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Pain Pump Ziconotide- What to expect?

Donna0001DDonna0001 Posts: 2
edited 06/17/2019 - 3:26 AM in Pain Management


My husband is getting a pain pump installed in weeks with

Ziconotide. He already has a SCS  installed before that’s stopped working.

 A little background on my husband. He had all together 6
abdominal surgeries throughout his life, which result in a big mess in this
intestinal system. He have long-term, refectory abdominal pain and the surgeon told
him surgery cannot fix this pain . The pain is in the nerves and we have tried
nerve
block - works for about 2 years

Medtronic
SCS  machine. Worked about 9 month,
then the pain came back stronger. It seems SCS only covers the surface
nerve pain where the scar tissues are, but the pain moved deeper inside in
belly that every time there’s any bowl movement the pain will be constant.

Multiple Nerve ablation with alcohol – increased pain afterwards since the nerves
are all fired up; didn’t relief the pain after the nerve calm down as well
The pain doctor has suggested pain pump then. We have tried
three trails with different medicines. Morphine trail put my husband to a bad allergy
reaction with rash, stopped trail immediately. Then we tried a different drug
cocktail using mainly Fentanyl , the pain is controlled but Fentanyl is causing
extreme  fatigue that he can barley move

Then it comes Ziconotide. My husband has tried a 5-day trail
with Ziconotide and the result is magical. It covers 100% of the pain, no side
effect on him at all, and he has been eating three meals with regular bowl
movement. It is no brain that we WANT this. We live in Singapore and it is the
first time the doctor use this drug and he is very cautious with it (which
making us even more nervous). We’d like to know some information about people
who use Ziconotide pain pump in this forum:


Does anyone have both pain pump and SCS machine? R u running both or it’s ok to
take the SCS out?
Doctor said Ziconotide will expire in 84 days, but I noticed somebody else on the
forum said he can refill it every 6 month. How often do you have to do to
refill your pump?
Does anyone has experience with leakage / infection with the pump? How fast do
you have to get to a hospital if that happens (in case we are somewhere
that’s not close to a hospital). It is lethal?
Is your pain pump still working? How long you have it now?

Thank you for reading and your experience/ advice will be
highly appreciated.




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Comments

  • LizLiz Posts: 9,695

    Liz, 

    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • MikethepikeMMikethepike MIchiganPosts: 668
    edited 06/17/2019 - 6:21 AM

     I’d like to hear more about this drug. Has your husband taken it orally ?  Any side effects? Also how long did he take it for. Is it expensive. Take care and God bless

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  • memerainboltmemerainbolt IndianaPosts: 6,443

    Hello Donna0001!

    A few years ago I had a SCS for nerve pain but had to have it removed as I had too much nerve damage. Because of my spine deteriorating, I had a Medtronics pain pump implanted in 2017 using morphine. The pump covers the pain in my spine and lumbar region but not nerve pain. I have to get injections and take anti-inflammatory meds for that. 

    I did some research on Ziconotide, it is generic for Prialt. Most doctors in the U.S. do not use Prialt. I have my pump re-filled every 3 months, a very simple procedure. Personally, I have not had any issues with my pump. Talk to his doctor about keeping Narcan on hand in case of something going wrong.

    There are a few members with both the SCS and pump. Hopefully they will be along soon to answer some of your questions.
    Please keep us posted on how things are going.


     

    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical Story  
  • Thank you for replying guys! It is just really nice to talk people who have go through this as well.

    Mikethepike Like memerainbolt   answered below,   Ziconotides generic for Prialt. It can only be used in intrathecal pain pump & cannot take it orally. The drug is relatively new and US is few of the lucky places that's available. It's very expensive and definitely will be out of our price range if we don't have insurance coverage. The only reason we are going with this is that the trail shows positive result and my husband is allergic to morphine and having bad side effect with fentanyl. 

    memerainbolt Thank you for sharing your experience. It's a good point with Narcan and will definitely talk to doctor about it. I will keep update on the forum once the surgery is done. We are cautiously optimistic but also feel it's too good to be true to get control of this pain. Went through the up and downs before and have been disappointed for many times.

  • memerainboltmemerainbolt IndianaPosts: 6,443

    Donna

    I wish you both the best of luck in trying to find him relief. If you need any more information, please, do not hesitate to ask.

    Take care and keep us posted.

    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical Story  
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