Deciding on Surgery

[foofer]

I really like Ed's suggestion of having an experienced scoli patient go along with patients on their appointments as an extra pair of ears. I would have loved that when I went had my one and only appt. As it was, we were two babes in the woods, not having a clue about anything much that he was saying. It was this forum that educated me, but in those early days, a second set of (experienced) ears would have been very useful.

Yes, we ought to form a committee!

A scolio would be a good spokesperson to take along as no one is more interested than we are! I've gone alone many times and have also brought family. My family members are for the most part medically savvy, but they tend to feel a bit emotional when really There, looking at the x-rays, listening to the symptoms, and hearing the doc's findings.

Fashionista, I hope you find the doc you are looking for. It sounds like you are in a good location for easy access- you are young and you found the forum in a timely fashion....all of this will be helpful.

[fashionista]

Hi, all,

I went to see another specialist in my area and went back to see Dr. Pashman. This time I have bending films and we discussed how my surgery would be.

Dr. Pashman would fuse me from T2 to Pelvis w/ fixation for my curves. He would do both anterior and posterior on me. He feels this is the way to get the best results and also avoid the future surgery.

I see few of you have fused to Pelvis. Would you share how your flexibility is, what you can and cannot do? I wonder if I would walk and look like a Roba with fuse down to Pelvis with fixation. Would I be moving like I'm wearing a brace which is very much like a Roba?

[CHRIS WBS]

That’s quite a long fusion for someone so young, but your curves are big. I’m curious. Looking at your curve measurements from 10 years ago, weren’t you being advised to seriously consider surgery then? I would think surgery then would have spared you from such an invasive procedure now.

Fusion to sacrum with pelvic fixation is really not that bad, but I’m speaking as a much older person. I suppose if I were very active and into a lot of sports, I would certainly miss the flexibility. I can assure you that you will not walk like a robot. My movements are pretty much the same. I’m just a little bit slower.

[jrnyc]

hi fashionista
if you go to the top of page to "Search" and type in "fusion to pelvis" or short phrases like that , you should find the many threads that have been started over the past year on that very subject...
i need fusion T4-pelvis, but we compromised to T10-pelvis...however, i have not scheduled it yet...i was planning on minimally invasive approach, with disc surgery to address degenerative disc disease...i actually waited for minimally invasive approach to become available for lumbar...but am still delaying...

i do know that many who have had fusion to pelvis, or rather fusion to sacrum with pelvic fixation, say they can move just fine...

best of luck
jess

[livingtwisted]

I finally went to see Dr. Pashman yesterday after not monitoring my curves for 10 yrs. The X ray was shocking. It has progrossed from 45/50 to 68/80.

Hi fashionista,

I hope you don't mind me asking (and PLEASE don't take this as an accusation) -- do you suspect anything in particular lead to your continued progression in adulthood? Have you had kids? I am not much younger than you and starting to think about what may be in my future.

Best of luck in your decision! I may be visiting Dr. Pashman myself soon.

[fashionista]

Jess

I don't think minimally invasive will work for my curves. In addition, I don't think the technique is mature yet. I think I'd rather have the surgeon whom has mastered the skills at what they have done for years than trying new things on me. Besides, Dr. Pashman mentioned that Minimally invasive surgery or if i cut corner to get the shorter fusion will not have the best result.

Janet

I'm scared that I have to fuse to pelvic w/ fixation. But it seems like it's the best way for me according to Dr. Pashman. How are you doing w/ your fusion from T2? Would you able to turn side ways? Thanks for sharing your thoughts about not fuse down to pelvis. That makes me feel more comfortable to be fused to pelvis and think Dr. Pashman is right about it. That's very helpful!

ShariMSU

I wore braces and wore cope's brace as well. But I did not wear 23 hours a day as i should had. I don't know if that makes any difference or because my curves was already at 50's, therefore it progresses as the time goes.

Please let me know about what your doctor says about the lower back discomfort .


Ed:

I did not ask Dr. Pashman the questions you had. He pretty much says that to have the best result, he would not want to cut corner doing minimal invasive surgery on me or have shorter fusion. He would fuse from t2 to pelvis w/ fixation. Therefore, I would not need future surgery. I think that probably answered part of your questions.
Dr. Pashman uses BMP, patient's bone chips and donor's bone for bone graft. I will ask him where did the donor's bone came from .


Amy:

Thank you. I'm really scared; part of me feels like I can still delay the surgery since I don't have much pain, especially when I don't or avoid to see the X-rays. I almost feel like my condition is really not that bad, especially when I can hide under the clothes pretty well. No one can really tell that I have such bad scoliosis. And the other part of me is telling me that I need to do this while I'm still young to get the best correction and just get this over with and get on my life. This forum has helped me to educate myself and make the decision easier by reading everyone's experience. THANK YOU!

Chris Wbs:

I was advised to have surgery when I was 10 years old already. The curves was around 45/50 I think. My parents were not sure about the surgery technique. Since I did not have pain at all, they decided to have me wearing the brace. Dr. Pashman said that I would pretty much get about the same correction now as I had surgery when I was 10 years old. The new surgical tenichnique has improved and developed past 25 years made much safer for spinal surgery which I totally agree w/ him. If I had surgery back then, I would have harrington rod which means I would have to have the 2nd surgery at current age again.

I think my parents made good decision not having surgery when I was 10.

Do you have pelvis fixation? I wonder what's the difference in flexibility between fuse down to pelvis with and without the fixation.

Mehear:

I don't mind you asking me those questions. I really don't know what lead to my progression. I don't have any kids, in fact, due to scoliosis, I always worry about having kids would worse my curves. I actually prefer to have surrogate if I want to have kids. I just really don't want to risk anything on my back. If you want, feel free to email me. I'd love to hear your thoughts if you visit Dr. Pashman in the future. I think the progression is due to my big curves.

[jsully]

The fusion in the thoracic area does not cause much flexibility problems. The lumbar does. Currently I have difficulty bending over to get things on the floor the most.
Janet

[titaniumed]

Fashonista

You might want to check out this thread and my bending and twisting pics.

http://www.scoliosis.org/forum/showthread.php?t=10303

Ed

[jrnyc]

minimally invasive is used for fusion to sacrum...it has been offered to me, and what i will try if/when i am ready...there is nothing "shorter" about it!
it is plenty "mature"...
and surgeons who use the technique are quite well experienced in doing the traditional approach...
or what Dr Anand considers "outdated" and "unnecessary cutting"

i am not suggesting everyone must have the new approach..
i am saying don't knock it till you investigate it...and speaking to those who have had it really helps!

jess

[ADMoul]

Fusion to sacrum

I am fused to the sacrum, a little over 1 year post-op and have virtually no pain and no limitations as to what I can and can't do (within reason). I am not an athlete, but I bend over to leash dogs, pick things up off the floor, etc. I would gladly trade a little bit of mobility loss for the absence of pain and/or not having to worry about more surgery hanging over you in the future.

[jChris]

I am fused t-2 to pelvis, with fixation. I have been surprised at how much I can bend. I can do most anything I want with the help of the pick-up device. I am so glad I chose to go all the way to the pelvis, although I fought it at first. It is not painful, helps with future problems of an aging spine. I am so glad I don't have to face going back for more lower back surgery.

[jeneemohler]

Hi fashionista!

I sure understand your concerns! I have put off surgery since the '80's, mostly due to concerns about mobility. And I decided to put it off because I wasn't in pain at that time, and wanted to wait for improvements in surgery. I had a rapid progression from January to August of 2010. I shrunk 3". I had run out of time. You are in a similar situation. Ed's bending and twisting photos helped me the most. Nothing like an actual photo to see with your own eyes!

I gave in and had my surgery in January, and I am so glad I bit the bullet and went through with it. I am fused T3 to pelvis with fixation. I am being extremely careful of not bending and twisting, because I don't want anything to interfere with the fusion. But that being said, I have caught myself doing things I never dreamed I would be doing. I mentioned in an earlier post that I was brushing my teeth and leaned over to get water from under the faucet. I was shocked, then paranoid at what I had done. I also put away my grabber. I am able to reach and get to everything. I do a lot of squatting, but can still get things. I put on and tie my shoes, trim my toenails, (dang, I was hoping for lifelong pedicures...) get the dishes out of the bottom rack of the dishwasher, put things in the oven. I sat on the floor and reached under my bed yesterday. I had to bend more sideways, but I got what I was reaching for. And I am painting my bathroom walls and cabinets this week!

It is amazing how much you use your hips, and not your back, to bend. You also won't be stiff in your upper back and neck. Sit down in a chair with your back pressed up against the back of it. Now turn to the right or left and look over your shoulder, keeping your lower back against the chair. See how much you use your upper back and neck? Then lay on your back on the floor or in bed and bend at your hips and pelvis, and twist side to side while keeping your lower back flat on the floor/bed. See how much you can still move around? Between your hips and your upper back, you will still have lots of movement. I don't know why I kept picturing my back being stiff from hips to my head... I knew better! But the image persisted, anyway.

You will use different body mechanics after surgery, but I haven't found anything I can't do yet. I truly thought I would be aware of being a "robot" at all times. (I used that word a lot...) But it really isn't that bad. I am so pleased at how I feel, and am anxious for the fusion to be complete so I can really twist and reach like I want to. If it is not too limiting right now, I expect it to be even MUCH better down the road. Even now, people tell me that they would never know I was fused or had recent surgery if they didn't know me. If I had known that my flexibility would not be as bad as I pictured, I would have done this long ago. So many years spent in pain due to fear of being a robot!! I was so worried about being stiff and erect. Something that really helped me was a friend telling me that I would not be a robot, but a ballerina- tall, graceful, elegant and strong with great posture and a straight back. Same exact outcome, but different attititude!

I wish you the best of luck. You are smart to check out all your options, techniques, and doctors. Just go with your gut. You will know when you find the right one, and being confident of your doctor is SO important, especially as you get closer to your surgery-most people normally get a case of the nerves. Keep us posted of your journey. And we are glad to be of any help to you!

[Lorz]

Ann, Chris and Jenee'

Thank you so much for your posts. It makes me feel much better about the long fusion I am facing in June. Jenee'- I continue to be amazed at your recovery, painting next week? Wow! You continue to be an inspiration to me!!

[csc]

More surgery

Thanks so much for this thread. I was fused 3 years ago from T3 -L4. Now, possibly facing more surgery due to on-going pain issues. This thread was so encouraging!
I've been dreading the possible loss of motion. Sounds like it will be minimal.
I'll find out more tomorrow. MRI was yesterday.
Thanks again!

[Jacque's Mom]

Fused to Sacrum

Lori,
I had my surgery with Dr. Boachie on 12/7/2010 and as of 2/28/11, I am back to work commuting to NYC from NJ. I feel great! Today is the first day I'm wearing heals (about 1.5 inches) and so far so good. I am also fused from T-4 to S1 (original surgery from T-4 to L-3 in 1981; recent revision extended to the sacrum). It's truly life changing. Of course, it's not a walk in the park the first few weeks as everyone can attest to, but knowing the surgery is over and you're on your way to recovery, is a great feeling. Lindy, Dr. Boachie's office nurse, is wonderful. If you have any questions, send her an email and she responds within a half hour or less. I felt it was much easier then calling. Any questions, please let me know. LYNN