15 PM
In horses at least, oral joint supplements cannot work because they do not pass through the intestines into the blood stream. Plenty of people including myself give their horse IM injections to help with joints. Vets directly inject joints. If it could be done orally nobody would be injecting their horses. The oral stuff is a huge scam in the horse world.

I assume it is the same with people assuming the gut characteristics are similar in this regard.

jrnyc
02-01-2013, 04:36 PM
hmmmmm...
so i wonder about the human world...
there are so many different kinds of supplements..
i looked up the hyuralonic stuff online...
general cost seems to be around $50 or so a bottle of
the capsules...
it also comes in cream form...
and as injections, some form of it is cosmetically used
as filler (aside from the injections for inflammation as in
knee injections)
interesting stuff....must be quite versatile...

sorry for hijacking thread, TiEd

jess...and Sparky, almost age 6

JuliaAnn
02-02-2013, 02:04 AM
...Things always have a way of working themselves out no matter how difficult our paths might be. Creating a path of optimism is the only way......there is no sense in having negative thoughts.
... you really CAN live with big curves, but you cant live if your spine is rotting away, osteoporosis takes hold, or nerves become encapsulated in bone etc. I don’t think the untrained can diagnose these things, and I’m not sure if the trained are totally sure on some issues. Going in on a surgery and discovering a major problem after getting in and backing out is devastating!
Timing is everything.

Ed

You are so right about the timing. I marvel at the timing of my surgery. We just happened to live in this city where Dr Hey practices and we just happened to have good insurance last year. Also I just happened to end my job early last year running our little construction company because our sons were no longer interested in working for us; my husband has another full-time job in construction with health insurance so this was no loss to us. Pretty amazing how things do work out. And I just happened to injure my back which forced me to quickly make the decision to get surgery and get it over with.

We were in the middle of refinancing our home so I spent the month and a half before surgery getting the house ready for appraisal. All the various home improvements kept me super busy and I barely had time to think about the surgery. I'm amazed that I survived that, walking around with a collapsing spine and a popped disc for so long. My MRI description read "severe levoscoliosis of the lumbar spine... severe degenerative disc disease... Modic type degenerative endplate changes... fluid in the intervertebral disc space... multilevel degenerative changes... severe disc height loss..." etc. Pretty ugly. I actually thanked God for my injury because it took the decision out of my hands and forced me to get the much needed surgery.

And I also agree with you about a positive attitude. I've seen documentaries and read articles that say those who maintain a positive attitude recover faster from surgery than those who don't. That first week in the hospital was pretty rough but I managed to keep my upbeat attitude, joke with the nurses and make my kids feel confident I was fine. I have good memories of the week at the hospital, despite the brutal pain. On day five, I insisted my son and his wife go down to the cafe to grab a bite to eat and my little four year old granddaughter could stay in the room with me. Not exactly a wise decision because my granddaughter couldn't figure out the bathroom so I had to ring frantically for a nurse to help her. So there I was, after major spine surgery, babysitting on day 5 from a hospital bed. Oh my gosh, I heartily laughed about that!

Today marks the end of my fourth month post-op. I still need a small dose of pain medication once a night when my back hurts too bad when I first lay down. But most days I'm up and moving around and it feels fantastic to have no fear of further injury to my back. The freedom is amazing. The steadily decreasing pain is wonderful. I feel like I've stepped back over 10 years already and it's only been four months since surgery!

I have never been skiing but I've wanted to ski my whole life. After my surgery, I cried that I would never get to at least try skiing. And then I found this website and read about your skiing adventures. You have given me great hope that the next years of my life are going to be richer, fuller and more adventurous than I could have dreamed. The next decade will be better, with more options, than the decade I just lived through. How cool is that! Thank you for sharing so much hope.

[Edited to apologize if my post is considered "hijacking a thread". I'm a bit new at forums so I'm still learning how to contribute.]

scooter950
02-02-2013, 10:44 AM
well, let me chime in : congratulations TiEd ! what a milestone! and then to hear about your activity level post-fusion: makes me jealous. my day will come, and this forum continues to inspire and educate and forewarn me. Thx for sharing, I can't believe you don't remember four days- (well i believe you - but it's incredible) that's my worry: waking up in ICU, intubated - but you have no memories of that!! Oh, and you must have been under the influence of narcotics, so signing a second OR consent when under the influence: illegal and non-binding. but too late now! LOL they should have had you sign both consents PRE op! may you continue to fly straight on all future endeavors! God bless!

titaniumed
02-02-2013, 01:46 PM
I can't believe you don't remember four days- (well i believe you - but it's incredible) that's my worry: waking up in ICU, intubated - but you have no memories of that!! Oh, and you must have been under the influence of narcotics, so signing a second OR consent when under the influence: illegal and non-binding. but too late now! LOL they should have had you sign both consents PRE op! may you continue to fly straight on all future endeavors! God bless!

I wasn’t intubated in ICU.(tracheal intubation) I don’t think its necessary unless you are being operated on??? I did have an NG tube that ran through my nose down to my stomach. How my consciousness was being controlled, I don’t know?,(through IV’s most likely) and certainly didn’t sign anything upon being just woken up from a deep sleep....It was a few seconds of verbal communication and was like a dream. General anesthesia is a very interesting subject, there are a few levels or stages and I believe they use around 40 different chemical compounds to control these levels.

http://en.wikipedia.org/wiki/Tracheal_intubation
http://en.wikipedia.org/wiki/Volatile_anaesthetic

I have had doctors go down my throat with an optics device while awake, not on meds. They were looking at my epiglottis which isn’t that far down really, it’s the entrance to the trachea. I didn’t think it was a big deal.....but then I have had all sorts of things done to me at the hospital. (smiley face) All these things are scary if you have never had them done to you.......now for me, its not that bad. Experience makes you a little braver each time I guess.

I was kept out for a few days since I was told I wouldn’t be able to withstand the pain of having such an invasive anterior done. They performed partial corpectomies on L1-Sacrum which is where they remove the damaged endplates on the vert bodies. Oversized 13mm PEEK plastic spacers were fit in from the front, and BMP was used in sponges in these spacers. My vascular surgeon was also looking for cancers, which I guess is a little bit invasive....Good news, no cancer....AND its not in my family.....

Thanks for the congratulations.....success was always part of the plan, I wouldn’t have it any other way.

Ed

titaniumed
02-02-2013, 02:00 PM
Scoliosis surgical teams are the the best of teams. The best of the best.

I have read stories about waking up, and so forth and so forth. I donít think that this is something that we need to worry about. I was knocked out quickly, and never saw the operating room. I have had a few other operations and it was also the same story.....

It was just like going to sleep.

Ed

Irina
02-02-2013, 11:20 PM
Scoliosis surgical teams are the the best of teams. The best of the best.

I have read stories about waking up, and so forth and so forth. I donít think that this is something that we need to worry about. I was knocked out quickly, and never saw the operating room. I have had a few other operations and it was also the same story.....

It was just like going to sleep.

Ed

Ed, you made my day by saying that you never saw the operating room. I don't want to see the operating room! I hope they knock me out while my husband is still with me or at least give me something to make indifferent. I told Dr. Hu that I don't want to see the operating room because it will scare the c... out of me. I will say the same to everyone when I check in...

mabeckoff
02-03-2013, 12:28 AM
Ed, you made my day by saying that you never saw the operating room. I don't want to see the operating room! I hope they knock me out while my husband is still with me or at least give me something to make indifferent. I told Dr. Hu that I don't want to see the operating room because it will scare the c... out of me. I will say the same to everyone when I check in...

Just make sure that you keep telling them that you do not want to see the OR. I have told them that and with none of my surgeries have I seen the OR. I remember being in pre-op and then being in recovery

JuliaAnn
02-03-2013, 12:57 AM
Scoliosis surgical teams are the the best of teams. The best of the best.

I have read stories about waking up, and so forth and so forth. I don’t think that this is something that we need to worry about. I was knocked out quickly, and never saw the operating room. I have had a few other operations and it was also the same story.....

It was just like going to sleep.

Ed

You're right, Scoliosis surgical teams are remarkable.

Unlike some people, I did see the OR room. Dr Hey was very surprised to find out later that I remember seeing it. Apparently it is rare that someone is still lucid as long as I was. But it wasn't scary at all, it was a very beautiful thing to me! When I was rolled in, the room was buzzing with people. I felt absolutely cherished, as though I was the very center of their universe at that time. I was relaxed and the whole place felt dreamy and exciting. I counted 7 people within my view around the room and they were all very preoccupied getting stuff ready. Some were talking cheerily to each other as they were pulling stuff out of boxes, moving stuff on shelves, rolling equipment. I felt enormously valuable to them. It was a fantastic feeling.

I was asked what my name was by a woman to my right. I answered. I was asked what day it was and where I was. I answered. Then I was asked "And what are you here for today?" I thought that was a crazy question and sure hoped that THEY knew the answer to that one! ha ha I said "They're going to make me straight," at which point everyone burst out laughing. I didn't get the humor at the time but it was jolly good hearing them all laugh. "Well, that's right," a couple people said. I was happy inside that everyone was in a good mood. I know it's might seem strange to say this but I felt Loved. While people were still chuckling, I was out instantly.

It actually never occurred to me to be afraid of seeing the OR. I was looking forward to the surgery so much because I knew it would repair me. Dr Hey often mentions his team in his blog and how fantastic they are. Getting just a teeny glimpse of them on their home turf, all excited to do a great job, how they are bonded together with purpose and care for each patient, makes me understand why Dr Hey appreciates and enjoys his team so much.

Surgeons are very special people. They truly do want to help people and they consult with each other and study and work toward giving the very best outcome possible.

By the way, if I had specified that I wanted put out sooner, I'm sure they would have done that. So for those who don't want to see the OR, the staff is ready to oblige. Personally speaking, I'm very glad I got to experience something so rare.

Irina
02-03-2013, 04:51 PM
Thank you, Melissa and JuliaAnn. It's a beautiful story about seeing the OR, but knowing myself, I'll keep telling everyone to knock me out before they roll me in.

When I get blood tests done I always turn my head away because I don't want to see a syringe sucking out my blood. I remember the first time in my life when I was getting blood test done from my vein... I was pregnant and scared of this basic test ha-ha. I was looking at them inserting a needle, saw my blood and the next thing I remember is being on the floor and the nurse sticking something awfully smelling in my nose and saying: "Gee, how are you going to give a birth, girl?" :-) Since then, I always turn my head away. So, I am pretty sure that seeing the OR would not give me a warm a fussy feeling.

Now, my daughter, who is majoring in biology and wants to be a dentist, takes an anatomy class and tells me stories about dissecting this and that. I don't even want to hear that, but she finds it interesting and not gross at all. I asked her if she passed out the first time she was dissecting something and she just laughed at me. She totally amazes me.

titaniumed
02-03-2013, 08:38 PM
A few years ago when Crystal went into med school, I was treated to the cadaver room at UNRís medical school. They had a spine sawed perfectly down the center in the lumbar area so I could see the nitty gritty.....they study anatomy the first year. She will graduate in May and start her 3yr residency which is supposed to be even harder than medical school.

It was one of the most AMAZING things I have EVER done. The body is extremely complex....

I would love to attend a scoliosis surgery.....that would be really neat.

Ed