Looking for advice

[jackal57]

Thanks to everyone for their input and feedback. It’s so helpful to know that other people who have gone through this are helping me think about my situation.
In no particular order:
Ouch2, congratulations on your progress, and thanks for your advice which I will use. What is your pain like now? It sounds like you’re current view of the process you’ve been through and are going through is somewhat tempered. I wish you great success in your recovery. I will be seeking advice from the overseas doctors, and am putting together the mountain of test results and other information I’ve accumulated over the past 2 years. I’m lucky in the sense that may parents grew up in Brazil speaking portugese and german, with some spanish thrown in. So if I have any trouble communication with the doctors, I think they can help.
Dingie, wow, what a great story. I think I can guess from your note, but it sounds like your experience with Dr. Clavel was a good one – is there anything you did not like about it? Please keep posting updates if you are willing to do so, as they are very inspirational.
And Harrison, thanks to you as well, this site is a godsend. I’m not sure to what I would attribute my DDD. My back has hurt for so long that I can’t remember when it started. I did get rear-ended at a red light 13 years ago (the driver was on a cell phone the size of a WWII walkie-talkie and didn’t look up in time –argh!), but I don’t think that was it. Ive always played a lot of sports, so maybe repeated abuse or some unusual pathology if I had to guess.
Two more questions for the group:
1) A surgeon told me that my L5-S1 is at the point where it will probably autofuse within 5 years and that should take care of the pain from that particular area. Does anyone know anything about that? It sounded strange to me.
2) In December 2011, I had an electromyographic (EMG) evaluation, which was mostly normal, except: “spontaneous potentials (fibrillations or positive sharp waves) except for 1+ positive sharp waves and occasional fibrillation potentials in the right semimembranosus, as well as 2+ positive sharp waves and occasional fibrillations potentials seen in the right L5-S1 paraspinals, withincreased polyphasic activity noted in the right semimembranosus muscle.” The doctor (who, by the way, I really like) concluded the results were “consistent with a low-grade, acute upon chronic, right S1 radiculopathy”. Does this mean anything to anyone?
As always, I’m looking forward to your input.

[jackal57]

Thanks to everyone for their input and feedback. It’s so helpful to know that other people who have gone through this are helping me think about my situation.
In no particular order:
Ouch2, congratulations on your progress, and thanks for your advice which I will use. What is your pain like now? It sounds like you’re current view of the process you’ve been through and are going through is somewhat tempered. I wish you great success in your recovery. I will be seeking advice from the overseas doctors, and am putting together the mountain of test results and other information I’ve accumulated over the past 2 years. I’m lucky in the sense that may parents grew up in Brazil speaking portugese and german, with some spanish thrown in. So if I have any trouble communication with the doctors, I think they can help.
Dingie, wow, what a great story. I think I can guess from your note, but it sounds like your experience with Dr. Clavel was a good one – is there anything you did not like about it? Please keep posting updates if you are willing to do so, as they are very inspirational.
And Harrison, thanks to you as well, this site is a godsend. I’m not sure to what I would attribute my DDD. My back has hurt for so long that I can’t remember when it started. I did get rear-ended at a red light 13 years ago (the driver was on a cell phone the size of a WWII walkie-talkie and didn’t look up in time –argh!), but I don’t think that was it. Ive always played a lot of sports, so maybe repeated abuse or some unusual pathology if I had to guess.
Two more questions for the group:
1) A surgeon told me that my L5-S1 is at the point where it will probably autofuse within 5 years and that should take care of the pain from that particular area. Does anyone know anything about that? It sounded strange to me.
2) In December 2011, I had an electromyographic (EMG) evaluation, which was mostly normal, except: “spontaneous potentials (fibrillations or positive sharp waves) except for 1+ positive sharp waves and occasional fibrillation potentials in the right semimembranosus, as well as 2+ positive sharp waves and occasional fibrillations potentials seen in the right L5-S1 paraspinals, withincreased polyphasic activity noted in the right semimembranosus muscle.” The doctor (who, by the way, I really like) concluded the results were “consistent with a low-grade, acute upon chronic, right S1 radiculopathy”. Does this mean anything to anyone?
As always, I’m looking forward to your input.

[Dingie]

The only negative I have, i believe will already be taken care of, but just in case. Prior to my OR during my phone consult with Dr. Clavel, I asked about pain management postop. I am an old RN and did not really believe the stories of I only need tylenol 2 days postop. He said dont worry we will take care of whatever you need. I did not come with my own aresnal of pain meds. The way my prescriptions ran it took me just up to the day of OR. My US MD expected they would manage my pain postop.

After a bit of confusion and several days of trying he finally got it worked out to what I needed postop. I will say there are some people who seem okay with just tylenol, I was not one of them. He believed that all US pts would be able to bring whatever they needed. Not so, as you well know.

I strongly believe this will not be a problem in the future, he and his staff are ridiculously on top of any issues. I also paid extra to have a vascular surgeon on the room with me, i was a 3 level and there are issues with where the arteries bifurcate in relation to the discs I was having replaced. It is not necessary, but 30 years of working in ICU/ER you only see the worst!

I really have no other complaints, the med issue was taken care of for me so for me it is nothing short of a miracle.

I would like to see how to assist in lobbying so people who do not have the funds can get the care they need and deserve here in the US. Or altenatively funding for overseas care. I feel selfish that I got so much just because I had the funds to access care that should be available to all.

I wish you success in your search, everyone likes heir MD, but there are many qualified, just go with whom you feel most confident.

Laurie

[janaya3]

Originally Posted by jackal57

If you don't mind my asking, I'd really like to get a better sense of your activity level capabilities at this point. It sounds like you were very active before your back problems, as was I. I still lift weights 3-4/week, but I have had to really limit what I can do, both the types of exercises, as well as the amount of weight. Im extremely careful about anything that puts stress on my lower back. I also try to walk a slow mile on the treadmill every other day, but that tends to lead to problems, like back spasms and nerve pain in my glutes and legs if I go even a little more than a slow walk. Its not much, but Im fighting like crazy to stay as active as I can. The activity makes me feel better mentally, and as I am also diabetic, it helps marginally with my glucose control. But I really need to increase the exercise dramtically if its going to be a real factor for me in my diabetic control regime.

Which leads me to my question about your activity level. Are you able at this point to do any rigorous exercise? If not, do you feel like you ever will be? If your history is an indicator, I can imagine it must be tough for you to restrict your exercise.

I still have dreams of getting back to my 2x/week basketball game and lengthy bike rides. I doubt I ever would actually play hoops again, even if my back would let me, but it would be nice to have the option.

Thanks again for sharing your thoughts and experiences.

As of today I have no limitations and really haven't tackled anything rigorous yet in the form of any crazy workouts with rigorous exercises for that matter. I am now 100% pain free which was my ultimate goal. I just didn't want to post it so soon because I wanted to give myself more time just to make sure this wasn't some fluke or a temporary thing. I am much smarter about how I work out in the gym these days (although I have always been) and don't really want to push my upper limits quite so soon as I feel I have been granted a second chance...and one that I intend to preserve (meaning less wear and tear on the Prodisc L) but I can do most exercises without aggravating my back. The overhead shoulders presses, whether on a machine or w/ free weights, seem to still put some unusual stress on my back so I just reduce the weight or find other ways of working out my shoulders...plenty of exercises for that. I have actually taken some time off from the gym to spend more time with my family (wife and 2 kids) and to really enjoy and participate in life which was something I had missed due to my previous debilitating condition.

As for basketball, I had to give up playing basketball not due to my back but rather because of an ankle ligament reconstruction due to a high ankle sprain I suffered many years ago before my back started "acting up". I wasn't going through that again! I still play on occasion but not aggressively or for competition as I did before...more like when my friends trash talk and I just want to shut them up, though. My shot is still there but I probably won’t be trying to dunk over anyone anymore. I probably won't be taking on any high impact sports or exercises as I don't have a desire to injure or stress any other body part but I do have the intention of returning to long distance running/jogging.

I guess anything is possible and perhaps you will be able to return to playing basketball you're probably just going to have to be patient. I also think that what helped me was the fact that I did some PT several weeks before surgery. Good luck with your endeavors.

[jackal57]

For the response. Its great to hear you are doing so well. I wish you continued good health. Im off to see a dorctor for a consult on Thursday and will post afterwards with the hope that you all will give me the continued benefot of your wisdom.

[JPJH]

The long and the sort of it is. Read this forum and soak up the experiences many of us have had. Send your MRI's, and whatever reports you have to several Doctor's. Just get yourself prepared for the fact one day surgery will come. You will be the only one to choose when and where that will be. You will hit a wall where you can no longer take the pain, or are tired of the pain meds. So then you take a look at every Dr. you consulted, whether it be here in the U.S. for fusion or ADR or abroad for ADR and when the time comes you'll have this gut response to one of them and then you'll know what you are going to do. Sounds easy, but really it's not. But seems that is how it works.

Best of luck to you. I know you will find your own path just as we all have.

JPJH

[laid up doc]

in Charlotte, best for ADR is Dom Coric and for fusion is Tim Adamson, both at Carolina Neurosurgery and Spine.

Bruce Darden at OrthoCarolina is a pretty straight shooter too.

[jackal57]

Hello everyone, its been a while since I posted and wanted to again seek the generous counsel of you all. Ive gone through many tests over the past few months and tried to better educate myself as many of you suggested. Ive also talked to multiple surgeons, all of whom were recommended to me by various persons on this site and in my "real" world.

Ive done adiscogram (that was fun), and more MRIs and CT scans. The discogram showed 8/10 pain on L4-L5 and 10/10 on L5-S1. (As an aside, it was a strange experience, as i was "twilighted" and could hear myself screaming unimaginable curse words at the doctor performing the procedure, even though i couldnt control myself. I could hear the nurses laughing, and they told me later that I had been pretty creative in my choice of words. They said they had thought they had heard it all before, but I was unusually entertaining - Im glad somebody enjoyed it!).

I met last week with a surgeon I have come to trust who told me: (i) my L5-S1 is indeed autofusing but there's no way to guess how long it would talk to finish itself so ADR is not an option and fusion is the right thing to do and (ii) L4-L5 is a good candidate for ADR if thats what I want. He went on at some length about the contraindications for ADR and told me in his view my facet joints were in good condition. He told me also that he felt that given my condition, fusion would also be a good option for this level.

I feel like I'm nearing a point where I need to make a decision. from April through June, my pain went into a good phase and I was working out regularly with weights, (but still no cardio - I cant walk 1/4 mile withou the pain shooting through my back, glutes and legs, same for ellyptical and stationary bike). But a feww weeks ago the more sever pain began asserting itself again, and I think I just need to face the music and deal with this. I have 3 kids (the latest is 10 months!!!) and its having a really bad effect on my ability to interact with my kids they way I want to.

My dilemna is - no suprise - insurance related. My policy will pay for a 2 level fusion, but not a hybrid L4-L% ADR and L5-S1 fusion. If Im understanding things properly, I cant do a fusion on L5-S1 and then subsequently do a ADR on L4-L5, and vice versa. So the net effect is I can do a 2 level fusion and get it paid for, or do a hybrid (like I think I want to do) and pay for it myself (meaning Im paying for the fusion "portion" of the surgery as wel as the ADR).

The surgeon talked to me about overseas option and told me he liked Luiz Pimenta in Brazil. He said he had actually been down to Brazil to see Dr. Pimenta and witnessed his surgies. He said Pimenta and his staff were very professional and good. He even offered to coordinate a meeting with Dr. Pimenta if I wanted him to.

Anyone have any thoughts on this? on Dr. Pimenta? on hybrid ADR/fusion surgery option? I'd really appreciate any input anybody has.

And Janaya, I hope your recovery is going well. Please keep up the posts, they are so helpful to read.

[annapurna]

Originally Posted by jackal57

If Im understanding things properly, I cant do a fusion on L5-S1 and then subsequently do a ADR on L4-L5, and vice versa. So the net effect is I can do a 2 level fusion and get it paid for, or do a hybrid (like I think I want to do) and pay for it myself (meaning Im paying for the fusion "portion" of the surgery as wel as the ADR).

You can do the surgeries as two separate steps. It means two procedures with all of the risks of two procedures. Scarring of the blood vessels is a real concern and can lead to real problems with the second procedure. You could also speak with an insurance advocate to see what could be done about getting a fusion done overseas covered by your insurance.

I can't speak from direct experience about Pimenta but he seems to be the ADRSupport sleeper surgeon. Almost no one talks about him but he seems to be involved in every new thing and new idea, often before the regular surgeons mentioned here are playing with it.

[jss]

Jackal,

The posters on this site that go by Sandy123 and Maggie both underwent lumbar spine surgery with Dr Pimenta. Both had excellent outcomes and rave about Dr Pimenta. If you PM'd them I know they'd be happy to share their experiences with you.

I did extensive research when putting together my third appeal to BCBS-TX for reimbursement of my double cervical ADR. During the course of that research I observed that Dr Pimenta's name seemed to appear more in English language ADR research studies than any other surgeon; including Zigler and Bertagnoli. Dr Pimenta is well liked by his patients, widely published, and profusely cited by his peers. Though he doesn't get much attention in this forum, I came away from my research with the impression that he is one of the premier ADR researchers on the planet. I have two fusions, two ADRs and will most likely need one more fusion or ADR in the future. If that day comes and for whatever reason my last surgeon is not available, I will consider Dr Pimenta.

Good luck, Jeff