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CStadler
01-09-2008, 11:25 AM
I am not very happy right now but I don't see any other options........
I saw my surgeon last Friday and he said the tilt I have will not improve with time because it is a structural problem. The answer is an osteotomy (remove a wedge of bone). He feels it will correct the problem quite nicely but the thought of going through this again is a little overwhelming.
I know I can't live with the degree of tilt I currently have as it puts a huge strain on my left hip.
The surgery will be scheduled in the next couple of months. :(
I lost a lot of blood during the first surgery and have had 2 hematologists check me and can find nothing wrong. That is another concern. Like I said not very happy!

trulyaries
01-09-2008, 12:44 PM
Carol -
I think I know how you feel. I had my third surgery last May, now fused T4 to S1, thinking that would be the last of my surgeries. But I'm facing a fourth - an anterior surgery because I am unable to stand up straight. I also have a slight tilt to the right, but that seems to be getting slightly better. If that surgery doesn't get me to a position that I can live with I don't know what I will do since I will soon be 65 years old and can't keep doing this! Also, I don't have a blood problem like you do but I had some breathing and blood oxygen problems the last time.

I don't have any advice, but lots of sympathy for your concerns and your dismay at having to go through it all again. Best of luck to you.

CHRIS WBS
01-09-2008, 01:26 PM
Admittedly, this is my greatest concern regarding surgeryÖthat it may not stop at one. And I canít help wondering if this is because itís not done right the first time around or is it the ill-fated nature of this beast.

Chris

Singer
01-09-2008, 01:56 PM
I'm sorry to hear this. I also HATE to hear this. I hope it is just a small procedure -- compared to the original fusion, of course. No surgical procedure is small, but you know what I mean.

*sigh*

Robbie
01-09-2008, 02:09 PM
I'm sorry you have to go through another operation. I really hope it goes well for you.

I still have a 'tilt', but I'm not sure I want to do anything about it. My shoulders are aligned, but my torso curves inwards... if that makes any sense. It's only really noticeable when I have no top on. My doctor said that to fix that, it would require fusing the rest of my spine, which could cause me problems when sitting down. I figured that it would be best to leave it since it's not causing me any pain.

SusanGP
01-09-2008, 03:43 PM
Carol, I too am so sorry to hear that you need another surgery to help your tilt. I can certainly understand you are not very happy. I will keep you in my prayers. Let me know when it is scheduled and I will get you on our prayer chain at church. I truly believe in the power of prayer.
Like you I lost a lot of blood during my first surgery (posterior). My daughter said that they had to replace almost all of my blood and body fluids. I do remember for several days they were still hanging bags of blood up to drip into my IV. (Yuck).
Like Chris this has been one of my greatest concerns regarding surgery...that it may not stop at one. Everytime I voice that concern my family gets on my case and tells me to remember that I couldn't walk (without platform crutches) before the surgery and now I am walking fine. I still have some concerns to talk to my doc with since no one in his office returned my call last week. Since my appointment is next week I am just waiting. It just seems to go on and on doesn't it.
I know it is overwhelming but hang in there. We are all pulling for you. I wish we could get together and give hugs to each other but at least we have this forum and know that we care about one another. God bless you Carol,
Susan

Linda W
01-09-2008, 08:35 PM
Carol,

I can only imagine how disappointed you must be with the prospect of another surgery. It is a fear that many of us share. With a few months notice, perhaps you can beef up your hemoglobin level and prepare yourself mentally and physically so you will be as strong as possible -- just like the warrior you have already proved yourself to be! All of us will be in your corner. Would it give you a smile to think of all of us in "war paint" on your surgery date? I know that is probably "politically incorrect", but it could make for a terrific visualization as you go into the OR.

Take care,
Linda W.

trulyaries
01-10-2008, 09:51 AM
Admittedly, this is my greatest concern regarding surgeryÖthat it may not stop at one. And I canít help wondering if this is because itís not done right the first time around or is it the ill-fated nature of this beast
I have been told by my doctors (and have read) that scoliosis surgeons always try to do the minimum they think is necessary since it is such a horrendous surgery and affects one's life so much. Sometimes it works, sometimes it doesn't, and we can't see into the future to predict what will happen. If I had known then what I know now, with my first surgery (T4-L4) I would have told them go all the way to the sacrum and be done with it, but I couldn't foresee what would happen. I choose to believe it is the "ill-fated nature of the beast" perhaps because I can't bear to think that all of these surgeons can't get it right in the first place.

Geish
01-10-2008, 10:11 AM
I have nothing but praise for my surgeon, Dr Ganocy in Los Angeles! When he told me he thought he would be able to stop at L4 instead of the sacrum but he wasn't sure I told him to make the decision when he got in there. I let him know he was the one with the training not me and I had complete faith in him. I told him to make the decision as if he was operating on a loved one. Well he decided that it had to be to the sacrum while he was in there. He knew that if he stopped at L4 there was a huge chance we would be back in a few years revising the surgery. Yes my life is a little more difficult being fused to the sacrum but I will adapt as I heal more. As it is right now i can already do more than my physical Therapist and home care Nurse thought I would be able to do! I was even cleared to drive at 2 weeks post op if you can believe that! I haven't yet, but I could if I wanted to. I like to think Dr Ganocy is in the majority and not the minority as far as surgeons go. I would hope the surgeons would be aggressive when they go in there and fix our backs.

CStadler, I wish you nothing but luck with what ever you decide to do.
Alicia

CHRIS WBS
01-10-2008, 10:58 AM
I had complete faith in him.

I donít have complete faith in any doctor. Theyíre only human and doctors make mistakes all the time. I prefer instead to put my complete faith in God. Iíve asked God to steer me to the surgeon who is right for me, and then I will pray like the dickens for the best possible outcome.

Chris

CHRIS WBS
01-10-2008, 11:35 AM
I truly believe in the power of prayer.
So do I. So much so especially after witnessing a recent miraculous event in my family. My handsome 37-year-old nephew was involved in a near fatal truck accident in Rhode Island just before Thanksgiving. He suffered a broken neck, internal injures, a shattered leg and a mangled leg that was at serious risk of amputation. Being a Catholic I offered all my rosaries, masses and Hold Communions for his intention. I begged God to save his leg. We had a round-the-clock prayer chain going for his intentions. Miraculously the fine orthopedic surgeons at Rhode Island Hospital rebuilt his leg with the insertion of a rod, skin grafting and plastic implants to replace lost muscle mass. All that remained of his leg was bone that was filled with debris. Infection would have meant amputation. He underwent five operations within three weeks, and he is currently in a rehab facility outside Boston. I spoke to my sister last night and she said doctors are astonished at the amazing progress he has made. Heís off all pain meds and hopping around with a walker. None of this would have been possible without divine intervention. Praise be to God.

Chris

CStadler
01-10-2008, 11:43 AM
I too have faith as well as the knowledge that my surgeon is one of the best in Western Canada. I feel incredibly fortunate to have been able to get him for the surgery.
He explained in the begining that he would not advise a partial fusion as it would probably mean going back in at a future date, so I knew going in that it would be to the sacrum. However at L5 he said I had a very stiff hard to adjust angle and he said they had a lot of trouble with it. That is where the problem lies. It was corrected only as much as he could manage. He will go above it and do the osteotomy as he says it can not be straighten anymore than he has already done.
I want to thank everyone for the words of encouragement and prayers.
Linda...thanks for the visualization, you made my day!!

lelc2002@yahoo
01-10-2008, 12:14 PM
Chriswbs-I am so happy for your nephew's successful surgery and that he will walk again. I also wish you a most successful surgery! Ly :)

Carol-I wish you all the best on your upcoming surgery. I hope it is an easier recovery for you. Ly

crepehanger
01-10-2008, 12:37 PM
Bless both of your hearts (Carol and Trulyaries) for facing yet ANOTHER surgery. We would hope these won't be as bad as the original surgeries, but I sure understand the reluctance to do it. I often wonder how many of us will need to be "tweaked" to get good final results on our backs. When your quality of life is not where it should be, then I can see where you would not have much choice. Let us all know how you do....

Singer
01-10-2008, 01:08 PM
Dr. Boachie told me upfront that there was a 50-50 chance that he (or someone) would have to go in and extend my fusion, which stops at L5, to the sacrum. When I pressed him about that, he said my fusion is short enough (starts at T10) that I might get "20 good years" out of my present fusion. By the time I'm 72 (20 years from now), who knows what new technology they may have that will make revision surgeries more successful and easier to bear.

All I know is, I am going to baby the hell out of my back for the rest of my life. No horseback riding, weight lifting, jogging, or tennis for me.

Chris -- I'm happy for your nephew. Thank goodness he's okay. I wish I could have the faith that you have. I have a BIT of faith but I still tend to regard life as a bit of a crapshoot -- especially when it comes to this surgery!! I tried to up the odds of a good outcome by picking a world-famous surgeon. Only time will tell if it has truly paid off.

CHRIS WBS
01-10-2008, 04:03 PM
Thanks Lynne and Chris. Yes, I could not have gotten better news about my nephew.

Chris, if you can get 20 good years with your fusion as is, that's darn good I'd say. And I don't blame you for not wanting to participate in activities that might compromise the unfused portion.

Chris

SusanGP
01-11-2008, 05:13 PM
Chris,
Thanks for sharing the wonderful news of the "miracle" your nephew has/is experiencing. I have heard so many similar family miracles that happened when the person who needs help is added to a (one or many) prayer chains.
I give praise for his healing.

And Singer I too plan on trying to baby my back. I keep trying to do too much though. Each time I feel a little better (less pain and more stamina) I do something stupid. I know I won't try jogging, horseback riding, or any of that stuff though. Keep on healing and I will keep all of my scoli friends in my prayers!

My stupid thing for yesterday - I drove into town to get my hair cut. I leaned back in the sink even though the hairdresser suggested cutting it dry or spraying my hair. Both of those things triggered PAIN. Then to top it off I stopped to put gas in the car for the first time since surgery. I had to bend down to the left floor of the car next to my seat to unlatch the gas tank opening. I kept trying to ask the station attendant to unlatch it for me but he acted like he didn't hear me and I was a nervous wreck anyway. So I bent down and pulled on the latch. OWWWW! I spent the rest of the day at home resting. Someday I will learn exactly what BEND, TWIST, AND LIFT means.

Best to all of you,
Susan

Karen Ocker
01-11-2008, 07:06 PM
Chris, if you can get 20 good years with your fusion as is, that's darn good I'd say. And I don't blame you for not wanting to participate in activities that might compromise the unfused portion.Chris WBS

In my case I got 40+ years from an old scoliosis surgical technique that did not use hardware-it involved not walking for a year!!! I did very well until age 59 when my fusion had weakened over the years because it was not supported with hardware. This is pretty darn good wouldn't you say?? :cool:

I sympathize with anyone who needs a redo. My original surgery(1956!!) was supposed to be permanent. My dentist/oral surgeon cousin told me even dental restorations (crowns, fillings etc.) are not perfect and need redoing. :eek:

I don't even go there regarding my revision surgery.