Hello - Page 2

treefrog · #11 01-15-2009, 09:22 PM

Well, unfortunately the call was not for an appointment, he wanted the other surgeon's notes from my 1 appointment with him. I don't really understand this, since I want an independent opinion. But, we'll see what happens next.

I can't say I'm not disappointed though. I'm ready to have a second opinion.

treefrog · #12 01-28-2009, 01:09 PM

I had my second opinion appointment. That was a disappointment. Well, he did order another MRI, which is good because the last one was over a year ago. And he did flexion and extension x-rays, though he didn't mention them during our conversation, so I don't know if they gave him any useful information.

He didn't seem to think that surgery was a good option for me. He did mention surgery, but made it clear that he didn't think ADR was proven to be any better than fusion. And apparently their department is really expert in minimally invasive fusion from the side. But mentioned that because of my transitional anatomy, he wasn't sure that they would be able to do the L5-S1 with that approach.

I have a follow-up with him, after the MRI. We'll see if the new MRI gives him any more of a clear indication for a procedure.

He said that what gives him a good idea that someone will have good results with surgery, is when they have clearly mechanical induced back pain (pain on standing or sitting, that goes away with walking or laying down [taking pressure off the disc]). Because I don't have clear mechanically induced back pain, it isn't clear to him, that surgery would benefit me.

I am so tired of this. I want to know what to do, but I know no one can tell me. I don't think this surgeon is the one that I will be going to, if I decide on surgery. But that is the only decision I've been able to make.

I am scared of losing my job, losing my boyfriend, of being in pain for the rest of my life.I am scared to have surgery, but also scared not to. I want to cry, then go to sleep until something is decided for me.

Harrison · #13 01-28-2009, 04:26 PM

We’ve all been there, so at least you are among friends that can truly empathize with your challenges ahead. It is great that you have a boyfriend to support you in these tough times. How are you asking him for help? Does he have time to help you sort out of some of the logistic challenges -- going to appointments, etc.?

It sounds like you are clear on your mission: getting the right diagnosis. This is obviously incredibly important, so why not seek a second or third opinion? Are you looking for other spine docs in your area?

BTW, crying is healthy! Let it out!

Adrienne · #14 01-28-2009, 07:02 PM

Hi Cathy,

You have my sympathies. We're in the same boat, the pain is diffuse and all they can find is a large, pain generating tear at L5/S1. There is no nerve impingement and the discs are only minimally degenerated.

I just scheduled myself for a fusion. It's been two years and I finally had to make the leap. I consulted 4 surgeons and came away with three alternatives. Each surgeon had his own bias but I ended up opting for the fusion because my facets were already a little hypertrophied and the long term consequences of ADR are relatively unknown. Plus, it's only one level so flexibility shouldn't be an issue.

I know, it's really hard when no one has a definitive answer. Hopefully, this new MRI will reveal something.

Take care, Adrienne

treefrog · #15 01-29-2009, 04:53 PM

Thanks everyone. I am going to seek out other opinions. I want to see if I can go to someone who is much more experienced in ADR surgery, than the first surgeon that I saw. I am not ruling him out, but I want to get what I can feel is an "expert" opinion.

Speaking of which, what number of ADR surgeries should a surgeon have done in his/her career (or per year) to be enough that you would consider them to be worthy of full faith in their abilities?

I did have a nice cry last night, and talked to my boyfriend, partly at the same time

. He was very supportive, and said that he is not planning on going anywhere, and is there to support me in whatever decision I make. He did say that he would try to help sort out information, though I don't know how much time he will have for that sort of thing. He has been very good about taking me to appointments that I couldn't do alone, and I expect that will continue.

He also told me not to worry about the financial aspect of this, that there are ways to come up with any amount of money (well within reason) that we might need. It might require some belt-tightening, and he told me I couldn't get mad if he wasn't around as much due to working more. He wants to make sure that he is as indispensable as possible, and will pick up as many extra shifts (at his second job as a bar-tender) as he can.

All in all, I am feeling much better emotionally at least, since last night. I think I just got overly-emotional, and the added pain after the appointment didn't help. Why oh why do they have such horrible non-supportive chairs in waiting rooms?

jettylou · #16 01-30-2009, 03:29 PM

Cathy,
I sure can empathize with you on this. I had ADR scheduled for L5/S1 when insurance called and denied it because of my DDD at L4-L5. Now my doctors want to do two level fusion. They would have to take me kicking a screaming to do a fusion. It is old old technology, recovery time is long, and results while they might be somewhat positive, you are most certainly setting yourself up for future surgery when the next disc up fails.
I have decided to go overseas fro multi-level ADR. I have an appointment at Stenum in April, but have a new contact through my sister who I believe will be lead me to better doctors.
Have you looked at going across the pond at all? It is expensive, but you will also avoid fusion.

treefrog · #17 02-02-2009, 04:34 PM

jettylou, I am considering going overseas for ADR surgery. But I want to wait to get this new MRI, and start asking my doctors for copies of my films and reports. I will also be asking my PM doc about getting a bone scan done. That might make surgery out of the question, but I hope it won't be a problem. No way to know unless I have the test.

So I did a little more investigating on my pain levels when laying down. I think that because I have pain when I move while laying down, and also as soon as I go to get up out of bed, that in my mind I equated that as having pain while laying down. But come to find out, I don't feel the pain when I am laying flat on my back. I will tell the neurosurgeon when I see him again, though it won't change my mind about letting him operate on me.

2cool4U · #18 02-02-2009, 08:44 PM

http://www.medscape.com/viewarticle/544903

I found this article very helpful when I was trying to decide on a surgeon. Hardware positioning is critical, so it stands to reason that the more experience one has with the technique, the better the results. This article discusses not just outcome but operative time, blood loss, complication rates, etc.

Also, I think you meant that you need a bone density study (DEXA) rather than a bone scan, which is the term for a nuclear medicine study to evaluate for bone lesions such as stress fractures, infections, or tumors. Medicine has its own vocabulary, and radiology has a more specialized set of terms that even other doctors can't keep straight.

treefrog · #19 02-03-2009, 01:32 PM

That link only took me to Medscape log in page, so I don't know which article you are referring to. I have seen a number of articles on the importance of hardware positioning, which is why I want to be evaluated by some of the top names in spinal surgery. Those that have so much experience, that positioning is second nature to them. I'm hoping that I can have a few such evaluations in the next couple of months.

Yes, you are right, it's a Dexa bone density test that I want to have done.

Oh, and I think maybe I just was having a good night the other night, because last night after working all day, my back was still in pain even after laying down. I don't know what to make of it to tell the truth.

2cool4U · #20 02-04-2009, 12:22 AM

Sorry you're having problems. When I click the link, I get the specific article. I'm a member, so maybe that's the difference. Sign up for a membership. It's free and there are some good articles on there.

The article specifically addresses how outcomes, complications, operative time, and a bunch of other variables relate to surgeon experience. Some factors were statistically significantly different, others tended towards differences and some factors were no different.

The article is worth reading, and it doesn't contain much arcane terminology. If the link still doesn't work, just search for keywords "Charite" and "surgical volume" and that should give you the article.