New to the DDD game

[banhorn]

Hey guys,

I've been reading these forums for a while and thought I might try to solicit feedback.

A little about me and my diagnosis:

I’m a 33 year old father, husband and overlord to our cocker spaniel. I’m an avid practitioner of Ashtanga Yoga, play a great deal of ice hockey as a goaltender and really enjoy the outdoors with my young family. I’m 6′ tall, 165 pounds and in the best shape of my life. My diagnosis of Disc Degeneration at L4-5 with stenosis, really caught me out of left field. I’ve been unable to do any of the activities I love for 6 months and I’m worried about the problem degenerating further as I've learned that discs can't repair themselves.

Like everyone else here, I turned to the internet and have been reading feverishly for any help or information about the condition and have found a few resources that really help (this being one of them).

I'm in Canada and still waiting for an apointment with my local spine specialists, but I'm worried they might end up being as unhelpful as my GP and physiotherapist have been (suck it up and change your life). I've read so many forums and blogs espousing both the benefits and documenting some horrific outcomes of spinal surgeries and ADR. Talk about confusing and overwhelming.

My diagnosis:

L4-5: There is mild disc space narrowing, desiccation and a combination of fatty and edematous endplate signal changes. No paraspinal soft tissue swelling. There may be very minimal enhancement of the disc and adjacent vertebral bodies but this is quite subtle. There is a mild disc bulge identified, eccentric to the left along with a central annular fissure. Mild to moderate degenerative facet joint changes are seen bilaterally with mild thickening of the ligamentum flavum resulting in mild acquired central spinal stenosis and left lateral recess stenosis. There is moderate left and severe right foraminal stenosis predominantly related to encroaching facet degenerative change.

L3-4 show some mild facet degeneration, but nothing else really going on.

I've had one consulation with Mr. Nick Boeree in the UK that went very well regarding ADR, but I'm still waffling on surgery. My L4-5 has been problematic(bulges/sciatica) for about 10 years, but only recently began to degenerate and throw the rest of my lower back and activity levels into disaray.

I'm not sure what to do or where I'm even going with this post. I'm just looking for some next steps.

[newhere]

"My L4-5 has been problematic for about 10 years"....same here. im 25 now. disc degeneration with annular tear dalas grade 3. before some agresive treatment(fusion or ADR) i will go to SED. (selective endoscopic discectomy with annuloplasty)...it seems this is minimal procedure for treating DDD...can you describe me please your simptoms???

[longroadahead]

Are you in lots of pain? I am not a doctor but the findings didn't sound that bad.

[banhorn]

You're too young for this kind of problem!

-Pain in my back when bending forward/backward and twisting
-Can't sit for more than 45 minutes and it aches in bed
-Tingles come and go in my big toes on both feet
-Tingles down my left glute/hamstring now and then
-Pain sometimes on the front of my left shin

The radicular pain and tingles are certainly not constant and don't come close to the back pain.

I don't know if it's related, but every once in a while my sacroilliac joint gets tight and I have to do some exercises to re-balance it as well as pain/tightness in my left hip/groin. I'm guessing it's all related to the screwed up angles and angry muscles in my lumbar. These issues began with the back pain.

I'm only making guesses at this point as I wait to see a local specialist. I'm taking NSAIDs and can make do right now, but I don't know if I should be trying something more aggressive to become active again.

[dshobbies]

Hi banhorn and welcome,

Obviously we're all sorry you need to be here but glad you found us. Also too bad it's taken you a long time to see a specialist.

A problem with ADRs is they are very hard on facets which is why, with mild to moderate degeneration already, you may not be a candidate for an ADR. Other, less invasive surgeries may solve your problem or the more drastic fusion may be indicated. At 33, the problem with fusion is it may very well cause degeneration of adjacent discs. This is a problem regardless of age but with more time, more side effects.

I'm wondering, Mark, please comment here -are some of the newer ADRs safer and not contra-indicated with facet degeneration? Anyone else know about this?

Regardless banhorn, keep asking questions and find out as much as you possibly can before making any final decision. You have one chance to get this right. Your choice of doctors is a primary decision as well as whatever procedure you ultimately decide upon. Choose carefully!

Dale

[cherylstewart67]

Radiologist can give all the findings they want. One may give a completely different finding than another. One would think that they would go by the systems. It can become confusing...

[jsewell]

As far as i am concerned if you gave the mri or xray to 3 different people you will get 3 different answers. At least possibly.
I have had my thoracic discs not sound that bad and still cause unbelievable amounts of pain. So not a good comparison. You know how much this effects your life and you are way to young to be stopping activity.

I am a very active individual and spent years mountain trail running, then hiking after a hip replacement 2 years ago. Doc said no more running but anything else is ok. Now my spine just kind of fell apart in the last year and a half, although i had pain for a number of year. As an example of not being afraid. I in sept had T2 thru L2 fused and other things done to free up; the nerves and breaking the bone to reconstruct the spine in a few places. Following that my neck went into a rare position where my head was on my chest and i could not really raise it up. so back to a bigger surgery and fusion and other nerve freeing surgery from C4 thru T5 (some revision as the rods were coming out of my spine)
All is well now, except my lumbar spine.

But amazingly i can still move (haven't got the neck /back braces off yet)
But i am 53. Big difference.
I would try any minimally invasive surgery at your age, you can always convert to a fusion if need be (although i have no info on ADR)

Sorry it was so long but it struck my heart to hear you have given up things , you need to get back to them. My spinal surgeon always tells me he wants me to get back to what i want to do ,not to be able to just be a couch potato and comfortable.

judy

[banhorn]

Well, it's been about 8 months since my initial fall and injury to my disc(though it seems to have been a long time coming)

Thanks for the responses, guys.

I've been trying a number of things without much result. Chiro has helped a little through traction/flexion/extension to take away a little of the numbness in my toes and left hamstring. That's a plus! My pain levels are pretty much the same as October 2010, though the pain in my shins and ankles seems to be getting worse.

Physio, accupuncture and swimming have yielded little in terms of results and I'm core strengthening every night.

I'm still walking every day and resting on the couch in the evenings... sitting in front of a computer all day isn't helping much, I bet! I take breaks every hour.

I've gone through the gammit of consultations with my local and foreign doctors/surgeons and here is the breakdown.

My only affected level (for now) is L4-5.

For Surgery:
1) Boeree – M6 & Decompression (UK)
2) Clavel – M6 & Decompression (SPAIN)
3) Ritter Lang – M6 & Decompression (GERMANY)
4) Flood – Mulitple Laminectomies and stem cell disc injections (US)
5) Pimenta – Fusion via XLIF or ADR via lateral XL-TDR (BRAZIL)
6) Specialist Referral Centre/Cambie – Microdiscectomy for my leg pain only. They cannot help with the back pain nor do they offer artificial discs (CANADA)
7) Dr. Zigler at the Texas Back Institute. Prodisc and decompression at L4-5. (US)

Interestingly, they all agree I have no contraindications.

Against Surgery:
1) Caleo – Core work (CANADA) - My facets are too hypertophied, pedicles too short and spinal canal too narrow as a result for ADR.
2) Physio – Core work & swimming (CANADA)
3) Chiro – Flexion/Extension as allowed. Offered discogram, steroid injections and thinks I should get some second opinions outside of Caleo. (CANADA)
My local Ortho's in Calgary(CANADA) want me to tough out the pain for another 20 years, when they will operate to fuse the bottom 3 levels. They said any surgery now (I think they meant fusion), will result in at least 1 or 2 more over the course of my life time. Is there any truth in this? My issue with this was that my other two lumbar levels around L4-5 are ok still. Will an ADR actually help them to not degenerate?

I'm still waiting to hear back from the LA Spine Institute, as I was looking into the freedom disc trial.

I'm set on Mr. Boeree for surgery, but the price tag and potential complications are a little disuading. I have no hope of any insurance reimbursement in Canada and am a little afraid of going out of country for a procedure of this nature. I've never even had surgery before, let alone a serious one out of country! How do you guys work up the guts to pull the trigger? My window for surgey is July (pre-baby #2) or any time after October (post-baby #2). Should I go before or after? Or should I wait indefinitely?

I had also signed up for the Mesoblast phase II MPC trial, but was rejected due to my bulge being greater than 3mm. My large facets seem to have frightened them off a little too!

I also looked into the DePuy rhGDF-5 phase II trial as well, but it seems a little more risky for some reason and I've opted against it. It's also a lot of money for travel and accomodation if you get stuck as a control.

I'm scheduled for a dexa scan to ensure my bones can handle an ADR if I proceed.

I guess my biggest questions are:

1) Will my back get any better by just waiting?
2) Will my back get worse by just waiting?

Here's a link to my scans from January, for any of you armchair MDs.
My Diagnosis "Backup"

The pedicles thing kind of freaked me out, but Mr. Boeree has assured me that my facets still have 2 visible layers of articular cartilage, they are bigger, but normal, without osteophytes and short pedicles aren't an issue for ADR. Anyone else have fat facets and short pedicles? LOL

Thanks guys,

-Brett

[Maria]

Hi Brett,
You're definately not too young for these types of probs. I got injured at work at age 28 and I'd dare say that probably my spine was already predisposed to something going on. So youth doesn't really play a roll in are we too young or not.. just happens.

You didn't describe your pain pattern at all. From your MRI hard to tell if you might be experiencing discogenic pain, facet pain, or ?

I know you said you can't do all the activities you love however I wonder how truly limited you are with activities of daily living or things such as just getting up, bathing, grooming, sitting, standing,, walking and such.

Activities we love in our younger years can be considerably more active than in our middle aged years so that is why I wonder about your pain, limitations, and so forth.


I think you're wise to question physician recommendations as you are young for surgery altho I underwent my first in my late 30's.

Have you limited your activities quite a bit and gotten any kind of rehab like PT or had anything like lumbar ESIs recommended? I'd try to go conservative for a bit to see if that helps and if not then contemplate surgery. That'd be my strategy unless the MRI findings or other diagnostics are definatively necessitatiing surgical action.

Then again that's me. I had two discectomies over a period of seveal years. I was recommended to have another surgery (3rd) and more involved. I started to feel better and didn't (so far). My clinical findings surely do coinside wtih my past complaints so I can see why anyone who saw me back then would have recommended further sugery.

Have you tried any core strengthening exercises, epidural steroid injections and or just resting a bit and accepting it for now?

Will your back get better by waiting? Only you will know that. Will it get worse? Well it could.. however sometimes even a worsened clinical picture per diagnostic exams doesn't mean your pain is going to be worse. Just sort of depends.. Sometimes what does happen though is in the process of waiting our spine do continue to change and some of the degenerative changes can prevent us from being candidates for some of the more recent advancements in spinal surgery. However I'd not jump into surgery just because your films show something if your spinal pain isn't equivalent or worse in terms of spinal pain represented by the films.

Keep posting. Each person is an individual for what will work. Good luck and sorry to hear of your pain.

[jsewell]

Hi Brett,
wow you certainly did your home work. Wanted to give you an A+ for that. I know almost nothing about ADR's as i was never a candidate for one in the first place.
Surgery has helped me , but i have 20 years on you and the only way to stop my horrible thoracic pain was to lay down on the floor wherever i was or get out of there.
I've had other long fusions with laminectomy's and osteotomies but one was due to my breathing already being compromised and not wanting to have my severe kyphosis make it worse. The last had to be done as my neck broke.
So hard to tell you what to do.
I've also had lower back pain (lumbar origin) for a number of years and have used pain meds, core strength training with a physical therapist as well as ESI"s for years. So hard to say what to do. Oh my lower back pain made me stop just standing in one place and perhaps sit more than usual, but did not stop anything else i loved doing.

I don't think it will harm anything if you can wait it out. But if you are really impatient like me, you may just want to go for it. Only you can figure that one out.
I vote for waiting until after the baby is here safe and sound. And mom is recovered.
just my 2 cents
judy

[Maria]

Ok just noticed that part of your post and think that I'd not have spine surgery done before a baby coming into the picture as that might present your wife/family w/more work for her, more attention to you. Definately not what she needs or the baby. Plus newborns being what they are at least you can rest and sleep w/the baby in terms of giving your wife a break.

At least that's my 2 cents with regard to that part.

Re surgery really depends on how bad you actually feel and how limited you are and your findings. I would have liked to have had ADR abroad (needed at least 2 levels when I was thinking about it) and probably vertebroplasty but I didn't have the money for surgery abroad and would have lost all WC benefits (future medical) which at the time was paying for lumbar Epidurals for me which did help with the pain quite a bit for me.


In spine surgeries it seems that discectomies almost always lead to more future spine surgeries. I've had 2 (L4, L5 S1) and then continued to have worsened pain after 2nd discectomy and quite a number of years later was recommended first to have a 3 level lumbar fusion. Didn't do it (am very glad of this). Next I was recommended to have a 2 level ADR (didn't do it) and after that was recommended to have a hybrid surgery (ADR and fusion) didn't do it either as I started to feel better when my L5S1 autofused on it's own (after 25 years since original injury).

Waiting sometimes is the right thing to do and sometimes it's not. Hard to tell and seems that each case is individualized but one thing I'd not do if I had a choice and that's multi level discectomies and multi level fusion **unless there was no other choice/ not a candidate for any other type of surgery and had to do something re pain/dysfunction.

Good luck with all this and congratulations on upcoming baby number 2!!

[dshobbies]

Brett,

First, let me congratulate you on your upcoming 2nd baby. They are truly a gift. Like Maria, I would wait since your wife will probably be your primary care giver and before may be just too much work for her. Also would wait at least until baby sleeps through the night - just thinking about your wife.

There are so many pros and cons to surgery. Even lesser, non-invasive surgeries can lead to further degeneration down the line and more surgeries lead to even more.

Fusing L4/5 will more than likely lead to degeneration at adjacent segments which will lead to more and so on, especially at your age and activity level, which may have to be adjusted with a fusion and the limiting of movements it causes.

ADRs are designed for movement but studies, and there haven't been enough conducted, indicate they also might lead to further degeneration over a longer period of time.

If you have an ADR and your facets worsen, a difficult revision may be necessary.

Then again, the leg pain and/or numbness you feel is a result of something pressing on your spinal cord which can also lead to permanent nerve damage.

Your age is also a big factor as is your activity level. Some ADR recipients have no limitation whatsoever but most of us do. Fusion will also certainly leave you with limitations and lead to further degeneration.

I'm really not trying to scare you but you need to know as much as you can to help make the best decision possible. So what to do, especially with different doctors offering differing opinions.

Considering everything, and this is nothing more than my opinion, from someone who has absolutely no medical expertise whatsoever - I'd try the least invasive procedure first, something I don’t usually advocate and this is why;
Your recovery time will be less and with two small children, your down time is a factor.
The cost factor is minimal considering you can have this done locally (I would ask for other Canadian opinions though).
Though surgery is always easier on a virgin spine, future revision surgeries are easier and you may be one of the lucky ones who never need that revision surgery.
The possibility of permanent nerve damage will be minimalized.

I also don’t know why your back pain cannot be addressed with a discectomy which is why I suggest another opinion on that. My first disco/lami was good for 8 years. I was pain free!

I realize this is all a little too much to wrap your head around but something only you can decide. Your doctor is your most important decision along with which procedure. Please choose carefully and good luck.

Dale

[banhorn]

Thank you so much for your valuable insights, guys. I will probably postpone everything until after baby #2. That seems to be the most prudent course of action. I've read about some discectomies acting as contraindications for ADR, so I'm a little worried about burning that bridge. I might just tough it out for another 6 or 7 months... maybe my spine might settle down on it's own. Who knows. The 8 months have gone by quicker than I thought it would anyway.

8 months of physio and 2 months have chiro haven't helped much, I know that for sure.

I definitley need to read more studies on ADR if they do exist.

[dshobbies]

Brett,

There really aren't that many studies done on ADRs, one of the reasons insurance companies can claim they're investigational.

I'm a little confused as to your info that discos can lead to contra-indications for future ADRs???? I think you might be referring to the height of the disc that might make the ADR insertion difficult? Or are you talking about scar tissue?

Have you tried an inversion table? When you rest, are you in zero gravity position? A friend of mine also successfully tried traction though he was in the hospital for over 2 weeks.

Dale

[banhorn]

Hey guys,

Just a quick update. Things changed rather quickly for me after some Chiro treatments. For worse. I ended up with some pain in my shins/ankles that wouldn't subside... so I had a good chat with my wife and with my surgeon. It wasn't going to get any better, so I bit the bullet. My surgeon cautioned that my disc was very damaged and that neither a microdiscectomy or dynamic stabilization would alleviate my symptoms for long. It was too far gone. I tried!

I'm 9 days post op, sitting in Heathrow, waiting for my flight back to Canada. 9 hours is going be tough, but I'm very happy with my decision.

Thanks again for your insights and advice. In the end, I moved quickly to try and be of more help once baby #2 arrives... and my shins/toes feel great! The muscle spasms in my back and distraction pain will hopefully subside soon. I'm taking it slow and really hope I won't have to visit these boards much anymore.

I'm blogging my progress here:

"Backup"

Mr. Boeree in England was excellent and I would recommend him to anyone in our unfortunate position.

Cheers,

-Brett

[dshobbies]

Brett,

You didn't state which surgery you had but by the pictures, it looks like you went with an ADR.

I'm glad you found the relief you so needed and that you're already post surgery, on the other side, as we say.

The caution of the day is to take it slow. There will be times you feel great and push yourself but trust me when I tell you you'll pay the price but most of us, despite warnings, learned the hard way.

My best wishes for an uncomplicated recovery and please keep us posted.

Dale

[Maria]

On what looks to be a beautifully placed M6 from your description and the films! I don't really have any medical expertise to say that however it just "looks" right! And I do hope that you'll have comfortable traveling home and that you'll be in that much better shape to help out with Baby #2! I can't wait to hear more about the baby actually so please keep us updated!

Also I do hope your wife has had an easy pregnancy and will have an easy delivery. I worked in maternal child health as an RN and in OB/GYN as a Nurse Practitioner seeing patients during pregnancy and postpartum (the RN part allowed me to be in the delivery room prior to my NP training and I did mostly high risk resuscitations/preemie nursery and NICU).

Anyway, my back hurt thru most of those years however those lovely little babies (the preemies and NICU'ers) were my godsend to continue working with a terrible back thru my pre surgical years!

Much happiness to your and your family and I hope you'll continue to do well~ please update as time allows! I know you and your wife will have your hands full!
Maria