Degenerative Disc Disease

I'd like to hear from any hikers here with DDD.

**Not looking for medical advice, have a great team of health care providers working with me on this**

What I'd like is to hear from Hikers -- what's worked for you, how you relate your hiking goals to your health care provider in terms that are meaningful to them, how you have coped, what activity modifications you've made, what's realistic, and any inspiration you care to share.

I have been diagnosed with this in L2-L3-L4-L5-SI, and am beginning lumbar epidural steroid injections soon for a starting point for management of pain and inflammation.

Trying to look forward -- thanks in advance for sharing, here or by PM appreciated.

Best wishes ... spinal problems can be unpleasant but can be survived.

In my case (slightly different pathology, probably similar management) I could have continued indefinitely on epidural steroids had I not run into the uncommon complication of serious motor nerve degeneration (which now, after surgery, seems completely reversed).

In my case (Your Mileage WILL Vary) there was a clear repeated sequence of symptoms. After the epidural steroid there would be a period of a few months pain free, then occasional minimal pain, then more constant and more severe pain. I quickly learned to schedule the next epidurall as soon as the pain became more than an annoyance (about every eight months).

Relation to health care provider. My first surgeon was about my age and in poor health. He simply said that with my manageable symptoms surgery would be close to unethical.

Second surgeon was a great outdoorsman: running, climbing, four season hiking, kayacking ... Still, after carefully listening to my symptoms and looking at the MRI he agreed that, given the seriousness of the required surgery, he was very reluctant to consider it.

Third surgeon, of course, had no choice ... my leg was paralyzed and he had to give surgery a try. After surgery he, and my physical therapist, encouraged me to train as hard as I could to get back in hiking shape as soon as I could.

You can read my story, plus lots of comments from fellow VftTers, in The end of a long journey.

Tomorrow I hope to do Madison, in preparation for five weeks of hiking in Switzerland. You are much younger than I am, so with moderate luck you should be in reasonable shape a lot faster than I was.

hey-sorry---PMs sent

jim

Wow, sorry you (both of you!) have to deal with that. Nobody has told me that I have Degenerative Disk Disease in those exact words but I do have several torn and compressed discs in my L spine that "will get worse with age, not better".

I am very clear to my chiropractor and primary care physician as to what I consider to be "functional". It's a small town in the mountains so they have a pretty good idea of what I like to do on days off. They know that it is not enough for me to merely get from the couch to the fridge. They've been great about giving me targeted strengthening and stretching exercises and listen to me when I tell them what worked and what didn't.

My back tends to get bad overnight so finding a suitable mattress (and sometimes even sleeping on my inflatable Big Agnes for a few nights) is key for me.

On the trail I find that I require a pack with a very well-fitted and rigid suspension. None of these ultralight knapsacks for me. I need a pack that does double duty as a supportive back brace. My back often feels better *after* a hike.

Additionally I use custom orthotics in my shoes pretty much all the time. Stable ankles and knees make for a more stable spine.

Another thing that can induce an acute flare-up is if I use my back to catch myself, such as if I slip or go off-balance. To help with this I use poles on most every hike and slow down and take extra care when hiking on slick surfaces.

So far I haven't really had to dial back what I'm doing, just do it more thoughtfully.

-vegematic

Thank You Mohamed, Jim, Veg.

I am actually now seeing a Physiatrist (no, not a psychiatrist ) who is a type of MD who is musculo-skeletal-- as opposed to a straight up orthopedic. The goal is to use a combination of minimally invasive therapies to avoid surgery unless absolutely necessary.

I saw a physical therapist for six weeks -- pre and post marathon--and when conditions were not improving, my primary suggested referring me to the Spine Center at Newton-Wellesley Hospital, where I work (convenient!)

Main concerns were extent of sciatic nerve involvement -- my left leg has become progressively weaker and although I have suffered low back pain on and off since my twenties, its never been like this- with pain radiating down the leg, and very limited range of movement of lumbar spine --nor has it involved my legs or diminished strength in leg.

In addition, I have progressive weakness in my left hip -- this has not been MRI'd yet -- the plan is to start with reducing the inflammation in the lumbar spine, if the pain is "discogenic" (disco balls!) then everything else should return to normal state, with rehab.

If not, we investigate the hip further.

On a further note, there is a "tear" in the L5 disc, but its small and my Dr doesn't feel that there is nerve damage, just irritation.

Fingers crossed. No more running, but that's OK, I'm not married to it. Hiking however....

Thank you so much for your stories and your advice. Mohamed, you are such an inspiration in so many ways. I am so happy for you and thank you for pointing to your post. It was good to read it again, especially through different eyes this time. Chronic pain is the suck. It has really taken the wind out of my sails and the energy out of my body. I am looking forward to ending it.

I don't have any advice on DDD.
Only words of encouragement.

Live life to its fullest and pray for the best.
Do everything your PT says.

Attitude is everything.

And I'll sign on to be a member of your cheering squad.

I was going to post this on Rocks, but being the first I was sure it was applicable. But what the heck:

Max has/had "slipped disc" problems since before I was born from a skiing accident (IIRC) so it wouldn't surprise me if you have to curtail that activity or give it up altogether. I know he stopped downhill skiing a while ago, most likely to lessen impact on his spine, but also to avoid another crash.

Aside from that, I can't say he's had to limit his outdoor activities any further. Lots of hiking/backpacking, biking (road and mountain), running, swimming, hockey, golf, etc. He needs to be careful with golf (which he doesn't play much anymore) because of the twisting motion. The last major issue he had was about 20 years ago when he herniated it again (possibly at work? I can't remember, I think I was 8) and it put him on his back for a few weeks.

Finding a health care team that shares your goals will help you manage this successfully. Good luck!

I am totally ignorant of this condition but I do know it helps immensely to be physically fit, have a positive attitude and work conscientiously to do the therapies and medicine that might help. Other than that the only thing I can recommend is tequila!

Best wishes and hopes for your many years of outdoor adventures.

*Moved my post.
Meant to post this here and not on Limmer thread!

Hi Sabrina...sorry to hear about your DX.

I live with severe DDD and it's lovely range of symptoms that you know all too well.
There are times when I have moderate to severe pain, and other times when I feel much better. I deal with some degree of pain every day but try not to dwell on it. My right leg is compromised.

I am much older than you are but have not needed surgery yet. I do anything I can to support my back. This is why I speak so highly of my Deuter pack because it feels like a back brace and I hate to take it off at the end of a hike. Have spent lots of $$$ on gear trying to find things that work but it's been worth the effort.

I haven't hiked with anyone for years because I am way too slow but I keep going. My trip reports would not be nearly as riveting as the ones I enjoy so much on the boards, but they are still very special to this hiker.

I do my exercises every morning, use heat and ice depending on how I feel, take non-steroidals, and work on my hip and knee which are also quite painful.

I work at a Wildlife Clinic and I wear my lightweight Garmont hiking boots because they have a fairly rigid sole. I can hardly get out of my car when I get home from work or hiking, but eventually it passes so I feel lucky. I like a good pair of trail shoes for daily use at home and short walks. I have worn orthotics for many years. They really help with the alignment.

I wear my new Limmers more now because I do notice a difference in how my back feels.
I think over time you will see what works for you and what doesn't. I would recommend that you give your back as much care and support as you can even if you are feeling great, so you can try to avoid more serious problems up the road. Something as simple as being religious about using good body mechanics can be a big help. They told me to stop running when I was about your age. That was a hard pill to swallow, and moderating my hiking has been to. You just learn to set different goals and enjoy them. Any day in the woods is a good day.

Sounds like you are on the right "trail". Hope things work out well for you.
Take good care.

Sorry to hear about your problems. Trust that you will be quickly back in full form.

Maddy said:

I can hardly get out of my car when I get home from work or hiking, but eventually it passes so I feel lucky.

Click to expand...

Oh I know *that* feeling!!! Its one of the many reasons I feel so lucky that we have a place to stay up north now -- getting out of the car after a multi-hour ride (after a multi-mile hike) is often excruciatingly painful for me -- glad those days are gone.

Thank you for your gear suggestions -- I am very happy with my Osprey pack and I do keep my pack wieght at about 10-12 pounds total -- I have wanted to invest in a better winter and overnight pack for some time now so I will try Deuter's on when shopping.

I have a hard time modifying *anything*, my personality is work hard, clean hard, play hard. My idea of taking it easy last weekend involved removing approximately 3 yards of turf from my yard by hand shovel, and enriching, edging, and planting several new border gardens single handedly in one afternoon. In retrospect, I could have spread that work out over a few evenings and saved myself some pain. Sigh...its a challenge for me to slow down.

We recently purchased a new, all latex mattress and its been a big help at night -- I'm not sure if any of you experience this, but I am awoken several times each night by pain from simply rolling over.

Maddy, thanks for all of your kind words, advice and encouragement.

And Judy, its so great to "see" you hear again! Please stop by more often.

Welcome to old age Sabrina! Just joking! You have the right attitude and a good therapist, just follow their advice and take it a "little" easier (not easy, I know) I was diagnosed with Spinal Stenosis some years ago and sleeping positions are the biggest challenge for me, I can't lie on my right side for more than 5 minutes without waking with neck pain. I find I need one pillow with a cut out for my head works well when lying on my back and 2 pillows when lying on my left side. This of course gets complicated when I wake up in the night to turn over. I wonder if adjustable height pillows (push button) might be a good business to get into
I have also found that doing nothing (total rest) doesn't help either... have to keep going...and like you, that's what I enjoy most.
Hope things get better soon!

Hey Sabrina!
I FEEL YOUR PAIN!!!
Sent you a PM.
Sandy

can you say

type A

when your body tells you to slow down and space it out some..well.. while it does not seem practical or desireable at the time

in the long run it is good

I know my back was killing me after winter hiking..lighter summer packs and a couple visits to the chiropractor turned the tide for me and this spring/summer has been good..well..except for running on the flats..a little uphill or downhill fine though

take care of that..listen to your doctors

and while i think stretching is over rated..sitting in a comfy chair one night a week is not a bad thing and helps the body heal

you rock

Turn your back on the pain.
Stop all pills.
See a chiropractor who can stop the progression. (well, who can slow it down big time)
Do the exercises.
Keep on hiking but don't load your spine in any other way.
Do no exercises in the early morning.
Google "neutral spine" and find out how to keep yours in neutral 24/7.

The above advice is pure gold if followed even if I do say so myself.

Silverfox said:

can you say

type A

when your body tells you to slow down and space it out some..well.. while it does not seem practical or desireable at the time

Click to expand...

Ha ha ha....you know me too well.
That avatar speaks volumes about what is possible with the right intervention at the right time.

Neil said:

Do no exercises in the early morning.
Google "neutral spine" and find out how to keep yours in neutral 24/7.

Click to expand...

I like that "no early morning" part.
Thanks for that advice, Neil! I am getting some spinal manipulation as part of my physical therapy -- it definatley helped me feel more balanced and "free-er" in the lower back.

The best thing I've ever done for my DDD was to take my surgeons advice and get the CSI's. After injections, I was pain free long enough to really stretch out my back, work on core strengthening, and get moving again...

I'm not near 100% but can get arouns without pain.

The next step is to get a new mattress, as my old pillowtop is causing me much pain in the AM.

Couldn't agree more about the exercise in the am. I need a couple hours to get my back loose and comfortable before moving. Now I do my work in the evenings and spend the AMs drinking coffee before work.

Hope you keep improving.

Best,

Bryan

HikingBryan said:

The best thing I've ever done for my DDD was to take my surgeons advice and get the CSI's. After injections, I was pain free long enough to really stretch out my back, work on core strengthening, and get moving again...

Click to expand...

Thanks, I'm really nervous about getting them (I start next week) but have the same goal in mind. Glad to hear its working out for you.

Don't be afffriad of the shots. I spent a lot of time worrying about them and at the end of the day it was nothing. No pain, just a slight burn, and the benefits were SO worth it. In retrospect, I wish I had them earlier, as I missed a lot of hikes and ski weekends b/c I put the shot off for too long.

Well, I had it done today.

My discharge instructions say:

"You had bilateral S1 transforaminal steroid injections"....AKA nerve blocks....

I hope it works. Wicked burning pain when they did two anesthetic injections. Pressure in low back when epidural needles went in. Radiating pain down legs when steroids went in. Some pressure and rubbery legs after. Spent about fourty minutes chilling in recovery before they let me go home.

The Physiatrist talked to me about hiking to refocus me during the procedure, I was nearly jumping off the table. I was impressed he could do that and wield two large needles at the same time!

Thank God for health insurance.

It may take a few days to feel a difference, and I may be more sore before better.


A sixty minute swedish massage later in the day helped, too.

As did cake and an iced latte.

Back in two weeks for a repeat.

Thanks to all for posts and pms, encouragement, advice and support.