Multi-level disc injury - frustrated rant

[jessmarimba]

Ahhhhh jinxed myself by reading this! My back is seizing and I can't go from sitting to standing without serious pain. I hope it calms down soon because I have to fly in the morning...

So no, I will vouch that back pain recovery is absolutely NOT linear

[kamikazejane]

I am so sorry. I literally feel your pain. 3 compressed vertebrae, spinal joint deformity, deteriorating discs, ligament and muscle damage. It's been every day pain for me. Crashed racing motorcycles in 2010 and then was hit by a car while on the back of a Harley last summer which sent me into chronic pain and further bone loss in the already damaged vertebrae. 6 months of PT did nothing for me. Finally went through the whole facet joint, epidural injections and finally nerve ablation. I still have some minimal pain and have had to had another epidural for below the compressed vertebrae because it hurt to even take a deep breath. I am now back in PT and on a very hardcore pace to build strength so that I can have some stability in my spine. It isn't easy at all and gets depressing at times to have to ask other people to pick something up for you etc. Just getting out of bed in the morning hurts. The one thing that my pain management doctor was able to understand was that it was better for me emotionally and psychologically that I still ride my bike instead of sitting at home focusing on the pain which sometimes makes it worse. In all honesty, the riding has actually helped to strengthen my lower back up. I am most likely a candidate for surgery as well for spinal fusion but I am fighting to not have it any time soon.

I am so sorry you are having to deal with back pain too It makes you realize how you literally use your back for everything you do on a daily basis. I think depression was the hardest part of it all though with having to give up alot of things I enjoyed doing. Reason being my doc told me to keep biking and to just make sure my bike is set up right for me oh and try not to crash lol

Hang in there Oakleaf. PM me if you ever need to vent ok. Maybe have a consult with a pain management doctor. I know it only masks the pain but from experience it allows you to at least enjoy biking again and not have to pop pain pills or muscle relaxers. The injections help to get through PT as well so that you can work harder at strengthening the surrounding muscles. Without the injections I couldn't make it past stretching excercises in PT without my whole back spasing out and then the next day not even being able to stand up straight. So maybe look into this as an option as well. Again, I am so sorry you have to go through this. Good luck ok

[OakLeaf]

Oh man kamikazejane, I'm so sorry you're having to go through all that. One of the things I'm very grateful for is that I don't have pain - the new sensation in my left arm is more of a burning type numbness than the right side, but it's only like a mild sunburn (in fact, when I'm outside I keep checking my arm to see if it's burnt ).

The lumbar and thoracic stuff is getting better little by little. Wish I could say the same thing about the neck. My shoulders are so out of whack it's hard to know how much of the nerve compression is coming from the nerve roots and how much is from the thoracic outlet. I'm so hoping it's one of these things that gets worse before it gets better ... and that the new symptoms are just the result of my shoulders and upper spine realigning themselves ... fingers crossed.

I totally hear you on the bike. I'm lucky that running (short distances, anyway) actually seems to help my symptoms, but if that made it worse too, I'd have to choose between running and cycling.

You hang in there, yourself.

[OakLeaf]

Well, the left arm/shoulder stuff is getting worse, at this point it's the worst of it, though I've been kind of having a bad week with all of it.

My PT was surprisingly honest that the doctors in her practice are of the type whose skills consist of taking an MRI and finding the dotted line that says "cut here." She doesn't know a physician who takes a more hands-on approach at this point (she knew one who moved away), but she has a PT colleague who's both more hands-on herself, and who may know a doctor as well - she's supposed to get back with me today, hopefully. My sister who's an acupuncture doctor is also checking her networks to see if there's anyone here she'd feel comfortable with. It's hardly a health care mecca here, but then again I know there are a lot of places that are worse.

I'm really trying to be positive, but it's getting harder and harder.

[indysteel]

((((Oak)))). I'm sorry to hear this is getting worse, not better. I hope you find a doctor to your liking soon. Hang in there until then....

[luvmyguys]

I'm so sorry. I saw the thread title and cringed. I had to give up a sport thanks to my injury, and it hurt to give it up (but hey, now I'm here!).

Have you considered a good chiropractor? I make that suggestion with great hesitation, because there are good chiropractors and ones that can leave you paralyzed, and sometimes it's hard to find the good ones. I happened to luck out on that score. Everything she did had the blessing of an independently seen orthopedic surgeon, and she was the one who ordered the MRI for my neck and recognized (quickly) that my injury wasn't something she'd be able to treat. She then sent me to one of the best (and most medically conservative) neurosurgeons in the city.

She did something called spinal decompression (again, with the blessing of the orthopedic surgeon I'd gone to for a second opinion), which, while it wasn't able to fix the problem, kept me out of pain until the surgery. It's a gentle, computer based traction (I called it the rack, though).

Again, I make the suggestion with trepidation, because I know there are definitely bad chiropractors out there (I saw one article that referred to them as chiromancers). Think your PT might have a recommendation?

Good luck, and I'm so sorry it's derailing the sport you love!

[OakLeaf]

Thanks. Actually I've been seeing the chiropractor my PCP recommended. I was impressed with her initial exam but there have been a few things that have caused me to lose some confidence. My PT is setting me up with another PT in her practice who has a great deal of training and experience in manual therapy and we're going to go from there. Maybe with a new treatment focus, maybe with a referral to an ortho, we'll see after she sees me. My sister suggested I see a DO who's trained in Sutherland's technique - perhaps one of the doctors the new PT has in mind is one of those.

[OakLeaf]

sometimes it takes awhile to find the right one.

I wish I had the first clue how to do that.

I spent 15 years reading other people's medical records, and while I definitely identified some doctors I would not go to, I still have no idea how to find a good one.

I had experience with another thing, some years back, and never did even find a doctor who would listen to me. The issue resolved (sort of) and I have my own opinion of what it was, but it's likely that it's responsible for other problems, that maybe I might not have/have had if the first thing had been properly diagnosed and treated. And in the meantime my medical records were cluttered up with doctor-shopping - remember that every time someone sees a new doctor, it's a black mark on their record that makes the next practitioner less likely to listen or respect them. Just the way it is. I can't even begin to count the derogatory comments I've seen in other people's records when they haven't just stuck with one practitioner.


I'm still inclined to think that referral from a practitioner I trust is probably the best way, but finding a practitioner I trust to begin with is still an issue. I like my PCP, but honestly I don't think she's particularly competent. I'm inclined to trust this new PT, but I've only seen her three times so far. The doctor she actually suggested I see isn't taking new patients, so I'm scheduled with a colleague of his who has similar credentials. One thing I know very well is that credentials and competence are two different things.

But I've got to be realistic, too. Medicine isn't magic. People younger than I suffer injuries that they never recover from. I'm grateful for the years I've had. This is earlier than I thought I'd have to be making hard decisions, but sooner or later, unless we're lucky enough to be struck out of the blue, we all have to make them.

[redrhodie]

Hey Oak,

How are you?

[OakLeaf]

Thanks for asking. I'm a bit better emotionally. We're trying a short road trip this weekend in the car ... I'm a little nervous about being upright so long, but hope to get through the weekend. Two weeks til I see the new doctor - keeping my fingers crossed.

How are you doing?

[shootingstar]

Keep us posted, Oak. Hang in there. Eat healthy, etc.

What else do you love to do besides jogging & cycling? (I know it's not the same, but still...mental life insurance is useful.)

[OakLeaf]

What else do you love to do besides jogging & cycling? (I know it's not the same, but still...mental life insurance is useful.)

Well you know the gear that lets people do things without using their arms is geared to people MUCH worse off than I. You can understand why I'm reluctant to go there. I am considering a portable massage table, that would at least let me read through the face hole.

[OakLeaf]

OK if I whine a little more? Ignore if not ...

The good news is at least I have a direction in mind. I started seeing a new PT three sessions ago, who's taking a different, more hands-on approach, releasing trigger points in my diaphragm (ow!) and intercostals as well as the more traditional muscles and doing more mobilization and stretching, less of the strength work that tends to aggravate whatever it isn't directly relieving.

Several people agreed that I'm most likely to be helped by an osteopath who practices Sutherland's techniques. The bad news is that the nearest ones are an hour and a half away over country roads that are just murder on my back. I have an appointment in a month. I'm planning to let DH drive, and lie down in the back of the car. Still...

The isolation is as bad as anything else. Basically everyone I know is from either cycling or yoga - I've tried going to some political meetings and stuff just to meet people, but I can't be upright that long. So the only people I have any interaction with all day are my husband and my therapists, and you guys and my FB friends.

I know I know I know a lot of people have it much worse. I just need to vent right now....

[indysteel]

I'm so sorry, Oak. While my isolation in the booming metropolis of Franklin, Indiana isn't quite as extreme as your situation, I definitely felt painfully bereft of my old cycling and running friends when we moved there. It's gotten better over time, but I still have far less interaction than I once did. I've cried many a time over it. So, I do understand at least part of your pain and sincerely hope that you find physical and emotional relief soon.