Hello everyone. This is my first posting:). I will be having my morphine pump trial on 2/13/08. I am quite nervous about it. Reading all of these postings has been very informative so thank you for contributing!
I have degenerative disc disease. The first rupture occurred in 2000 and the surgery to repair it was very successful. I think that it was caused by my oldest son jumping onto my back and his knee ramming into the L4-L5 area.
Two years later, the same disc ruptured again for no apparent reason. I got out of bed one morning and found myself with the same excruciating pain as before. Doctors told me that it had not ruptured by I KNEW that it had. After begging for an MRI, my hunch was proven correct. A second surgery was performed which was very difficult. The scar tissue that built up from the first surgery was wrapped around the S1 nerve root and my surgeon told me that the nerve membrane can tear in one of ten surgeries. Mine was the one in ten. I leaked spinal fluid and the nerve membrane had to be patched. Luckily, I avoided a cerebral headache. There was severe trauma to the nerve. I have slight atrophy of my right calf muscle, numbness in both lower legs and feet, and obvious pain in my low back, hips, legs, and feet, but it alternates from left to right each day. There is no rhyme nor reason for this. One day, it will be the right side that kills me, and then the next day, it will be the left. Thank God it's not both at the same time or I think that I would die!! No doctor has ever been able to explain this to me. I had been seeing pain specialist after pain specialist and have been on every narcotic out there. My vertebra had become so unstable that by April of 2007, I had a spinal fusion done. Two rods and four screws are now in place, with a cylinder in place of what was left of my disc. I knew going into to this surgery that my pain might not get any better but at least my back would be stable and it wouldn't get any worse. Like many of you though, there is NEVER a moment, never an hour, never a day, that I don't have pain.
In regard to medications, I am on 6omg of Kadian per day and 200mg of Topamax per day to ease the pain. I can still work but some days are much harder than others. I suffer horrible constipation from the Kadian and that's the primary reason why I am considering the pump. I am so used to living with the pain that I have accepted it. The risks involved with the pump really scare me but if I can have it and not have to depend on taking chronic laxatives and fiber supplements then I might consider it if the trial goes well. I have a feeling that if the trial goes well, then I may think why I ever hesitated doing this. I can control putting a pill in my mouth. I can't control the pump in my body should it come loose. That's the biggest concern I have. My doctor has not talked with me very much about it at all. He just told me that I am a candidate, handed me a video to watch and walked out the door.
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... You have had much more experience in your profession and have seen uncaring doctors. It's a shame that is the case and it's scary too!! Unfortunately, there are naive patients who don't have the wisdom and insight to know the difference and these are the patients who get the poor care. Thanks for clarifying your statement. I am sure that others reading it appreciate that too.
!!!! Sorry....I don't know how else to describe such a delicate subject. I am curious as to whether not you have any problems with constipation with your pump. That is my biggest problem with my kadian that I am on, but I think that the clonidine may also be my problem. I will continue to stay off of it to see how I do. In the meantime, I will use black cohosh for the hot flashes. Read my other posts and get back with me. I am so glad that the pump works for you. My doctor increased my daytime dose of Kadian to 90mg and kept the nightime dose at 60mg. I tried to do without my Topamax as well but that was a no-no!!! I have to have that one. It really helps with nerve pain. I take the maximum dose of it...200mg, two times per day. I also have migraines so it is supposed to help prevent them as well.
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PLEASE don't feel sad for me! There are so many others in so much more bad shape than me...just like you. Here I only have one disc to deal with and you have 2 in your neck and 4 in your lower back!!! You definitely need to go to a different doctor!!! I also got a second opinion in regard to the spinal fusion. That second opinion wanted to do it the old fashion way: taking the bone from my hip and wearing a brace for 3 months. My doctor here in WV does it the new way: using titatium rods and screws because I would have had more pain with my hip taking bone from that area. He told me that there would be a risk of the fusion not taking hold if I did it that way as well.
I can't imagine the pain you are dealing with. Surely you will find the right doctor soon. Good luck and you will be in my thoughts and prayers as well.
Jo
That is so unfair that your family doesn't understand what you are going through. At least you have this forum to vent and get support. I have tremendous support from my husband which I will forever be greatful. With even that though, he will never fully understand what I go through each day. I know that my body must have this medication. Yours needs it too and how dare your mother call your doctor and say that you don't need it. I don't mean to sound disrespectful but until someone else spends a day in our shoes, they don't have the right to do something like that.
No, I am not on any thyroid medication thank goodness.
I knew that I had a bulging disc and I think that my initial injury came from horse playing with my boys. The oldest's one's knee rammed into my back. You have so much more to deal with than me. That's why I chose my name to be "SoBlest" (so blessed)... ( I have messed something up though because my real first name is appearing, which is "Jo". I have to find out how to fix that!!)
Anyway, let me know when you find a new doctor and hopefully you will get on the right track Cynthia. I thought of you in church today and kept you close in my prayers
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SoBlest in WV
Hello Cynthia
It's nice to meet you and welcome to the CpConnection.
sounds like you have a great deal to overcome with pain too. I sure hope your doc did not listen to your mom. Boy, I would sure be upset!
Take Care, hope to see you around
Betty
Cynthia
Well, I'm sure your anger has probably subsided by now. Our families just dont understand whats going on and some deal with it worse then others.
I hope your able to find a new PM doc that suits your needs and you feel comfortable and listened to. It's really tough trying to find a new doc sometimes and hopefully you'll not have to see a dozen before you find the right one.
Take Care and good to see you again today
Betty
Was wanting to know how the pain pump went
Hi Sandi,
Thank you for asking. I guess that I should update my post. I never got the morphine pump. After talking to several doctors, I decided that it was NOT the best thing for me. The goal for me was to relieve constipation issues and hopefully improve my pain relief, but I was informed that these goals could not be obtained. Since then, I have been to Cleveland Clinic, and University of Virginia. Neither facility said that nothing more could be done surgically. I had also asked them about Laser Spine Institute and was warned NOT to go there. I had also received word from someone through Chronic Pain Connection that he was literally butchered by a doctor at LSI. What a shame that something like that could happen.
I am just extremely thankful for the medications that I have, albeit I am NOT pain free and never will be. I can still work, but have to come home and go to bed for about an hour to recover everyday. Unless you have gone through something like this, NO ONE knows what it is like to live with severe chronic pain. It touches every aspect of your life. I get really depressed about it sometimes but then somehow find the inner strength within me through the grace of God to pick myself up and start another day. What choice do I have? I can't just waist away, although sometimes I want to when I am alone during my deepest moments of excrutiating pain. One of these days when I meet my Maker, I will receive a wonderful new body, free of pain. What a glorious day that will be! Until then, I take one month, one week, one day, one hour at a time, and just do what I can. Hey! I even managed to take my dog for a walk: almost a mile last night...or I guess my dog walked me:)
Take care and hope you are encouraged by my story. Share yours if you like.
Thanks, I am suppose to go to Lexington, Ky to talk to a dr about the pain pump. I have only known one person who had one and even with the pump she was popping every pill she could find, and on some I have read about it doesn't seem to help that great. Actually, they have wanted me to have one for about 11 years. My story I had fallen at a bowling alley and hurt my spine and back, also broke my tailbone at the, but did not know it for some time. Later I was seeing a chriopractor (spelling) and he thought he saw a tumor on my pelvis. So that led to more testing and then a failed back surgery. It was not a tumor. But ended up have spinal leakage for nine months and staph injection, sent home to die, but God just was not finished with me yet. Moving on, ended up having a motorcycle wreck with my hubby driving was thrown up about 20 feet, that led to a back fusion. About 2 months into the fusion I started to experience a burning pain like a UTI, but not a UTI. Pail levels runs around a 100+ most days. Pain pills help some, but only a tad of relief. I have a entrapped nerve in my pelvic that called PNE(Purdendal Nerve Entrapment) and affects all the nerves to the body fuctions. It is not a fun thing. Anyway, have been going to MN for treatment, but stopped as he was not the dr I wanted. Was scheduled to go see a DR in AZ about the surgery early Sept. Went to another DR and she says I have a blood clot in the leg, that cancelled the trip to AZ, now don't go until March. Was not a blood clot. (don't know what that Dr was thinking, she was flaky). Anyway to continue. Had a treatment here (Newburgh, In) and the DR said I have a large spur on my tail Bone, now wondering if it could be hitting a nerve causing the burning pain. Waiting to see my family doctor to see the MRI that was taken in Jan to see if it was on that. (so thought maybe that was why I needed to cancel my appointment to AZ) have to wait and see. The pain Dr that found it said they could not remove it, but I have found that they possibly can, will have to see the surgeon about it. That would be great cause the PNE surgery is really not that great possible 65% chance of any relief. So my family dr says he thinks I should consider the pain pump. Now they can use something called snail venom which is not a narcotic. I talk to a gal in SC that uses it. But really don't want the pump. After reading some on this site really makes me scared to do it. When I go to the Pain Dr in Lexington in OCT, I want him to tell me all the bad things. I don't really know what to do. The pain is not any fun as I am sure you know. I have been on disability since 1999, and it has been really difficult to be alone. We had a Cocker Spaniel for the last 7 1/2 years, but lost her to kidney failure in May. She was very loved and missed very badly. We now have a 4 1/2 month old Cocker and she keeps us busy. I have had this pain going on 5 years. If you ever had an UTI you know what the burning pain can feel like and this just never goes away. Sometime I get a little relief. I use Vit D which is suppose to help nerve pain and I think it does. I take around 1500 I don't know if that is too much or not. I have had a lot of surgeries in my life and have had internal bleeding twice so there is a lot of meds I cannot take. Also, my body reacts bad to some things they try me on, I get like a zombie. I can take narcotic without much problem except as you said the constipation. Why were you not able to get the pump? I have traveled a lot of places to find help: Indianapolis, Nashville, Tn., Al., MN., KY several doctors in all areas. My family doctor is very understanding about my pain. But he does not want to give me any higher dosage than I am on. The problem is my body tolerates pain meds and it takes a lot to knock me out even in surgery. People have a hard time understanding pain they can't see. Now people tell me they can see it in my eyes, even people have stopped me at the store to ask if I am okay. I try not to show the pain, but sometimes I guess I do. So did you get any relief for the constipation, I can't use fiber as it makes it worse. So I am very irregular and go several days to 2 weeks with out going. I was on Lyrica it helped for about 9 months, but gained a lot of weight. Did not like that. Now have lost the weight. It makes you gain like 20 pounds for most people. I wish there was an answer to pain. My oldest son has cancer for a year and half now and he is in so much pain from the chemo and the cancer. Hopefully he will be in remission soon since the new chemo has brought his levels down, but they want to do another stem cell transplant if they can find a match, it is his only real chance of survival. DAMN "C" My first hubby had cancer too, haven't yet figured out why this happened to my son, feel like my kids have been through enough. None of his brother's were a match, he has 3 brothers. His first stem cell transplant was the biggie and they used his cells, but this one he has to have a donor. I just keep PRAYING for him. But no matter what causes our pain, we each have our own pain. Do you take pain pills? Well, it seems a lot of people have to endure pain and yes all we can do is try to press on and do the best we can. Keep the faith. My first hubby was healed no doubt cause he was suppose to die in 6 months. That was 1979, he is still alive and just went through prostrate cancer and doing fine, but turned against God and left me and the kids in 83. I am remarried now for 13 1/2 years. It is hard to be a single mom, but I raised my kids so it can be done. Hopefully you have family to help you out.
Take care. P.S. Sorry about the spelling. My fingers goes faster then my thinking.
When I read a story like yours, it puts me in my place. I know my pain is bad, but I always know that others have it so much worse than me. You are one of those examples. Not only do you have your own pain to deal with, but the cancer of your husband and son. It's not fair is it. These things happen to us and we don't know why. You seem to have a strong faith and that's what we have to rely on. I don't know what others do who don't have that. It's hard enough as it is. I can't imagine not having God to help me get through my ordeals.
As far as not getting the pain pump, it was my choice at the advice of my doctors. Having something in my body that I had no control over really scared me. The chance of the thing leaking could kill me. That was enough to tell me not to do it. It also takes a LONG time to get the pump adjusted and I didn't want to go throught that. My main interest in it was to see if it would help me with my constipation. When I was told that it may even make it worse, why bother with the pump?
Yes I am on major meds, which include narcotics (I've been on all of them), tramadol, topapmax for nerve pain (and migraine prevention), lidoderm patches, and naproxen (anti-inflamatory). I guess I will be on these forever. For constipation, I have to take 5 Senakot-S tablets every night and I still don't go every day. Before Senakot was pulled off of the shelf recently, I only had to take two in the morning and two in the evening (regular Senakot) and I worked like clockwork. I don't know what they did to it but the product is NOT the same. I didn't have to use the "S" version, which is $15 for a measely 30 pills. Taking 5 per day really adds up! And the weight gain...I have gained about 15 to 20 pounds in the last 2 to 3 years. I can't fit into half of my clothes not matter what I do. All I think about is food and it makes me furious. I am trying to walk if I can and I have an eliptical machine if I am not hurting too much. Those are about the only two things I can do on a good day. That's after I have laid down for an hour and have my medicine. It just depends. I can only last 10 or so mins. but it's something.
The best thing you can do is research all you can. Information is knowledge. Try to find someone that has a pump and talk to them. I was lucky enough to find someone on Chronic Pain that live close to me! We exchanged info and actually talked on the phone. The information she shared with me was invaluable. I just chose not to do it for me. You need to research, research, research. Make an informed decision and know what you are getting into. It IS a big risk and something that I would do as a last resort. Let me know what you decide to do. I will keep you in my thoughts and prayers.
Thanks for your reply. As far as pain goes we all have our pain. It is ours and it is pain. So to me my pain is not worse than your pain. Maybe some different emotional pain. But anyone in chronic pain HAS PAIN! I also have DDD which is probably worse since my first back surgeon decided to open me up to see how bad it was and after I found out it can make it get worse faster. My back is pretty good since my back fusion, although I am having a lot of legs and feet pain lately. This burning pain from the entrapped nerve gets so bad that there have been people who have killed themselves over it. I have had it that bad but would never kill myself. I have a lot of faith in God. One morning on my Facebook page I think everyone thought I missed my calling. I started writting about faith. Faith to believe that healing is possible. I had faith since I was a little child. The next time I was at church what did he preach on Faith. After church I told him about what I wrote and what I feel is We need to pray the prayer for healing and leave the word "IF" out of it. That is not in the prayer that Jesus taught in the bible. When I thought about that prayer we are to ask "as it is in heaven" so I believe in healing, I am no fanatic, but I do believe in God. So even myself am trying to pray different. Believing my son will get well. Usually I don't pray for myself, but am now. I want my son to be well, so I just ask for prayer for him. But you know God is BIG, bigger than we think. I am thankful for the dr's, the meds that help people and believe that God is in control of that too. Pain, I do not understand why, or who has it, and why, or Cancer or anything that keeps people from being able to do what they need to be doing. You should not feel like you need to be put in place, cause as I said your pain is yours and it is just as bad as anyones no matter what. People's pain threshold's are different and we all handle it in our own way. Like this year, we have had another bad year. My husband had to have a triple-by pass, which we were really scared, he had a heart attack 4 years ago. Then 3 weeks later we lost our beloved dog Zoey and it was like losing a family member, well she was my little girl and it is still so painful, it has been 4 months, but we have a new puppy 4 months old now Abby and she is a sweety and she just knocked over my flowers off the fireplace and running with leaves in her mouth. Geez hopefully she grows up soon, but she is so in love with us and we with her. We just can't figure out she is an angel until now and then she turns into a raging puppy but that's a puppy. You know you gotta have some fun like you did walking your doggie or your doggie walked you. God gives us the strength to continue to live our lives the best we can and hope someday the pain will disappear. I will pray for you as your daily chores and raising your I think you said daughter that you have the strength and pain relief.
I take oxycontin and have been going down off them in case I got the pump, but after all I have read, I think I will double think not to do it. It is too scary. I used to wear the durgeic(spelling) patch and talk about scary of OD on the pump, we were riding the motorcycle and they are not to get heated. Well, it was a very hot day and I was getting too much of the drug, luckily someone noticed that I was like leaning off the bike. Now that was scary but I got cooled down, but to think the pump could be leaking and you wouldn't know it at all that is really scary. I am really glad I found this site.
I had just gone to bed but checked my email on my phone one last time and saw your post. I had to get up and go to my computer to type to you one more time tonight and not let this wait until tomorrow. I too have DDD and have nerve pain down my leg. It alternates though and NO doctor can tell me why. My fusion only stabilized my back and my pain levels did not improve. Like you, my need for pain meds causes so many problems when I have surgery. When I came out of surgery from my fusion, I nearly coded because they doubled my morphine drip to relieve my pain, causing my blood pressure to plummet to near fatal levels. It was really scary.
Your message means so much to me. I appreciate your comments. I was also raised in the church and accepted Christ at 13. I am 48 now and am married to a wonderful Christian man. I never hesitate to pray for others but in the past, I always felt guilty asking for healing and prayer for myself. I didn't feel worthy or that God wouldn't do it for me. I KNOW that is not true. I feel though that this is His choice and plan for me.This is what I must go through for whatever reason. And as I said earlier, I will receive my new body someday, with no pain, no meds, and no constipation (Ha!). This pain is NOT going to kill me. It is something that I can live with even though I don't like it. I hate it. But it is what it is.
I haven't been on this website for a while so thank you for writing. It helps to have support and talk with others who are going through the same thing. I pray that you get some relief. I know that I have a new sister in Christ. God Bless YOU!
I had just gone to bed but checked my email on my phone one last time and saw your post. I had to get up and go to my computer to type to you one more time tonight and not let this wait until tomorrow. I too have DDD and have nerve pain down my leg. It alternates though and NO doctor can tell me why. My fusion only stabilized my back and my pain levels did not improve. Like you, my need for pain meds causes so many problems when I have surgery. When I came out of surgery from my fusion, I nearly coded because they doubled my morphine drip to relieve my pain, causing my blood pressure to plummet to near fatal levels. It was really scary.
Your message means so much to me. I appreciate your comments. I was also raised in the church and accepted Christ at 13. I am 48 now and am married to a wonderful Christian man. I never hesitate to pray for others but in the past, I always felt guilty asking for healing and prayer for myself. I didn't feel worthy or that God wouldn't do it for me. I KNOW that is not true. I feel though that this is His choice and plan for me.This is what I must go through for whatever reason. And as I said earlier, I will receive my new body someday, with no pain, no meds, and no constipation (Ha!). This pain is NOT going to kill me. It is something that I can live with even though I don't like it. I hate it. But it is what it is.
I haven't been on this website for a while so thank you for writing. It helps to have support and talk with others who are going through the same thing. I pray that you get some relief. I know that I have a new sister in Christ. God Bless YOU!
Thanks for writing. Getting out of bed to write,that was so sweet. I too have always felt others needs for prayers were what I should do but you know what we are just as important to God as everyone. So maybe God wants us to pray for ourselves. If we had not prayed to become a christian then where would we be. I don't think God wants us to hurt, cause hurting keeps us from doing God's work. My son who has the cancer is a minister and I think Why God, he was doing such good work and he still does but has to deal with the pain, the chemo, the tiredness. So I pray for him to be able to feel better and believing he will be healed.
Talking about your surgery, when I had my back fusion they had me on double morphine, the patch, oxocotin valium gezz more than that and I was under but they could not control my pain in surgery. That night I never suffered so much in my life, as the nurse went against doctors orders and would only let me have the morphine pump to push what a hoot that is. The next morning my doctor can in and asked about my night, I am sure I was a fright as I had tossed and begged for pain relief. He went in the hall and ask the nurse why. She had made the decision that if she gave me what he ordered because of my size I would OD. Oh, did she get it and he told her if she ever did not follow instruction she would not have a job. Then he told her all the stuff he pumped in my during surgery and still couldn't keep my pain in control, that was how I found out what i had been given. As soon as I got the right meds, I was up showering and wanting to go home. I am happy that you have a great husband, I was 48 once but I am not sure where the years have gone, I am now 62. I am thankful for having this much time on earth, so getting older is okay. Write when you can. And remember "ALL THINGS ARE POSSIBLE' THROUGH GOD! Sandi