New here - Introduction

[treefrog]

Originally Posted by Dr. J

Hi Cathy,

It's great to hear you have a good PM doc. I also have a lumbosacral transitional vertebrae. How many other surgical opinions are you planning on getting (you mention one other neurosurgeon)? Just taking a glance at your background info, it looks like you have 3 bad levels? (Is this right? I've been studying all day, so I'm in a haze.)

Yes, my S1 is partially lumbarized. And I've been wondering if that might have in some way contributed to my condition, having some movement where there shouldn't be. And I wonder if my mom or sister have the same anatomy, the scientist in me wants to know, but neither of them has had mri's.

It is 2 bad levels, L5-S1 and L4-5, though after reading the discogram results I don't know if I should be worried about L3-4 going. Which has me leaning toward ADR at L4-5 and fusion at L5-S1.

I'm not sure about getting other opinions, at first I didn't think it was necessary to get a second opinion, but some of the docs in the lab convinced me it would be a good idea.

Well, keep us posted on your appts and how things are panning out.

Will do. Thanks.

[Kathy]

Originally Posted by treefrog

I'm not sure about getting other opinions, at first I didn't think it was necessary to get a second opinion, but some of the docs in the lab convinced me it would be a good idea.

I would definitely at the minimum, get a second opinion. I would do research on here and the internet and find the best ADR and fusion dr you can and see them. When it comes to a surgery like this, you need to make sure you do everything you can for a positive outcome, including research. I figure, at least that way, you know you have done everything possible to make the best decision you can. From what I understand, the surgeon is one of the most important factors to a successful outcome. Also, you want to make sure you are a good canidate and have the right surgery. Just my opinion, hope it helps.... I'll get off the soapbox now, Kathy

[treefrog]

Kathy, that's one of the reasons I am on places like this, because I want to find out everything I can about making the best decision.

I will be getting a 2nd opinion, but I don't have plans at present for a 3rd opinion. Not that I won't want to get one, but it will depend on what I find out from the 2nd opinion, and questions I have for the 1st surgeon I talked to.

So, here are the surgeons I've seen (or will be seeing).

Dr. David Musante (Triangle Orthopaedics) Triangle Orthopaedic Associates, P.A.

Dr. Robert Isaacs (Duke Spine Center) Isaacs, Robert E. - DukeHealth.org

I am in the Raleigh/Durham NC area. So if anyone knows of the best surgeon to see in this area, I would be appreciative. Or if you think I should go somewhere else. Though, with Duke here, I would hope there would be an excellent surgeon here.

And I'm pretty sure that Dr. Musante has a lot of experience, I found his name associated with some clinical trials (though right now I'm blanking on which ones specifically). And that is one of the questions I want to ask him, is how many TDR surgeries he's done in his career, and on average, each year.

[Kathy]

I am not that familiar with surgeons in the US, other than the one's mentioned often on here... I think the one's I have heard of are in California and Texas. And of course, the one's in Germany we hear about all the time. I hope if I didn't come off as judgemental and mean in my previous post... that was not my intention. I just wanted to help.
Hopefully someone in your area can tell you more about surgeons around.
Good Luck in making your decision,
Kathy

[treefrog]

Kathy, I didn't take anything you said as anything other than suggestions to help. No problem.

I just wanted to bring up where I was coming from, and what I was thinking, in relation to your suggestions. Sorry, if I sounded like I was being defensive. I just wanted to clarify my position. And took the opportunity to list the surgeons that I am interacting with right now.

And I guess I am also trying to figure out what I should be doing. Should I think about going somewhere else for surgery? Out of the state, out of the country. Could I get insurance to pay for surgery out of my area?

And actually I am still trying to decide if it is even time for me to have surgery. I hate that I can't do the things I want to do, or even need to do, at times. For instance, over the weekend, I was standing a lot while cooking. It has been a long time since I have done this, because it is so hard on me. And my back is paying for it. I hate that I can't cook, like I want to be able to do.

But is surgery the right choice, right now? I have had people tell me that they would not consider surgery if they were in my position. Because I don't have nerve impingement or spine instability, that surgery is not "required". My pain levels don't typically exceed a 4 on a scale of 10. Though my pain keeps me from living a full life. The thought of feeling like this for years to come is depressing. I want it to get better.

If I don't have surgery, my life is not likely to get much better, but it may stay the same. That thought makes me want to cry though. It's like I almost wish that my problems were more severe, so that the decision would be more clear cut.

This is major, major surgery, and the outcome is not guaranteed to go in my favor. The odds are not overwhelming, the one surgeon I talked to, said 70%-80% chance that pain that is an 8 starting out which ends up at 2.5-3, would be a success. Well, if my pain is starting out at 2.5-3 (with meds), what can I expect, and why am I even considering such major surgery.

Sorry, my post just deteriorated into whining and navel gazing. I think I am just looking for validation of my feelings. I think I need to read some of the surgery outcomes, and see if there are people who have had surgery, that started out like me (though I expect most were in worse shape).

[dshobbies]

Treefrog,

I felt and advised both Maria and Mark to have surgery but they both came back with a quality of life issue. The biggest concern about surgery is there's no going back. While a poor outcome may become better with time or additonal surgery, it also may not. We all have our hopes and desires for a better life but for some, their hopes are never realized. You've read about the 'miracles' of people getting their lives back and going on to lead lives close to the that which they remember. That's what we all want.

I posted a question on ADRsupport, for those considering their surgeries successful, what can't you do?. I was surprised that with one exception, everyone posted some limitations. Personally, I've been left with severe nerve damage in my left leg that causes it's own limitations. I am considered disabled. I cannot stand for a long time, sitting can be difficult if the chair doesn't fit and I still spend a lot of time in my lazyboy. However, I can cook dinner, eat at the table with my family, pick up and play with my grandchildren, paint again, go out with friends and ugh, do laundry. My life is so much better since my surgery that even with my new limitations, I consider my surgery a success. My quality of life has been greatly improved.

So getting back to Maria and Mark... are you satisfied with your quality of life? It is different for everyone and no one has the right to tell you to be satisfied with your pain level because it isn't severe. Does your pain limit your activity level to the point that you're unhappy? That's when you know that you want to do something to improve the quality of your life, or at least attempt to improve it.

Life comes with no guarantees and neither does surgery but sometimes, if you don't go for it, all you get in return is regrets. Should you decide that surgery is in your best interest, please be reasonable about your expectations. Most of us are left with some limitations. 100% has a new meaning. And don't worry about ranting, we've all shared your feelings and putting them into words, trying to make others understand, is difficult.

I wish you good luck, Dale

[mmglobal]

Today, I'm unhappy that I canceled my surgery... It's been a very tough week and I could be on the road to recovery next week. Hopefully, in a few days, I'll be happier with my decision.

[Kathy]

Cathy,
I have to agree with Dale. I always say I never knew back pain until I had back pain. Before my injury, I just thought I had pain. What I would have said was a 5 or 6 then, would be a 1 today, a great day. People who have never suffered from pain, don't get it. It wears you out to be in pain constantly, whether a 4 or a 9, day in and day out, . It is physically, mentally and emotionally taxing. Then, to try and make a life altering decision, that could be the best thing you've ever done, or the beginning of the end; is almost impossible. Even with the pain and limitations I deal with, the dr's saying I will not get better without surgery, and time I have been suffering; I still have family that doesn't understand why I can't deal with it *like they do*. The difference is, their pain is what most of us would consider a great day and is intermittent. They have probably never laid, cried and prayed for death over their pain. They don't get it and they are not us. Only us and those few compassionate friends see what we go through. Not to mention, I don't want to have to take pills to function for the rest of my life. To have to make sure I don't leave the house without my medication, to not commit to anything *just in case I am having a bad day*, to have to back out of commitments because of pain, to live like a hermit in order to be as comfortable as possible, to tell my kids that mommy can't hold you- her back hurts, to have an hour or two window of pain relief between pills, not be able to be spontaneous and live a 'not really living, just existing life- if you can even call it that'. No one can judge that, they haven't walked in our shoes. God gave us life and gave it to us abundantly, not mediocre life; but abundant. I feel it is my duty to myself and my children to do everything I humanily can to get better. Yeah, I could live with this the rest of my life, it's not going to kill me, it's not life threatening; but I want and need a better quality of life. It really is a quality of life decision for most of us, very few is it truly life threatening, obviously not good for the body; but not going to literally kill you. It's just like the decision to have drugs in childbirth or not, it is your body and your decision. No one would look badly on someone who was in labor for 3 days and had drugs. Why would someone judge someone who is in pain 24/7/365 for wanting help. I, personally, would rather have 24 hours of drug free intense childbirth once a month (which I have done), than to be in pain all day. At least with childbirth, their is an end to it and a really great reward!
So, my point is, if this is effecting you mentally, emotionally, physically and interfering with your life; then why should you suffer. You have to do what's best for YOUR body and only you can make that decision. Just smile and say 'oh, yeah, uh-huh, etc' when people give you BS advice and then do what you want to do.
Ok, I'm rambling and on my soapbox again, can you tell I'm passionate about this? He He. Best of Luck in making a decision that you can live with. Kathy