L2-4 stenosis/facet degeneration - l4-s1 ddd help

[tvdvmv]

I have severe stenosis at L2-4 with facet degeneration at 3/4.
Also, DDD at L4-S1. Am wanting to hear from those who have these issues and have had procedures done (successful or not) and where you were treated.
Thank you, Terry

[WPKat]

I recently found and joined this forum myself. The folks here have been very responsive and have provided valuable input, which I sincerely appreciate.

My diagnosis is similar to yours. My neurosurgeon believed that the source of my pain came from the severe central stenosis on L4/L5 and in March of 2009, I underwent a laminectomy on L3/L4 and laminectomy with disectomy on L4/L5. Unfortunately, my pain did not subside at all and complications from the surgery sent me to the ER twice with “off the charts” pain. Neither complication was life threatening, but certainly memorable. Now believing that the source of my pain was severe facet joint degeneration on L3/L4, the neurosurgeon shipped me off to a pain specialist.

Aside from managing my pain medications, they performed facet joint injections followed by radiofrequency thermocoagulation – essentially burning four of my left lumbar spinal nerves. Even though I had to be awake during the procedure to answer questions, I was “consciously sedated” and I tolerated both procedures just fine. However, healing was another matter. The pain caused by burning my spinal nerves was excruciating at best. Despite pain medications, I saw little relief for 10 days. In the end, the procedure not only did not reduce my back pain, it made it worse. Thankfully, the results are only temporary in that my spinal nerves will regenerate in 8 to 18 months.

In between surgery and procedures, I went to physical therapy but saw little progress. I learned some great stretching exercises though and don't regret going at all. Prior to my back deteriorating, I was in above average physical shape for my age – practicing Karate and my own home work out program faithfully. I only mention it because, while I can take a punch with the best of them, the pain caused by the condition of my back literally brought me to my knees and stopped me in my tracks. Despite everything I have done so far, I am on full disability and can only sit, stand or walk for less than half an hour (sometimes more) before the pain forces me to lie down.

I have recently been accepted for a double artificial disc replacement (ADR) by Stenum Hospital in Germany. I joined this forum to ask fellow members about their familiarity with ADR as well as their experience with the hospital and neurosurgeon in Germany. They have been very responsive and helpful in my quest for information. I am sure you will receive additional posts from far senior members than I am, but since we share a common diagnosis I would share my experience thus far.

Good Luck!

Kathleen

[Katie]

Wow Kathleen, I consider myself lucky when comparing my case to yours. I haven't had any surgery so far, except for a discogram last August. The cocktail of drugs did not work at all, and the pain was excruciating, as you describe. I can't imagine having it last as long as yours. You are certainly stoic, to say the least. I love your positive outlook and could learn from you.

I wish I could add more, but there are a number of Stenum patients here who have already gone through the system, and I'm sure a number of them will step up and give their stories. Do you have any idea of the date you will be going over, or are you still in the planning stages? I think there is someone else on here who is going soon. I'll have to check recent posts. All the best to you. You certainly deserve it.

[tvdvmv]

Kathleen,
Ditto to what Katie said, I feel like I'm walking in the park without a care in the world!! I'm sorry to hear of your painful life and I certainly hope that Stenum is your saving grace. I'm somewhat surprised that they are willing to do the ADR with the facet issues. It was my understanding that was a contraindication. Will they be replacing 3/4 and 4/5? thank you for writing me as this not only great information but inspires me and gives me hope. I'm in the process of getting cd's of my MRI's and am going to submit to a couple of docs, I'm very curious what they would say vs what the surgeon here told me last Friday. He wants to fuse l3/4 & 3/4, says in no way would i be a candidate for ADR even if I paid out of pocket. He said nothing about my sever DDD at l5-s1 which I feel would probably be addressed by the out of country docs. Keep me posted on your journey, my thoughts and prayers are with you.
Terry

[WPKat]

Terry,

Before I received the news from Stenum, I read that facet joint degeneration was contraindicated for ADR as well and thought it would be deal breaker too. I decided that the worse that could happen is that they would say they couldn't help me, which is what I was used to hearing anyway. As I understand how Malte from Stenum explained it, the artifical disc would provide proper spacing and would reduce the pressure currently on my facet joints. Also, since the facet joint procedures I had last summer were unsuccessful, it's pretty clear to me that it's not the source of my pain. I am going to re-clarify my understanding with them as well as ask if ADR will take care of the severe foraminal stenosis. And yes, you are correct, L3/L4 and L4/L5 would be replaced with ADR.

Have you researched fusion? Both of the neurosurgeons I saw don't recommend it because of the stress it causes on the rest of the spine. However, I know people who have had it done and they are just fine - including one of my uncles. One surgeon said I was not a candidate for ADR because more than one disc needed to be replaced, which was not FDA approved and my insurance wouldn't pay for it anyway. Nothing was mentioned about the possibility of going out of the country. I found Stenum Hospital via a simple google search of "multiple artificial disc replacement." I wouldn't dismiss this alternative for you without checking into it first. The worst that could happen, Terry, is that they would say they couldn't help you. No harm, no foul.

There is so much to learn and understand it can be confusing. That is exactly why I was excited to find and join this forum - to gain a better understanding and to make sure I was making the right decision.

Katie, I am honestly only stoic when the pain is not completely "off the charts," at which point you'll find me curled up on my bed or on the floor with tears and all. Thankfully, it's not "off the charts" every day or all day. You can bet I avoid any activity I know pisses off my back (although sometimes it sparks off for no good reason, but for the most part, I am getting wise to what sets it off). You should see the look on my face when I see a chair - it's really rather comical. I'd rather do anything then sit in a chair.

One thing I wanted to mention is that I have a home TENS unit. When the pain is bad and the medication hasn't had time to work or is not doing a good job - I found that the TENS unit does help to take the edge off. I make a concerted effort to minimize the pain medication I take because of certain side effects and the desire not to become an addict. As a result, though, I play "catch up" when it really gets rough. However, I feel that my body will get used to a certain level of pain medication and then it will take more of it to relieve the pain when it goes "off the charts." I'd rather "suck up" some of the pain, then have to take more of it over time. Despite my stubborn attitude about it, I have yet to make it through the day without any pain medication.

If I have any positive attitude at all, Katie, it's because I have a really good counselor. When I recognized that I was becomming depressed about my condition, I sought out a good counselor that I see once a week. If for no other reason, I feel it's smart to have someone to talk to that is unbiased and can provide ideas on how to cope with pain. I am very fortunate to have found her.

I know you've been through more than what I consider your fair share too, Katie, and I believe each of us has had a rough go of it at one time or another. In a sad way, it's comforting for me to know that I am not alone. When I read your stories, I am honestly touched by your honesty and by your journey through it. The success stories of those who have found a way out of it is extraordinarily inspiring to me.

Kathleen

[Katie]

Kathleen, I have a lot to chat about, but I have a couple of questions right now before my hubby 'fixes' my computer. How do you like Alaska, and how long have you lived there? I used to live in the Yukon and absolutely loved it. I passed through Anchorage once and was amazed at how lush it was compared to Whitehorse. Both had their own beauty. I'm envious that you are there, at least for awhile.

[Justin]

Hi Terry,

Sorry I've been out of town--I've been really sick since last week. A big thumbs up :thumpup: to Kathleen and Katie for sharing your experiences! I'll chime back in this thread shortly.

BTW: Kathleen, I'd like to explore degenerated facets and artificial disc replacement with you in another thread at some point.

I hope everyone is having a great night!

[WPKat]

Terry,

Yesterday, I consulted with the neurosurgeon who had performed my back surgery last March. Much to my surprise, I learned that he does single ADR as well as "off-label" multiple ADR, however, he has done less than a total of 100 such operations.



His comments:

• facet joint degeneration is contraindicated for ADR, but the fact that the procedures I had done last July to address that were ineffective could very well mean that it's not the source of my pain.
• technology to address facet degeneration has not evolved enough for him to recommend trying it.
• advised that I have a discogram done to confirm that my discs are the source of my pain.
• the Europeans have a different approach [to ADR] (maybe because they have more experience with it?). I didn't catch his exact phrasing so I am unclear what he meant by it.

Because I received approval for multiple ADR from Stenum Hospital, he offered to put my case before a panel for a second opinion. I felt that was very nice of him to do.

My favorite comment he made was, "if you went to 7 different surgeons, you would get 7 different opinions"

I am not in any big hurry to run off and have another surgery done without doing my homework first, so I will have the discogram done - oh joy, more needles in my back

BTW: Justin - did you start the new thread about degenerated facets and artificial disc replacement and I missed it? I would like to hear your thoughts on it.

K

[ajj1001]

My favorite comment he made was, "if you went to 7 different surgeons, you would get 7 different opinions"

I am not in any big hurry to run off and have another surgery done without doing my homework first, so I will have the discogram done - oh joy, more needles in my back

Maybe if you got to 20+ two might agree on what to do! Doesn't make things easy but you'll know when you are happy with what is offered by one of them.

I'm on the waiting list for a discogram and even a needle in my back sets it off being very grumpy. Life just isn't pleasant at times

[Katie]

Good morning Kathleen.

I'm very happy to hear that your visit to the physician was a good one. So few of mine have been, except with those from out-of-country. The comment yours made about European doctors is one I've heard many times. In my case, their exact words were "they are very aggressive in their treatment with ADR or any other new technology". It was not meant in a good way, but more to mean that the Europeans are 'slap-happy' or much to quick to operate.

Since the Europeans have been using ADR for about fifteen years, I think the Canadian doctors (in my case) are the ones who are out of step.

Did you ask your doctor why he didn't mention the fact that he did ADR to you last year? When you said he was going to put your case before a panel, does that mean that he may consider doing it himself, and if so, would you let him, considering his level of experience with multi-level?

Thanks for sharing.