What would you do? Thoughts?

[steve55]

Had my discogram today.The bad news is that it looks like I will need 2 level ADR instead of just 1. Here are the results:

C4-5 -small posterior leak-volume pressure normal-no pain
C5-6- Abnormal, degenerative, leaky -reduced pressure-moderate pain
which patient rates 7/10
C6-7 - Abnormal, degenerative, leaky -reduced pressure-sever pain which patient rated 8
out of 10
C7-T1 - Normal-pressure normal- no pain

INTERESTING thing is that my discgram in June of 2008 (with a different doctor) only showed C6/7 causing pain. Seems I am getting worse now that C5/6 is bad now also.

I guess I should try to go for the 1 level since my Aetna will most likely approve it. Then go to Germany for a 2nd surgery as soon as I recover from the 1st? My doctor says"no need to go to germany if you need a 2nd level, we can do it here". I didnt say what was on my mind which was "yea, but at twice the cost?". Even if I am willing to do 2 level ADR at the same time and just pay out of pocket for the 2nd, one member here says insurance will come back after surgery and say 2 level is not approved and use that as an excuse to deny covering the 1st level!! I dont think I like that risk.

On the other hand, once you do ADR, there's no turning back.Soooo, maybe I should go for the fibrin (sealant) procedure first? For those of you not familar with Fibrin, it is a very promising brand new procedure currently undergoing FDA trials. Many patients are reporting success. If I do try out the fibrin procedure first, I can kiss my Aetna option goodbye as my employer is changing insurance carriers to Humana as of Feb 28th. Humana is not ADR freindly. Regarding Fibrin, one patient who had it done and knows about it says that they report that it has about a 80% success rate and it lasts for at least 3 years or more. (seems ADR is also about a 80% success rate from what I have observed by perusing outocomes on boards like this) Though there are only a few posts I have read of people getting fibrin done. Hardly much to go off of. Then again, I dont want to have to have fibrin redone every 3 or 4 years if that is how it is with many patients. WHat if Im in the 20% who dont get relief? If so, Ive just blown $20K by letting my Aetna option for 1 level expire. . Fibrin is not yet FDA approved. Might there be risks, after affects? Cancer causing agents in the fibrin material? On the positive side, ADR seems a "known" and lasts 10-20 yrs?

If I go the fibrin route, and it doesnt work, Im going to have to pay $30 -$40K for 2 level in Germany. I will have to use all my savings,(sell stock, cashout 401K, etc). Ill be a broke dude for sure.

So far, Im leaning towards getting ADR 1 level (paid by insurance) and then trying fibrin sealant for the other level (guessing fibrin will cost about $4K). If that doesnt work, I can go for a 2nd ADR and pay only $20K in germany.

It isnt a big deal to do back to back cervical ADR surgeries is it?

[SandyW]

C4-5 -small posterior leak-volume pressure normal-no pain

C5-6- Abnormal, degenerative, leaky -reduced pressure-moderate pain
which patient rates 7/10
C6-7 - Abnormal, degenerative, leaky -reduced pressure-sever pain which patient rated 8
out of 10

You need advice from the more knowledgeable members!

IMHO I like your last scenario, BUT??

1) C6-7 ADR, insurance pays now
2) C5-6 Fibrin, you pay. It lasts 2-3 yrs and in that period of time maybe?? insurance starts paying and there will be better devices, more experienced surgeons.
3) C4-5 might go bad during that time period and by then insurance will pay, etc. for 2 ADRs

As Smokey the Bear says "only YOU can decide". A bummer! You're sort of between a rock and a hard place.

If going to Germany won't leave you destitute, I'd go there and have the two done - get it over and start enjoying your life? Can you take money out of your 401K without a penalty, is it invested in stocks? Not a good time to sell stocks. Can you get a medical loan?


I took some cash advances on those credit card offers you get in the mail, like no interest till Oct, 2009. I only had to pay 3%, then chop away at it till the no interest date ends. If you can't pay it off then, transfer to another credit card with 0% interest. Only do this one time unless they are waving the cash advance fee. Remember the 3% interest (cash advance fee) for 6 mos is the same as 6% interest for 1 year. A medical loan might be higher? Not sure you'll understand what I'm saying, but if you do, you can move money around and reduce your costs.


I know this doesn't really help you, just more ideas. Good luck and God bless, Sandy

[mmglobal]

You can generate pain in a healty disc. Was it concordant pain? Were you saying... "yes, that's what I feel when I'm having a bad day" or was it unlike your 'memory pain'?

[dshobbies]

I don't understand why Aetna will pay for 1 disc and not 2. Have you asked them about it or are you assuming the 2 will be denied?

Tell your doctor about your plight. He can argue your case with Aetna.

The problem is that you're changing ins. co.s in one month's time so the time element is the important factor here. Find out Aetna's policy for fast authorizations and/or appeals and start now.

Good luck, Dale

[phylly]

If I had a "mulligan", I would take the one paid for by the insurance and see how I felt after. No surgery is good but maybe one will work. Less may be better?
Phylly

[steve55]

Originally Posted by mmglobal

You can generate pain in a healty disc. Was it concordant pain? Were you saying... "yes, that's what I feel when I'm having a bad day" or was it unlike your 'memory pain'?

Yes, in fact, both of the bad discs said concordant pain on the report.

The pain was definitley "unlike my memory type pain". It was darn near horrific. My normal pain I feel on a daily basis is more like a deep penetrating ulceric dull type pain that is so bad that I get nautious.

Mark, question for you. Ive read many posts where people either end up waiting for 1-2 mo to get surgery in germany, or cant contact the german doctors at all. Many have inquired or sent their films etc over 4 weeks ago and still havent heard anything back. Whats the deal on that? Is there a very long wait to hear back and get surgery scheudled?

[mmglobal]

I'm not sure I understand... is it concordant pain that is like 'your pain'... or is it different. Perhaps you are saying that the discogram pain was more intense? But, they are trying to identify it the pain is much like what you experience with your back problems.

All of the docs are different in responding and they vary from time to time. Sometimes they respond very quickly, sometimes they get backed up. Sometimes there is a glitch in the communication. Just like most things spine... there is no definitive answer.

Mark

[steve55]

Originally Posted by mmglobal

I'm not sure I understand... is it concordant pain that is like 'your pain'... or is it different. Perhaps you are saying that the discogram pain was more intense?
Mark

Mmm, its hard to say, but I think it was a similar type pain, x 100. I mean, normally, I just have that deep dull, penetrative pain. But the discogram simply HURT like hell. LOL. Its hard to compare one with the other due to the severity of the discogram pain. But ya know, it makes sense because when they gave me epidurals at C6/7 I felt 100% better for a few days, and then when they did the Plasma disc decompression at c5/6 and C6/7, I also felt 80% relief. So, once again, another test shows issues at these same levels. It has to be the disc.

Gosh, I sure wish we had more people who had the fibrin procedure done. I wonder what the real success rate is. If fibrin really works, then who needs ADR or fusion? Mark, is linda the only person you know who has had success with fibrin?

[mmglobal]

I've had 2 other clients with it.... one with kind of mixed, percieved, maybe success... one with no success. I'd have to get them to come and post... I won't write specifics about a client's case online unless I absoultely know it's OK.

[Roblin]

There is a guy from Hawaii named Sean who had it done and he got great results from it. I know a woman who is going in on February 18th to see if she is a candidate. She will be a good one to watch as she uses a walker to get around and is no longer driving so it will be interesting to see if she gets success from it. I am sure if my ProDiscs weren't so screwed up I would have gotten longer results. It worked so well however, that I am getting a second injection on February 11th. Also, Dr. Pauza's research assistant had it done at 4 levels a couple of weeks ago and was back to work 3-4 days later. She has a very screwed up spine also and has had to have more than one injection too. Supposedly, he has now injected around 200 patients and about 80% of them have gotten long-term (3 years) relief and still going. Please don't use me as a guage whether or not to try Fibrin because I have a unique spine situation as my ProDiscs are not placed correctly placing a terrible load on the rest of my spine.
Best wishes,
Linda

[Justin]

Steve,

Personally--I would do whatever is the least invasive option now, or if you are confident on surgery (deciding between ADR / fusion), pursue that route.

I would not base your decision based on cost alone. I know cost is a real issue (I had to sell my brand new truck at the time, etc.), but it should not overshadow your surgical decisions. Surgery is a significant life event and the decision making process can be overwhelming... I wish you the best in this process Steve. Don't hesitate to contact me by PM.

Just some general statements:

1) Many on this forum and other forums say "I could get the ADR and just fuse if it doesn't work out." This is a very dangerous thought process and was popular when ADR was "new" in America.

There is no way around it: spine surgery is MAJOR surgery.

2) You only want to be operated on once, if at all possible. Anesthesia has inherent risks, and, remember, surgery is not a guarantee of a reduction of pain. Multiple surgeries in the same part of the body present subsequent challenges (the normal process of scaring post surgery and the alteration of anatomy, access, etc.)

In regard to surgery: it should be only pursued after all conservative treatment has failed. Surgery is forever... there are no "do-overs."

3) You only get 1 spine in life....... and that's it. Only cross bridges when you feel absolutely comfortable, have done your research, can no longer live life with your quality of life, etc.

This decision ultimately rests on the patient.

4) Don't schedule surgeries based on meeting deductibles or deadlines before switching insurance companies, etc. IMHO, this should be irrelevant to the surgical decision process.

5) Don't base what surgical options you should pursue based on the outcomes of other patients. I can't stress this enough. People will have surgery and say "why am I not healing as well as so-and-so?"

Remember: we all have subtle differences in anatomy, and we must remember to take into account the duration of injury (1yr, 10 yrs, etc.). Our genetics are also very unique and our lifestyles (how we eat, what we do for a living [stressors], our activity levels [exercise]) also factor in to the equation. Co-morbidities can play a significant role.

We are not carbon copies of each other and surgery won't address everything you have going on in your life. At best, it's a band-aid.

[Terry Allen Blackburn]

Justin hit the nail on the head about surgery being a band-aid. There is nothing so magnificent, and good, as original body parts. Any one of us, who now has metal in their body, has a harbinger for bacteria to attach to, and cause all kinds of nasties. The natural body is an awesome thing, and should be allowed to heal on it's own. The only time you get surgery is, when all of the other options have went out the window. After surgery, you are never going to be the same, as you have; "PARTS"

Terry Newton

[New-disc]

Terry,

Replacement parts.... yikes!

Todd

[melodyl]

Steve,

Have you tried negotiating with your insurance company? Is your surgeon willing to write letters or make phone calls on your behalf? I am one month post op from a 3 level Prodisc C procedure. Initially, my insurance company denied the entire procedure....but after 2 appeals and intervention of my H.R. department and the broker between my employer and the insurance company I made progress. The bills have not yet been completly divided....but at a minimum, my insurance company agreed (in writing) to pay for: Dr, hospital fees and one implant. The cost of the remaining 2 implants is still undecided and may have to be paid for by me....but the cost of the implants (while high) is still much better than the cost of having an entire second procedure. Your doctor might also be able to help bring down the cost of the implants. Most hospitals mark up medical supplies for profit.....and often patients with insurance coverage are charged more than private pay patients. Although I am recovering quickly and fairly easily from the ADR surgery....it isn't something I would want to go through twice if it could be done at one time. Stay in touch with this group and let everyone know what you decide to do.