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berta@aloha.net
04-16-2007, 11:28 AM
Aloha all! Well, I'm back, 2 1/2 weeks post op and doing pretty good. It still feels like it will take forever to feel "normal", but what should I expect in such a short time?! Thanks for Suzy, she kept you guys updated, since somehow I just couldn't face posting nor even reading the forum. (why???)
My surgery went really well, fused from T5 to Sacrum, so lots, but in the end, I think I'll be much happier than only getting the bare minimum, which delt with pain only. Heck, if I'm going thru all of this, I sure don't mind some cosmetics too. Dr. Gorek with Kaiser in Oakland is wonderful for sure.
I'm wearing a brace, and not loving it, but standing or sitting without it feels too weird. Laying flat on my back is my most comfy position, but you can't do that forever, or forget getting stronger. My brace seems to pinch a couple of nerves when I have it on for too long. I guess this is all a process, so just figuring it all out as we go! Plus the meds and constipation! Hate it! Anyway, all in all, I'm doing great, I think.
I would love to hear from you guys!

Houston Curves
04-16-2007, 12:22 PM
That is wonderful news! Welcome home! My husband and I honeymooned in Hawai'i and I can't imagine a place more conducive to healing! Congratulations on being 2 1/2 weeks post-op...I can't wait to be able to say that.

Ann

Jacque's Mom
04-16-2007, 03:28 PM
Berta, great news! So happy for you. Take care of yourself, rest, don't overdo it, follow the doctors orders, take your meds so the pain doesn't catch up to you and you'll be a new person in no time. The worst is over. All the best to you. LYNN

sccrm08
04-16-2007, 07:02 PM
Welocim Back Berta

I'm so glad everything went well. When your feeling better, I sent you a PM with some questions I have, as I will be having my surgery at Kaiser in Oakland in a few weeks.

Thanks,
Patty

LEELEE85
04-16-2007, 07:33 PM
Hi Berta,

Welcome back... I'm glad everything went good for you...

I sent you a PM...


Luv Lee :)

Suzy
04-16-2007, 07:46 PM
Yea Berta!

So glad to see you update everyone on your own for a change!! I was getting tired of it! Kidding............. you know I love ya! You are on your way and each day gets better. I know you are experiencing this and it is great for those facing surgery to hear it first hand from you. I will be in touch. My best wishes always.

abhbarry
04-16-2007, 08:36 PM
Glad to hear from you. We've all been thinking about you and look forward to hearing about your ongoing recovering. Take it easy!

Best,
Anya

Shari
04-17-2007, 12:50 AM
Hi Berta,

We appreicated the updates from Suzy, but it's great to hear from you, and so soon!!!

My recovery was a learning process also, just be safe, take it slow, but walk as much as you can. Don't get down when you have a bad day, we've all had them.

I had a love/hate relationship with my brace, I'm glad I had it, but it was wonderful to get out of it.

You're doing great!!!

Shari

Singer
04-17-2007, 06:36 AM
Go Berta! It's so great to hear from you -- I'm so glad everything went well. Keep us updated on your progress!

All best,

dalmatica
04-17-2007, 07:40 AM
:D CONGRATULATIONS!!!! Now all you have to do is take it easy (not too easy) and get well! I learned to really like my brace. It made things so much easier. Please keep us posted on your recovery or just come to chat when you are bored which will probably be a lot. ;)

Krysi - 13 days until my revision :eek:

Cakedec
04-17-2007, 08:20 AM
Berta,


So glad to hear that everything went well and you are home recovering. All of the worst is behind you and every week will be a little better from here on. All of the problems you mention sound very familiar to us post-ops and are a temporary part of the healing process.

Take your meds and get as much rest as your body needs. Let others take care of you for a change and don't worry about your house!! We'll be watching to see how your recovery goes.

Deb
surgery 7/24/06
T5-L5
for s curve T72,L77
50% correction
DON'T WAIT TO GET STRAIGHT!

bsprings
04-17-2007, 09:42 AM
Berta,
Aren't you glad it is overwith? I am 4 months post op and fused T4-S1. I am starting to live a "normal" life again and it feels great! I'll be thinking of you-so glad your surgery went well!
Cathie

CHRIS WBS
04-17-2007, 10:18 AM
Berta,

So happy to hear that your surgery went well and without any complications. Best wishes for a smooth recovery and then you can move on with your life.

All the best,

Chris

berta@aloha.net
04-17-2007, 10:45 AM
Thank you everyone for so much positive feedback! Everything is starting to sink in. I did it!! Oh my......now just the paitence, and all your advice, to take it easy, WALK a lot, (it becomes so comfortable to just take that brace off and lay flat). My mom is with me and has re-taught me to knit, so I've found a way to knit laying on my back! I'm knitting a baby beanie for my new grandchild due in Oct. Plus watching this whole horrific event about the massacre at Virginia Tech......so so terrible, so sad.
Was sitting hard for anyone? Since my curve was mostly in my lumbar, the doc said he had to "reshape" my spine to give me a little of a sway which I didn't have before, so it feels like my lower back doesn't know what to do and my butt is being pushed way out. He said I only "feel" that way, but look normal. Hope my muscles and spine get use to this new posture! My lower back gets so exhausted after just a short while sitting in my brace. It sure looks better in the mirror though, but feels so strange!

Linda W
04-17-2007, 04:57 PM
Berta,

It is really great to hear from you and to know that you did it and are now firmly on the road to recovery!! Learning to knit while flat on your back is quite an accomplishment! Surround yourself with happy people and thoughts to keep you upbeat while you recover. If you have not already read it, Nora Ephron's wacky collection of essays, "I Feel Bad About My Neck", is a quick and funny read and easy to pick up and put down if your attention span is wandering.

We look forward to hearing about all your milestones!

Linda W.

brynnski
04-17-2007, 10:48 PM
Dear Berta,

You've been my current inspiration. I think Suzy told you about me, since she's been a wonderful support for both of us. I am your age, lived on the Big Island for a number of years, and am having my surgery on May 15. You are the poster "child" for doing it all in 12 hours and coming through it well!! I am loving your posts. Congratulations!!

Aloha,

Brynn

brynnski
04-17-2007, 10:52 PM
P.S. Interesting how your butt and lower back feel so different now. I plan to lie down a lot...........Even now I spend more time lying on my bed when I'm home than sitting in a chair. I love my bed! And yes, I know I'll have to walk a lot too........

Brynn

Shari
04-18-2007, 01:59 AM
Hi Berta,

I know there are alot of things that we are supposed to do, but I also think so soon after surgery, finding anyway, anything or any postion that I felt comfort or eased the pain was what I was most interested in doing. Your body has just been readjusted and I think you have to take time to adjust to that too.

Take your time and let your body heal!!! Week by week and month by month you will feel stronger and stronger. It just takes time.

Shari

berta@aloha.net
04-18-2007, 11:21 AM
Shari, yes, about any position I can ease the pain, I end up doing! Especially in the evening. It's amazing how much better I can handle walking, the brace, etc. in the am. Then in the evening, I can hardly handle being upright and the brace just bugs me!
Brynn, where did you live on the Big Island? Where are you getting your surgery and what are you having fused? I still wonder how the heck I'm ever going to feel like this posture comes natural! It sure looks better in the mirror, but feels so "forced". Guess it is, and for the better.
Have any others felt this out there?!
And I've read questions about "feeling" the hardware in your back. I sure do! It feels exactly what it is.....hardware inside my back! I'm sure you get use to it, I hope! All in all though, I'm so happy I've done this and treasure the day I can walk without so much pain, last the whole day and feel better in my clothes! I know and accept it may not be perfect (pain, etc.) but has to be better than it was. And I was getting worse by the day! I know I was facing a crippling condition for my future. Now I face such a better quality of life! The pain I had pre-surgery is gone! The leg, hip, back pain from before. Now I look forward to the surgery pain going away, and as I'm still less than 3 weeks post op, I know it will happen.

lelc2002@yahoo
04-18-2007, 12:38 PM
Hi Berta! I just got on the forum & jumped to your message. I was away to Florida enjoying the warmer weather & great sunshine! Just back last night..
I am so happy for you & you sound like you are doing wonderfully! Yes, lying down was my best position for weeks! Sitting at the computer or up to eat was too rough & I really stayed upstairs on my bed alot for quite a while.
what kind of correction were they able to get for you? did you also have a hump?
Take care and stay well, Lynne

:)

brynnski
04-18-2007, 03:46 PM
Hi, Berta:

I lived in Hilo, then moved to Waimea for several years (dry side) with a few months spent in Puako. I still have wonderful friends on the Big Island, and visit as often as I can.

Yes, I'm sure it's quite an adjustment getting used to things after surgery. Everything is so different that you must get a bit worried when some new pain or discomfort happens. I know you're taking care of yourself.

I'll be fused from T10 to L5, very similar to Suzy's fusion. I live in San Diego, and my surgeon (a great one) is here.

My son, who had a spinal fusion when he was 14 (he's now 31), said he doesn't feel his rods at all anymore. He did feel them after his surgery. I can't remember how long it took for this to go away, but I imagine it will go away for you eventually, as you heal.

Take care,
Brynn

lelc2002@yahoo
04-18-2007, 04:02 PM
Brynn-Hi-who was your surgeon?? Just curious, Ly

dalmatica
04-19-2007, 07:04 AM
I could feel my rods whenever I would sit in the lounge chair but that went away after a few months. It's kinda like starting to wear a bra when you were young. At first you could tell it was there but now you don't even know it's on. Keep up the good work! ;)

brynnski
04-19-2007, 10:27 PM
Dear Ly,

My surgeon is Dr. Akbarnia.

Brynn

dawney
04-20-2007, 09:13 AM
I am so glad that you are doing well. Listen to your body during the early stages of recovery. I am fused to the iliac crest, my pelvis and I had a hard timesitting for a while. I was most comfortable on my side. Walking did wonders for me. I remember it was a big accomplishment to walk around the block. Now I am walking my 120 lb puppy for miles.
I also am still aware that something is in my back almost like a stiffness. I think that your body will just get used to it and takes time.Be well

berta@aloha.net
04-20-2007, 11:51 AM
Hi Brynn, PLEASE be in touch next time you come to the Big Island, I would love to meet you! My daughter, who's 31, lives on the Hilo side, or if you come to Kona. (lucky no scoliosis in my kids, but as I tell them, the gene is there, so watch their kids!)
My doc was thinking of just fusing me the same you are having. T11 to L5, which was in decent shape, but he was worried about the fusion above L5 putting too much pressure on it, and then facing surgery again someday. Then, since I did have a compensatory upper curve, I asked him if going higher could help some of the cosmetics of my lumber hump, and he said IF he could, once he was in there, go higher, he would, so he did. I ended up with quite a long fusion T5 to Sacrum.
On the 23rd, I go in for my x-rays and, hopefully, my clearance to fly home on the 30th! Can't wait! I still can't imagine flying for 5 hours, even in 1st class, since the plane direct from SF to Kona doesn't have seats that totally recline. We'll see!
Also, thanks for all the encouragement about getting "used" to all the metal in my back! It's ok if I "feel" it some, it was worth the trade for the progressive curve and pain I was having!
Dawney, when did you have your surgery? What did you have fused? That's amazing that you can walk your dog. I visualize mine pulling me way too hard!

sccrm08
04-20-2007, 05:08 PM
Berta,

I have three daughters and none of them have scoliosis and I tell them all the time they will need to watch their kids. I have checked their backs myself since they were little and have the Dr., check at every physical. Hopefully they are all past the age they would get it, (21,20 and 15).

Also good luck at your appt. on the 23rd, That is the day of my surgery at Oakland Kaiser with Dr. Bains. I guess this means Dr Gorek will not be the assisting surgeon. My family will all be in the waiting area maybe youll see them.

If you find time, please let me know how your stay at Oakland Medical Center was.

Best of Luck in you recovery,
Patty

berta@aloha.net
04-20-2007, 07:04 PM
Actually Patty, Dr. Gorek very well may be assisting your surgeon, because Dr. Gorek had NO openings for my appointment! So they had to make my appt. with one of his assistant doctors that helped him post op with me, and then he will just do a "drop by" during my check up. I hope he IS assisting Dr. Bains! They are doing a series if x-rays on me right before, for him to look at, etc.

I will look for your family and I wish you all the best with your surgery!! Please be in touch as soon as you feel up to it and we can catch up. Good luck with the nurses too! Like I said, the later ones I had were great.

Take care and before you know it, you will be on the "other side". I never thought I'd be here!

Take care, Berta

berta@aloha.net
04-20-2007, 07:07 PM
Patty, I just re-read your post and it didn't seem like you got my reply to your private email I sent you?? All about my stay at the Oakland Kaiser?
Let me know.....maybe I messed up sending it.

sccrm08
04-20-2007, 11:45 PM
Hi Berta,

I think I'm losing my mind. I thought you ment the 23 of May and later when I was thinking about it realized you ment the 23 of April. My surgery is in May!!!

By the way I did not receive your PM, so I sent you another.

Thanks,
Patty

bsprings
04-21-2007, 09:53 AM
Berta-
I am fused T4-Sacrum (4 months post op) and I know exactly what you mean about the new posture! My butt sticks out now too (before people said I didn't have one!) and my "profile" looks alot better but it feels "forced" like you said. But I am getting used to it- you will too! And I too feel the hardware in my back but that is getting less noticeable as well.
Cathie

brynnski
04-21-2007, 11:19 AM
Dear Berta,

I'll certainly look you up when I return to the Big Island! I often visit Kona while I'm there. My son is the same age as your daughter. As I said, he does have scoliosis, and was fused at age 14. He is going to take care of me during/after my surgery. He said, "Mom, you took care of me during my surgery. Now it's my turn." What a guy! Of course, I don't feel that he has any obligation to me but he is the person in the world I'd most like to have there for me at that challenging time. He is a real sweetheart!

I, too, have a compensatory curve, but it is less than 30 degrees. My doctor is fusing to just below it. He doesn't seem concerned that this will be a problem in the future. But he does admit that there is over a 50% chance that I'll need revision surgery below L5 after a number of years, since it will very likely degenerate over time. He assured me that the surgery wouldn't be so bad if I needed it. He said he has done revision surgery on a 90 year old woman! I know this sounds different than what some other surgeons say. Although he could be retired by then, he has trained a group of surgeons that he says are as good now as he is. I hope he's not just being optimistic!

I thought you'd already flown home to Hawaii, and I couldn't imagine how you'd done that so soon. Have you been staying in a hotel or with friends? It must be hard being away from home. You must be a very strong person! I imagine you have a supportive and caring husband too, which must help.

Take care,
Brynn

trulyaries
04-21-2007, 11:30 AM
In reading these posts about sitting after fusion to the sacrum, I'm wondering what kind of instructions you were given by your surgeons. I'm scheduled for surgery on May 14, and my doctor has explicitly told me that for at least the first three months he wants me either walking or lying down. No sitting for more than, say, 15 minutes at a time, and no driving either for those 3 months. I will also have a brace which I'm to wear at all times when I'm out of bed. (No brace, and no specific instructions about sitting after my first two surgeries by a different surgeon.)

I have no problem following those instructions if it will ensure a good result, but I haven't seen anyone else mention these "doctor's orders." Any comments?

bsprings
04-21-2007, 09:03 PM
Dr. Boachie did not tell me to restrict my time sitting or not to drive for a few months- I am fused to the sacrum. It does seem odd that we all seem to get different instructions. .
Cathie

Shari
04-22-2007, 01:51 AM
It has always amazed me that different doctor's have such a different approach to the surgery and the recovery. I'm not knocking it, I am just curious as to why??? I realize we all have different spinal curvatures, that age plays into it, length of the fusion and maybe whether we have post/ant or both surgeries.

Even though my surgery was almost 2 years ago, I still wonder why I got so many different opinions from each doctor I went to???

I was so confused until I found this forum. It helped me know that I was not alone with my confusion. I searched and searched for a doctor, and it seemed like I knew within minutes that I wasn't going to let that one touch me. When I met the doctor that did my surgery, I had a sense of peace within minutes, and I think that's what you have to look for.

You have to feel trust in your heart with the doctor you choose, no matter what approach they take. I can't explain it, I just felt it!!! Call me crazy.

Shari

trulyaries
04-22-2007, 09:48 AM
Shari -
I couldn't agree with you more. Trying to sort through so many different opinions and approaches is mind-boggling. The same applies to exercise and physical therapy for long fusions - so many contradictory approaches!

This time around I felt better because the two surgeons I saw were completely in sync as to my diagnosis and surgery recommendation, although the one who is doing the surgery was the second one I saw, so I didn't have an opportunity to bounce his post-surgery instructions off the other doctor. I do have a girlfriend who had a similar, but not identical, surgery with him, and she was given the same instructions. Hers was more than 6 years ago, and she tells me she still has instructions from him to get up and walk around if she has been sitting for 30-45 minutes. I guess it makes sense not to put too much pressure on the sacrum while it heals. (You'd think I have enough padding back there to protect it! :D )

Linda R. - if you're reading this, have you come across these post-surgery instructions anywhere before?

berta@aloha.net
04-22-2007, 10:55 AM
I have my 1st post op appointment with my surgeon (less than 4 wks) tomorrow and will ask him about sitting, for how long, since I'm fused to my sacrum. Problem is, I hope to be flying home to Hawaii next week! (1st class, thank goodness) So I guess I'll sit for take off and landing, then stand, sit, stand, sit, etc. Unfortunately, the 1st class seats on United from SF direct to Kona are more like business class and don't fully recline, but maybe with a few pillows at my lumbar, I can't lay "fairly" flat. (????) We'll see!!
Yes, it is confusing and interesting that we all get such different post op instructins!

brynnski
04-22-2007, 01:31 PM
Dear Trulyaries,

I just read some of your old posts. I'm sorry to find out that you're one of those who has had L5 go out years after a fusion. Why didn't your first revision surgery work? How are you feeling about having surgery number 3? You sound like you've been dealing with it well. I'd love to hear more of your "story."

Brynn

trulyaries
04-22-2007, 04:54 PM
Hi Brynn -
A short history. My very first fusion (T4-L4) worked just fine. There was no pseudoarthrosis. Although I have never been without pain since and am still on anti-inflammatories, after 4 years I was finally starting to feel pretty darn good. Then I developed spinal stenosis at L4-L5 and that was by far the worst pain ever. Medications and therapy didn't touch it and I was close to being in a wheelchair - so a second surgery was inevitable. When the doc said he would do laminectomy and fuse me to L5, I questioned him whether he shouldn't fuse all the way to S1, since that was the last one left. He said they didn't like to do that unless it was absolutely necessary because of the increased risk and decreased mobility. Now, less than 2 years later, I have developed flatback syndrome, which means I am unable to stand up straight. I also have nerve pain coming from the L5-S1 area. The constant physical stress of trying to stand up straight causes pain in my legs, and in my back and butt. I'm in a lot of discomfort/pain in the cervical area also, and I believe that comes from being bent over but trying to keep my head upright so I can see where I'm going. At least I hope that's what it is - I don't have too many unfused vertebrae left! My current surgeon thinks I have possible pseudoarthrosis at L5 and also that the L5-S1 disk is collapsing. If something was done or not done by my previous surgeon in 2005, the new doc is not saying.

How do I feel about number 3? Not great. I may sound like I'm dealing well, but I am quite concerned with this one because I am investing a lot in it and feel like it has to be the last one for me. I can't see myself continuing to have surgeries every few years, and too much of my life for too many years has been totally consumed by my back. As was mentioned earlier in this thread, there are so many different opinions, but I tend to beat myself up a little bit that perhaps I didn't ask the right questions, or see the right doctors, or I worked too hard, or whatever. I'm envious of people on this site who have their surgeries and report no further pain and no further surgeries. And then just when I really get into my pity party, I read another post from someone who is worse off than I am. A huge concern for me also is finances - I quit work last January thinking I needed to take just a few months off to focus on exercise, etc., and then go back to work. But I haven't been able to, and by the time all is said and done I will have been off work for almost two years. :eek:

I believe you are going to be fused to L5 (May 15?) but you shouldn't let anything I say frighten you. For every one of me, there's probably 30 or more people on this site who are fused to L5 with absolutely no problems. So take heart from that. As for me, I just tell myself every day: "It is what it is." Thank you for asking - sorry for the long post!

trulyaries
04-22-2007, 05:01 PM
Berta -
Please do let me know what your surgeon says about sitting. This isn't a huge issue for me, but I find it curious that no one else seems to be getting the same post-op instructions as I am. As far as your flight back to Hawaii, I think you'll be fine. You reminded me of a flight I took before my last surgery. When I sat too long the nerve pain was excruciating. That's exactly what I did - stand, sit, stand, sit, then go to the bathroom for the 10th time just so I could move around! I wondered what the people around me thought .... :rolleyes:

berta@aloha.net
04-22-2007, 07:24 PM
Trulyaries,
Wow...what a story. I feel so for you, and yet still have no idea what my future will bring as I heal from this surgery. Maybe, I AM glad my surgeon chose to fuse me to my sacrum at my age, 58, he said the chance I'd be in for more surgery very soon would be big, even though my L5 was still in pretty good shape. (I had most problem with L3 and L4, with mild stenosis already) I trusted him. He said the amount of mobility I would be giving up, I would adapt to and then not have to face that surgery. I WILL let you know what he says after tomorrow. Good luck with your situation and surgery.
Brynn,
Think about asking your doctor about this L5 or Sacrum decision!

LindaRacine
04-22-2007, 08:21 PM
Hi...

I believe that, at UCSF, they tell patients fused to the sacrum to limit their sitting in the beginning. There's never been a study on the subject, which is why such varying opinions from different doctors.

Regards,
Linda

trulyaries
04-23-2007, 09:52 AM
Thanks, Berta and Linda, for your responses. I try hard not to think "If I knew then what I know now" because that's wasted emotional energy, in my opinion. However, let me say it just once: If I knew then what I know now ........ :(

CHRIS WBS
04-23-2007, 10:31 AM
If I knew then what I know now ........ :(
What? Are you saying you would re-think having the surgery?

Chris

lelc2002@yahoo
04-23-2007, 01:08 PM
:) Ok- well I am to L-5(T-11 to L-5) Now that I am much more active with the warm weather, doing some seeding, gardening- bending(but I bend at the knees now out of habit), I do feel limitations. I still feel quite stiff thru that area-lower back, & very conscious of the way I move & easy on lifting or moving things. Quite frustrating to go easy for me! I used to do so much more in the yard/around the house..
do you really think there is that much difference between L-5 & sacrum movements/restrictions??? :) Ly

trulyaries
04-23-2007, 02:01 PM
What? Are you saying you would re-think having the surgery?

Chris

Sadly, before going into my very first long fusion, I don't think I totally realized that the chances were that I would be facing more surgery down the road. I would still have had that surgery, but might have been a little more mentally prepared that it might not be the last. When I was told I needed a second surgery, I was a bit shocked, but I knew a little more about it, and should have either insisted that he fuse to the sacrum or I should have gotten a second opinion. That's where I'm second-guessing. Now that I'm facing the third, I once again don't feel I have any other options. I could give you a list - it's a long one - of all the non-surgical options I have tried since the mid-1980s to try to avoid surgery. As I said in a previous post, I'm tired of my back controlling my life the way it has. I still feel I have a lot of "things to do, people to see," etc., and I don't want to spend the rest of whatever life I have left being miserable and constricted.

trulyaries
04-23-2007, 02:19 PM
do you really think there is that much difference between L-5 & sacrum movements/restrictions??? :) Ly[/QUOTE]

I'm not sure what you are asking me. I don't know - but certainly will find out - how much difference there is. For me it's way more of an issue than bending, doing gardening (which I LOVE also!) etc. - I'm used to mobility issues like that since my first surgery in 2001 because I was already fused to L4 at that time. If you're asking why I'm having the surgery now, I simply can't stand up straight. To put it in perspective, I have a handicap sticker for my car but I still can't walk from the parking lot into a store without a lot of strain and pain. And I can't go to a store that doesn't have shopping carts to lean on because I won't be able to get through it. :( I truly wish I had an option other than surgery, but I don't see it.

brynnski
04-23-2007, 07:44 PM
Trulyaries:
Thanks so much for letting us know your story. It's so hard to know what I should do. I already discussed this with my doctor, and he still says he wants to fuse to L5, not S1.

Berta,
I'll discuss this once more with my surgeon when I see him the day before my surgery, but he is saying that I might not have to have another surgery and if I do it won't be so bad. So what do I say now??

Brynn

berta@aloha.net
04-23-2007, 09:50 PM
Hi Brynn and all,
I just got back from my 1st post-op appt. and x-rays. It all looks great! I'm so happy. I'm fused from T5 (may have said T4 before) to sacrum. He got my lumbar from 78 to 23 degrees and my upper compensatory, which was less at 54, to 26. Both are "more or less" measurements and Dr. Gorek said the main thing was to give me balance of the two curves which were an S shape so if you drop a plumb line in the center of my back, the small curve I now have comes back to the middle. (does that make sense?)
He said he is VERY pleased and that my shoulders and hips are level. He still sticks by the sacrum idea, saying my movement will not be much more restricted then if he had just gone to L5 and since I will never know the difference, I will adapt my mobility to what I have to work with.
This will be a hard decision for you, but I had decided that at my age, I would do what my surgeon thought was best for me.
You could research a bit more??? or have him talk to Dr. Gorek??? Maybe because my orginal curve was worse then yours, that could have affected Dr. Gorek's desision to do this.
Good luck in your decision, berta

brynnski
04-23-2007, 10:10 PM
Dear Berta,

Congratulations on your wonderful correction!! You inspire me!

Aloha,

Brynn

Singer
04-24-2007, 07:31 AM
First of all: Berta -- congratulations on your great checkup!!

Brynn -- I am also concerned since my surgeon is also planning to fuse me to L5, unless the MRI and discogram shows my L5 to be completely shot. My feeling is, we have to let the details go and trust our surgeons. Remember that we will not have very long fusions, but basically lumbar only (mine will start at around T12 -- my thoracic curve is around 30* and compensatory only). Most of the studies showing rapid degeneration of the L5-S1 joint cite problems with long fusions (starting at T4 or higher).

We can't possibly know what goes into our surgeons' decision about how far to fuse. How can we???? I think we just have to trust them to do their job.

Best,

trulyaries
04-24-2007, 09:13 AM
Berta - congratulations! The plumb line showed my problem clearly on a standing xray with my knees locked. I am pitched forward, and the plumb line isn't even close to the middle. Did you remember to ask him about sitting?

Brynn and Chris - please don't assume that my experience is typical and get concerned about your surgeries. Chris is right that you have to trust your surgeons and hope for the best, because we can't possibly know more than they do. You have raised the issue with them, they have given you their rationale, and now you have to trust them.

I'm speaking with the benefit of hindsight in my case. Yes, maybe my surgeon should have gone to the sacrum since I had such a long fusion to begin with. If you do a search on the forums for flatback syndrome, you'll see it is usually a condition experienced by people who had surgeries with Harrington rods in the 60s and 70s. I haven't read anywhere on this site of anyone who had to have a revision so soon after a surgery like mine.

I'm going to go ahead and have this surgery with the sincere hope and belief that it improves my quality of life and that I can stop focusing so much on back issues and get on with my life. Berta, maybe I can finally make that trip to Hawaii which I have been trying to do for 20 years!

berta@aloha.net
04-24-2007, 11:15 AM
Trulyaries, and all,
Yes, I agree with you, we have to trust our surgeons, and we all have individual issues, etc.
At first, Dr. Gorek was only going to start my fusion at T11 and ignore my upper curve since it did not give me pain, but was still considering going to my sacrum (because of my age, I think) My upper curve did not cause me pain. But, at the last minute when I asked him about my lumbar rotation hump, he said once he got in there, he'd see what he could do to detotate it. (he said I was pretty flexible, so that could help)
I really had NO idea going in, that he was going to "go for it" and fuse me so high up, but I guess that is what helped with the cosmetics, which I had put in a request for "if possible!".
I DID remember to ask about sitting and he said it was OK (???), as long as I felt comfortable, that my hardware would prevent me from sitting too long and hurting myself. So who knows!!!??? He said to support my lower back on the flght and do lots of standing, sitting, what ever makes me comfortable.
Trulyaries, I hope this is your final surgery and it solves the pain and bending you have now and you get to Hawaii!! I don't blame you for wanting that quality of life, and I would do it too. If you get to the Big Island, please look me up!!
Only 6 more days, and we get to go home, finally! We've been gone almost 5 weeks!
No Brynn, we have not been in Hawaii all this time, but at a friends in Novato. The doctor had told me, figure on at least a month post op before I could fly that far.

CHRIS WBS
04-25-2007, 01:54 PM
The younger you are, the better correction you will get??? Sounds to me, Berta, like you just blew that theory right out of the water!

Chris

Suzy
04-25-2007, 02:16 PM
Hi Chris,

I really believe if you are flexable they can get the best correction. Age is only part of the equation. Did you do your bending x-rays yet?

CHRIS WBS
04-25-2007, 03:14 PM
No, but written reports I have received from the surgeons I've seen indicate my curve is stiff.

Chris

Theresa
04-25-2007, 07:59 PM
Trulyaries,

I had my very first scoliosis surgery in April 2004. I went back one year later and had an osteotomy done at the L3 level due to leaning forward and my balance not correct. My doctor didn't want to call it "flatback" because "technically" I didn't have it because of the way they did the surgery. But when you look at me, you definetly see it. I am now going for surgery # 3, just three years out from the original surgery and only 2 years out from revision. I am seeing Dr. LaGrone out in Amarillo. He says it's "flatback". But he also agrees that when you first look at my x-rays they look pretty good. Then you look at me, and look at the x-rays a little closer and harder. The bottom screws have halos around them which suggests some kind of movement. My plumb line is off. This time I'm having an osteotomy done at the L2, re-instrumentation again extending it to the middle of the sacrum (I'm already fused to S1). More than likely (90%) he said he will be instrumenting me to the pelvis. I just got my report back from my myleogram and I have two areas where the lumbar vertrebra have slipped. I'm waiting for my PT specialist to e-mail me the report in plain old english. I am going to try to get a hold of Dr. LaGrone tomorrow and see if anything is going to be different because of the report. I also have a 6th lumbar vertrebra. I too cannot walk around a store for very long unless I have a shopping cart to hold myself up with. I'll let everyone know what the report says.

brynnski
04-25-2007, 11:12 PM
Wow! I'm learning so much just from this thread.

Chris ("Singer"): Our fusions will be very similar. My posterior fusion will be just 2 levels up from yours, although my anterior fusion will be to T12. I'd been trying to find out if that was considered a long fusion but no one had answered that for me until your post. Maybe the fact that our fusions aren't so long is part of why our surgeons are fusing us to L5 instead of to S1. I hope so. Since this has been bothering me again I have decided to call one of Dr. Akbarnia's associates tomorrow to discuss this issue with him. I do agree that ultimately it is best for us to let go and trust our surgeons.

Trulyaries: I've learned from you that one surgery is not necessarily all that I might need in my life, but I also can't decide that this first one is setting me up for a lifetime of back surgeries. You're so right when you say that each of us is an individual. I really, really hope that this third surgery is the last one you'll have to go through. You definitely have my support.

Chris WBS: My lumbar curve is also stiff. Dr. Akbarnia says he will probably get over a 50% correction and hopes to get more. He says the anterior fusion will help him to free things up so he can "tork" (my word) things into place during the posterior one. There are two parts to it, straightening out the curve and de-rotating it. He may get a better correction from the first than the second but he won't know until he does it, and he is hoping for the best. I don't know why some people in the same age group are more flexible than others. I've done a lot of exercising, including yoga, but my curve is still stiff.

Berta: Congratulations for being so flexible, at my age too!! What is your secret?

Brynn

trulyaries
04-26-2007, 10:19 AM
Wow, I feel like I am getting virtual hugs from all of you - thank you so much!!

Theresa - thank you for your post. I now know I am not alone in having so many surgeries in such a short time. Sounds like you and I belong to a club that we didn't want to join! I am having surgery exactly one week before you so I will pray and hope that we both have incredibly successful outcomes.

berta@aloha.net
04-26-2007, 10:46 AM
Brynn,
I have always had a flexible spine and hips, since I was young and did some gymnastics with backbends, etc. Basically, I think one's initial flexibility is inherited and then if you keep it up with your personal type exercise, that helps.
As an "older" adult, when doing pilates, etc. I noticed I could bend further than many, such as in certain stretching positions, etc. I had lost much of the bending ability I had as a teen though. I was secretly hoping that my flexibility would help in my surgery, and I guess it did. My bending x-rays also showed it. (now, my whole flexible thing is in the past for sure, but worth it, I hope!)
I know you are going "nuts" trying to decide what to do about how far to fuse. Like I said, I will never know the difference. BUT, I do remember that even when my doctor was only going to fuse me from T11 (let my upper curve be), he was still going to go to the sacrum. At first he said just to L5, since my L5 disc was still in pretty good shape, but then he said in the same consult, that I would almost for sure be back for further surgery since the pressure of the fused part would affect that disc for sure and considering my age. So, as we were talking, he decided it would be much safer and save me the inevitable, to just go to the sacrum. I asked him about the mobility factor and he said I would be fine and there wouldn't be much difference. (????) Plus, Brynn, he may have been taking into consideration the degree of my curves, which were more than yours. (not sure if that's a factor, but you may want to find out?)
What to do!!?? But in the end, I would do whatever he said was best for me, so I do agree to do what your surgeon says, but study up, like you are!
Have you read "The Scoliosis Sourcebook"? It's a good one, not that I see anything that directly addresses this subject.
Good luck on you decision!