New guy, Advice needed
 

After the longwinded background information, a viable question will follow.

I underwent a laminotomy/ discectomy for L5/ S1 in late June of 2006. After several months of pain on/ pain off, another MRI pointed to a recurrent disc. I underwent that surgery in 04/ 2007.

I've had two MRIs and one Myleogram (nobody warned me about the myleogram) since then. All agree that I have DDD in three more discs, the surgeries on L5/ S1 ultimately were successful. It has no signs of fragmentation or excessive scar tissue.

All tests indicate:

L2/ L3 Disc desiccation, disc space narrowing with posterior annular tear with minimal disc bulge but no significant central canal or neural foraminal narrowing.

L3/ L4 broadbase bulge and mild facet joint arthropathy with mild narrowing of central canal and bilateral mild to moderate foraminal narrowing, left greater than right.

L4/ L5 has an annular tear and broadbased disc bulge with moderate narrowing of the central canal. There is facet joint arthropathy with moderate bilateral neural foraminal stenosis.

L5/ S1 is dessicated It has a mild bulge with minimal narrowing of the central canal. The neural foramina are patent.

Two orthopedic and one neurosurgeon just look at me and tell me none of these issues are problematic (individually) but my PCP thinks that together the dynamics of normal motion create the variable levels and areas of pain I experience. All but the neurosurgeon has offered to fuse L5/ S1. He wanted me on pain meds and physical therapy.

Here's the question (finally):

Is this the way your individual journeys started or am I just going to the wrong doctors? Although a new member, I've been reading your stories for several months and value your input.

Thanks,

Bob

Welcome!
 

Bob, thanks for finding us and posting. To answer your questions..."yes" and "yes!" I think most of us have been there, so that's why we try to help each other out...there are so many challenges. Sorry, there's more ahead. :rolleyes:

I'll chime back in later, or you can call me this weekend. We are here to help!

Yea Me To
 

I have alot of the same issues that you do Except My L5- S1 DDD Laminoctomny 15 years ago. Now things are bad, looking into ADR Sent all my info to Stenum for ADR surgery, still no answer and it seems to be the wrong place to have surgery at many levels .:bawling:I am also new to this site and it scares the hell out of me. what do we do? who do we see? who will pay?
How will i live my life?One Day at a Time??

Mango,

Yes to one day at a time. I wish this was the worst I've ever been through but it's not. It's just the current bump in the road. We'll all reach down and gather the strength we need to get through these problems. It looks like we have a great support network to help out with answers and advice, so let's draw on the positives and heed the warnings. Good luck, you're not alone!

Bob

Thanks Bob
 

Yea your right

I go to the club every day and walk three miles on a tread mill. Ride bikes, lift weight with legs only stretch alot, do some pilates ,some p.t. and now Rolfing.

Thanks Gil::wiggle:

Hi Bob and welcome to the forum. I had four level ADR at Stenum Hospital in Germany in November 2006. There are many different stories, outcomes, suggestions for research, support, and all around good people that will help you in finding your own way.

Hang in there. It sounds like you have gone through many tests with some answers to why you are in such discomfort. Now comes the hard part with the myriad of places to scope for solutions to your issues.

Again, welcome and, I hope you get what you need here.

Terry Newton

Thanks Terry. I'm keeping a positive attitude about it all. Yesterday's visit with the 3rd orthopedic surgeon was kind of fun. He told me due to the mild arthropathy in the facet joints at L3 thru L5 that the ADR wouldn't work for me. He was ready to send me for an EMG (frequently used at Gitmo) until I had him look in my inch thick file for the results from earlier this year. That's when he said fusion was the way to go.

My copay is $25 for specialists so I look at it as being cheaper than most other forms of entertainment. Is it wrong to play with these guys?

Tomorrow the pain management specialist is giving me the "shotgun" approach epidural. That should carry me through the holidays and if it works, I'll repeat the procedure until I can afford to pursue other avenues. I received the Stenum DVD last week. It looks promising.

Thanks again,

Bob

Richard,

Thank you. I'm not used to sharing so it hopefully my longwingded posts will shorten up somewhat.

Bob

back pain = poor computer skills?

Your PC Skills Are Fine
 

And people do read the "long" posts. It's cathartic for all...so busy those digits of yours!

:wiggle:

Be wary of getting ADR with facet issues
 

Bob,

Many on this site criticize Stenum (and with reason), though people like Terry and I had our ADR surgery done successfully there. One thing I will mention is that they do not look at the condition of your facet joints, and do not seem to care. Their solution to all patients with DDD is ADR surgery, they never discussed my facets (or with any of the other patients in my group). I have seen people on this board that got ADR surgery with facet arthropathy and greatly lived to regret it, as their post surgery pain was so bad they were forced to have the implant removed. If you stateside doctor has recommended not having ADR because of the condition of your facets, don't expect Stenum to let that stop them.

In my humble opinion, you need further consultations. Dr. Zeegers and Dr. Bertagnoli in Germany seem to be more thorough than Stenum and will look at your facets, though unlike many on this board I don't know that their skills at implanting artificial discs are any better than the surgeon I had at Stenum (who has done over 1,300 ADR surgeries). You can also talk to some ADR surgeons stateside, not with the plan of using them (as the cost will be much higher than Germany and their experience may be less) but to have them take a closer look at your facet joints and see if that will exclude you from ADR. I have never heard of Stenum turning anyone down due to facet joint issues. I feel that Terry and I dodged a bullet on that one, but you have the chance to be proactive here and avoid that by getting multiple opinions.

Stenum or more
 

hi bob their are other dr in Germany look At all your options, I also Sent all my info to Stenum an wating for a reply? I cant wait to hear what they recommend compared to Dr B and Dr Z Keep me posted Gil

"... I feel that Terry and I dodged a bullet on that one, but you have the chance to be proactive here and avoid that by getting multiple opinions..."

Charles, well said. Your seasoned perspective and choice of words says things that I can not -- though I've tried. Glad to see you post again, I hope you are doing well.

Chalres & Mango,

Thanks for the input. Actually I've been looking into a course of action on the facet arthropathy. I'm having a series of epidural injections today treating every possible pain generator point, facet joints included.

We decided to use this process of elimination to pinpoint the problematic area(s). Both my pain management and family doctors have suggested this and are urging me to reject the offers of fusion so I have a higher degree of trust in them. They both seem to want a real solution.

When I asked for the Stenum DVD, I was just investigating a possibilty. I'm still gathering information for possibilities. Besides, it was free and I needed to expand my horizons beyond Beverly Hillbillies reruns (Irene Ryan was HOT!!!).

Being mechanically inclined, the disc they implant has a better placed axis or center of rotation. Since the axis is more to the posterior side, theoretically it would put less pressure on the facet joints and give more of a balanced center of rotation. At least that's my opinion for now. I'll adjust that when more info comes my way.

So keep the info flowing! I appreciate the input!

Bob

Epidural this morning. Percocet tonight. The pain management doctor is okay with our continued therapies of every 3 or 4 months.

As long as it relieves or lessens the pain and nothing deteriorates more rapidly I guess I can hold out until I find a doctor that is willing to address all the issues individually.

Richard,

I may give you a call tomorrow. The epidural this morning was uneventful and based on past injections, I won't feel a pain reduction for a few days.

I seem to be stuck in an area of the country where all the doctors want to take the easiest route for them and short term relief for me.

Thanks for putting this forum together,

Bob

Hi Charles,

Just to add a clarifier about Stenum. They do fusions as well, when they think they are necessary. I have met three women who live within an hour of me who had very successful surgeries there this year, and one of them had a fusion as well as ADR.

While they have had their problems, from what I have read on this forum, they have given other six people, who are not on here, but whom I have spoken to, a new lease on life. Thankfully one was able to get her story in the newspaper, where I saw it, and it started me on my journey to ADR land ;-) I still do not know where I will end up. but I will be eternally grateful for what they have done for a few people who have now become friends.

I am still investigating all my options, and may well have found another doctor on the west coast, if I lose my battle with the evil insurance .....

trkdoc, I hope you and your wife can keep each other going. At least you both understand what the other is going through. And please don't shorten your posts!

Epidural is a blast Of fun !
 

Hi Bob
I know you had a challenging day and like to know how things are working .
I Had MRI on my neck to see if the disc there are good or in question. One Day At A Time. ODAAT, See you soon Gil

The epidural was uneventful but tonight I'm sore. I'm taking 30mg Percocet daily now but usually drop off to 7.5 to 15 after injections. The soreness lasts a few days but keeps me mobile for several weeks.

How did your MRI go? I actually enjoy those as I nap through the process (I have a 2 year old so it's quieter in the "tube".)

I just finished sending my background to DRs B & Z. Once I get copies of my MRIs, X-Rays, CT Scan and EMG, I'll forward them on too.

Good luck on the results of the MRI.

Bob

The nap Was super Loud
 

Hey bob

The Nap, was to loud for a nap, Lumber area is much better for a nap. I could not even hear the music Quiet Jazz.

ODAAT Talk Soon Gil:sleeping:

Maddie,

My wife just started having symptoms in the past year. Unfortunately she now understands the type of pain I've been in and the frustration of the mis-diagnosis that our providers are giving us.

We both share in taking care of the two year old splitting duties according to our abilities. That's where luck smiles on me as I can't bend over to change the dirty diapers......

I hope you get the answers you're hoping for from your carrier.

Bob

Charles,

I looked through my file last night since sleep wasn't going to happen. My original surgeon told me that, in his opinion, the arthropathy in both levels were the result of the loss in disc height and the pressure that causes on the facets below the DDD level.

I've sent basic information to DRs B and Z. Once I get my pictures copied, I'll send those as well. That's my project for next week.

On a technical side note; I used to work at my company's engineering center (we build trucks) and they're using computer aided design techniques to build trucks anticipating various load and service requirements. I wonder why someone hasn't developed a program to "record" a patient's movement via X-Rays, MRIs and CTs and enter them into a computer to show a surgeon exactly what's happening from a dynamics standpoint (which is where all of my surgeons have a foresight issue).

We took trucks on a 10-15,000 mile trip, recorded every bump, twist or vibration, fed the data into a computer and watched the impact on the real chassis on a test rack as well as on a "big screen". This has enabled trucks to be designed for longevity well beyond 1,000,000 miles.

Stepping off the soapbox now. I hope you continue to do well. Thanks for "listening".

Bob

Good Idea on the Smart Disc...
 

Bob, an artificial disc was developed several years ago that incorporates a tranducer that measures all the dynamic loads. I can't recall how it transmits all the data to the the computer -- maybe RF? Any way, I found it odd that this was the attribute being "marketed," rather than the durability or design of the artificial disc. I think the article is in the Article Library...

Found it, the Theken disc...

Smart disc
 

Richard,

I remember reading about that disc during one of the recuperation periods after the discectomies. I can see a value of being able to track the physical motions of the patient to pinpoint problem areas after implantation but it seems a little late at that stage. I wonder how many revision surgeries that device would lead to?

The program I was refering to was a CAD simulator putting thousands of miles on a truck in an afternoon, measuring stress levels and the effects on the section modulus/ RBM of various structures. I was only musing about the possibilty of a similar program to diagnose a spinal structure's actual motion to properly treat the effected area of the spine. I would think that could take the "guesswork" out of, as in my case, an arthritic facet joint was going to be inpacted by and ADR or if it could've been the cause of the disc failure(s).

My opinionof the medical community is they don't have time to properly use all of the information available since the FDA and insurance companies are severely limiting proceedures and treatments. I'd imagine trying to wind their way through the FDA red tape and dodging the insurance companies investigators is a taxing workload in itself. No wonder they rush us through with fusions and diagnosis "light". I've read all these stories about the battles the Forum's patients go through with insurance coverages and just getting permission to get the right tests and that's only the start of the battle. It's no wonder these doctors take the easy way out. There's not enough manhours to do battle with all the red tape agencies needed to do the job right.

(I'm going to need a ladder to get off this soap box, aren't I?).

Sorry for the rant,

Bob

Bob,
I agree, doctor's have so much other stuff going on, malpractice, insurance and the FDA. Not to mention, they get less money per visit (once you take out the ever rising malpractice insurance premiums, nurses, office staff, rent, etc). It is really, sadly enough, not worth their time to find out what is wrong with you. It is easier to send you for a test, do a shot, write a script, or in my case, refer you out. Very frustrating.
Sounds like you and your wife have similar problems as my husband and I (although his is not hurting currently). When our now almost 3 year old was born, he was in a lot of pain and in the "hunt" for what was wrong with him. When she was 2 weeks old, I was in my accident and joined him in my own search. He had an MRI and then an injection and was good for 6 months. His second injection has 'worked' since then (he still has episodes; but not chronic pain). Not a lot of fun, having pain and little kids that need lots of lifting, bending, and so on.
Best of Luck,
Kathy

It can be
 

We work together pretty well. She's at the beginning of her issues and has been able to draw off of my experiences. I'm gathering insurance info now and she has coverage through her employer and has mine as secondary. She also works at home so that's a load of stress we don't have.

As soon as we teach Sean to change his own diapers, we'll be set........

I hope your back heals itself, but if not, I hope you find relief. I'm glad your husband's pain subsided. Let's hope it stays that way.

Bob