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| | From:  Lady_Vayne (Original Message) | Sent: 10/27/2008 9:25 PM |
Hello, I'm C.J. It's actually my husband with the chronic pain issue but I'm more talkative then he is. He's got 2 collapsed discs and a sciatizied vertebrae. The bulge goes into his spine on both so can't be operated on without major risk of paralysis. He' s been on pain killers for most of 5 years (on all kinds) and he's gone through chiro, decompression, and he's been told he'll never get better. I have a hard time believing that considering he's 33. He is in pain everyday and everything hurts. He can't bend down, stand or sit for too long. At least we have a GP that will work with us, even if it's not working to well. He's still trying. ANYONE with ideas are welcome! Thanks guys! This forum is great.
C.J. |
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| | | From: Dan | Sent: 10/28/2008 4:47 AM |
Hi, C.J. Welcome to the group. We've got one other wife with a husband that's too shy or what ever to post. So she posts for him. You and Katie probably need to communicate. I think her husband is about the same age as your husband. C.J., one of the hardsest things to get to is the understanding that yes, chronic pain is just that, chronic. And it's not often that people get better. I've lived with mine since age 42 or so, and I just turned 60. And I know I'll live with it for the rest of my life. But it doesn't depress me. It's just the way life is. God bless you for staying with your husband. Too many of our spouses have left us, citing all sorts of reasons, but the bottom line being that they just are tired of us being sick all the time. You're one of those rare people who took her vows seriously, and I honor you for that. Ideas... Well, here goes. First, he probably needs to see a real pain doctor. Generally they are anestheseologists who have a specialization in pain management. Secondly, he needs a strategy going in. We've developed a strategy that works, and have sort of formalized it. It's in this link... << >> Hmmm, well there's a way to make that link look better, but I seem to have lost the knack. LOL No matter. Just click on it and it will take you to the document that tells you about the strategy. You can also find a sample pain diary over on the left, as well as some graphs and charts of a pain diary. Welcome again. Let us know if you have any questions. Hugs and lots of love, Dan |
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Hi C.J. Welcome to our group. We're almost like a family to each other in some ways. We know we can come here and share what's on our minds and our hearts if we need someone. We can vent, we can cry. Many of us have known each other for many years as well. Like Dan, I honor and respect you for staying with your husband through his chronic pain condition. I've been fortunate in that area as well, my husband has stayed with me, so far.... I suppose he could get sick of me any day and leave, who knows. Lord knows I give him plenty of reasons to. LOL I hope that eventually your husband will feel like joining us here on the board with you. He might feel better to talk with others going through the same thing he is. There is something to knowing that you aren't going through this alone, I don't know why, but there is. Just knowing that someone else knows exactly how you feel makes a difference to someone in pain. It's weird. Anyway, it's getting pretty late but I wanted to stop in and welcome you. I look forward to getting to know you better and hopefully your husband too. I'm sorry that he's suffering chronic pain and that's what brought you here though. But I do hope that we can give you both support and comfort. debra/aka tomcat |
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| | | From: Hannah. | Sent: 10/28/2008 6:29 AM |
Welcome CJ
Dan is right, your husband needs to see a pain doctor.
Even if his back will never be better, he doesn't have to live with so much pain.
I am not totally sure what your husband's condition is. I goggled sciatizied vertebrae and didn't get anything. Is it sciatica?
If you care to share the general area you live, we can look for some pain clinics for you. I met a pain doc at the hospital, who happened to be on call when I went in one night, and he gave me his card, which I showed my GP. The GP then made me an appointment with the pain clinic.
It means the world, as Dan said, to have your spouse be supportive and understanding.
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| | | From: CyndyK2 | Sent: 10/28/2008 7:35 AM |
Hi, C.J., and welcome to the family. : ) I don't suppose you live in or near Florida? One of our members used to be confined to a wheelchair with severe spinal pain and weakness in his legs; he had surgery performed in Miami Beach a year or two ago and is now walking, nearly pain-free. We all consider him a miracle. He has posted the contact information for his surgeon in a post entitled "A strong recommendation for a spinal surgeon" on this board; you can find it by scrolling down a week or so. I bumped it up recently for someone else. The surgeon's name is Dr. Hyde, I think; perhaps his office could point your husband to someone closer to you that could help him. I hope so.
Cyndy |
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| | | From: Litchuk | Sent: 10/28/2008 1:20 PM |
Hi C.J, Im James over the pond in the UK but i was 32 when i had my big accedent and there are a few others like Jen here who is even younger. Chronic pain is like nothing else it can eat you up if your not very carefull it sounds like your doing the right thing. A supportive partner and good medical help is the most important! Keep a pain dairy and get a good pain doctor other things that might help is heat,cold a tens machine apart from that you have to re-learn everything and not worry if you can not do something, when i was firt disabled i drove my self nutz because i felt less than a man because i could not do the lifting,cook,clean and whould hurt my self pushing my self until you reach acceptnce with the proplem its hard. Good advice is pacing everything if you can not cut the yards grass all in one do it in two cuts or four or just pay a child to do it. If you like to cook get a purching stool in the kitching so your not standing i know it sound stupid but when i clean veg i dont do it at the sink i sit on the floor or purch on a stool. there are lot's of solutiuons the trick is finding them.. Oh last get your husband here we are her for both of you to be supportive and if it's only to vent we wont mind we all do it so welcome to you both. -James |
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Welcome CJ...and welcome to your hubby, too! Hopefully, one day soon, he will pop in and read these posts....get to know us, and soon be posting himself!! We don't bite...really!!!! And we do have a few men that are members here....pain has no favorites...both men and women are affected. Sometimes men are a wee bit too 'leery' of saying that they 'hurt' or are in pain all the time. But, believe me, it hits them as hard as it hits us. The hardest thing with chronic pain is to learn to 'accept' it. I've had pain in my life since I was 17....when I had my first spinal surgery. Since then I've had 8 more in the lumbar area, 3 in the cervical neck area....and numerous other surgeries, too....approximately 50!! You can read about me under "meet the managers", under "Dee". The most important thing is to find a good pain management doctor, if your husband does not have one already. They are the best when it comes to treating chronic pain....not surgery. Sure, they may recommend surgery sometimes....but they do procedures that sometimes will help....or tests that may help in diagnosing and/or treating the pain. Thank you for being so supportive to your husband...I know it means a lot to him. I have a very supportive hubby...he's stayed with me through all of my surgeries for over 41 years now....he knew that I had spinal problems before we got married, and still married me....lol. So many people have 'lost' their spouses...most times they find they don't 'want' to be with someone who can't do the 'normal' things in life; can't go out to dinner, go on vacations, etc. It's hard...but IF you love someone, you WANT to be with them....and help them through the bad days. The vows of marriage are 'in sickness and in health' and some people just don't get that....sadly. I'm glad your hubby has you there for him though. Anyway, glad you joined...and IF there is anything we can help you with, just let us know. Take care...and hope that his pain eases up for him....soon. Hugz, Dee aka..."NatzoSwift" Asst. Mgr. |
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| | | From: Jen, PT | Sent: 10/28/2008 4:38 PM |
Glad to see you in here supporting your husband. As the others have mentioned, it really means a lot to have a supportive spouse! I'm getting married in less than 4 weeks, and the vows he has written for me are well...just tear jerking. I'm Jen, one of the assistant managers. I'm 24 years old, and have had chronic pain for 3 years now. (You can read about me under "meet Jen"). I've already been told numerous times that due to the bony abnormalities in my spine, that I will have pain for the rest of my life. My hip is not much better! The key that I unfortunately had to learn early on is how to manage the pain. I gave up rather quickly on trying to find a quick fix or miracle cure. I am diligent with my physical therapy, and I went to an excellent pain management program for 1 year (I live in California, if that helps you/your husband). I've tried many different injections and procedures, and even surgery on my hip last year. I'm still in pain, but the message here is to take it one day at a time. We understand here what it means to live each day in pain, but we can't let us wear it down. The pain is only one part of who we are. We still need love and affection, we need everything that all people need. There are many activities that people with chronic pain give up over the years, and it's quite sad. I've given up a few of my favorites, like ice hockey, snowboarding, and any impact (running, jumping), etc. However, I have found other activities to replace the ones I have lost. I go for a 30 minute walk most days, and I'm in the swimming pool for at least an hour most days as well. I guess what I'm trying to say is, don't give up hope! I DO hope that your husband will pop in to say hello, and read our messages. We write from the heart, and are here to help when he's ready to join us. Of course in the meantime, we can try to help you answer any questions or concerns you/he may have, or just a good ol' ear to listen to! Welcome again! |
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Hi CJ, I am Katie and like Dan said, my husband has lot's of health issues. Lot's of ppl can be caregivers but being a loving one and having a really happy life despite what is thrown at you can certainly be done. We have been together for 24 years and it is wonderful!! I will post more later but wanted to welcome you. I am off to my mothers house for her 80th birthday today. Her real party is Sunday but today is her true birthday. See you soon. ps Craig loves you Dan, he is 47 now. Time flies doesn't it!!! Hugs Katie |
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You guys all seem so wonderful. I'll start to answer some of what I can remember. We live in Calgary, Alberta. Sciatized vertebrae means 2 of his vertebrae in his lower lumbar have fused themselves together and give him vicious nerve pain. It can get pretty intense, and it's bad enough that he has NO feeling down his left leg so he has to do visual checks on himself on a daily basis. He's sprained his ankle and not known it. I looked down and went "why is it swollen??" To the hospital we went yet again to make sure there was no fracture. They're used to us now. To a great degree, neither of us have let this dampen our lives, we're both training in Kung Fu, it's been modified for him our instructors work with him to make sure he can train without damaging himself. It's great, we also do some moderate hiking and have a hobby called geocaching that allows him to drive while I run around. He still causes him a great deal of pain though but keeps him moving. This is in the last couple of years though, for 3 years, it nearly did him in. When we lived on Vancouver Island, there were almost no services for him (4 hour drive to see a doctor for 15 min) and it get very depressing. That's why we're here now. He used to only be able to walk 100 m and it would do him in for 2 days. Now, he can walk 20 km on a good day (easy terrain) and THAT will do him in for 2 days. Still, the pain whether he's doing nothing or doing everything is always there, it is always a consideration on what we do, where we go, I know you all understand the, I don't know if that is the movie we want to see... how long is it? issue.
We are only now looking for a pain doctor, 14 month wait for the pain clinic so that's a little depressing. The thing about the injections is they're scary, I have bersitis in my hips so I had the (mis)advantage of getting them first. There is no way I'd want him to go through that in his back, especially with no guarantee to how long they'll last. Surgery isn't even an option, 50% chance of paralysis.
We've been together for 10 years, I'm not going anywhere now, this gets frustrating for both of us, but get angry, upset, sad is normal and we both know it. We deal with it, and we get better emotionally and move on. I know it's always there, I know he's always in pain, and I know I'll not go anywhere because of it. I've been here this long, not going anywhere now. I love him and this is a part of him. He's 33 and I'm 31 and with or without the chronic back pain, he's all mine. |
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| | | From: CyndyK2 | Sent: 10/28/2008 11:32 PM |
Well, Dr. Hyde may not know anyone in Canada, but Hannah recently posted a list of Canadian Pain Clinics not too far down on this page, so that might help you out. : ) Most of our members are in the USA, so having Hannah in Canada is a boon to our Canadian members! Don't write off all surgical procedures just yet; the AXIALIF procedure Murray had just might be what your husband needs; he should check into it. If surgery isn't an option, a morphine pump might be what he needs. I don't blame you for not wanting to go the injection route; I wouldn't, either.
Cyndy |
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| | | From: Jen, PT | Sent: 10/29/2008 7:19 AM |
"Sciatizied" isn't a word, I'm afraid. Perhaps you mean sacralized? A sacralization is when the top of the sacrum fuses itself to the last lumbar vertebrae, aka L5. Turns out, I have this very condition as well, and it sucks...I've also been told no surgery. And if it makes your husband have any comfort, I had the whole numbness tingling down my legs on and off for about 2 years, and then it just gradually reduced and then just disappeared. I think its been many months (knock on wood) since I've had any of the leg symptoms. I didn't have any collapsed discs, however...which may be a large contributer to his leg symptoms. I had 5 bulging discs in my low back, but I spent many a day in physical therapy. My last MRI of my spine showed that they all resolved. My standing tolerance is pathetic (somewhere around 3 minutes before the pain starts to stab at me, and about 10 before I curl up into a ball)...not good for someone who has to stand at patient's bedsides all day! LOL I've had the injections in my back, but only temporary relief. I have injections in my hip, too...also with temporary relief. But honestly to compare the two??? I'd take a stab in the back over the hip any day, and that's from personal experience! That 20km of walking sounds mighty impressive! I'm sure there's many members who would die for that kind of distance mobility :). I hope he enjoys his new freedom! |
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| | | From: Hannah. | Sent: 10/29/2008 8:00 AM |
I had some nerve block injections in the sciatic area a year or so ago when I was in moderate leg pain from sciatica, and they did help stop the spasms in my leg. I still had to take pain pills and muscle relaxants, but wasn't in as much agony. The pain doc did say they help some but not others, so Jen and I have been lucky compared to many others.
CJ, were the shots too painful, or did your pain worsen when you had injections?
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With him, It's an L4, L5 fusion (I saw it, it's bad, I go to all the appointments with him) and it was a doctor on Vancouver Island that told us the word so it could be sacralized. As for the walking 20 km, for him, it's a lot of mind over body work, it's not easy and it takes a lot of time and resting, it's not an all at once jaunt. Anyone who comes with us also has to understand that, more then once we got left behind even after I explained the situation. It's okay though, to me, those people chose not to understand. They are also people I don't hike with more then once. I understand what takes one person 1 hour can take us 3. We still get to see something pretty. Alls I gotta say is Yay Parks Canada, they tend to put benches in the oddest places.
Jen, as for your standing tolerance, I understand that all to well, he cannot stand in one place for too long at all. Moving is far better. Anything that involves staying motionless, forget it. That'll do him in almost faster then a fall. At least a fall is quick.
Hannah, the shots were painful, when I got them, I couldn't stand or walk for 2 days, for a month's worth of almost pain free, it wasn't worth it. I've done them twice, it's not something I'll do again and he bursitis isn't that bad, it just gets annoying with the whether change AND I would NEVER suggest it with someone with back problems. I just got it into my hips, I could never imagine it into the back.
And you guys are all so great, I'm so happy I've found this place. It's very welcoming. Thank you. |
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| | | From: Hannah. | Sent: 10/29/2008 11:16 PM |
I guess I was very lucky. I know Hissy and others have had very painful injections. There are differant sorts, and I think I lucked out. Probably you guys had much deeper ones. I have heard steroid injections are painful and I am chicken, so much so I have been letting my tendonitis clear up without any. Just when I decided to go back to the doc, it has become a lot better.. This week I can bend my thumb, have not been able to do that in months. Patience is a virture! I hope your husband will get into a pain doc soon. I used to live in Calgary, for a short time, and my mom still does. Also in Vancouver, but that was way back in 1975. |
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Hi CJ.... welcome to the family.... I'm Carol and I live in Winnipeg... the closest to you I think....LOL... being a true Canadian I always post in red....LOL... I'm sorry that circumstances brought you here but glad to see you |
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