Consult with Dr. B.

treefrog · #1 (**permalink**) 04-13-2009, 02:58 PM

I finally got an email back from Dr. Bertagnoli's office, Dr. Fenk-Mayer specifically.

Quote from the email: "He firmly recommends Pro Disc L at L45 and L56 (with L6S1 is present as a variety, but hypoplastic non-functioning, and not generating any pain)."

No one here has ever specifically said that I have L6S1. It has been noted that I have a lumbarized S1. I assume that is what they are referring to. I trust that Dr. B will get the right discs though, when he does surgery.

I did write back, one because she said I needed a bone density test, and I wrote to say that test result is on my profile, but if she had trouble getting it I would fax it directly to her. The other reason was to ask how she and Dr. B. thought my facets looked, if they would cause future problems (I know they can't say for sure), and also to ask if because of the lumbarized S1, did Dr. B. think fusion at the lower level would be beneficial.

So, hopefully this week, I can get the quote from them and schedule surgery.

I am still waiting to hear from Dr. Regan too. I'd like to get another opinion, just to make sure I am doing the right thing, though I really do trust Dr. Bertagnoli's opinion.

You can't believe how happy I was, when I saw that email.

Maria · #2 (**permalink**) 04-13-2009, 03:24 PM

I was equally as happy to receive communication from Dr.Fenk-Mayer back around 2002/03 that helped me to get the ADR ball rolling here in the states altho I've always held out thinking I want the surgery done there w/Dr.B.

So congratulations I'm trying to say as I do know the joy of getting that communication what once again gives one great hope!!!!

Good luck with all and keep us posted

Justin · #3 (**permalink**) 04-13-2009, 03:38 PM

Quote:

Originally Posted by treefrog

I finally got an email back from Dr. Bertagnoli's office, Dr. Fenk-Mayer specifically.

Quote from the email: "He firmly recommends Pro Disc L at L45 and L56 (with L6S1 is present as a variety, but hypoplastic non-functioning, and not generating any pain)."

No one here has ever specifically said that I have L6S1. It has been noted that I have a lumbarized S1. I assume that is what they are referring to. I trust that Dr. B will get the right discs though, when he does surgery.

Cathy, glad you heard back from Drs. Fenk-Mayer and Bertagnoli. About the lumbarized S1 or L6--it's the same thing. I have countless reports, even my most recent MRI and CT/Myelogram, of "incorrect" labeling of my lumbar. It also depends on which way (from the cranial down or sacrum up) they start counting. In the end, though they mean the same thing.

Quote:

(with L6S1 is present as a variety, but hypoplastic non-functioning, and not generating any pain)

I have the "exact" same finding at L6/S1...during my discogram the needle could not gain access to this disc, as it is a "residual hypoplastic disc that has a bony ridge surrounding the disc."

Keep us posted...it is great to get a plan of action, isn't it?!?!? At the very least, it reaffirms that you are not crazy

and that surgery is, indeed, indicated.

Dr. Fenk-Mayer is incredible--she is extremely thorough in regards to answering questions via email and she is reassuring about the proposed plan. She works very hard as a surgeon and somehow keeps up with the inundating emails she/Pro-Spine receives.

treefrog · #4 (**permalink**) 04-13-2009, 04:25 PM

Thanks for that explanation Justin, it makes it much more clear. So, there is actually a disc there, but a non-functioning disc? I'll have to take a closer look at all my images, and see if I can spot that.

So, that was one of the things I was wondering. If this abnormal anatomy is in part the cause of my problems, would fusing that segment make sense? Of course, maybe it isn't the cause, and maybe it doesn't cause more movement, like I am envisioning. But, I thought it was worth discussion.

dshobbies · #5 (**permalink**) 04-13-2009, 05:53 PM

Cathy,

A lot of people have that 6th lumbar disc. Not a worry. Great news about Dr.s B & FM.

Can't say if that's part of the problem?

Keep us posted, Dale

treefrog · #6 (**permalink**) 04-13-2009, 06:24 PM

Yeah, if a lot of people with lumbar problems have that L6, then does it cause problems? Maybe, maybe not.

One of the surgeons that I talked to, did say that he does see a lot of people with back problems, have that lumbarized S1 (or L6). Could be coincidental, but he seemed to think that the people with L6 were more likely to have problems. But I don't know if it is because that segment then has more motion, if it does, then would fusing it help?

Cindylou · #7 (**permalink**) 04-14-2009, 02:35 AM

I was going to reiterate what Justin said treefrog, as I also have a lumbosacral transitional vertabrae (lstv). Some of the latest studies I have read lend strong support to the relationship between this anomoly of the lstv and low back pain. I have also read there is a higher incidence of lstv in males versus females. I guess you and I are the lucky females. I did have my lstv fused as it was impossible to put an artificial disc in the space. Just my 2 cents, but I would venture to say there is a high probability it is contributing to your problems. Hope you get the relief you need from Dr. B.

Regards,

Cindylou

treefrog · #8 (**permalink**) 04-14-2009, 04:12 PM

Thanks CL. I hope that Dr. B. will be able to tell me whether or not my lstv will cause problems after the ADR, or if there is something that should be done to avoid that. According to the MRI report, mine is partially lumbarized, so an ADR could not go in there. But, I do wonder if it shouldn't be fused (if that is even possible) to avoid more problems.

I still haven't gotten the cost estimate, which I need to get before I can schedule surgery. I think I will send an email to ask about it, because I want to set the surgery date as soon as possible.

I know that sometimes people wonder why I would have surgery. My average pain level is 3-4, with meds. I know the surgeons are used to working on people with much higher pain levels, and telling them that success would be getting their pain level down to 3-4. But here is my reasoning.

First, the pain has taken away my normal life. I can't do lab work (which is my job), only sit at a desk and do administrative work. Occasionally I will have to do a little bit of work, and it usually leads to increased pain, sometimes it lasts a week or more (depending on how active I had to be). And I no longer have a social life.

So, even though I still get up every day and go to work, I find it difficult to do so. I don't sleep well because of the pain, so I have a hard time getting up in the morning.

I know that surgery may not decrease my pain, and there is a chance that it will increase it. But surgery is the only shot I have at decreasing the pain. Because I have DDD, it isn't going to get better on it's own. If I don't have surgery, there is the possibility that the pain will decrease on it's own, eventually (many years from now). But the likelihood of that happening is pretty slim, particularly anytime soon.

And from what I have seen, recovery can be influenced by the condition before surgery. So, I think that by having surgery before I have lost a lot of disc height, and let things degenerate so much, I will have a better chance at full recovery. And I am hoping that it will be an easier, quicker recovery.

Maria · #9 (**permalink**) 04-14-2009, 05:10 PM

Cathy,
You are also at that age where in perimenopause your bone density *might* start to change.. I had only osteopenia back in '06 with a t score of -2.2 lumbar spine and I was a surgical candidate for ADR at L4 and fusion at L5S1but now I have osteoporosis with last t score of -2.6.

Here in the states I don't think there is a surgeon that would want to take my lumbar spine on with osteoporosis altho perhaps abroad where vertebroplasty is utilized (Dr.B).

So I guess I think your reasons are quite valid altho of course it only matters to you when you feel ready to have surgery!

Wishing you the best with your endeavor!

treefrog · #10 (**permalink**) 04-14-2009, 05:13 PM

You're right Maria, that is yet another reason to go forward with having surgery sooner rather than later.

I don't know why I felt the need to rationalize my decision, but there it is.

SandyW · #11 (**permalink**) 04-14-2009, 06:54 PM

Cathy,

If you can put the $'s together to have the surgery, don't wait. IMHO having Dr. B do the surgery is a "no brainer". However, more opinions can't hurt!

After my first MRI in 2004 which showed DDD, I was told to wait. I didn't bother to get another opinion on this recommendation because the hospital I went to is rated high in orthopedics/neurology. Not a wise decision. I waited until the pain was worse and my left arm/hand was numb to have a second MRI (2007). By this time the discs were impinging on the spinal cord and surgery was not elective.

I got a little smarter and used the computer. I think if I had had Dr. B do the surgery in 2004 instead of 2008, I wouldn't be having post-op problems (second guessing really helps - lol). The ADR fixed the discs. But I've read that DDD can speed up facet degeneration and think waiting has created some of the pain that I'm having now.

Dr. B has so much experience, the younger you are the faster you heal, and why be miserable. It's scary and not my decision to make. So make sure you feel comfortable with your decision no matter what others are saying.

Will wait for further updates.

Best wishes, Sandy

Kathy · #12 (**permalink**) 04-14-2009, 10:44 PM

Cathy,
I am so happy that you got an answer! I know that it makes a big difference to have hope and a plan. As far as when to have surgery and is your pain bad enough. I think that it depends on the person. Prior to surgery, my pain was usually less than 5 with meds, it would go up to a 9 or 10, if I didn't take meds at the first sign of breakthrough pain. I didn't want to live like this, why should I have to take drugs to be 'normal'? I knew that this had taken a huge toll on me; but never realized how much. My husband told the surgeon, prior to surgery, that this has aged me 10-15 years. He never told me this, I'm sure not wanting to depress me more than I already was. He went on to say how full of life, energy, happiness I was before this and how I am now. I'm sure your loved ones have seen a similar change too.
Not to mention, your facets aren't getting any better. I was lucky, in the sense that all 3 of the surgeons I saw, agreed that my facets were not yet bad enough for surgery; but they all also agreed that I didn't have lots of time left. Plus, the osteoporosis, osteopenia issue. I was also told that my age would be in my favor too. So, it goes to reason that the sooner you do it, the younger you are, the faster you will heal.

Surgery will be scheduled and here before you know it!

Kathy

Justin · #13 (**permalink**) 04-15-2009, 12:10 AM

Hey Cathy, if you can swing the finances I see no reason for you to wait, especially with a solid diagnosis and proposed surgical intervention by arguably the worlds most experienced multi-level surgeon.

Your pain level (3-4/10) is low, so this will be on your side during recovery. Your recovery should be much faster than someone with significant pathology that is causing 7+ pain--this type of pain exhausts pain receptors and tissue change at the site of injury can be extreme (inflammatory mediators, surrounding tissue fibrosis/possible necrosis, ligamentous hypertrophy/inflammation, decreased facet synovium/presence of cysts/sclerosis, etc.). Plus, decreased disc height places extra stress on other joints such as your SI joints.

By the way, this is NATURAL to try and "justify" your surgery. I've been through this hell twice before and I'm still trying to justify my surgery -- "I'm not that bad" / "I should put surgery off, others are worse than me" / "I can wait it out until I have to move forward."

I think you are thinking about this the right way -- get in, get it done and hopefully get back to living your life without living a life of "what ifs."

I wish you the very best and if you need to talk more by email/PM don't hesitate.

Cheryl · #14 (**permalink**) 04-15-2009, 12:27 AM

Cathy-

Just want to wish you the best.

I felt the need to justify decision too and went through many of those same thought processes as you.

I'm 40, from Charlotte and had l4-s1 done last year with Dr. B. I'd do it all over again.

Let me know if I can help in any way.

Cheryl

jentop · #15 (**permalink**) 04-15-2009, 02:07 AM

I agree with your decision to go forward. I recently (Jan 27th)had 2 level cervical ADR with Dr. Bertagnoli for the same reasons(plus more-ie:high pain levels at times, cord impingement/compression depending on who was reading the films, etc)and am very glad I did. My recovery has for the most part been remarkable. I still experience some pain, though nothing like before. Also, I am menopausal(nearing age 50)but probably due to my active lifestyle(the same one that has screwed up my spine)my bone density is still excellent.
I also have the same levels of DDD in my lumbar spine, though not yet a surgical candidate. I also have been told that I have a transitional vertebrae. So, with all things being equal, I would want to get ahead of the game too and try to prevent the domino effect if possible. I wish you the best of luck. I can reiterate that Dr. FM is wonderful too. When I finally got to meet her in person, I was very impressed. She had been out with the flu when I arrived, but I saw her for my 1 week postop appt and she was great!

Kathy · #16 (**permalink**) 04-15-2009, 02:28 AM

Jentop's post reminded me of the domino effect....
My pre-surgery MRI and the one before it were done 10 months apart, with no new trauma during that time. During that time the DDD progression was signigicant and L5/S1 & L3/L4 now both have a 1mm herniation (this was not there before) You are very lucky to have the knowledge you have and be able to get surgery done in a timely manner. My previous dr never even told me that I had ddd, or that I was a surgical canidate. I was simply told there was nothing else that they could do for me. I spent 3 years trying to figure out what was wrong with me.

Cindylou · #17 (**permalink**) 04-15-2009, 12:14 PM

Cathy,

Boy, Justin really nailed it. And everyone else for that matter. Go for it, and reclaim your life back! We're here for you on the other side.

My best,

Cindylou

treefrog · #18 (**permalink**) 04-22-2009, 07:24 PM

Well, I am still waiting for a surgery date. Perhaps Dr. Fenk-Mayer decided to take some vacation time too.

Yesterday I talked to the ortho surgeon that I consulted with back in December. He said he does not like to take on other surgeon's "problems". So, if I were to need follow-up care after surgery, he wouldn't do it. Well, that's disappointing. I hope my PM doctor will continue to see me, and will prescribe medications for whatever I might need to take with me.

Of course he tried to talk me out of going to Germany. He said he thought I could get two-level ADR, and pay out of pocket here in the US for less than $40,000. HA! He also said there were no results to prove that 2-level disc replacement (ADR) is any better than 2-level fusion. He said fusion is not perfect, but neither is ADR, and he thinks that if you are going to have problems after surgery, it wouldn't matter if you have fusion or ADR. Basically saying that some people are just going to have problems no matter what surgery they have.

My interpretation of the above opinions - first he is only basing his opinions on results from US investigations (clinical trials and surgeries). He even told me at our consult that he there isn't much reliable data coming from Europe, because they don't have the same standards that we do. And if I look at just US results, I don't think it looks very good either, which is why I want to go to Germany.

Then he said that if it were him, he would choose 2-level fusion over 2-level ADR, and hybrid over 2-level fusion.

I didn't get around to saying one of the other reasons for going to Germany was experience. He mentioned that he has done about a dozen hybrid surgeries. That is laughable. Compared to the thousands of ADR surgeries Dr. Bertagnoli has done. But, at least I didn't have to get into it with him.

Justin · #19 (**permalink**) 04-22-2009, 07:50 PM

Hey Cathy, see the bolded text below:

Quote:

Originally Posted by treefrog

Well, I am still waiting for a surgery date. Perhaps Dr. Fenk-Mayer decided to take some vacation time too.

I'm thinking that this is what it is. They are usually SWAMPED with patients from all over the world. Vacation is extremely rare for Drs. Bertagnoli an Fenk-Mayer.

Yesterday I talked to the ortho surgeon that I consulted with back in December. He said he does not like to take on other surgeon's "problems". So, if I were to need follow-up care after surgery, he wouldn't do it. Well, that's disappointing. I hope my PM doctor will continue to see me, and will prescribe medications for whatever I might need to take with me.

Find another surgeon to follow you. Better yet, Dr. Bertagnoli will probably suggest one that he has trained or knows well in your area. Keep your head up. Your PM should be sympathetic, but definitely find a surgeon for follow-up (X-rays, etc.).

Of course he tried to talk me out of going to Germany. He said he thought I could get two-level ADR, and pay out of pocket here in the US for less than $40,000. HA! He also said there were no results to prove that 2-level disc replacement (ADR) is any better than 2-level fusion. He said fusion is not perfect, but neither is ADR, and he thinks that if you are going to have problems after surgery, it wouldn't matter if you have fusion or ADR. Basically saying that some people are just going to have problems no matter what surgery they have.

40k...hehe... 2-level fusions are devastating operations on adjacent levels in a significant amount of cases with patients that are young and lead relatively active lifestyles. True... both fusion and ADR have problems. However if patient selection, appropriate pre-op diagnostic bases are covered and an experienced surgeon are in the mix, one's outcome is favorable with ADR. ADR is not a fix-all operation, and I think most of us know this on this forum. In many cases it's the "better" option among the few options we have as spine patients facing surgical intervention.

My interpretation of the above opinions - first he is only basing his opinions on results from US investigations (clinical trials and surgeries). He even told me at our consult that he there isn't much reliable data coming from Europe, because they don't have the same standards that we do. And if I look at just US results, I don't think it looks very good either, which is why I want to go to Germany.

True, the German studies vary greatly. However, this doesn't mean that we should completely throw out that data. US results are better in the short-term in regard to VAS/oswestry, return to work, range of motion, etc. Long-term results are still up in the air.

Then he said that if it were him, he would choose 2-level fusion over 2-level ADR, and hybrid over 2-level fusion.

In my opinion, this is nonsense. I spoke with a surgeon this weekend about my situation and he agreed that as an active, 23-year-old at the time of my surgery that he would have done the same (picked the 2-level ADR as opposed to fusion). He agreed that I would have significantly greater issues and have had many more surgeries by now. However, I do know that my 3rd surgery coming up will not be the last in my life.

Cathy, he is just talking about what he knows. ADR is still in its infancy and many surgeons dismiss it right off the bat.

I didn't get around to saying one of the other reasons for going to Germany was experience. He mentioned that he has done about a dozen hybrid surgeries. That is laughable. Compared to the thousands of ADR surgeries Dr. Bertagnoli has done. But, at least I didn't have to get into it with him.

IMHO, experience is the MOST IMPORTANT factor in the surgical equation. For example, the one of the great things about Dr. Bertagnoli is that he will do a discogram on an uncertain level "himself" during an operation when he believes another disc is suspect. Incredible. Dr. Bertagnoli's experience speaks volumes, as he has seen extremely difficulty cases, emergent cases that are medevaced to him, etc...plus he has used practically every device on the market. He truly knows what device/intervention is the best in a patient's situation...why?...one word... EXPERIENCE.

Good luck and keep me posted... I have an interesting story for you.

treefrog · #20 (**permalink**) 04-22-2009, 08:20 PM

Thanks Justin. Experience of the surgeon is the most important aspect on surgical outcome, in my opinion as well. And even if Dr. Bertagnoli thought that a hybrid surgery would be better for me than 2 ADR, I would still want him to do the surgery.

I also have a physical this Friday, and will be asking them to do the blood work (which reminds me, I have to write to Pro Spine and ask how important it is to have this done two weeks before surgery), required for surgery. I think I will ask them, if I don't have an alternative if they will order follow-up x-rays for me. Then I can send them to Dr. Bertagnoli for review.

steve55 · #21 (**permalink**) 04-24-2009, 05:00 AM

Yes! Dr b did a interop discogram on my suspect c4/5 and it turns out it was REALLY bad! He saved me a ton of money and suffering as I likely would have eventually started having pain from that level also. Dr b's consistent successful results speak for themselves.

SandyW · #22 (**permalink**) 04-27-2009, 05:01 PM

Can't say enough good things about Drs B and FM. I was told that I needed 3 replacements, but they would do a discogram on the 4th. Thank heavens they covered all bases since that disc was ruptured, had a 4 level.

I'm not a YOUNG active person, just an older active person, who didn't want to lose mobility. I was told by all doctors here to fuse and absolutely do not go to Germany.

Dr. B called my spine doctor and referred me since he had refused to see me when I called for an appointment. Mistake - he was terrible, said he "wouldn't touch me with a ten foot pole." Don't know why he gave me an appointment if that's the way he felt. However, the PM department agreed to see me. I told them I had had ADR in Germany and if that was going to be a problem, please let me know before making an appointment. All went well, in fact, they were all whispering about my x-rays, they seemed impressed!

There are doctors out there who's ego allows them to help you do what YOU think is best, find one of those guys. If a doctor won't see you, they are the losers.

Sandy