Chronic pain....embarrasement? WTF?

[PharmaCan]

Glad you thought that was a reasonable explanation! It certainly seems to work in my case.

I don't yet have the sharp needle pain, but they tell me that might be next--or that permanent paralysis could result. Right now it's numbness and tingling, along with muscle weakness and motor coordination trouble. I've got a bunch of bulging disks along my thoracic and lumbar vertebrae, but the real problem is a severely constricted portion of my spinal cord along my cervical spine that's preventing cerebrospinal fluid from getting through above and below, which puts pressure on the brain above and the spine below. It's enough to merit pretty quick surgery, but they have to get my heart rhythm straightened out before anyone can do surgery on me. As much as I enjoy learning and reading about medical stuff, I actually hate dealing with it personally, so this has been a challenge. I am glad at least I'm in a more efficient system. I can't believe you had to wait two years for an MRI! That is the one thing that scares me about the idea of universal health care down here--the fact that it'd likely slow us down, too.

Thanks for the kind words. I hope I will make a good doctor. I see fairly regular examples these days of how NOT to interact with patients. Actually, right now, I hope I can make it through these next few weeks without permanent disability, live through the surgery, and heal well enough to continue my course of study. I'm scared about this surgery!

BirdGirl - Spinal Surgery is very scary, especially after you read all the dire consequences that can happen.

But on the bright side - I had a similar surgery in 1997. Nine hours on the table! The neurosurgeon said the stenosis was so bad that he had to scrape the plaque from the sheath around my spinal cord. (Apparently, it ordinarily just sluffs off quite easily.)

The day after the surgery I felt better than I had in years! All the pain was gone - 100%. One of the symptoms I had from the compressed spinal cord was that I could only walk short distances before my legs would start cramping. The second day after surgery I had them take out my IV (which was connected to my pain meds, so that tells you something) and I spent about two hours walking around the hospital parking garage - no leg pain whatsoever.

After the surgery, be sure to check out your surgical X-rays. What they do to your esophagus is utterly amazing.

On a final note, when the time comes that you can finally get rid of your Miami-J neck brace, let me know and I'll help you destroy it in a particularly heinous manner. (You don't know what I'm talking about now, but in a few months you'll learn the true meaning of loathing.)

Best of luck!!! Try not to worry too much. You're going to feel sooo much better when it's over.

[Dave Byrd]

Birdie's got such severe stenosis that her spinal cord is narrowed down to about half its normal girth through C5 - 7. And the leg cramps get her, too. (She's my wife.) They started at night, with cramping for no apparent reason, and now she gets them during the day, too. She had one neurologist tell her it was nothing. And she had one neurosurgeon who didn't look long enough at her MRIs or reports to see what was really going on and told her she was in the early stages of ALS, a fatal motor neuron disease. This to a woman who's one of the brightest first-year med students in her class--and who's married to me, a physician. Just because people work in medicine themselves doesn't mean they get excellent care, we've found out.

She's been through the wringer, and while I know she dreads the surgery, I know she's going to feel better. She'll be glad to read your thread.

[Purple Banana]

I have chronic pain- Fibromyalgia, in addition to a myriad of other health issues

I rarely, if at all, mention "chronic pain" around people I know, especially at work. Unfortunately, not many physicians recognize it as a legitimate issue, and usually the words 'chronic pain' may trigger thoughts from others about opiate addiction, because pain med seekers tend to use 'chronic pain' as an excuse to get the painkillers they're addicted to. I don't use opiates for pain control, but that's besides the point.

I was driving with a few friends once, and I had a really severe back spasm. I had to pull over on the side of the road to regain my composure with a car of 4 people staring at me with mixed looks of confusion... It was pretty embarassing, but I guess they forgot it? I don't get back spasms in public much, but when they do happen, it can be quite embarassing; people tend to think you're either neurotic or a drama queen, when really, you just want to hide in a hole.

[PharmaCan]

Birdie's got such severe stenosis that her spinal cord is narrowed down to about half its normal girth through C5 - 7. And the leg cramps get her, too. (She's my wife.) They started at night, with cramping for no apparent reason, and now she gets them during the day, too. She had one neurologist tell her it was nothing. And she had one neurosurgeon who didn't look long enough at her MRIs or reports to see what was really going on and told her she was in the early stages of ALS, a fatal motor neuron disease. This to a woman who's one of the brightest first-year med students in her class--and who's married to me, a physician. Just because people work in medicine themselves doesn't mean they get excellent care, we've found out.

She's been through the wringer, and while I know she dreads the surgery, I know she's going to feel better. She'll be glad to read your thread.

I've got C4 - C7 fused using a piece of donor fibula placed vertically, anterior. I chose donor bone because I wanted to limit the chances for infection. The donor bone didn't fuse as quickly as it could have resulting in an extra 2 1/2 months in that f-----g Miami-J brace. But, aside from the neck brace, the surgey was a piece of cake. Like I said, I stopped pains meds at two days post-op.

What was so wonderful about this surgery is that the relief from the symptoms is almost instantaneous. For almost three years I felt like I had a knife in my back, right around the middle of my shoulder blade. That was gone, completely, the day after surgery.

When your wife leaves the hospital, be sure to take the temporary neck brace they put on her after surgery home with you. She'll need it for taking showers. As I recall, the neck brace she'll be wearing to recuperate has replaceable pads. Be sure to get an extra set of pads when you get the brace 'cuz 24/7 in that thing and it gets kinda funky kinda fast so it's nice to have a clean (washable) set of pads on hand to swap out - and it beats the hell out of making stupid excuses about why you're sleeping on the couch.

[PHATTY LUMPKINS]

No matter what as soon as you are able to. Start to walk and try to push yourself a little more every day, and your recovery will be healthier and faster. Hopefully!!! Was for me anyway's. As I said I still have a disability. but I do my best to try and get out with my family and freind's as often as possible. I Am just recently released to go back to work. Surgery was 10 month's ago. stay positive and good luck.

[PharmaCan]

I just wanted to ask anybody else in chronic pain, or anybody with some knowledge on the psychology of the matter, if they experience or know of this. I know it's not really logical, but I'm finding lately in social situations that I feel really embarrased when I have to admit I'm in a lot of pain.

I'll just be sitting with my friends hanging out, smoking a joint, whatever. Sometimes we have some people with us that are more aquaintances and that makes it even more akward. And suddenly I'm finding that I'm in excrutiating pain (it just comes and goes randomly). So there I am, in a social situation with lots of people and lots of involved conversation, and all of a sudden I either have to admit I'm in pain all the time, or limp off to another room which makes it look obvious; what with the limping.

I'm not even sure why I find it so embarrasing, not exactly anyways. I think I'm just getting tired of having to bring it with me so much. It's like every time me and my friends are hanging out I have to constantly remind them. Even though they're always completely understanding, I have this overwhelming feeling that when it comes up they stop seeing "me" and start seeing a cripple. It's so humiliating to feel like I'm just "that cripple" in people's eyes.

Ugh, I don't know, is this really heard of? I mean does this normally happen to people in similar situations? Is there a way to get myself out of this mindset? But then again maybe it's justified, maybe they do see me that way now.

Mr.D - I ruined my knee when I was 24 y.o. and have been in chronic pain ever since. Additionally, my knee was so unstable that, even if there had been no pain, my physical abilities were still severely limited.

I think I know how you feel.

The way I handled it was to tell the pain, "Fuck you, this is my life and you are only along for the ride." I'm serious! This wasn't a passing thought; I seriously faced my pain just like it was my mortal enemy and I spent many months, even years, confronting this issue in my mind and dealing with the psychology of the pain.

People never thought of me as a cripple - they thought of me as one tough SOB who wasn't about to let pain get the better of him.

Of course, there's a few things you have to get used to in your life; like if you're out with your friends and they start running, wave them on with a smile on your face and tell them you'll catch up with them.

I still went snow skiing with my friends, but instead of skiing I manned the cam-corder. My friends had the best skiing flics of anyone - and were delighted that I was there to film them.

I still went water skiing with my friends; only I drove the boat.

I've jumped out of airplanes; rafted bodacious rivers, scuba dived in oceans so beautiful you'd think God was taking you on your personal tour of heaven and traveled to every continent on this planet, all with my constant companion, pain.

I don't know if any of this has helped you. I know from experience it can be tough to be in your spot. Just try to always remember two things:

1) Your pain is not something to be ashamed of. The fact that you are still in control of your life, despite the pain, is something to be proud of.

2) The fact that you have to change your life style means only - that you have to change your life style. Surely you don't think in your short life that you've done all the fun things there are to do, do you? So find activities that fit in with current abilities.

Remember kid, you ain't crippled - your tough!!!

[birdgirl73]

PharmaCan, thanks so much for your posts and the wonderful advice!

I think they're going to end up fusing C5 - 7 on me, after they do the anterior discectomy and also a cervical foramenotomy, which must be the part in which they widen out the path for the spinal colum and the projecting nerves through that section. They're using bone bank/donor bone on me, too. Just one less thing to have to heal from instead of also having a hip incision, too, for bone harvesting. They're using a reinforcing titanium plate to help brace the fusion.

I have more questions for you, if that's OK. Did you have to wear your cervical collar to sleep in? Was it hard to adjust to? Also, tell me about what they do to keep your esophagus open during the surgery. I've wondered about that. I know they'll have a tube in my trachea to breathe for me, but I've been wondering how they open you up from the front of your neck, get in there and do all that delicate work with retractors and still keep your esophagus open on one side and your carotid on the other. I wish I could see the whole procedure on video, to be honest. I've heard that with swelling and pain in the first two or three post-op days, swallowing can be a challenge. My surgery's not going to take 9 hours. The surgeon said it'd be about 3.

That's very reassuring to me that your symptoms were relieved so quickly and that you stopped pain meds so quickly. I don't get much help from traditional narcotic pain meds, but I do like NSAIDs such IV toradol or oral ibuprofen. Did you regain any of your lost neurological ground afterwards? I'm hoping the numbness and tingling will stop in my shoulders and that the muscle weakness will be reversible. I'd also like the fatigue to go away. The neurosurgeon said what comes back will be icing on the cake and cautioned that the surgery's intent is to stop the progression of spinal damage.

I can't tell you how much I appreciate talking to someone else who's had similar work done in a similar area. And it is so reassuring to read that muscle cramps were part of your symptoms, too. It was that symptom, along with the muscle weakness and slight motor difficulties, that I think led that one surgeon to say he thought I was at the beginnings of ALS. Fortunately two ohter surgeons concurred on the stenosis/spondylosis problem and said this can be fixed.

[Purple Banana]

I hope everything turns out okay, BG!

And Pharmacan- It's amazing what you can do when you simply say "screw you!" to pain- my philosophy is, why sit around moping about how much I hurt? Thankfully, structural damage doesn't occur with my pain, so when I hit my arm or leg against something, and it hurts, I simply think "It's not doing any damage- It's only a result of my nerves sending messages and my brain releasing chemicals, so why even acknowledge it?"

Ever since I made that distinction, I just don't seem to hurt as much anymore.

[Nor.Cal Smoker]

I have chronic pain- Fibromyalgia, in addition to a myriad of other health issues

I rarely, if at all, mention "chronic pain" around people I know, especially at work. Unfortunately, not many physicians recognize it as a legitimate issue, and usually the words 'chronic pain' may trigger thoughts from others about opiate addiction, because pain med seekers tend to use 'chronic pain' as an excuse to get the painkillers they're addicted to. I don't use opiates for pain control, but that's besides the point.

I was driving with a few friends once, and I had a really severe back spasm. I had to pull over on the side of the road to regain my composure with a car of 4 people staring at me with mixed looks of confusion... It was pretty embarassing, but I guess they forgot it? I don't get back spasms in public much, but when they do happen, it can be quite embarassing; people tend to think you're either neurotic or a drama queen, when really, you just want to hide in a hole.

I also suffer from Fibromyalgia, as a matter of fact that was my first diagnosis before finding out about the arthritis. It is truly painful and sometimes debilitating. And you are right, a lot of doctors will not recoginize it as a condition, as they would rather say it is all in your head. I know what I feel and I know that if my mind had control over it, I would feel a hell of a lot better than I do.

[PharmaCan]

PharmaCan, thanks so much for your posts and the wonderful advice!

I think they're going to end up fusing C5 - 7 on me, after they do the anterior discectomy and also a cervical foramenotomy, which must be the part in which they widen out the path for the spinal colum and the projecting nerves through that section. They're using bone bank/donor bone on me, too. Just one less thing to have to heal from instead of also having a hip incision, too, for bone harvesting. They're using a reinforcing titanium plate to help brace the fusion.

I have more questions for you, if that's OK. Did you have to wear your cervical collar to sleep in? Was it hard to adjust to? Also, tell me about what they do to keep your esophagus open during the surgery. I've wondered about that. I know they'll have a tube in my trachea to breathe for me, but I've been wondering how they open you up from the front of your neck, get in there and do all that delicate work with retractors and still keep your esophagus open on one side and your carotid on the other. I wish I could see the whole procedure on video, to be honest. I've heard that with swelling and pain in the first two or three post-op days, swallowing can be a challenge. My surgery's not going to take 9 hours. The surgeon said it'd be about 3.

That's very reassuring to me that your symptoms were relieved so quickly and that you stopped pain meds so quickly. I don't get much help from traditional narcotic pain meds, but I do like NSAIDs such IV toradol or oral ibuprofen. Did you regain any of your lost neurological ground afterwards? I'm hoping the numbness and tingling will stop in my shoulders and that the muscle weakness will be reversible. I'd also like the fatigue to go away. The neurosurgeon said what comes back will be icing on the cake and cautioned that the surgery's intent is to stop the progression of spinal damage.

I can't tell you how much I appreciate talking to someone else who's had similar work done in a similar area. And it is so reassuring to read that muscle cramps were part of your symptoms, too. It was that symptom, along with the muscle weakness and slight motor difficulties, that I think led that one surgeon to say he thought I was at the beginnings of ALS. Fortunately two ohter surgeons concurred on the stenosis/spondylosis problem and said this can be fixed.

Birdgirl - I'm glad you find the information helpful and encouraging. I'll try to answer your questions as best I can.

Pain meds - I never took pain meds prior to the surgery. Pain meds are a short road to hell and I've been there, done that. That being said, if the surgey had not removed the pain I was prepared to move to a country where I could get heroin without serious legal ramifications because the attitude of the medical industry in this country towards pain treatment sucks big time. (In all defference to your chosen profession, it's time for the AMA to tell the gov't to get the fuck out of their ballywick.) ...but I digress.

Your esophagus - This is truly amazing, you have to see your X-rays. OK - first thing the surgeon does is stick a pin through one of your vertabra, then X-ray it. (Then, when they have you open they know which vertabra is which.) Then they put big (thick) sutures around your esophagus, 6 - 8 sutures as I recall, then they pull your esophagus to the side and secure the sutures to a holding device. This looks so cool on an X-ray, at least I thought so. Anyway, that's how they get your esophagus out of the way. I guess they have a breathing tube down the esophagus because I didn't have any kind of incision for a tracheotomy.

Swallowing, pain and swelling - I didn't have a lot of pain from the surgery. I enjoyed the push-button pain meds the first day post-op. But I soon learned that that darn button is more for a placebo affect than it is for actually dispensing medication and if I wasn't gonna get high then I couldn't see having the IV strapping me to the bed. Truly, BG, I don't remember very much pain post op. Maybe it was because so very much pain had suddenly stopped that I just didn't notice it - or maybe it just didn't hurt that much.

Swallowing - This can actually be kinda humorous, as long as you don't panic when a problem arises. I'm sure you know that swallowing is accomplished by the progressive contraction and relaxing of muscles that force the food down your throat. Well, in my case, one little section of the muscles didn't contract properly, so food would sometimes go part way down my throat and, not get stuck, but just not move. This was not something that happened every time I swallowed. Everything seemed to be working properly on either side of the problem area so most food was forced down by the food following it through the throat. When somehing did occasionally get stuck, a drink of water, or even another bite of food, would force it right down. Eventually, this went away and everything is back to normal.

Three hours for the surgery? Yeah, right. I'll put that right up there with, "Don't worry, you can't get pregnant from only having sex one time." LOL. I don't know how quickly the surgical teams move, but it has to take at least 1 1/2 hours just to get you set up and opened up. Remember the test you took where they hooked electrodes to your fingers and toes and measured nerve response? They have you hooked up to that equipment for the entire surgery, as a moniter for mistakes. It takes what, 30 - 45 minutes just to hook you up to that machine and calibrate it? Additionally, you will have two completely seperate and distinct surgical teams. An orthopaedic team and a neuro team. So ortho comes in and opens you up and moves everything out of the way to access your spine then drills out the front of your vertabra (it's now horseshoe shaped, open in front). Then the neurosurgeon has to do his/her thing then ortho has to put you all back together... Three hours? Maybe, but I doubt it. Anyway, you're asleep, what the hell do you care? LOL

The neck brace - well, there's a down side to everything and the neck brace is the really bad news in this scenario. You wear it 24/7, for months on end. You can only sleep on your back. You are going to find that you have a tendancy to want to wiggle around in the brace and push your chin down towards your chest because it feels good to strectch the muscles on the back of your neck. Don't do it!!!! I did and it moved the screws a little - which is a little more than I preferred. When your neck gets sore, take off the back of the brace, support your neck and head with the front of the brace and have your husband massage your neck gently. The less you move your neck during recovery, the more aligned everything will remain.

My surgeons tried to talk me out of having the surgery right up until the day I checked into the hospital. It's a sad fact of American medicine, due to the litigious nature of our society, that doctors are forced to avoid the discussion of the possible benefits of any proceedure, and that they must often appear to discourage having a proceedure just to cover their asses against lawsuits. But think about it, the pressure is going to be off your spinal cord. How could that do anything but help?

One last thing, and this is very important. After your brace comes off, in order to ensure that your neck will function properly in the future, you should have oral sex at least three or four times a day for a minimum of six weeks. I know this will be hard on your husband (no pun intended), but he will just have to be stoic about it.

Best of luck!!!