ADR in 3-4 Months - General Questions

[racheleddie]

I have been experiencing severe low back pain for over a year now, although there has not been a "incident" that started the pain. It began with numb toes, general low back pain, and has progressively gotten worse. I have done PT, traction, 2 blind epidurals, 1 fleuroscopy epidural, 2 MRIS, 1 CT Scan, and a discogram. I have been diagnosed with L4-5 herniated disc, spinal stenosis, arthritis, and disc denerative disease in the mid back. I have now made the scary decision to go with ADR at L4-5 to relieve this back pain, as I am only 46 years old and cannot imagine living the remainder of my life (30-40 years I hope!) with this pain. My options were live with the pain, spinal fusion, and ADR. The Ortho Surgeon said that if I went with fusion I would likely be back in the OR in 10-15 years. I have several questions to see if anyone else is experiencing the same symptons I do, pain med levels, and overall expectations. I have read many of the threads here and many of them seem to offer great hope and others scare me because the seem to be worse off.

I have a lot of pain over the top of the foot. Many of the doctors that i have seen say this is unrelated, a few have acknowledged that this would be related to the back, and I have read on the internet that it is very likely that the back is the source of this pain. For the short periods of time when I have been pain free from the epidural injections and the 7 hours of pain relief from the discogram, this foot pain has gone away, so I feel pretty strongly that this is in fact related to the back injury and am so hopeful that the ADR will relieve this pain.

I also have pain mid back, which they say is denerative disc and a slight bulging T5-6-7. Do you think some of this pain will be relieved with t he L4-5 ADR?

I am currently on Opana 40 twice a day, but it does not offer much relief. I just started this on Friday, so I keep hoping that eventually I am gonna wake up and the meds will work. The Oxycontin and Norco combination seems to work better for me, but the pain mgmt dr I was see was very stingy with the pain meds, and would only give me enough meds to take 2 40 Mg Oxys and 4 Norcos a day, which after several months, no longer worked at these doses. If I took more during the month, then I would be face with no pain meds at the end of the month. It has been a nightmare to find the right combo of pain meds to make my pain level tolerable enough to carry on with my life, such as working. I can no longer do fun things that I used to enjoy such as gardening, shopping, etc. because I pay big time after. Does this pain med regimen seem excessive and out of control? I am 5' 10" and about 190 lbs...don't know if that makes a difference, but I am no little tiny thing!

I am looking forward to using this forum as I go through my ADR journey, as I am sure I will need some encouragement at times that things will get better!

Best of wishes to all of you that are suffering daily from chronic pain!

[2cool4U]

Welcome to these forums. I hope you will find them to be helpful as you navigate the rough waters of back pain treatments. I am sorry to hear about your problems. I hope it helps to hear that your story is very typical of the members here, and that there is hope for relief.

Medication regimens are so highly variable that there is no one particular course of treatment that is typical. One common thread that you hit on in your story is the need for increasing doses or switching of medication due to tolerance that occurs with long-term use of pain meds. This occurs in every patient. Pain management docs have to balance pain control with ever-increasing doses, as there is a limit.

It sounds like you are at the point of deciding whether to have surgery and then what surgery to have. Once again, there is no one right answer. In reading your story, a few questions came to mind. Do your MRI's and other imaging studies indicate abnormalities only at the L4-L5 level, or are there other abnormalities? You had a discogram; what were the exact results? And finally, have you had facet injections or SI joint injections? Have you tried a TENS unit at all? Have you spoken to a surgeon who has experience in ADR?

Coordinating all of these and then interpreting the total picture is important, as any one test taken alone could lead to an ineffective treatment course. As far as your comment about having fusion and needing another surgery later, I agree that this appears to be an important benefit of ADR. However, remember that ADR hasn't been around in significant numbers of patients for long-term results to be reliable. I chose ADR for that theoretical benefit, as well as b/c of reported shorter recovery times and better patient satisfaction. But anyone who's being honest will have to agree that we don't have 20 yr. results yet anywhere, including Europe.

My first hope is to never need another surgery. Barring that, I'm hoping that newer techniques will allow for repeat treatment if needed in 10 or more years. However, ADR does not always eliminate all of the pain, and it may not be the permanent solution some think it to be. I think anyone considering ADR would be well-advised to keep these things in mind. Having said that, I am extremely happy with my recovery 28 days out, for what that's worth

Good luck with your research.

[Harrison]

Rachel, thanks for finding us in the midst of your troubles. I hope we can provide the support that you need to support your path to wellness.

TConner offers so many nuggets of wisdom. I think all his points are better said than I could articulate, but this was particularly salient to me:

“Coordinating all of these and then interpreting the total picture is important, as any one test taken alone could lead to an ineffective treatment course.”

This burden has historically rested on the patient’s tired shoulders. And that is just not right for someone that has a tired spine! That said, if you have an arthritic spine – at multiple levels – that could and probably should be a serious consideration to NOT have artificial disc replacement. But arthritis as different levels of the spine is very tricky; so please do have consultations with different arthroplasty spine surgeons. It may also be wise to consult with spine docs who are “anti – ADR” to gain some insights from their perspective as well. In the meantime, please visit this topic and read it carefully: ADR Risks, Complications, Disqualifications.

Can you elaborate on all the doctors’ visits you’ve had? What explanation do they have about the foot pain?

“…Many of the doctors that i have seen say this is unrelated, a few have acknowledged that this would be related to the back…”

When you can, please insert a short signature line…thanks.

[racheleddie]

Thank you TConner and Harrison for responding to my post. I have never gotten involved with any posts, but always enjoy reading them, and so I have decided to give this one a try since this is such an important decision. TConner, regarding you questions:

Do your MRI's and other imaging studies indicate abnormalities only at the L4-L5 level, or are there other abnormalities? Basically just at the L4-L5 levels. I did demand an MRI for the mid-back with was done in mid January, and that one did show the DDD at the T level.

You had a discogram; what were the exact results? WOW, exact results...well, the dr that did the discogram told me that the test was conclusive that the pain is definitely coming from the L4-L5 disc, but as far as seeing an actual detailed report, I have not as of yet. I have Kaiser insurance and they are not always great about providing you with detailed reports.

And finally, have you had facet injections or SI joint injections? No, does that sound like something thaat may be helpful for me? No one has ever mentioned these to me as I have been going through treatment.

Have you tried a TENS unit at all? No., again, this has never been presented to me as an option. What dr of the several do I discuss this with? GP, Pain Mgmt (he is the one that has some the epidural injections and discogram, but does not manage my pain meds), or pain rehab (this is the dr that WAS managing my pain meds until I got too frustrated with him, and now I am going back to my GP for pain med mgmt as I love her)

Have you spoken to a surgeon who has experience in ADR? Yes, I had a consultation with the Ortho Spine Surgeon last week. He is the one that laid out my wonderful options of live with it or surgery.

I just don't know what to do...I cannot live with this pain for the rest of my life, but while the surgery sound promising, it is a scary proposition as well. That is why I have decided to post to this board for some experienced advise!

[racheleddie]

Harrison, regarding your question about arthritis, my surgeon has requested a CT scan to make sure that there is not arthitis at L4-L5 in the facet joints to make sure the surgery would be appropriate. I will be having that in mid March.

You also asked Can you elaborate on all the doctors’ visits you’ve had? What explanation do they have about the foot pain?

LOL...I have been to so many doctors and so many times that Ihonestly have lost track. With Kaiser, you cannot alwasy see your GP, so many times when you call because you are in severe pain, you go some another GP...this was at the being of the back problems...several of these misc doctors told me the foot pain was not related, as well as the pain rehab doctor. The Neurosurgeon and Pain Mgmt (Anestegolist) dr both said it could be related. Should I be extremely scared and running for the door that these doctors are saying that it "could" be related? I definitely think that it is related, and if the ADR surgery fixes just that I would be much happier!

[racheleddie]

Harrison, I have updated my signature and this is just a test to see if it is working.

[2cool4U]

The TENS unit would just be for short-term symptom relief, and it may help you to decrease your medication dosage and still be comfortable. They can be obtained from physicians, physical therapists, and now online without a prescription. I used Amazon to purchase my units relatively cheaply. They are not a long-term solution.

The facet and SI injections may provide info that you have only one pain source or more than one. For example, although the discogram was positive at one level, it may be of value to have facet injections to make sure that none of the pain is facet related before deciding on surgery. The same is true of SI joint injections. Pain from all of these sources is similar, and discograms, like all other tests, are not 100% reliable.

None of this is absolutely necessary before surgery. It simply depends on your degree of certainty of your diagnosis before deciding on surgical treatment, which is not reversible. And arranging all of this could delay your surgery, which may not be acceptable to you. As far as the foot problem, getting the answer that it could be related is probably the best that your doctors can do. It may not be possible to know until the spine problem is adequately treated. If it then goes away, obviously it was related. So many different problems can have the same symptoms, and some single problems can have many different symptoms, that it becomes impossible to give a definitive answer until treatment is tried and is either successful or fails. While we try to apply the scientific method to medicine, it still remains as much art as science.

There's just a lot to consider, and when we're in pain, it's the worst time to try and critically assess all of the info. Best of luck whatever you decide.

[AJ]

... but sorry that you are in this position.

The only advice I would give is to have as few unanswered questions left as possible before you make any decision. If you are unable to have a few hours in reasonable comfort to rationally think it all out then use someone else you trust to do the weighing up on your behalf.

[hezeronek]

Originally Posted by racheleddie

I have been experiencing severe low back pain for over a year now, although there has not been a "incident" that started the pain. It began with numb toes, general low back pain, and has progressively gotten worse. I have done PT, traction, 2 blind epidurals, 1 fleuroscopy epidural, 2 MRIS, 1 CT Scan, and a discogram. I have been diagnosed with L4-5 herniated disc, spinal stenosis, arthritis, and disc denerative disease in the mid back. I have now made the scary decision to go with ADR at L4-5 to relieve this back pain, as I am only 46 years old and cannot imagine living the remainder of my life (30-40 years I hope!) with this pain. My options were live with the pain, spinal fusion, and ADR. The Ortho Surgeon said that if I went with fusion I would likely be back in the OR in 10-15 years. I have several questions to see if anyone else is experiencing the same symptons I do, pain med levels, and overall expectations. I have read many of the threads here and many of them seem to offer great hope and others scare me because the seem to be worse off.

I have a lot of pain over the top of the foot. Many of the doctors that i have seen say this is unrelated, a few have acknowledged that this would be related to the back, and I have read on the internet that it is very likely that the back is the source of this pain. For the short periods of time when I have been pain free from the epidural injections and the 7 hours of pain relief from the discogram, this foot pain has gone away, so I feel pretty strongly that this is in fact related to the back injury and am so hopeful that the ADR will relieve this pain.

I also have pain mid back, which they say is denerative disc and a slight bulging T5-6-7. Do you think some of this pain will be relieved with t he L4-5 ADR?

I am currently on Opana 40 twice a day, but it does not offer much relief. I just started this on Friday, so I keep hoping that eventually I am gonna wake up and the meds will work. The Oxycontin and Norco combination seems to work better for me, but the pain mgmt dr I was see was very stingy with the pain meds, and would only give me enough meds to take 2 40 Mg Oxys and 4 Norcos a day, which after several months, no longer worked at these doses. If I took more during the month, then I would be face with no pain meds at the end of the month. It has been a nightmare to find the right combo of pain meds to make my pain level tolerable enough to carry on with my life, such as working. I can no longer do fun things that I used to enjoy such as gardening, shopping, etc. because I pay big time after. Does this pain med regimen seem excessive and out of control? I am 5' 10" and about 190 lbs...don't know if that makes a difference, but I am no little tiny thing!

I am looking forward to using this forum as I go through my ADR journey, as I am sure I will need some encouragement at times that things will get better!

Best of wishes to all of you that are suffering daily from chronic pain!

Hi Rachel!

I'm sorry to hear you are having so many problems. It seems most of us here are in similar situations. I, too, will be having ADR surgery in a few months. I've spent a lot of time researching my options, and have finally made my decision. It wasn't an easy one to make, and I still have many questions. It is difficult to make an informed decision with all of the conflicting information out there.

From what I hear of your situation, I would ask some more questions about how your arthritis and what that could mean for you down the road. Some of the articles I have read suggested this might be a contraindication for ADR. (Stenosis was mentioned as a possible contraindication as well.) Also, make sure you are realistic about your expectations coming out of surgery. Your rebuilt back will NOT be as good as the one God originally gave you. And, the potential for revision is still definitely there with ADRs. So you may end up on the operating table more than once regardless of which surgery you choose to have.

That said, I'm still taking the plunge myself. My life has just gotten to that point. I'm not ready to accept a fusion. I don't like the idea of losing that much mobility at my age. (Or the recovery times, or the adjacent segment degeneration, or the horror that comes with failed fusions, etc...)
I'm only 29, and I understand that I may outlive my prodisc, and that I may be under the knife more than once in my lifetime. I still believe this is the best chance I have at leading the active life I once had. If I can get at least a few good years out of this, I'll still consider it a resounding success. I wish you the best of luck, and hope we both will be leading pain free lives soon!!!

BTW... Where are you going for your ADR?

[racheleddie]

I will be having my ADR done at Kaiser in San Diego. I called surgery scheduling today and they said they would call me in 4 months to schedule a date...I am so disappointed...I cannot stand this pain anymore..it has so negatively affected my life. I just have to keep that positive outlook that everything will be good again and I too will one day be pain free again!

Best of luck to all of you out there facing ADR surgery.

Hezeronek, I see that your surgery is scheduled in Germany. Does that make you at all nervous to go abroad for surgery? We were just discussing that at dinner tonight. How about payment...do you have to pay for that out of pocket, or will your insurance reimburse you for the costs. Best of luck...I am sure we will correspond again between now and our surgery dates (aka new lives).