New, wondering, learning, my story

[ERvet]

Well, I just found you folks a few days ago, perusing spine-health.com and looking for information. My little signature tells an abbreviated version, but here's a bit more background. First a quick summary: a recent discogram, capping off about 3 yrs of procedures, one surgery and lots of frustration.....showed the problem to be a very unhappy L5-S1 disc causing discogenic pain. A second opinion surgeon (was none too happy with the doc who did the initial surgery) is recommending lumbar disc arthroplasty. I'm here to learn more, especially the reasons that people/medical professionals give for NOT recommending it. I'm an emergency veterinarian in a specialty practice (though not a boarded specialist myself) so I am exposed to a lot of high quality medicine and feel comfortable reading human medical literature. I've read many of the articles cited here, and found one that was very negative about the procedure. I need to hear both sides in order to make an informed decision. Most of all, I need to get rid of this pain in my arse!!!

My problem started rather insidiously about 4 1/2 yrs ago,no injury occurred, and the pain was very reminiscent of a previous hamstring injury. It would come and go, and I would continue to think it was just a chronic muscle injury and ignore it. The time it nearly leveled me after an airplane flight and kept me awake for 3 nights running, I decided I should have someone look at it. My chiropractor seemed to think it was hamstring injury as well, as all the provocative tests for a disc problem were negative. So, we worked on it. For a few months. No real lasting improvement. Sent me to a PT who is very talented, did a LOT of muscle activation techniques, as he found many of the gluteal muscle group in my right leg were weak/inhibited, etc. Got very transient improvement, never lasted. Sent me back to my ortho, who suspected sciatic nerve problems. Had the first of what would be 4 MRIs over the next 2 yrs. Sent me to a neurosurgeon (MRI showed no herniation, very mild protrusion at 2 sites, no compression, really not a very exciting MRI). Neurosurgeon (who spent at least 20 seconds examining me.....) wanted to cut, of course. Wasn't prepared to do so at the time, had the first of 2 ESI, which miraculously relieved the problem......for about a week. Tried some more PT, now that we had a possible diagnosis. Was going to pursue surgery in the fall, when my hospital's busy season was over (I was a workaholic at the time, short staffed, couldn't take time off, yada yada yada). July of 2006, had an episode of acute, HIDEOUS pain, thought I'd actually torn a hamstring muscle (due to the location of the pain), hobbled my way back to my ortho, who said, nope. Just the sciatica sounding off. Pursued acupuncture, massage, chiropractic, more PT, ANYthing to make it better so I could go on my annual canoe sojourn to MN. Finally had another ESI just so I could go on the trip and not utter colorful metaphors too loudly in the woods. Had surgery that November of 2006. Hemilaminotomy at L4-5 and L5-S1. Recovered well from the surgery, back at work 10 days later, but still no relief. And here are the words of the surgeon...."yeah, that happens sometimes." Thanks, dude.
Pursued more pain management strategies with my pain management doc, who has been marvelous and one of the only docs to actually, well, LISTEN to me, and (holy crap) EXAMINE me. What a guy. At any rate, we ultimately tried SI joint injections 'cause the pain seemed to localize there. They helped 100%.....but only for about 48 hours. Tried prolotherapy at the SI joint. NADA. Finally had RF rhizotomy in Dec of 2007. Took away enough of the pain to allow me to begin running again (I cycle in the summer, run in the winter)...for about 6-8 weeks, but then I felt the pain begin to return. Pain doc tried a couple other diagnostic injections suggested by surgeon #1 and then surgeon #2, since up to now, nobody could really identify the actual pain generator. I told myself I would not return to surgeon #1....and sought out a second opinion (someone who might actually listen to me, like the pain doc!). My PT suggested Douglas Beard in Thornton (whom I have seen mentioned here). He ordered a new MRI, with and without contrast, and included my SI joints at my request. Very similar findings to the first 3. Nothing spectacular to indicate a reason for surgery. No compression, etc. 2 degenerated discs, but what 48yr old doesn't have that? Went to the discogram, and VOILA. L5-S1 lit me up like a Christmas tree!! (
(As an aside, there are also 2 large Tarlov cysts noted on all the MRI studies....read a lot about them for a while, but finally dismissed them as the cause. The larger one is actually on the asymptomatic side.)

Sorry, long story ended up getting longer. Anyway, we have been talking about total disc arthroplasty, I started reading up on it, started talking to my fellow DVMs at work, one of which has a family member who is a spinal surgeon and has a very POOR opinion of disc replacement. I don't want to consider a fusion (surgeon #1's idea, without even considering WHAT the problem actually was, he just wanted to cut again) given the adjacent disc is none too happy (but keeping things to itself for now). But I want to be sure (as sure as I can be...I realize nothing is guaranteed) that I am fully informed, that it is indeed an appropriate thing to do, and there is not a reason NOT to pursue it. I have an insurance company that may give some trouble (Anthem Blue Cross) and surgeon#2 is not so sure about them, having never gotten a yes out of them. But I'm up for fight.
SO, anyone still awake after reading this.....any thoughts? comments? send me any reference articles?
I thank you all for your consideration!

Susan/ER Vet

[Harrison]

Susan,

Yes, I am very much awake after reading your post!

Pls search for "tarlov cyst" across this board; you may want to speak with some other folks that have been dealing with these. I can share other research I am doing in this area; but let's catch up in the coming week. My comments on these topics hint at some of the research.

There are many nice, helpful & smart people in this community. I hope we can help you! I encourage you and the other new members to politely email and PM people that may be able to help you.

Talk to you soon.

[ERvet]

Reply

Harrison: Thanks for not falling asleep! Regarding the Tarlov cysts.....I researched them myself pretty extensively, and chatted with my pain doc and surgeon #2 (surgeon #1, and I quote:"anyone operating on those is NUTS") about them. It was actually the pain doc that brought them to my attention and said "hmm, maybe they are the problem?" Surgeon #2 didn't dismiss them, but after studying them on the MRIs at my request, we both noticed that the larger of the two is actually on my asymptomatic side. Their location doesn't match the pain distribution. I was on the Tarlov Cyst forum for quite some time, but I truly don't believe they are the problem. I guess my biggest concern is WHY aren't more people on board with this? The docs who are so aghast at the mention of disc replacement, why do they feel that way? This is what I hope to learn, as well as outcomes, return to work, return to play, return to my beloved Boundary Waters Canoe Area! I'm glad I have found a surgeon that I can have some confidence in....we had a slightly rocky first meeting, but I immediately sent a gently chiding letter to him,and the subsequent visits have been very informative and less egotistical! Then there is the insurance hassle which is likely forthcoming, but I'm up for a fight. Nothing like 4+ years of annoying pain to make one a bit persistent.

Ciao
Susan/ERvet

[Terry]

Ah Yes; The Lovely Boundary Waters Canoe Trip in God's Country of Minnesota. You're lucky we let people from Colorado go there as long as they pack out all of their trash and leave the place pristine. Also that they leave the Loons in peace and harmony to make their mournful cry that is so distinctive.

Yes, you can probably tell I am a former Minnesotian. We are now living in Michigan for the last eighteen years. Every year at Christmas time we go home to be near the family.

I had a hemi-laminectomy in Minnesota in 1995 at the Mayo Clinic in Rochester, Minnesota. I had 4-level ADR surgery in Germany on November 4th, 2006. It sounds like you have a battle ahead of you but that you are assertive and intelligent and hopefully they met their match in you.

I wish you nothing but success in your journey and I hope we can help you a long the way.

(By the way, you live in God's second choice for a peaceful location. Colorado is beautiful also. What Part?)

Terry Newton

[kimmers]

Susan,

You are finding out what a lot of people have learned on here: You may get all sorts of opinions from doctors, but not one is the same.

I think some doctors are just ignorant of the ADR technology. I went to one doctor that thought the chance of an ADR slipping out of place and lacerating my aorta and therefore causing my death was very likely.
That information would scare anyone away.

Also, I think ADR surgery is highly technical and takes a high surgical skill level and not all doctors are able to perform it.

Doctors, like anyone, have a comfort zone and don't like to get out of it. Some doctors may be "stuck in their ways".

I went to one neurosurgeon, whom i work with, and he didn't know anything about ProDisc, only Charite. He said the 60-some percent success rate of the Charite was too low. Speaking to another physician, doctors are comfortable with surgeries in the 80 percent range.

Luckily, I didn't listen to the naysayers and went ahead and had what my doctor recommended, which was ADR.

Now, insurance coverage with Anthem Blue Cross is something else. My take on them is they don't want to cover it because they have not approved it. Good luck.

Kimmers

[ERvet]

Terry: I assure you we always leave the BWCA cleaner than when we found it, we don't harass the loons, we don't even harass the fish! People look funny at us when they see no fishing apparatus....only 30lb of camera gear. Which I always carry since I'm the one who insists on bringing it! We live in northern CO, about 60 miles north of Denver in Loveland. Yep, it's a fabulous place. Not that we're actually from here.....

Kimmers: Thanks for the viewpoint of a nurse....I've actually only heard directly from 2 docs, both surgeons, one of which performed the hemilaminotomy and who I am NOT going back to. All he wanted to talk about was fusion when, for the second or third time, I told him that the pain was the same. All without benefit of more than 15 seconds worth of exam, BEFORE surgery. If I tried to do that in my practice on dogs and cats, I'd not only get nowhere, but I'd be crucified by owners and fellow veterinarians! The second doc is the one who brought up disc arthroplasty and even stated, when I asked him, that he would elect the same procedure if it was his back. I'm just looking to see if there are any good reasons NOT to go ahead with it. "Due diligence" as the saying goes, though I suppose it is used more frequently in business and finance. I have found some good info, just haven't had a chance to really read it all yet! I especially hope to find journal articles.....if you know of any, giving BOTH sides of the issue, I'd appreciate it.

Susan/ERvet

[ERvet]

Terry: you appear to share the same/similar level of activity that I try to involve myself in.....how long were you "off the bike" after your surgery? How long before you were actively exercising again? I am doing my best to remain in good shape prior to any procedure, not that it's going to happen anytime really soon. But I'm trying to get an idea of how long I will have to off work, off the bike, off of running, etc.
Work is not exactly a sedentery job. I am an ER veterinarian, and while I usually have 2 techinicians for assistance, I am on my feet for hours at a time, and I try not to do stupid things.....like lifting big dogs. And I would imagine that would be BIG no-no for a period of time post-op. I don't know what you do for a living, and so don't know how much your situation would apply to me, other than your recreational pursuits. Can you give me any ideas? I'm also currently considering biacuplasty, discussed with me yesterday at the time of an ESI to try and tone things down a bit. I read a bit about it, but mostly have a lot more questions.

Thanks, eh?
Susan/ERvet

[Terry]

Susan:

I am the Executive Director of a Substance Disorder treatment program (www.harborhall.com). I have residential treatment, two outpatient clinics, medical professionals recovery program, sobriety and drug courts, sober living facilities, detoxification center, prevention services, etc. I had my surgery November 4th, 2006 and was back to work full-time January 4th 2007 so two months with 4 level ADR. I went back to driving as soon as I got home from Germany on November 18th. I went home to Minneapolis for a 10 hour drive in December a little over 1 month after surgery and drove all over Minneapolis and then drove back home after being gone for two weeks on Christmas Holiday. I started bicycling in April and rode over 2,000 miles while healing from the surgery and have not looked back. I was in good shape prior to the surgery and had rode over 1,800 miles right before the surgery. So you sound similar and probably will find that you are capable of a lot. If you want to discuss this further I will give you my phone number.

Terry Newton

[ERvet]

Terry: would love to chat sometime about what to expect, blah blah blah. Not that I can expect anything for a while....still in limbo, orbiting, waiting for my ship to come in, and many other cliches. Sure, send me your contact info, via PM or direct e-mail. I don't quite know how the PM thing works yet....

Susan/ERvet

[Harrison]

Susan:

Go > Personal Zone > Private messaging.

Then add Terry's name to your private message list, start a new topic...

When you receive a new message, a tab will appear saying "New PM."