Yea...it's over!

[bsprings]

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]

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]

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]

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]

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]

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! )

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

[berta@aloha.net]

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]

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]

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.

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]

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 ....

[berta@aloha.net]

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]

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]

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]

If I knew then what I know now ........

What? Are you saying you would re-think having the surgery?

Chris

[lelc2002@yahoo]

L-5

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