Health Organization for Pudendal Education

It has been a few years since I last posted. Had a Medtronic pump that about killed me twice. My pump was defective , it was a sync 11. I would wake up throwing up , going through withdrawals for days, then it would start working again, this went on for 3 years, each time I went in to the pain clinic with these complaints, they kept telling me the pump was running fine. the pump surged giving me so mucg medicine I ws unresponsive, this happened twice, they still told me the pump was running fine.. Dr Schultz told me at one time, everyone wants to blame
verything on the pump!!
go see your GP.I had to start searching on my

own. I am so angry with myself for not searching sooner. Finally I read about the litigations and the problems with the pump. I read exactly what was happening with me. The next time I went in I hollered at them, I said How could you??? You knew all along .... I was so angry they had to call the Dr. in. I let dear Dr. Shultz have it. I kept rattling off the times I had gone to the ER. They had to use Narcam to wake me up. They nervously checked their hand held gadgets and said the pump was running fine. I hollered at them and said , the meds were not running through and you know it. Dr. Schultz said to me at this point, we could argue that all day. Well it is obvious that they are afraid of litigation. I am not going to sue .. Since then, they are all falling over backwards to be extra nice.. Dr. Schultz especially! I will never forgive them for just allowing me to go through this hell for 3 years I know I need to let it go and go on. I tried the DRG, it didn't work. Just finished with the SCS trial. It really did help with the nerve impingment in my back and the sciatic pain.. I will be having it insersted permanently in about a month. I told them yesterday when I went in that we need to work on the
PN. They told me it is so deep that it is hard to treat... I still have hope that manybe it will... As Larry says, don't ever give up hope. Iam taking Norco, 5 mg 3 times a day. Not enough. Dr. Schultz made the statement to me to try the nPump, they do not use Medtronic any longer. Its better..Not a chance!!!! Maybe some of you are having better luck with the pump. Great if it is working for you.. I will keep you posted . good to be back. Ellie

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Hi Ellie,

Welcome back. Sounds dreadful what you experienced with the pump! Thanks for posting about what complications can occur with it. it is concerning that the doctors did not seem to be aware of these possible complications.

I went back to look at some of your previous posts and it looks like you were posting under the name river133.

I wish you all the best with the SCS. I would be interested to hear how it goes for you.

Take care,

Violet

The Dr. was definetely aware of the problems Violet. As were the NP. I was told from a nurse when I was in the recovery last week that there were other patients with the same issues as mine. All pump Drs. knew of the pump being defectilve.. .there were articles in the Mpls Star Tribune , All I had to do was google it. I find it very concerning as well...Ellie

Well, that would be just as concerning if they were not aware of it but did nothing.

I guess the important thing now is to find something that helps you. Hoping for the SCS to work!

Violet

Now I just need some pain meds to at least give my pudendal some relief. They gave me a script for 5mg of Norco. which does literally nothing. Going in tomorrow for an eval. . Hope to have it increased. I will be 82 in a couple of months. I really am not concerned about dependence.. I read that addicts live for their drugs, people in pain need their drugs to live. Amen.

The SCS was great for sciatic and pinched nerve back pain.. Didn't touch the pudendal.

Hi Ellie,

How did your visit go? Were you able to get the medication dose increased?

Violet

The insurance co. denied oxycontin. 10mg. I am still waiting for the clinic to prescribe Norco. I asked for 10 mg 4 times a day... Will let you know . Should hear today. I am running out of meds What a battle!!

Wow, so it's not just the doctors -- it's insurance companies denying opioids too. Hope you were able to get the norco at least!

Violet

Finally had a NP at the pain clinic that prescribed 15 mg. of morphine TR. When the pudendal is flaring, nothing helps.. I also , if needed am able to take 2 Norco in between. When I was at the clinic last week, they told me it can take a long time for the stimulator to work.. There are many different programs she told me. So it is a work in progress.. I keep on hoping... I have been in contact with Medtronic, They told me that
dr. Schultz is the only way I will find out what the pump analasis is .. I was told that he has not requested a report of it... He doesn't want to know!!!! I want a report of that defective pump... They sent a letter to Dr. Schultz telling them that I requested a report. .. I was told by Medtronic that if he did not tell me I should contact them ...I will. I just want to see that report.... and so it goes......