Multi-level disc injury - frustrated rant

[OakLeaf]

I just need to vent. I had a setback over the weekend, and my (awesome) PT yesterday used the phrase "if this becomes chronic," and I'm just really frustrated over it right now.

As glad as I am that I don't have pain, it makes it difficult since numbness is harder to identify immediately. I'm rarely sure when I've done something to aggravate it. Plus, it doesn't necessarily respond immediately, either.

I'm frightened that it will progress, both by getting worse and by getting into the motor nerves. I've got some very slight weakness in my right hand. I'm really not sure about leg weakness, the PT didn't identify any on muscle testing, but at times my balance seems to be off.

I'm frightened that I'll wind up like my dad with his multiple failed back surgeries. (I think I would have to be on the point of paralysis before I'd even consider surgery, given his experience.)

I miss my bike. I miss my riding buddies. I'm afraid that I won't be able to travel since an hour in the car is pretty much my limit. Running short distances is actually good for it, but I haven't tried to carry water for longer distances, and I'm afraid of trying that, too. Plus I still really prefer to run alone - and if I wanted to run with people I'd have to drive to do that, too, which is problematic - so running really can't substitute for biking as a social activity for me.

It really seemed like everything was getting better, and now I've had this setback and I'm not even sure why (though we have a couple of theories - short flat easy bike ride (okay during, some flare about 8 hours later), then a car trip the next day to somewhere just 10 minutes farther away than the PT clinic, and it was the day AFTER that, that everything was really bad).

It's been almost three months since my neck injury and about five weeks since the back really flared (there was some very slight diminished sensation in the L5 dermatome before that).

Mainly I'm just venting, but if anyone has some words of encouragement I'd love to hear them...

[indysteel]

((((Oak)))). I'm really sorry to read this. While I don't know much about back or neck problems, I wanted to send some healing vibes your way. I hope your PT can get you some relief soon. I know how frustrated I've been over my own injuries and illnesses these last couple of years, so I really feel for you. Hang in there.

[Veronica]

That's just stinky! :(

You can socialize with us. But that's really not quite the same is it. Maybe be a rest stop for your riding buddies?

I hope it gets better soon.

Veronica

[Catrin]

(((Oakleaf))) I hear your frustration, and well remember what it felt like! It sounds like our situations were similar...

I don't know if this will help, but I remember well that about 3 months into my whiplash recover I was very depressed because I couldn't see how things could improve - and all of the things I loved to do caused problems. It took 8 months but I am back to my usual activities - and just returned to mountain biking. I never dreamed it would take this long, but it finally came.

Hang in there, it is hard to deal with a lingering injury and neck stuff appears to be prone to that. My neck still isn't 100%, and I don't expect it ever will be. If I overdo things then I still get a bit of inflammation in my neck where the whiplash was the worse but I know the signs and back off so it doesn't progress.

I hope this helps at least a little. Sending you hugs and good healing vibes. Do you think it might help to see another PT or specialist?

I love Veronica's idea about being a rest stop for riding buddies :)

[maillotpois]

I'm so sorry.

When I had to be off the bike for 6 months for a medical issue, I actually found that being on the forum, hearing about people cycling, etc., made me feel worse. So, for me, the idea of hosting a rest stop would not have been a positive thing. But that's me. Only you know what will work for you.

Have you exhausted options with medical professionals? In other words, have you gotten second, third, fourth opinions? I know you say your PT is awesome, but maybe just consulting with someone else, or a different orthopedist, might be helpful?

[jessmarimba]

I'm so sorry :(

Backs are so weird like that. Your recent setback may not have even been caused by anything you can pinpoint. I know some mornings I just wake up and it's a "hurt" day, unrelated to anything. I feel very lucky I've found the pilates/massage/therapist woman that I work with because some days I'm convinced she knows my back better than I do.

Just thought I'd mention, having a hammock (with no spreader bar, hung tightly enough that I can lay level across it) has really, really helped in relieving pressure for me. To the point that I rave about it all the time so I apologize if I've brought it up too often here :) Since you're supported evenly with no pressure points it seems to release nerves and muscles that get aggravated by my normal posture.

Also sort of random, but you may want to think about things you carry on a normal basis. I don't even carry a purse most of the time any more because even that slight imbalance seemed to have exaggerated effects.

Hope you're doing better soon! *careful hugs*

[OakLeaf]

Thanks all. I'm feeling a little better emotionally right now ... I can't forget to be thankful that at least I can run. It would be really bad news if I couldn't do any cardio at all. For DH as much as for me - that just makes me mean. :cool:

I've read that discs can take six months to heal. It's probably normal that progress isn't linear - maybe -

[Crankin]

I hope you are feeling better, Oak. I've had minor back issues, so I can only imagine what you feel like. On the other hand, I did not deal well with not being able to ride for other reasons, so I hope you can concentrate on your rehab and eventually return to riding. I second the advice to get another opinion.

[Catrin]

(((Oakleaf))) don't you hate it when healing doesn't progress in a linear fashion? Hang in there, and nothing wrong about venting here when it gets too frustrating. Can you get a second opinion, or see a different PT just to see?

[yellow]

Hang in there, girl. Caring properly for your body is a life long, hard thing to do. A lot of people don't, and don't often appear to have problems. Then there are those of us who do yet seem to have the rotten luck. I know, it doesn't seem fair. I think of it as using my body as it was intended to be used. I have some parts that don't work so well, but I learn to work around them as I go along.

I too work with a physical therapist that is probably like jessmarima's PT. Mine is a manual PT. She tried me on the pilates reformer but even the loading from the shoulder pads fired up the nerve pain and numbness. We work on mobility a lot, and I'm always searching for something to make it just a little bit better. In the meantime I am grateful that I can do what I do (can't ride a bike for more than 1-1.5 hours or ride in a car comfortably for more than an hour but can run 50 miles. :confused: Go figure). It's way better than it was before surgery but I think I've finally figured out that it will never be what it was when I was 30. So I'm just going for the biggest RAWR I can while I can. Never know when I'll be reduced to purring on the couch contentedly!

((((( <3 )))))

[Bethany1]

Hang in there. Neck/back injuries take a long time to heal and yeah, may be be even chronic. However; you can get through this. It's like one step forward, two steps back. Don't give up and give your body time to heal. Easier said than done, I know. If it hurts stop.

If you need to see other docs, do so and know your options. Get the help you need.

With neck/back injuries, have you thought of a recumbent if needed? I've ridden a couple and enjoyed them. My back is bad and sometimes I think one would be perfect. Was drooling over one at the LBS today. Yes, they are totally different, but I hate for you to think you'll never ride a bike again.

Thinking good thoughts and ((((HUGS)))).

[redrhodie]

(((Oakleaf))). This really sucks. I hope you get better quickly.

[malkin]

I had a disk event about 13 years ago, and yah--it takes months to get through. The course was pretty up and down too; I'd feel a bit better then have a set back pushing a grocery cart or something else mundane. All the sciatica, tingling, numbness could come and go and defied all my attempts to figure out what helped and what made it worse.

Hang in there, keep up the good work, and you'll get better.

[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 :rolleyes:

[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 :rolleyes:).

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.

[Crankin]

I am sorry to hear this, Oak.

[Catrin]

Oak, so sorry to read this, hopefully the new doc can help you out. It is a pity that so many see surgery as the first option :( Have they tried injections/would you consider that? It did a world of good for me - it apparently brought the inflammation down enough that the more troublesome symptoms of nerve impingement (patterns of numbness from my jaw to my fingers) went away and haven't returned. My problem was pretty much limited to my cervical spine however, while it has multiple problems it certainly sounds less complex than your situation.

He was a "Physiatrist", if I recall properly. I know injections don't work in all situations/for all people but I did want to mention it.

[silversurfer]

OakLeaf, sorry to hear this. I don't understand the issue fully but I really hope that you find the right medical support and resolve this problem.

[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.

[redrhodie]

(((Oakleaf))). This sounds awful. I hope you find someone to help, and can get there in one piece. I hope you get your life back soon.

[2wheelr]

Oh, Oak, I'm so sorry to read about your troubles! My husband had 2 herniated discs a few months back, and for days he was flat on his back. He had jumped down from the rig and that was it-he was in so much pain he had to leave work. (That NEVER happens!) after spending 3 days completely on his back, he was able to move around a little but he couldn't drive, so he had to be driven into the city to see the doctor. Finally they prescribed PT and we have one around the block-she's fabulous. All the electrical stimulation, manual stuff,it did take some times but now he's back to work and doing well.

I hope your recovery comes soon for you. I'm glad you changed things up when it wasn't working. It's all about what's right for you and facilitates healing.

[Desert Tortoise]

Oak, sorry its been so rough for you. I know how you feel about not being able to do stuff and then isolation on top of that. I understand what you mean about others having it worse, but still, it hurts.

I hope the new PT works for you and the osteopath can bring more relief to you.

dt

[Catrin]

Oak, I am sorry that this is dragging on so long for you and that you are still in pain, and the isolation certainly doesn't help. I really hope the new osteopath can help you in short order!

[jessmarimba]

I'm so sorry. It's so not fun to be stuck home. Any chance any of your cycling friends would humor you with an evening of cards or board games or something at your place? I'd come keep you company if I was there!

[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?

[redrhodie]

I'm feeling good. Meditation has helped. Time is helping.

Have a great trip! Hope your body cooperates! I hope the time flies until you see the new doctor. That's a long time to hurt.

[OakLeaf]

Update ... I've been posting some in the running threads, but I'm almost starting to dare to hope.

Three visits done with the osteopath. Getting appointments with him has been frustrating, but the treatments help. Sutherland's techniques are WAY different from anything I've ever had done before. I don't even know how to describe ligamentous articular strain. Half the time it doesn't even feel like anything when he's working on me, but whether I feel it or not at the time, I definitely feel it afterward. Muscle soreness on the one aspect, postural realignment on the other. Powerful stuff.

Then I'd originally asked my sister for a recommendation of an acupuncture doctor, and she's the one who recommended that I first see an osteopath who practices Sutherland's techniques, but in the meantime when I was going too long between appointments with the DO, I started seeing the LAc my sister recommended, who does motor point technique. Two out of three treatments with her now, I've been lying on her table and a muscle just let go and has pretty much stayed de-spasmed. Jaw-dropping stuff as far as I'm concerned. Again ... I've had acupuncture before, but not motor point work - actually my LAc isn't certified yet, but she's studying for her sports medicine certification and incorporating motor point techniques in the meantime.

My low back is WAY looser, I'm able to get my pelvis closer to neutral, I'm feeling better running. I've still got a fair amount of numbness all over but less "deadness" in my arms. I also started being less afraid of the stuff in my legs going into the motor nerves - even though it has already done that in my arms, my other sister told me that she has chronic numbness in her legs but no weakness, and she really doesn't take care of herself musculoskeletally. If things continue the way they have been (fingers crossed, again ... up until now I've been too afraid to even say I'm getting better even as it happened) I'll do one more "long" run (up to 9 miles now) and then try carrying water.

I went ahead and put my application in for the Boston Marathon when I was much more uncertain than now - the one thing I REALLY didn't want to happen was that I'd get healthy enough to train, but get closed out due to my own inaction - and I'm starting to think I might actually be able to run the dang thing.

I hope I hope I hope I hope.

[Blueberry]

Crossing fingers for you! It's amazing how many different ways there are of approaching the same problem - and how they all work differently for different people. I'm glad something is working for you!!

[Catrin]

This is so good to hear Crankin, crossing all fingers and toes for you :)

[redrhodie]

Yay! I'm so glad you found something that's working! Have you been on the bike yet?

[OakLeaf]

I'm not climbing hills yet since they aggravated the low back so badly, but I'm up to a whopping 20 miles of bike path (which is 3+ laps of the nearest one :rolleyes:). Better than nothing.

[Catrin]

I'm not climbing hills yet since they aggravated the low back so badly, but I'm up to a whopping 20 miles of bike path (which is 3+ laps of the nearest one :rolleyes:). Better than nothing.

I've had my own issues with climbing aggravating back/neck injuries so I feel your pain on this one. It IS, however, wonderful that you can get out there and ride - sweet! It will surely just go up from here ;)