Avatar universal

Pain can be controlled

I’ve had my pain pump for 10 years. Since 2012. I agree the Pain Pump can be a wonderful thing. I take no oral pain pills under normal’s circumstances. However, in the 10 years I’ve had it. I’ve had one human error in taking care of it. A technician who was supposed to refill the pump failed to do it and put my pump on a micro drip till I came back. Unfortunately I went into under-dose and  ended up at the hospital.
The second issue was mechanical error and I’m currently going through this right now. My catheter has either a hole in it a kink or something we have yet to find which we will be doing a dye test tomorrow   My meds have stopped. My back can’t get what is needed because the medication is still going in my body unfortunately not to the spinal cord where originally installed. That we are sure of. Withdrawal is very difficult and dangerous. I just got out of the hospital from a week stay.
I hope I can come back with a positive outcome and result and brag how good the procedure was. Prayers welcome.
To the ones seeking out of a pain pump for yourself. There is a trial you will go through. If you don’t like it and feel no relief don’t attempt to get the pump. It won’t help. You need to have complete relief. If you still feel pain. It’s just probably not for you. You have to be the judge.
I went with the pump because I had a young baby girl who needed her mommy. Not a pain pill popping mommy but a stand up and be there mommy. I was afraid of taking too much medication one day and not being there for my young daughter who was 5 when the pain pump was installed.
Plus, my oldest daughter, she was 21, had just died from an overdose. She was a heroine addict. We all tried to save her. She didn’t want saved unfortunately. I have to live with that everyday.
I didn’t want to become a statistic. Nor do I now.
Pain can be controlled just have some faith and hope and love yourself.
(prayers are always welcome). Thank You
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20803600 tn?1546262537
I am sending good thoughts and prayers for answers on the pump issue that it gets resolved and you go back to enjoying your life and pain relief.
Pain pumps are a great alternative for long term chronic pain management but aren’t always a good fit for those who can’t adjust to the idea of something implanted permanently and don’t have access to physicians well trained in managing not just pump fills, but catheter issues or pump problems.
It is also usually only considered after a long time and oral med doses are higher than the patient and provider are comfortable with.
The trial absolutely must be successful or the pump should not be considered as an option.
Thank you for the prayers. I really appreciate it so much.
The dye was a bust. It didn’t go as I would’ve hoped. Nothing was found.
My pain management doctor said I needed to contact my neurosurgeon. Which I see on Wednesday.
The pain management doctor said that he was increasing the pump 20%. I said why the increase, why not just turn it off it’s not working.
Since Thursday I don’t know if it’s working on/off but my pain meds for the withdrawal is only lasting 3 hrs before I go through full blown withdrawal again. It is awful. I’m scared of where this medicine is going if it’s not going where it’s supposed to and pray to God my neurosurgeon can help me. If you have any suggestions for me. Please, please let me know. Thank you so much for your  kindness.
I am sorry you didn’t get any answers from the dye test. It may very well be that the catheter either is kinked somewhere between the pump and where inserted within the canal- or the catheter may be blocked - which sometimes occurs with the use or combinations of some medications used in the pump. They can form crystals on the top of the catheter blocking the microscopic holes that should be delivering the medication. The only other things it could be is the catheter has become disconnected/compressed somewhere from the pump to the spinal cord, or there is an issue with the pump itself. If it were the latter- there would be an audible beep altering you there is a problem(pump malfunction.) I suggest you contact the pump manufacturer and have them meet you at the neurosurgeons office- perhaps they can help figure out what may be occurring.
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I left off on Wednesday, as I said  I was going to the neurosurgeon. I actually seen my neurosurgeon’s assistant. Went in and explained what was going on and was told I would be put on the top of the urgent emergency list for an exploratory evaluation on the catheter. I felt some what relieved when I left the office. Was told it would happen within the week. On my way home, wasn’t there yet and received a call from my neurosurgeon office asking if I could be at the hospital at 5:30 the next morning. Of course I said! I Felt relief even more. Next morning at Nashville hospital and ready for this procedure and was told by neurosurgeon that the exploratory would show rather the catheter or the pump or both need to be replaced and it was happening today. I was so relieved. I woke up to find everything was replaced. No one is quite sure where this leak was happening but it was evident and the pump was close enough to needing replaced due to battery they went ahead and replaced it as well and just Incase. Like I said for 10 years I’ve had this for my pain in my back, other than one human error there has never been a problem. I honestly thought maybe about taking it out. However,  I have to go back to my original reasoning of not taking it out. My pain is too terrible and I am scared of accidentally killing myself by overdosing on pain pills as were my physicians. I just pray and hope nothing ever like this happens again. But if it does, I’ll definitely go to my neurosurgeon first. Learn that lesson.
I go back to my neurosurgeon Wednesday for a follow up. I’m sure it is to start whining me off the opiates and antibiotics that I’m taken. I’ll be extremely grateful. Thank you for this forum and place where I felt I could find some solace and hope. Sincerely appreciated!
Helpful - 1
So relieved you got the issue corrected and are on your way to feeling better! And really glad that the Neuro was able to get you in to fix the problems so quickly!
Speedy recovery wishes sent your way- and hope to see you continue posting!
So much has happened since that last post on December 12th. I’ve had two more surgeries since. There was a leak that started on Christmas Eve 16 days after the pump and catheter replacement. I called the emergency line of my neurosurgeon and spoke with the NP she did a guess over the phone thinking it was a semona (forgive the spelling) or something like that, put me on some antibiotics to get me through the holidays. So I went back on Jan 4, 2023 and when she seen it was literally leaking like a faucet out of a hole in my back like a pin hole. She ran out and came back with the neurosurgeon and they said it was a Spinal Cord leak. So I went in surgery the next day. Doctor replaced the catheter again and sent me home again. By Sunday January 8, I was back in the emergency room being admitted by the surgeons staff so they could stop another leak. Next morning on the 9th had surgery number 2 for this year. Found the leak. Was at the first site of the original catheter. Was put on bed rest for a few days in the hospital. These surgeries weren’t like the first one in December. After that one I felt so much better.after the two this year I’m having serious pain in my ribs. Especially the back top and the center middle in the front. I was on bed rest for almost a month. Could bed rest do this? I have no ideas. I have researched till I’m blue. I rested so much I though maybe I lost muscle or something. My NP at neurosurgeons office had me wait a few weeks see if it got better. I swear I think it may be worse some days more than others. Monday I am having an MRI to go find out what it is. Then I have to drive an hour afterwards to my pain specialist so they can make sure the Medtronic pump came back on after the MRI. Driving doesn’t hurt. Sitting doesn’t hurt. This is such a bummer. I’m wondering if anyone has ever had any problems with their rib cage hurting so bad when they walk. It’s not immediate, it gradually works itself into full blown pain. Plus, it don’t hurt when I’m in bed but the more I stand and or walk the more it get in pain. I hate complaining. I really do. I hate that something that was going so good in December turned and went and did a 180 on me. Any suggestions is greatly appreciated and welcomed. Thanks so much.
Thank you! I don't feel like I'm crazy anymore
Wow, so the pain specialist had to end up putting me on muscle relaxers and an anti inflammatory. I am currently using. The crazy thing is. I went on a diet to get the weight off after gaining from the surgeries and inactive body being in bed rest and hospitalizations, all that doesn’t help at all. I’m currently still losing weight but am past the half way point. Yay, the app says I should hit goal by June 1, 2024,  losing 2 lbs a week. However, my pain specialist the doctor who refills the pump recently, like last week took me off the clonidine that was in my pump. I know this is crazy but I don’t feel the rib pain as much. I’ve actually cut the tizanidine 4mg.  in half and take a half twice a day rather than a whole one three times a day. The less I sit the better I feel. The more I’m active the better I feel. I know this isn’t for everyone. But it’s working and I’m so grateful. The diet that I’m on is Keto and I’ve been on it a good while since end of October and I tell you cutting out sugar has been a life saver. My body didn’t need all that. I think my body just needed to detox. I’m not done yet. However, I’m living a better life with my pump not as perfect before it went haywire, but more respect and definitely more appreciate for it than ever. I rather have my pain pump than be stuck wondering if today is the day I take one too many pills because I can’t remember what time I took them or how many I took. That was my life before the pump. I’ll take my life now definitely. I hope this helps to encourage those who have similar problems or experiences. :))) Also, please feel free to reply. I’m not shy. I love to get on my soapbox lol
20803600 tn?1546262537
Happy to read that despite the issues- you are slowly regaining ground and Congrats on the weight loss as well.
Those issues unfortunately are a potential cause for concern with a pain pump-( catheter leaks, kinks, pump failures)- that’s a huge reason you need an experienced pump surgeon and a pain management team as an ongoing part of your medical care post pump implant.
I know this was a rough road- now- with you on the path to resuming your life- I am happy to read this!
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