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Switch to Forum Live View Ohhh I sm so happy to have found this thread--I need some support and advice:
8 years ago  ::  Mar 30, 2010 - 8:58PM #1
Molly
Posts: 4

For over a year now, I have been seeing my pain management doctor once a month.  Last March, I hd hernaited 2 lowest lumbar discs and then they torn open and the gel like stuff leaked out of them.  I was in incredible pain.  Two MRI's, a CaT Scan, and a Discogram all confrmed torn discs.  So I have been in a LOT of pain since then


 


The only solution for me is a multi level lumbar fusion,, and I am only 41 years old.  The surgeons I talked to suggested I try to hold out as long as I van, hopefully some new technology came come along.  In the meantime, I go to my pain mgmt appt every month to get my refills of pain relief narcotics.  Now they've got me hooked.


 


Anyhow, I am visually impaired and have never been able to drive and my husband has to drive me around and we live so rural there are no busus,, no taxis, not even a store to walk to.  I hate it, but I love him.  Anywyas, the depression and anxiety about the surgery, and the pain I have been in every day is making me very mean.  Mom and my husband both say I am not my happy self, I have vchanged. I am not myself.  Well, when you are hurting vonstantly and you cvan much lke houehold tasks without kililing/hurting yourelf, it gets very deprssing.  I'm on an anti-depresssant now and I think it is helping.  But the pain meds, I need them.


 


Can anyone points me to any direction on the website where I can get someone's knowledge and wisdom about how to deal with this chronic day to day pain?  I feel like I have beered off the path of Buddhism, and I need some help..  I'm looking for some advive I guess on what to do when the pain is so bad, how to deal with those feelings, the anger, the frustration and despair.  Any links or thoughts would be so helpful and thank you all so much. 

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8 years ago  ::  Apr 03, 2010 - 8:27PM #2
Lavender
Posts: 1,069

Molly, slow down and take a deep breath. I don't know whether you trust your pain dr's opnion about surgery; I do know that back surgery is THE number 1 surgery that is grossly over-used. Talk to him in-depth about it; I know people who have had back surgery (not sure what kind) and they are actually worse afterwards. I have SI arthritis (where the back and pelvis come together; walking has helped me a great deal. Also, try meditation. If you have any hobbies, keep at them. I'm not saying you'll forget about the pain, but hobbies take your mind off it to some extent. Arthritis rubs may also give you some relief. Avoid any sudden movement, as this will jar your back and increase pain. I hope this helps. Good luck!

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8 years ago  ::  Apr 05, 2010 - 11:46AM #3
ingrid
Posts: 11

What i do to mantain my chronic pain,well i try to relax a lit big when ever i can i wish i ll be a more relaxable person, i could do it sometimes, but sometime i take deep breath, try to do some excercise durin the week, but my tensin in the head its alway there, i tood some medicene a couple of month ago but it didnt do much, so now i dont want to keep taken it, because what you drink to do better somethin is goin to damage another thing for your systmen so i pray god too that if he wants to to take this tension away..

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8 years ago  ::  Apr 05, 2010 - 12:52PM #4
Smokeejo
Posts: 2

i would think a long time before you agree to surgery. i have worked in home health care, and one of my clients had back surgery, she was unable to walk by herself after that, and her pain was much worse. have you dicussed less invasive options with your doctor? maybe you can figure something else out. i have fibromyalgia so i know what chronic pain is like, and i totally empathize with you, and your situation. hang in there.

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8 years ago  ::  Apr 06, 2010 - 1:40AM #5
karbie
Posts: 3,329

Molly,


I can understand what chronic pain can do to you--other than being out cold for surgery, I have been in pain for 25 YEARS. I have fibromyalgia, spinal stenosis, degenerative disc disease, chronic fatigue, and I've been in an osteoarthritis flare for over a year so severe I just barely got my wedding rings off before I'd have had to have them cut off. I really need to have the carpal surgery done on my left wrist since most of the time it feels like the whole arms asleep. I just hate to go through the nerve conduction tests I had before I had the right wrist done.


I'm 55. I need knee surgery, but so does  my husband, who has stuck by me. I've had surgery 13 times, although the only one relating to my back was a fusion done on the upper spine. I no longer had the top two discs--they had completely disintegrated, leaving me with just debris and a bone spur pressing on the spinal column. It would have been easier to handle if i hadn't broken my tailbone a few days before trying to get ready for the surgery.


I don't recommend having a broken tailbone and a neck brace at the same time. I went home the next day because I'd gotten through the night with so few pain shots. which had a lot more to do with my nurse not wearing a name tag or telling me her name. I only got clean sheets and a clean gown when she knocked the water pitcher over on me. she had left my call button on my roommates blood pressure machine, on the floor behind my bed, and finally tangled through my IV tubes. I was allowed morphine every hour but needed to reach her-and know her name to tell the orderly. I got him by deliberately taking my blood oxygen sensor off my finger so the alarm would go off.


Has your doctor tried doing steroid nerve blocks at all? they can do those every 6 months and they do lower pain and help movement ease up.  Does he have you on amy anti-inflamatory drugs like naproxen? My pain doctor is nationally accreditted;recently voted one of the 10 best in the country. I had him choose my neurosurgeon for me. The problem with back surgery is that it may not improve things.


I was 2 when my mother had spinal fusion on the lower spine, and she was in a body cast for 6 months afterwards. She'd reached a point where she had to lift one leg in and out of the car and they talked about doing more back surgery. After they told her they couldn't promise her any improvement but would only be able to do one operation on her back, she decided not to. When she had her surgery done, it was because she had an 80% chance of ending up in a wheelchair for the rest of her life.


I've known for years that i have sleep apnea, but when I was scheduled to be tested, first the doctor bumped me, then my son's health took a nose dive and I just didn't have time. but a neurologist told me that my fibromyalgia pain--any of my pain--was going to be 10 x worse with sleep apnea.


As to the being an addict--that's sort of a yes/no. If all the medication is doing is helping you to barely hold  together, you aren't an addict; going back to your doctor to get the pain down to a barely manageble level isn't the same thing. Have they tried you on fentyl patches yet? I've been on them for several years;it's for patients who are tolerant to opiate drugs and who can't adequately manage their pain with just pills. If we lose our insurnace, I'll lose them. You change them every 72 hours, so your body doesn't completely run out of painkiller. These are also used for patients with cancer. Pills that reduce muscle spasms will help.


Is there anywhere near you where you can go float--it takes pressure off your body, same for whirlpools. I sat in a whirlpool bathtub for an hour the night before my son's wedding.


If you are like me and can't afford to get a memory foam bed, even memory foam mattress toppers will give you a lot of relief and a chance at sleep. Getting either cotton jersey sheets or sheets with a high thread count will make a difference. Overstock.com frequently has sales and lower shipping costs than most sites. i wouldn't jump into surgery without trying some of these first.


On the days that I really want to bite someone's head off because of the pain, I will go a debate site here or on Yahoo answers and yank people's chains. the people on the support groups here are caring, supportive and understand when you need to vent. On the other hand, there's one member who is a real asshat--so much so that I've blocked him. doesn't mean I don't make comments on his posts if someone quotes them and I see them that way--I've baited him and even posed questions knowing that I won't see his answers and that nothing ticks him off as much as being ignored.


should have done it sooner...guy writes pages and pages, repeating himself  and using "sigh' or commenting on other's posts sentence by sentence and is smug without seeing  how any person could fail to agree with him.


It's not a particularly admirable way to cope, but it gives me a chance to bring out my bitchy side without taking it out on someone who doesn't deserve it like my son or husband. Besides, it makes me laugh and this guy is so oblivious to the concept there could possibly be anyone in the Universe as intelligent as he deems himself I certainly don't need to worry about hurting his ego.


If you can meditate or do just relaxation breathing , it will help. the warmer weather and flowers will help me. So does music--I have an odd mix of favorites, and I read a lot. So many people find their way to beliefnet when they need it most that we all really seem led here. There are good people on the Depression board--no limit to where you go around here. One of our lines there is that we are glad when someone finds us and sorry that they need to. I'm sorry you are in so much pain.


there is one thing--pain--even chronic pain--can go in remission to lower levels and I wish you and the others here a remission or at least reduction in your pain very soon.


 

"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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8 years ago  ::  Apr 06, 2010 - 9:47AM #6
natureboy_the0
Posts: 1,742

Molly,


Sometimes things like that is to get our attention and turn us back to our hearts [spirit it's usually called].  If that is your case, send out the prayer that if this is the way of calling you to the spirit ask it to show you by correcting this condition.  DO BE SPECIFIC because generalities gets you nothing.   All who are called to spirit must learn how spirit calls us, and there are as many different ways as there personalities on earth, so few times is any two people be called the same way. 


In my 65 years, I have had severe pains since childhood from migraines, toothaches and ear aches to many other lesser types.   During my 33 & 1/2 years as a nomad I have sometimes asked for healing, which I have obtained, and other times only to lessen it to my ability to withstand it, which I got.  Because you put it on here, it might be a calling so do as I have suggested and see what happens.

Are you questioning your beliefs, ask I AM THAT I AM to clarify them!
Elijah Alfred "NatureBoy" Alexander, Jr. presenting SEEDS OF LIFE
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8 years ago  ::  Apr 06, 2010 - 10:08PM #7
karbie
Posts: 3,329

Dear Molly,


Sorry for the long rant--very bad night. One thing that will be coming up soon that can help is eating cherries. Any fruit that is high in antioxidents like cherries, blueberries, cranberries, and pomegranates will lesson pain and increase mobility. It works in juice; with cherries it can be juice, dried, sweet, sour--a friend told us and I didn't believe it wntil I tried it. The cherries had me go from needing my cane inside the house to being able to do stairs without the cane. The Native Americans used them to treat arthritis and they will be coming in to season soon. On the depression forum there is also a lot of nutrition advice that can get you feeling better.


Good luck, honey.

"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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8 years ago  ::  Apr 08, 2010 - 10:53AM #8
June20-04
Posts: 13

Molly,


I have servere arthritis in my spine as well as elsewhere.  A year and a half, I had both my ankles fused at on joint and it was like a miracle---no pain.  But my back...was another issue.  My doctor also told me I needed spinal fusion of 4 vertebrea and they could make no guarentees (unlike the ankle doctor who told me I would be absolutely pain free and able to walk).  I have no disks left in my lower spine.  I just couldn't make myself sign up for fusion.  Several months later (and inable to walk or stand more than 15 mins.) I was given the name of a neurosurgeon in Lebanon, NH. who had an amazing reputation.  I went to see her and she told me that fusion was rediculous at this point (I'm 54).  That my spine is fusing itself, let it be.  BUT, she said she could go in and clean out all the boney overgrown, etc. that is collapsing on my nerves causing the pain.  Same day surgery, only PT is to walk.  So I signed up for the surgery!  It took 1-1/2 hours.  She told me the nerve was extreemly angry (irritated) and she felt this would bring much relief.  The closed my 2 inch incision  with super glue, and I walked out of the hospital about 4 hours later and went home.  It has been one week today.  I have been walking my dog about 1/2 mile a day for the past 3 days, with almost no pain!  I only take ibuprofen a couple times a day.  The doctor said it would take time for the nerve to heal so I would be sore and experience pain in the same places for a bit...but then, one day, it'll be gone.  I'm so hopeful that soon I will be pain free and can have a real life!  If only someone had told me about this doctor years ago!!!  I thank God for sending her into my life!  I truly believe you need to get at least a second opinion from a neurosurgeon.  Don't jump into anything you're not comfortable with.  There are people out there who can help you!  Ask God for help, be patient for His answer, trust Him, HE WILL ANSWER YOU.  It may not be the answer you are thinking of, but HE will give you the correct answer.  


 


I know the horrible pain you are experiencing.  I endured it for years---and lost out on so much of life.  Don't give up!!!  And look for less drastic measures.  They are out there!  Better to start small and save fusion for the last resort.  The first doctor was wrong.  My brother who is a rehab specialist said that doctors who work out of huge hospitals do extreme proceedures for the $$ and because they know they can do it.  The hospital where my neurosurgeon works out of is small and they are known for approaching the human body as "someone's body" not a paycheck. 


 


I wish you the best of luck.  Know you are not alone in your pain...


Nancy

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8 years ago  ::  Apr 08, 2010 - 11:25AM #9
RondaKay
Posts: 1

First I don't know if you know about a device that they implant inside of you that reroutes the pain, but it may help. Second I have lived with chronic pain for 15 years and the best advice I can give is prayer and when your are asked how you are doing instead of telling people how you really feel, tell them you are in pain but you are blessed. The more you say this the more you feel it. When you really sit and think about it at least you can , some people are not able to feel anything. I thank God for my pain and being able to feel it, at least I am not paralyzed. The more you say the more it helps, and the better your mood is. Hope this helps.

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8 years ago  ::  Apr 10, 2010 - 1:56AM #10
Willie Mae
Posts: 1

I understand your pain as I've recently had 2 back surgeries - spinal stenosis, degenerative spine, my surgery L2 - L5, S1 and S2. The first surgery my entire back was caged with rods and screws, the bones in the middle did not heal and pushed out the screws. My second surgery consisted of reconstruction with fusing and rods, it still haven't worked. Over the past 15 months I have not been unable to stand on my own or with my walker for more than 40 seconds without excruciating pain daily. On top of my back pain; I deal with Rheumatoid Arthritis, Pulmunary Hypertension, Cancer, COPD which mean that 24/7 I am in pain.  I choose to be in control of pain by staying active doing anything of interest and having great faith after coming back from the brink twice in the last 71/2 months so I believe I was meant to do something with my life. By keeping busing doing crafts and things that require my full attention the pain goes to the back burner. There are some days when it is just necessary to be highly medicated but I keep it monitored. Keep the faith and look for other way to focus your attention, IT WILL WORK.


One Who Knows!!!!!!!

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