New here - Introduction

[treefrog]

Well, I followed others over here from the other place, although I had only been there for about a month. I believe you can never belong to too many forums. I hope that I can learn from those here, and contribute where I can. I was most impressed by the articles and abstracts section, as I am a scientist. I have already found several good articles.

An introduction.
My name is Cathy, and I’m 46 years old. I have hereditary lumbar DDD. I say that because both my mother and sister also have lower back problems. I always considered myself the lucky one, since I had never had an episode of acute back pain that kept me off my feet, whereas they both have. My pain has always been intermittent, coming and going since about 1993 or so (I can’t remember exactly the date when I first had pain while shoveling snow), but I have always been able to get around and take care of myself during the pain. But about two years ago the pain started again, and it hasn’t let up.

MRI results (Dec 2007):
-Transitional anatomy – S1 is partially lumbarized (meaning it isn’t fully fused).
- Minimal levoconvex curvature, apex to the left at the L5 level. Both alignment and height of the lumbar vertebrae is well maintained.
- L1-2, L2-3, L3-4 Normal disc contour, without canal, lateral recess, nor foraminal stenosis.
- L4-5 Mild-moderate disc degeneration with desiccation and slight height loss. Mixed fatty and edematous degenerative endplate change is present, most advanced to the right of midline. There is mild endplate osteophytic ridging, accompanying dorsal disc bulging, eccentric to the right. This leads to very minimal flattening of the right ventral thecal sac. No canal or lateral recess stenosis. There is mild right foraminal narrowing due to lateral component of disc bulge, as well as very mild lateral endplate osteophytic ridging.
- L5-S1 Mild disc degeneration with dessication. Mild-moderate degenerative facet changes are present bilaterally. Minimal dorsal disc bulge, without mass effect upon the thecal sac, No canal or lateral recess stenosis. Mild left foraminal narrowing due to facet hypertrophy and endplate ridging.

Discogram results (Dec 2008):
- L2-3 disc injected with 1 cc shows an opening pressure of 26 psi. Normal anatomy. No pain. Max psi is 88.
- L3-4 disc injected with 1 cc shows an opening pressure of 23 psi. Normal anatomy. Some end-of-injection right anterior thigh pain. Low intensity. Repeat injection with 1 cc reproduces no pain. Max psi is 120.
- L4-5 disc injected with 2 cc shows an opening pressure of less than 10. Diffuse degenerative anatomy. Early injection concordant right-sided hip and leg pain. 7/10 intensity that increases with increased pressure. Some pain with needle movement. Peak psi 60.
- L5-S1 disc injected with 3 cc shows an opening pressure of 12. Diffuse degenerative anatomy. Early to mid-injection concordant back and hip pain. 8 to 9/10 intensity that increases with increased pressure. Max psi 54.

Pain medications:
Darvocet – didn’t do anything for the pain.
Ultram-ER – made me sick, dizzy and gave me headaches, didn’t help the pain.
Vicodin – didn’t help the pain, and at higher doses made me “out of it” and affected my eyesight.
Fentanyl – made me extremely sick.
Percocet – helped the pain a little bit, but at higher doses made me dizzy and nauseated.
Opana-ER – helps with the pain, no side effects. Currently taking 20mg twice a day.

Other meds:
Relafen – might have helped some, but it was hard to tell.
Mobic – might help, again hard to tell. Currently taking 7.5 mg once a day.
Neurontin – helps some with the nerve pain, but doesn’t get rid of it altogether. Currently taking 300 mg; two pills at night, 1 pill in the morning and afternoon (1200 mg total).

Talked with an orthopedic surgeon after having the discogram. He recommends either a 2 level fusion (minimally invasive TLIF), or a Prodisc-L at L4/5 with fusion at L5/S1 (ALIF).

Hopefully I will be having a second opinion with a neurosurgeon. I’ve been faxing them all kinds of information, which is fine, I understand that he wants to review all my test results before forming an opinion. The only thing that bugged me is that he wanted the surgeons notes from the consultation, and I want an independent opinion. But, we’ll see what happens.

I have a fantastic PM doctor. She listens, doesn’t give me a hard time about meds, probably because I’ve always been honest with her.

[treefrog]

Oh, I forgot to mention all the treatment I've gone through, so here's that.

PT - stretching, massage and ultrasound all felt good, but when I would try to do strengthening exercises I would have more pain. None of the PT helped reduce my pain.

ESI's - have had three, each only gave me limited reduction in pain, which only lasted about a week each time.

Facet injection, and block - nothing.

Acupuncture - nothing.

I have lower back pain, more pronounced on the right. I have pain that goes into my right hip and into the front of my thigh down toward the inside of my knee, this seems to be more controlled since starting on the Opana. Occasionally I have had pain that goes into my butt, both sides. And since the discogram I now have slight numbness and sort of a tingly feeling, in both lower legs and heels, more on the right than left. In fact this morning was the first time that pain abruptly awoke me from sleep (though pain in general seems to keep me from sleeping well), and it was pain in my right heel. I was able to move positions and the pain abated.

And this past week or so I've begun to feel a stretching, pulling like pain farther up on my back (still lower back though), when I bear down in the bathroom or if I lean forward.

[Justin]

Welcome Treefrog! I didn't read your post, but I wanted to drop in and say hi. I gotta run...

[New-disc]

Treefrog,

Hello.... what do you study as a scientist?

Todd

[treefrog]

Currently I work in a lab at Duke University that researches prostate cancer. My boss (PI or primary investigator) is an MD, so some of our work involves clinical trials. I have a MS in biotechnology, and I have worked in several different areas of biological science.

Because of my back, I'm not able to do the actual experimental work any more, so I am doing lab management. Unfortunately my boss really needs me to be able to do more than I am currently doing. Another lab member is leaving in July (hopefully for med school), and when he leaves someone will have to take over his duties. He has been doing most of the tissue collection (biopsies for the clinical trials), and the follow-up processing of the tissues. In one of the trials, the tissue processing is going to have to be done immediately, because patient treatment is going to depend on the results. Which means several days of intense, full days of work.

This is a big dilemma for me. If I don't have surgery, physically I can't do the work. If I do have surgery, will I be back in time to take over.

[New-disc]

Treefrog,

I sounds like your walking that fine line most of us spine people walk.

Always seems like we're giving something up to get something done.

Take care of what you need fixed first .... then you will be able to help those that are in need around you.

I have a 7yr old that watched me for a long time crawl up the steps to put her to bed.

Post-surgery...

(I'm now able to help her in so many new ways)

Todd

[SandyW]

Cathy,

Dr. Yue is at Yale. Trying to think, but somebody just had surgery in New York City. Delamarter is in Santa Monica, CA; Zeegers, Munich, Germany. I think he is more expensive than Dr. B maybe since he's in Munich as opposed to Bogen which is a small city.

I believe if you ask Mark Minster (look at member mmglobal which will give you his business site), he can set you up for a quick consultation with Dr. Bertagnoli. He can probably tell you about other surgeons in the U.S., but I believe he won't answer on this site - conflict. You can get a recommendation from him, it doesn't mean you have to go to Germany. It costs around $250 for the actual consultation whether you go thru Mark or Dr. B and Mark would be faster. Asking Mark questions is free (within reason - lol).

I don't know which device you're looking at, but Yue and Bertagnoli use ProDisc (may use others) which I've heard is not as forgiving when it comes to facets.

You can also call Synthes, the manufacture of Prodisc-L, and ask them for doctor's names that are doing ADR lumbar surgery. Then you have to call them and ask how many they have done. Sorry that it takes so much work to find out what you want to do.

I don't remember if you've tried getting insurance coverage for ADR in the U.S. But if you can't, the cost is usually less in Germany, even with the exchange rate, flight, etc. If you can't get insurance coverage, the doctor and hospital here will give you approximate costs - and I think without insurance they will give you a better price.

Good luck and God Bless, Sandy

[dshobbies]

Mark's business site is GPN Artificial Disc Replacement ADR.

[Kathy]

Dr. Yue is one of the researchers for the Activ-L clinical trial. By doing the trial, they pay for all charges that are incurred at the hospital. You pay (insurance is billed and you pay the remainder) for pre-op visits, testing, follow-up visits, medications, physical therapy, x-rays, etc. I had posted a week ago "Have you heard of any of these dr's?" thread, which listed Dr. Yue. The list was all the dr's still doing the Activ L trial. I decided to go to Florida to Dr Garcia, wanted to go there or to California, as I am not made for the cold weather. "Winter" where I am going is low of 65, average daily temp is 75-78; my kinda place.

[treefrog]

How do you make contact with any of the researchers doing clinical trials, in order to find out if you qualify? I had tried to look through the FDA website, to see which trials were open, but I didn't see any. But then I hear people talking about these ADR trials being open, and I don't know where you all get the information from.

Well, after tomorrow's second opinion consult, I can decide how I want to proceed from there.

- Contact Mark about consults with German doctors (although I guess he doesn't work just with the Germans).

- Look for doctors in the US doing ADR trials, and figure out how to contact them.

- Contact some other US doc's whether they are doing trials or not.

I don't know. I think I will have a better idea tomorrow. I have a lot of questions lined up for this neurosurgeon. Including getting his opinion on 2-level ADR, and who he thinks is best to do whatever surgery he feels is right for me.

[treefrog]

The consult with the neurosurgeon was a bit discouraging. He doesn't seem to like ADR, said it didn't produce any better results than fusion. Of course, he might be biased, his practice is expert in a minimally invasive fusion technique with approach through the side.

But he said in my case, he would say surgery is 50/50. He said, if my pain were conclusively mechanically induced, then surgery would be more clear cut. In other words, he thinks results are best if a patient has mechanically induced back pain.

Mechanically induced back pain = pain that goes away with relief of the pressure on the disc, for instance when lying down.

He also said that with my transitional anatomy, that he wasn't sure he would be able to get to my L5-S1 using his minimally invasive side approach fusion technique...which shows you where his head is.

He said the Europeans don't think like "us", and I should only go with data from the US. That there wasn't much more than anecdotal evidence from Europe, so he doesn't count that as evidence. Which that may be true....but.

He had extension and flexion x-rays done before I saw him. But he didn't mention the results of these, so I don't know if they showed him anything in particular. He ordered another MRI, since mine was a year old. Then I go see him again.

I have the MRI on 2/11, then the consult with him on 2/18.

I think I will ask about getting the MRI and flexion/extension x-ray images from him on disc (if possible). And I will also ask my PM doctor if I can get the old MRI (though I have the films already), x-rays, and CT-scan and x-ray from the discogram images on a disc as well. Then I will have them conveniently available for other consults.

Especially after today's consult, I am very discouraged. I am scared of what my life will be, if I can't get rid of this pain. I will most likely have to look for a different job. Because although I know my boss values my contribution to the lab, I don't think that for the long-term he will consider what I am doing now worth the amount he is paying me. And I know that it must be very tiresome for my boyfriend to have a girlfriend who can't do much of anything social, or clean the house, or have sex. Will he want to stay with me? Even after being together for almost 18 years, I'm not sure.

It seems like surgery is my only option, even if the outcome is so up-in-the-air. The only possibility of being pain-free, or close to it, is surgery. But again, the idea of surgery scares me. What if I end up with more pain? Unable to care for myself? What happens to me then?

Right now, I am inclined to go to Germany for surgery. I really, really do believe that is my best option, and seems to be the best option for any spine patient. But based on that last statement, am I being naive and unrealistic? I haven't even had a consult with anyone in Germany. But I keep hearing over and over again, that the most important consideration is the surgeon. Make sure you have a surgeon who has done 100's of surgeries. And I keep hearing how Dr. Bertagnoli and Dr. Zeegers are the best spine surgeons in the world. Well 2+2=4. I should go to Germany for surgery.

My head is spinning.