Chronic pain....embarrasement? WTF?

[mrdevious]

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.

[PHATTY LUMPKINS]

Dont know your story, but i have 45% disability due to back surgery. It has really been a life changing experince dramatically. for both my family and myself. If they are true freinds they know your in pain. and probably feel helpless thet they cant do something to alleviate it for you. ya think? no need to feel embarased at least your getting out and not just laying around.

[birdgirl73]

I think the embarrassment results because we're all used to putting up a front of strength and vigor to the people we know socially, Mr. D. Revealing that you're in pain makes you more vulnerable because you've revealed a chink in your "social armor" and also because you've been straightforward about your physical vulnerabilities, too. Physically you probably are weaker during the pain spells, and psychologically you've let people under the surface. The result is an inherently embarrassing situation.

At least, that is, until you realize that that honesty and vulnerability are probably in reality the greatest show of strength that someone can make. If someone's in pain or discomfort, emotionally or physically, and lets friends know that, that gives the friends the opportunity to see the real you and also come to your support (another way you're vulnerable). I'll take someone who's honest about what he's feeling any day over a faker or a person who wears a front. Makes me love them all the more because they trust me enough to reveal the truth.

I know what you mean, though. I'm waiting to be scheduled for some spinal surgery in a week or two. The problem I'm having causes muscle weakness and, at times, a strange pins-and-needles sensation in my arms and legs that gives me trouble taking regular steps. So I have a cane for when I have to walk alone. If I go to the grocery store, I try to find my way to a shopping cart quickly so I'll have a less conspicuous "walker." But parking in the special handicapped places when I'm feeling the muscle weakness and needing to walk slowly and with assistance make me feel embarrassed, too. Embarrassed and old. I've been amazed at how kind everyone is. But it's still hard to let people see!

[mrdevious]

I think the embarrassment results because we're all used to putting up a front of strength and vigor to the people we know socially, Mr. D. Revealing that you're in pain makes you more vulnerable because you've revealed a chink in your "social armor" and also because you've been straightforward about your physical vulnerabilities, too. Physically you probably are weaker during the pain spells, and psychologically you've let people under the surface. The result is an inherently embarrassing situation.

At least, that is, until you realize that that honesty and vulnerability are probably in reality the greatest show of strength that someone can make. If someone's in pain or discomfort, emotionally or physically, and lets friends know that, that gives the friends the opportunity to see the real you and also come to your support (another way you're vulnerable). I'll take someone who's honest about what he's feeling any day over a faker or a person who wears a front. Makes me love them all the more because they trust me enough to reveal the truth.

Wow, I think you just described the reasons better than I could have birdgirl. You're right when you say it does expose vulnerabilities, especially the psychological ones. I guess in that context, it's more embarrasing now because the psychological toll it's taken has only been getting worse and worse the longer I have to deal with it (over 5 years now). I'm a bit surprised I didn't think of this till you pointed it out; essentially, I'm exposing a part of my psyche that's been rubbed raw and exhausted, whereas a few years ago it was merely an injury.

I think I'm also afraid of losing my friends over this, though realisticly they've never shown any inkling that they're sick of me (but then who knows what's really inside of people). As I get more and more sick of the pain and wanting to be free of it, I can't help but feel they would get more and more sick of me and wanting to be free of my pain as well.



I know what you mean, though. I'm waiting to be scheduled for some spinal surgery in a week or two. The problem I'm having causes muscle weakness and, at times, a strange pins-and-needles sensation in my arms and legs that gives me trouble taking regular steps.

Hey, I may actually be experiencing the same thing as you in this respect. My spine's totally messed up too, though there seems to be no surgery to fix it. I don't know if this is exactly what you get, but I would get these really sharp needle pains down my arms as well as burning, and the needles seemed to hit specific points. Plus my legs get horrible burning sciatic-type pain, but I call it sciatic type pain because it actually goes equally from the front to back of my legs (god damn that kept me up all night last night).

Anyways I've tried lots of stuff for these problems, but recently the doc got me on this stuff called "Lyrica" (chemical name "Pregabalin"). It helps nerve pain and for the past 2 months I've been on it the needles have totally gone away and the burning in my legs significantly reduced. Unfortunately though my arms have been burning again and my legs have come back to it full force, so obviously it's not working so well these days. Still though, I got remarkable resutls at least for a while so you may want to check the stuff out.
Now if only I hadn't just bought a $95 month supply of the stuff again (my parents providing the money unfortunately). Seriously, drug prices piss me off, there's no assistance for someone in my moneyless possition.



So I have a cane for when I have to walk alone. If I go to the grocery store, I try to find my way to a shopping cart quickly so I'll have a less conspicuous "walker." But parking in the special handicapped places when I'm feeling the muscle weakness and needing to walk slowly and with assistance make me feel embarrassed, too. Embarrassed and old. I've been amazed at how kind everyone is. But it's still hard to let people see!

I totally know what you mean. I've considered getting a cane because often one of my legs or the other will hurt like hell and makes me limp. But it seems awkward walking with a cane when my limp clearly wouldn't be consistant, which might make people think I'm weired and faking it for some reason, especially when I only need it half the time. I'm still iffy about getting one as is, and I guess you're right that it can make one feel "old", especially when I'm only 22 years old and not ready to get old yet.

I wish you the best of luck on your back surgery. Be glad you live in a country where you can get in at a reasonable amount of time, Canada's medical system SUCKS for wait times (I waited 2 years just to get an MRI, and 2 1/2 years to fix a deviated septim). You'll make a kick-ass doctor one day, I wish you were a practitioner in my area! :)

[birdgirl73]

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!

[napolitana869]

my friends mom is in chronic pain. She never talks about it in public and tries to use her cane as little as possible. You can see it in her eyes though. I think shes ashamed of it because she cant be as strong as her family needs her to be.

[Markass]

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.


I can partially relate...I wash dishes in a restaurant right now and it doesn't require much physical work really but I do have to bend over quite a bit, if I catch a pain I usually find myself making a grunt or pausing and holding my back for a moment or so, and it makes me feel weird to see someone notice me doing so..

I do get the feeling though that some people think something like 'if you're hurting that bad then what the fuck are you doing here' but to be honest, I don't care what it is, if I'm capable of working, I'm still going to work, even if it can get uncomfortable at times.

Don't know that I've contributed anything, but don't worry man, I'm sure that people understand, especially if they're your friends. :thumbsup:

[Nor.Cal Smoker]

As someone who also suffers with chronic pain (herniated discs, bulging discs and rhuematoid arthritis) I can relate to your feelings. One of the hardest things for me was realizing that maybe my being around limited my friends activities. I always felt that maybe they would rather be out doing something else, if I weren't there to tag along. I think it is just part of the process of learning how to deal with your pain and grieve the loss of your old "able bodied self". I know that is what helped me. I was sad that I wasn't the same person I was before the pain but, what can you do besides try to learn to live with it. Your friends won't hold it against you, and you shouldn't be embarassed about something that you didn't cause or couldn't prevent.

BTW, I was 17 when I was diagnosed with the rheumatoid arthritis and it was really hard at first because all my friends were out being teenagers when I was at home feeling like an 80 y/o woman. It REALLY sucked.

Hope this helps.

[mrdevious]

As someone who also suffers with chronic pain (herniated discs, bulging discs and rhuematoid arthritis) I can relate to your feelings. One of the hardest things for me was realizing that maybe my being around limited my friends activities. I always felt that maybe they would rather be out doing something else, if I weren't there to tag along. I think it is just part of the process of learning how to deal with your pain and grieve the loss of your old "able bodied self". I know that is what helped me. I was sad that I wasn't the same person I was before the pain but, what can you do besides try to learn to live with it. Your friends won't hold it against you, and you shouldn't be embarassed about something that you didn't cause or couldn't prevent.

BTW, I was 17 when I was diagnosed with the rheumatoid arthritis and it was really hard at first because all my friends were out being teenagers when I was at home feeling like an 80 y/o woman. It REALLY sucked.

Hope this helps.

See man, you know what I'm talking about. It's such a bitch when your with friends and they're all like "hey, lets go to _____ place" and you gotta say you can't physically do it. Your right, I really do miss having my old able-bodies self, this is supposed to be the prime of my life. If it wasn't for this damn condition I'd be back in Judo or Aikido having a great time honing my skills. Instead you and I have decide if we can handle the pain of walking down the street to the corner store:mad: .
Who knows, maybe they'll actually find a cure for arthritis in a reasonable amount of time, and you won't have to put up with it the rest of your life. I know I'm routing for some kind of breakthrough in spinal damage, we must be due for some findings pretty soon.



Birdgirl, I wish you the best on your surgery. I know it's impossible not to worry, but try to keep a possitive mindset and believe you will get better after the surgery. People can talk themselves into life or death if they really believe what they think. I know you're strong-willed and smart enough to make it through this mentally and physically.

[birdgirl73]

Thanks, Mr. D. I found out this afternoon that it's going to be at least three or more weeks away. They have to allow time to deal with my heart rhythm problem first so that'll be in better shape before I have the operation. I'm sick of dealing with medical stuff. I figure my husband is sick of having to contend with it, too. I will indeed keep a positive attitude, though! I know that makes a difference.

[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 :p

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 :p

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!!!

[mrdevious]

And Pharmacan- It's amazing what you can do when you simply say "screw you!" to pain.

Man I've said that plenty of times myself, I think a lot of people have. It doesn't matter how much attitude you have or how strong you are. You can be the strongest person on Earth but when it keeps taking and taking from your mental resources for coping, they inevitably run out at some point or another. Then it keeps demanding and taking even after you have nothin left to give.... that's when you get deep depression and maybe suicide.

[PharmaCan]

.... that's when you get deep depression and maybe suicide.

Well, to each his/her own. If that's the course you want to take, so be it. If you want to be a sissy and bail, that's your decision.

If you want to listen to some advice from people who have real-life experience with your exact problem, maybe you just might learn something about coping with your problem and living a happier life.

But, if all you want to do is bellyache, don't expect a lot of sympathy because there are a lot more people a lot worse off than you who are ahead of you in the sympathy line.

If you really are feeling suicidal, get professional help immediately.

[mrdevious]

Well, to each his/her own. If that's the course you want to take, so be it. If you want to be a sissy and bail, that's your decision.

If you want to listen to some advice from people who have real-life experience with your exact problem, maybe you just might learn something about coping with your problem and living a happier life.

But, if all you want to do is bellyache, don't expect a lot of sympathy because there are a lot more people a lot worse off than you who are ahead of you in the sympathy line.

If you really are feeling suicidal, get professional help immediately.

For fuck sake man I wasn't talking about ME commiting suicide, I was just explaining the process shared by everybody with chronic pain and why some of them lose the ability to deal with it.

[birdgirl73]

Hey, PharmaCan. Thanks for the info.

Well, you know, I may not be having the same type of surgery you had because both neurosurgeons gave me the exact same approximate length of surgery: 3 hours. And I had them both explain the procedure in detail and no one went through the the anchoring/suturing of the esophagus. They said they simply intubated, opened, and retracted, emphasizing vertical instead of horizontal retraction to spare the key structures on each side. Perhaps you had a bigger, wider section of your spine worked on. It could also be my anatomy. My surgeon told me I have a long, thin neck, which is true. I also haven't had that myelogram or nerve response test you were talking about. No one's done that to me, but perhaps that's because it's earlier in the deterioration process for me or because this mostly is affecting my spinal cord rather than the emanating spinal nerves. They certainly didn't present that to me as a part of the surgery. I'll ask more questions just in case, but from everything I've read about the procedures they've said I need, 3 hours is about right. Oh! and I'm not having both an orthopedic surgeon and a neurosurgeon. Just a neurosurgeon and assistant neurosurgeon. That's how I prefer it, actually. They're perfectly qualified to do the vertebral bone work and know far more about the delicacy of the nerves and spinal cord. I'm keeping track of all the questions this discussion has raised and will be sure to ask them.

It's interesting that another difference in our experiences is that I've had just the opposite response in relation to being encouraged to have the surgery. The surgeons, two top doctors at different medical centers, have both been very keen on saying it needs to happen and needs to happen soon to spare me permanent spinal damage or paralyzing damage as a result of a fall or car accident. Unfortunately it can't happen quite as soon as we'd like because I'm having heart rhythm trouble and have to have an electrocardioversion to convert me back into normal rhythm before I can undergo the neurosurgery. And before they can cardiovert me, I have to stay on anticoagulants for three solid weeks. So the surgery's at least a month out, probably more like five weeks, which includes time to get off the anticoagulant after the cardioversion. Certainly no one has even remotely attempted to talk me out of it. Except myself, of course.

The cervical collar sounds ghastly, but I suspect I'll feel safer with it on, and I'm told people adjust to it fairly quickly. I don't have much pain now and am not on any pain meds at the moment (nor do I want to be), and I have a pretty high tolerance to post-op pain. I just hope they'll order me NSAIDs instead of opiate analgesics like the push-button MS because I simply don't have efficient opiate receptors and those meds just don't work on me. A pharmacology professor told me this year that I'm at the opposite end of the spectrum from those people who have a particular sensitivity and can easily become addicted. In my case, it's almost like resistance. Anyway, I'll take Advil or IV toradol any day! I'm glad to hear the post-op pain wasn't bad. I dread it if I end up having more trouble swallowing because I'm already having some of that. Feels more like uncoordinated swallowing, really, which I guess is what it is.

Dave'll like the end of your post. I'll be sure and tell him he has something to look forward to after I get the collar off! My dad was with me at the most recent appointment, and so I didn't get to delve into any details about restrictions on my sex life, but I know there are going to be some.

OK, I've had about enough of thinking about this for now. Need to think about something else for a while. Thanks again for all the info!

[PharmaCan]

Hey, PharmaCan. Thanks for the info.

Well, you know, I may not be having the same type of surgery you had because both neurosurgeons gave me the exact same approximate length of surgery: 3 hours. And I had them both explain the procedure in detail and no one went through the the anchoring/suturing of the esophagus. They said they simply intubated, opened, and retracted, emphasizing vertical instead of horizontal retraction to spare the key structures on each side. Perhaps you had a bigger, wider section of your spine worked on. It could also be my anatomy. My surgeon told me I have a long, thin neck, which is true. I also haven't had that myelogram or nerve response test you were talking about. No one's done that to me, but perhaps that's because it's earlier in the deterioration process for me or because this mostly is affecting my spinal cord rather than the emanating spinal nerves. They certainly didn't present that to me as a part of the surgery. I'll ask more questions just in case, but from everything I've read about the procedures they've said I need, 3 hours is about right. Oh! and I'm not having both an orthopedic surgeon and a neurosurgeon. Just a neurosurgeon and assistant neurosurgeon. That's how I prefer it, actually. They're perfectly qualified to do the vertebral bone work and know far more about the delicacy of the nerves and spinal cord. I'm keeping track of all the questions this discussion has raised and will be sure to ask them.

It's interesting that another difference in our experiences is that I've had just the opposite response in relation to being encouraged to have the surgery. The surgeons, two top doctors at different medical centers, have both been very keen on saying it needs to happen and needs to happen soon to spare me permanent spinal damage or paralyzing damage as a result of a fall or car accident. Unfortunately it can't happen quite as soon as we'd like because I'm having heart rhythm trouble and have to have an electrocardioversion to convert me back into normal rhythm before I can undergo the neurosurgery. And before they can cardiovert me, I have to stay on anticoagulants for three solid weeks. So the surgery's at least a month out, probably more like five weeks, which includes time to get off the anticoagulant after the cardioversion. Certainly no one has even remotely attempted to talk me out of it. Except myself, of course.

The cervical collar sounds ghastly, but I suspect I'll feel safer with it on, and I'm told people adjust to it fairly quickly. I don't have much pain now and am not on any pain meds at the moment (nor do I want to be), and I have a pretty high tolerance to post-op pain. I just hope they'll order me NSAIDs instead of opiate analgesics like the push-button MS because I simply don't have efficient opiate receptors and those meds just don't work on me. A pharmacology professor told me this year that I'm at the opposite end of the spectrum from those people who have a particular sensitivity and can easily become addicted. In my case, it's almost like resistance. Anyway, I'll take Advil or IV toradol any day! I'm glad to hear the post-op pain wasn't bad. I dread it if I end up having more trouble swallowing because I'm already having some of that. Feels more like uncoordinated swallowing, really, which I guess is what it is.

Dave'll like the end of your post. I'll be sure and tell him he has something to look forward to after I get the collar off! My dad was with me at the most recent appointment, and so I didn't get to delve into any details about restrictions on my sex life, but I know there are going to be some.

OK, I've had about enough of thinking about this for now. Need to think about something else for a while. Thanks again for all the info!

BG - It would not surpise me at all if, in the last ten years, the techniques have been refined to the extent that they have the surgery down to three hours.

They may have retracted my esophagus up instead of lateraly - I just assumed it was to the side because of the orientation of the x-ray when I saw it.

Since you have 5-6 weeks 'til your surgery... there's a Doc, I think he's in Arkansas, who claims to be doing these proceedures with scopes and lasers. I can find his website and give it to you if you are interested.

As far as sex, or any other activity goes, you just need to remember that you want to move your neck as little as possible. Probably the safest position for you would be on top, where you have complete control of your body movement.

[birdgirl73]

Hey, PharmaCan, thanks so much for the responses. You know, you don't actually have to requote my posts in order for me to recognize that you're responding to them since you've conveniently used BG. Just a space-saving thought!

I'll ask about the history of the length of surgery and all the other questions I have. Yes, I'd like to hear who's working on minimally invasive spinal surgery in Arkansas. I'm guessing that's in Little Rock at the medical center, but perhaps I'm wrong. The sad thing is I have network restrictions just like everyone else. Our insurance is unlikely to pay for an out-of-area hospital stay unless it'd be markedly cheaper there. I'm sure they'd balk at any extra expense involved with the newer technology, the cheap turkeys. I'd still be interested to know.

I expect they did retract your esophagus laterally. That's pretty much the only option with that structure. It's anchored at the top by the throat and mouth and at the bottom by the diaphragm and is held in place along its length by various muscles and tendons and the surrounding anatomy. There's almost no vertical movement to be had there. It executes vertical movement with peristalsis, but the tube itself doesn't have much up-and-down give.

My apologies, Mr. D, for totally hijacking your chronic pain thread, but this has been such an informative side-discussion for me. PharmaCan, they said it'll be about a three-month timeframe until full recovery and bone fusion are complete. Was that what they told you? And how long were you on driving/car-riding restrictions? I'll stop bugging you after this, I promise!

[PharmaCan]

BG - Actually I post the quotes because, if you have multiple questions, it's easier to scroll up and down in this box.

Three months is about what they originally told me. But it depends on how quickly the bones fuse, and that is going to vary from person to person.

When I had the surgery I was living on an island in Puget Sound, Washington State. It was really rural, no signal lights, light traffic, familiar roads. So I was driving the day I got out of the hospital. Driving the car isn't so much the problem as is being observant. Remember, you will be doing all of your turning with your waist and back, not your neck. In all honesty, BG, I was in such a protected environment traffic wise (the only accidents we ever had on the island were when a drunk would drive their car into a ditch), I don't really think I'm qualified to answer this question.

You're going to feel pretty fragile when you get out of the hospital. Just keep in mind that those screws CAN move and the inherent fear, mixed with a little common sense, should tell you what you can and cannot do.

[PharmaCan]

For fuck sake man I wasn't talking about ME commiting suicide, I was just explaining the process shared by everybody with chronic pain and why some of them lose the ability to deal with it.

MrD - Glad to hear that, bro. I thought you WERE talking about yourself. Suicidal thoughts aren't something to fool around with, so I hope you'll excuse my little scolding.

Live long and prosper!

[mrdevious]

Nah don't apologize birdgirl, it's all about pain so it's all relavent. This thread was for anybody to discuss their feelings on the matter. I really hope your surgery goes well for you, it'll be nice to feel a lot more normal again. I know it's been said, but make sure you let us know how it goes! And good luck.


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.

Yeah, I can't believe there are still doctors who don't believe people about Fibromyalgia. Besides, there are still many types of pain that we can't test for, and most likely many causes we have yet to understand. There's one disease I read about that causes intense pain in the head and face, so bad that it has a higher suicide rate than any other chronic-pain condition (I'm glad I don't have that). They don't even have a method for looking at soft-tissue damage either!
I don't know what causes fibromyalgia (of course), but considering that fatique and cloudy thinking tend to come with it, there are obviously consistent symptoms to this disease that's supposedly "all in your head". Again, it baffles me that they can't believe pain nerves could fire of their own accord because of a disorder in the brain.

Although, do you now know that it's not fibro and just arthritis, or do you have both? Either way, I'm sorry you have to deal with that man. There's this muscle-rub cream called "Lackota" that's supposedly from an old native american remedie, but it's supposed to work pretty well for muscle pain anywhere. I haven't tried it myself, but I think I will soon and maybe you should too.
Hot baths after an ice-pack treatment are good too, that way you can get both the inflammation and the muscle tension that comes with it.
Also try some chewable Vitamin-C at a dose of 3-8 grams a day. Experiment with doses to see what you get results from. Don't worry, the dosage has to be well into the hundreds (of grams) before it gets toxic or harmful in any way. You'll want to throw in some vitamin-E too to help with the absorbtion and staying-power of the C.
And lastly, excessive consumption of meat and refined sugars can aggrivate inflamation, so watch those. You don't need to cut them out, just don't eat a lot.

[PharmaCan]

I totally know what you mean. I've considered getting a cane because often one of my legs or the other will hurt like hell and makes me limp. But it seems awkward walking with a cane when my limp clearly wouldn't be consistant, which might make people think I'm weired and faking it for some reason, especially when I only need it half the time. I'm still iffy about getting one as is, and I guess you're right that it can make one feel "old", especially when I'm only 22 years old and not ready to get old yet.


I saw a really cool cane at Sport's Chalet a few days ago. Actually, it was supposed to be a hiking stick, but it was a cane - a really sturdy, collapsible one. It telescoped down to about 12", so it would be a lot less conspicuous to carry when you didn't need it.

[mrdevious]

I saw a really cool cane at Sport's Chalet a few days ago. Actually, it was supposed to be a hiking stick, but it was a cane - a really sturdy, collapsible one. It telescoped down to about 12", so it would be a lot less conspicuous to carry when you didn't need it.


That sounds pretty cool, I might actually check that out. Thanks man.

[onequickmove]

i can understand this very well; i deal with chronic pain but it is not outwardly obvious; people get nervous when you are in pain around them; perhaps they fear some unknown terror to come on them, maybe you don't fit the status quo; can't rock the boat