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Willing to share experience with intrathecal morphine pump implant
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Picture of Denny
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Hi, Shirley.
Thanks for asking about my next steps.
I've been on the higher dose of Oxycontin, 20mg, 3 times a day, for a month now.

It hasn't made that much of a difference in my pain & headache levels, and it's definitely making me a little more loopy than I usually am.

I'll be meeting with my pmdr again on the 30th. It looks like the options would be to leave it as it is, increase the Oxycontin level, or go back on the Fentanyl patch.

With a previous pain issue I had 5 years ago, nothing helped except the patch - and we tried everything. The only negative was going off it -the withdrawal I had I would not wish on my worst enemy, if I had one.

But this time, it would be more of a long-term situation, with withdrawal possibly never coming in to play.

So, that's where we are now.
Thanks again for asking - I'll keep you posted!
 
Posts: 365 | Location: Sandy, Utah by way of Connecticut  | Registered: 04-30-2010Reply With QuoteReport This Post
Picture of SoBlest
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Denny,
Your positive attitude is contagious and I agree that you are an absolute valuable jewel here on CP. We are SOBLEST to have you here to encourage us and motivate us. Thank you for EVERYTHING that you said. God Bless you.
"So Blessed"


"I will say of the Lord, He is my refuge and my fortress: my God; in Him will I trust."
Psalms 91:2
 
Posts: 411 | Location: West Virginia | Registered: 01-21-2008Reply With QuoteReport This Post
Picture of SoBlest
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Trans and All here,
Update from doctor appointment yesterday: It was a whirlwind afternoon. I wanted to get a copy of the doctor's surgical notes and she was going to print them out for me. The PA left my chart in her office and left. I sat in the patient room for over an hour waiting for the doctor to see me. I could hear him and his nurse talking and finally stepped out to say something. They had no idea I was in there. GEEZ! They were a little upset with the PA to say the least. They couldn't even find her. I bet that they will have some words with her later. They apologized profusely and came right in. They were so glad that I said something. you hear these horror stories about patients being left in rooms until the office closes. That would have been me!

Anyway, the doctor was dumbfounded by my pain on the left side and says he has not had a patient ever report this. He would like to give me a cortisone shot but it interferes with healing. Might do that in a couple of weeks if I'm not better. He also mentioned doing an MRI but will wait. I asked about repositioning the catheter and that's a last resort. Either way, he took me seriously cause I was absolutely in tears. I told him that this pain was worse than the pain I had BEFORE the trial and implant, and that if it didin't go away, I want the pump taken out. He wanted to give me another increase but I had just had one two days ago. I mentioned that increasing my prialt with a pump that is causing this pain is ludicrous. The pain on the left is so bad that its overshadowing how much pain I have on the right. My muscles are so tight in my mid and upper back for overcompensating. I go back next Tues for the next increase. I just want this pain to go away. I told my husband that if I were standing on a cliff to just go ahead and push me. He said,"you don't really want that", and I said "I know that". I was just stating how desperate I was to have this disappear. The only other explanation for the left side pain is the swelling from the surgery. My doc says it should disappear within a couple of weeks, if its from the swelling from the surgery. I PRAY TO GOD HE IS CORRECT. I COVET YOUR PRAYERS ABOUT THIS. I BELIEVE IN PRAYER. I PRAY FOR ALL OF YOUR PAIN TO DECREASE TOO AND THAT WE HIT THOSE TARGETS AS DENNY SO ELIQUENTLY POINTS OUT. THANK YOU!
SOBLEST

Trans. What did your doctor visit result in?


"I will say of the Lord, He is my refuge and my fortress: my God; in Him will I trust."
Psalms 91:2
 
Posts: 411 | Location: West Virginia | Registered: 01-21-2008Reply With QuoteReport This Post
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soblest...i am so sorry for this setback. i am saying a prayer for you as i write. we all understand what you mean by just 'go ahead and push'! i pray that your pain levels will be more manageable soon. what are you doing about your work...i know how concerned you were to get this taken care of before school started. shirley
 
Posts: 83 | Registered: 01-26-2010Reply With QuoteReport This Post
Picture of SoBlest
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Thank you Sherlex for your prayers. Today was a prep day for school and I just trudged along. I have percocet for post op pain but I am trying to not take it but I just have to for work. Monday, the kids start school. I hope that I can mangage. If not, I will use sick days. I just have to wait and see. Thank you for asking. How are you doing?
SoBlest


"I will say of the Lord, He is my refuge and my fortress: my God; in Him will I trust."
Psalms 91:2
 
Posts: 411 | Location: West Virginia | Registered: 01-21-2008Reply With QuoteReport This Post
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soblest...having a break in my mind numbing pain tonight for some reason!! this is how my luck goes...back pain better but i am covered in poison ivy from head to toe!! did a bit of landscape work earlier this week and it looks like i will spend my sat morning in the weekend clinic getting a steroid injetion. thought i could wait it out but it is driving me MAD toight haha. hope you have a restful night shirley
 
Posts: 83 | Registered: 01-26-2010Reply With QuoteReport This Post
Picture of SoBlest
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Sherlex!
If its not one thing, its something else! Bless your heart. I hope you find some relief soon and get some sleep although it sounds as if it might be difficult. I wish I could send you one of my new "sonatas" that I got filled today!
SoBlest


"I will say of the Lord, He is my refuge and my fortress: my God; in Him will I trust."
Psalms 91:2
 
Posts: 411 | Location: West Virginia | Registered: 01-21-2008Reply With QuoteReport This Post
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Hello SoBlest,Sherlex, Dennis, Greg and everybody, I've been doing better with the Prialt increase for the arachnoiditis problems, just the loose hardware is a major problem still. I am happy SoBlest that your Dr is taking this seriously and willing to do something about it. Do you think the prialt is causing the pain? You know, they can withdraw all the Prialt without side effects, he could try dilaudid or other choices. Might be something to ponder. I don't know, I do know I had pain from the surgery for about a month and the pulling feeling in the pump about 2-3 months, but I thought that was because of placement. My heart sure does go out to you, I wish there were a way to help each other carry the pain, I'd sure do it for you. Enough is enough sometimes no matter what we try to do. My heart goes out to everybody here, reaching out to help others even though you also hurt. That is a pure act of love. I do so appreciate this board. Just wanted to check in and say hello. Seeing a surgeon on Tues. for the scoliosis and the hardware problem. Oh well, gotta stay looking forward.

Each of you have a very blessed day. Love and prayers.
Trans.
 
Posts: 637 | Registered: 06-18-2010Reply With QuoteReport This Post
Picture of SoBlest
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Hey Trans. My heart goes out to you too! I sure hope you get some answers Tuesday. I know that facing another surgery is not what you want to do but it sounds like you must. You will definitely be in my prayers.

My doctor does not feel that the prialt is causing the pain cause it would be on both sides. I read though that prialt can cause NEW pain. Will definitely bring it up. Something from this surgery is causing the pain, and I have to get to the bottom of it. I am trying so hard not to take percocet but sometimes I just have too. I have a LITTLE bit of oxycontin left and have taken it on two different days, but I don't want to take it either. Heck, I don't want to go through withdrawal again no matter how bad I hurt. When I go to the doctor Tuesday, I will get an increase, but I am going to request an MRI like the doctor suggested as one thing to do. This pain is NOT going away and I want to get to the bottom of it. I refuse to keep upping the prialt to mask what this surgery has caused, even though I need to in order to attack the original pain. My "new" pain is so bad, that I can't even recognize my "regular" pain. I am at an 8 with the new pain. My stomach at least has gone down; that's the only good thing.

By the way, I have never heard back from Bob E. so I sent a private message to Karen R. about him. Haven't heard back from her yet either. I am really worried about Bob E. - I hope he is ok. He has not responded to me here or privately and he hasn't posted anything for quited a while. Just hope he is well.

Hugs and prayers TransSmiler
SoBlest


"I will say of the Lord, He is my refuge and my fortress: my God; in Him will I trust."
Psalms 91:2
 
Posts: 411 | Location: West Virginia | Registered: 01-21-2008Reply With QuoteReport This Post
Picture of SoBlest
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Denny,
I know what you mean about withdrawal and think anyone else who has been through it, does as well. I made a statement about it in the post above so I won't repeat myself. All I can say is HORRIBLE! I want you to get where you need to be though, and you have to look at the "target". That's what I had to do starting June 29, 2010, day one of withdrawal. I haven't reached my target yet, and am hitting some turbulance along the way, but I WILL get there. Sometimes I want to jump off of a cliff but then I come back to reality (sometimes).

My husband tried his best to help me Friday night. I was laying in bed really hurting and in tears. He knelt down and put his arm around me and smiled, saying "If you were in NO pain tonight, what would you like to do?" That was the WRONG thing to say. I absolutely lost it. I burst into tears. I told him that I just needed him to rub my back and he WALKED OUT! I didn't hear him say "let me water the flowers first". He had no clue how bad I felt. The flowers could have waited for Heaven's sake!

This was a pefect example of how our family members try to understand and help, but they just don't get it sometimes. I can't fault him for trying though, and I love him dearly. About 2o mins later, he came back and gave me the BEST back rub ever. While I waited though, I thought that maybe HE lost it and walked out because he didn't know what to do: that he felt helpless. Nope. He just wanted to water the flowers first.

Maybe some of you can relate to this situation. If so, you can go "I know how she felt". Again, he made up for it. Right now, he is asleep on the couch and I wish he could give me another back rub. Oh well, maybe "later".

Denny, maybe you can have your wife give you a backrub today cuz it sounds like you could use one.
SoBlest


"I will say of the Lord, He is my refuge and my fortress: my God; in Him will I trust."
Psalms 91:2
 
Posts: 411 | Location: West Virginia | Registered: 01-21-2008Reply With QuoteReport This Post
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TRANS...my thoughts will be with you on tues as well. i am so sorry that you may have to go through another surgery but perhaps the removal or readjustment of the hardware will solve that problem and you will find some permanent relief!! you have been so great at keeping spirits high on this board. i hope that you are feeling the support that you need. SOBLEST...level 8 pain is just too much to bear for extended periods isn't it?? i'm glad that you have some of the oxycontin left. does it help with this new pain when you take it?? "i know how you feel" when you said that you lost it with your husband!! i think that it is that we know how much they love us and that they can 'take it' when we just can't anymore. i can see the pain in my husbands face when he feels that he has let me down in his support and i love him so much for that. there will be special rewards in heaven for our families that make it through this with us. i, too, am concerned about not having heard from BOB E. i hope that he is well and has just taken a break from the board for a bit. hey DENNY i hope your weekend has gone well and that you have been at manageable pain levels. you said that you may go back to the fentenyl patches on your next doc visit. may i ask about your pain levels when you took that drug before. was it for a completely different pain than what you are dealing with now?? has anyone heard of the platelet rich plasma procedure that my doc has offered as an option for me? i guess i may have to try it if my ins approves since i am at the end of the drug line except for the prialt. i am just at a loss at understanding why my body does not respond to the narcotics. i am taking an antielyptic and may ask my doc about adding a trycyclic antidepressant to see if that might help. any suggestions as to other alternatives for me would be greatly appreciated. shirley
 
Posts: 83 | Registered: 01-26-2010Reply With QuoteReport This Post
Picture of Denny
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SoBlest,

I don't know - I think I might ask your husband for a backrub, if he's that good at it!

It's so true that sometimes the people that know us best have trouble understanding what we go thru.

I think that just as they have to learn to be patient with us, we also have to learn to have patience with them.

It's definitely helpful to keep the lines of communication open 24/7, and I think that we should be encouraging them to take time for themselves from time to time - away from us - because of all they do for us. It's a way to let them know how much we appreciate them for dealing with our situations.
 
Posts: 365 | Location: Sandy, Utah by way of Connecticut  | Registered: 04-30-2010Reply With QuoteReport This Post
Picture of Denny
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Hi, Shirley!

I don't think you were onboard yet, when I originally described what had happened, so here goes!

Back in Sept of 05, I had a cervical discectomy done, with the 2 vertebrae linked with a cadaver bone, then held in place with brackets and screws.

I woke up in the recovery room with incredibly severe pain in my right hand, at the base of and into my fingers. As I woke up more, the pain got so bad that I remember yelling out, it hurt so much.

They gave me some pills - I don't remember what they were, but they didn't help at all. They then started me on a morphine drip.

It was still severe, so my surgeon had a CT scan done to be sure all the hardware was set correctly. That was a real joy to go thru, but it showed that everything looked ok.

After dealing with this for 2 weeks, at home with Oxycodene and the pain still at an 8-9, my surgeon had me go for an MRI. He had Debbie & me come into his office right away, where he showed us on the MRI that I had a small bruise on my spine, just under where the surgery was done.

Somehow, during the surgery, something had nicked my spine, causing the nerve pain in my hand. He sent me to a Pain Management dr (the same one treating me now), and for the next 6 months, we tried every possible pain med, with little or no relief.

At this time, the pain was at a consistent 8-9 without meds, dropping maybe to a 7-8 with them.
It was only after we started with the Fentanyl patch that I finally started to get some relief. The bad thing was that I had to go up to 75 units before it started helping, and 100 to have some real relief.

But, I was an absolute basket case! I just couldn't handle it. I couldn't drive very much, and I wasn't very useful at work. I went to college in the late 60's, but this was a pretty miserable high. I hated it.

It was then that he had me do a trial with the spinal stimulator, and fortunately, it allowed us to lower the amount of the Fentanyl.
I had the stimulator implanted, and we reduced the Fentanyl to 50 units.

I was still pretty messed up, so after a year I started weaning off it. When I stopped it completely, I went thru a horrible withdrawal that lasted 6 weeks.

A lot of people on the site know what I'm talking about as far as bad withdrawal - it's just impossible to describe it to someone who hasn't experienced it - and because of that, I swore I would never use Fentanyl again, no matter what.

Sorry it took so long to get here, but that's where we are now. The Oxycontin just isn't doing it, which is why we started a dicussion about trying the Fentanyl again.

Naturally, I'm very apprehensive, knowing what happened last time. On the other hand, it might be a situation where I might not ever have to go off it. Another thing I'm going to talk to my pmdr about is the possibility of using a 2nd spinal stimulator.

I don't know that this would even be a possibility medically, but I'm trying to come up with any alternative that might exist - or that doesn't exist yet.

For the record, we did not consider a lawsuit against my neurosurgeon, as we didn't consider it to be malpractice or negligence. It was one of those things on the waiver we sign, that things not planned for could occur as a danger of the surgery. We found out that apparently this type of thing happens in 1 out of every 10,000 surgeries as I had. We figure that there must have been 9,999 surgeries before mine, so it was time for it to happen - and I had the winning lottery ticket.

(This same neurosurgeon did a lumbar laminectomy for me 3 months after the neck surgery - we lost no confidence in him at all).

Thanks for enduring this! I'm sorry it went so long. I hope it answered your questions.
Let's hope that this week is better for everybody than last week was.

This message has been edited. Last edited by: Denny,
 
Posts: 365 | Location: Sandy, Utah by way of Connecticut  | Registered: 04-30-2010Reply With QuoteReport This Post
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Denny,
my prayers are with you that they find a pain med that works for you; but you still want a life too? These meds do that to us don't they; take away the pain-take away most of our life. What is wrong with that plan? There has to be something that works for us. I know what you are saying about the fentanyl. I was using 125mcg plus 8-30mg oxycontin a day. Have a life? No way, but it helped a bit with the pain, made it a 8 instead of a 10. Worth it? That's why we had to try my pump. But getting off the fentanyl or the oxtcontin is a bad day! My heart does feel for what you are going thru. I do wish we had a patch like the fentanyl but with a drug like the Prialt that is non narcotic and still works. Maybe one day a pain patient will be coming up with our meds and choices. Until that happens though, we do what we have to do. We have to make our choices for the best possable way to live our own life. I can understand what you are saying about not having to go back on the patch, but you also stated you may not have to ever get off of it. We can sure pray for the best possable result for you. You are in many of our prayers friend. And remember, you're not alone. You send very inspiring messages to many of us here. Isn't it wonderful what this computer can do? Would you have ever found a better way to get your message out to all of us than this board? So many people are inspiring here and that in itself is like a medication for some of my pain. I wonder if it does the same for other people here?
I sure hope you can have a better day and the choices you have to make work well for you.
Trans.

This message has been edited. Last edited by: transcriber,
 
Posts: 637 | Registered: 06-18-2010Reply With QuoteReport This Post
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SoBlest
How are you doing today? I do hope they will give you at least the MRI and try to find your new problem, this is not what it was supose to be huh. I sure am praying you get some answers real soon.
I hope you can have a more pain free day real soon my friend.
Trans.
 
Posts: 637 | Registered: 06-18-2010Reply With QuoteReport This Post
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