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Pump & cath pain

Has anyone had issues with the pump being extremely painful where it’s implanted & in your back where cath is?
2 Responses
20803600 tn?1546262537
COMMUNITY LEADER
Have you had the placement and positioning checked recently to ensure neither has shifted?
How long have you had the pump and catheter placed? Periodically both should be checked to ensure there are no kinks or blockages.
2 Comments
The pump was replaced in 2015 & they said everything was ok. I had this pain before that.
When I’ve told them they look @ me like I’m crazy:(
Been having it turned down because I want it out. It’s very very painful.
It’s really frustrating & upsetting!
First pump & the only catheter was installed in 2009.
20803600 tn?1546262537
COMMUNITY LEADER
How soon are you planning on having the pump removed? I am unsure if the catheter can be removed since removing it would leave a hole in the spinal canal itself.. Has your dr said if they plan on clamping the catheter and leaving it, or how they plan to remove it?
12 Comments
My hope are in the spring.
They haven’t said anything about the cath having to stay in.
I am scared to death
Tucker,
I can understand your fears. If I were you, I would first ask your doctors about running pump tests and checking the catheter tip for granular deposits. These can sometimes occur because some medications cause them to form on the tip of the catheter.
If those are negative, then it may be that the pump simply isn't a good choice for you in managing your pain. I would specifically ask about what the surgery to remove the pump would entail and if they would also remove the catheter. If so, how do they plan to seal the puncture for the catheter tip?
What recovery period you are looking at? Restrictions and for how long? What about your ongoing pain medication needs?
All of these are questions you should ask and get answers to so you can research, plan and prepare.
I’ve told them for the past 8 years that it hurts. They look @ me like they have never heard anybody say this before.
Next visit I’m going force them to check it.
It’s very very painful
I’m really frustrated
Thank you for answering
You are quite welcome Tucker.  I wish you much success.
Btw. I’m the one who wants the pump out. It’s causing me that much pain.
They don’t think it’s a good idea.
Tucker,
You have to make the decision based on what you believe is right for you. If the doctors are unwilling to try to figure out why you are having issues with the placement and the catheter, then I don't see where they have left you many other options but to see if removal eases the problems.
It's not an easy decision, but if the pump isn't helping, why keep it?
My thoughts exactly. Just having a really hard time with all of it.
I’m miserable & there have been so many times I’ve thought about just checking out. The only thing keeping me here is I don’t want to hurt my family.
I can’t remember the last day I haven’t cried.
I am so sorry Tucker. Please don't even consider anything drastic. I know how difficult unrelenting pain can be, and how draining it is mentally, physically, emotionally.
Have you considered talking with someone? Sometimes, just having someone to vent to, face to face can make all the difference to coping for another day.
Sometimes you have to take it hour by hour and at others in smaller bites.
You have something to look forward to now. Some hope on the horizon getting it removed.
I have talk to counselors but it just seems to make things worse. It’s hard both mentally & physically. I hurt, I’m so tired & never feel good.
My diaphanous is  myelopathy secondary to transverse myelitis @ age 12.
Degenerate disk disease, Neurogenic bladder & bowels, depression with anxiety, PTSD, chronic pain syndrome & a few other things.
I’m afraid to drive bc of the meds & I sure don’t need no extra troubles.
It is tuff my friend & I do want it all to end.
It’s really hard to stay positive when the pain never stops.
People don’t understand what it’s like.
I'm unable to sleep bc of the pain. If I’m lucky I’ll get 1-3hrs of broken up sleep a day. I’m so sleep deprived & it’s sure doesn’t help things. It makes me grumpy:(
I have a hard time going places & doing things bc I just keep up with everybody.
I’ve had to give everything up bc of it.
I’m trying to stay strong.....
I do thank you for taking the time to talk with me. It sure does means a lot that somebody cares.
Btw I’m a 51yr old man but @ times I feel like I’m just a big baby bc I cry so much. Peep don’t understand that I can’t help it. Shrink tells me that I’m only human.
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