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Getting Morphine Pain Pump after 10 yrs

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Posted 10/2/2012 4:12 AM (GMT 0)
Hello, I have been reading on this site about chronic pain and morphine pain pumps. I was in a wreck in 2002 and damaged my neck and back... after a yr of meds and therapy I was only getting worse... the doctor recommended I move to a less stressful area.. so I did, right like that helped... I went to a neurosurgeon for help and he said he thought I had MS... DNA test done after all the other EMG, MRI, etc.... and they found I have HNPP which is a nerve disease... I have been in severe pain since 1-2002.. with little relief from pain meds. I was a pediatric nurse and this pain has managed to take my career, my family and finally my happiness over the last 10 yrs... I have been put on large doses of phentynal pops... Well, now all the meds have taken my teeth.. I have had cervical fusions and lower discetomy... against previous dr advise due to HYPP... Made things soooooo much worse.... Finally found a dr just this month that saw that I had become a prisoner to my pain.... Bed ridden for about 2-3 wks out of month and when I can get out of bed I can make it to the livingroom to recliner... other than monthly dr appt I don't leave the house... He immediately scheduled me for pain pump trial.. I go in for the trial in 4 hrs and I am scared to death... when I did the stimulator trial I was in soooo much pain after....

I just wanted to say that it really helped reading all the post here.... I will be in hospital for 3 days with the trial so I will keep you posted if interested...


Thanks you all....
Posted 10/2/2012 4:35 AM (GMT 0)
Hi, welcome to the forum here, I'm sorry for what brought you here, 10 years in unrelenting pain, I just cant imagine. I hope your trial.goes smoothly and that you are finally able to find some relief. I just had a lumbar fusion, doc says it's probably just the first, since it's at the L3-4 level, and it leaves the L4-5 level, which is the most popular for problems, at great risk.

I think you'll find this forum to be very supportive, as I have, and I hope we'll hear from you often. Take care, and good luck in your trial. And God bless.
Posted 10/2/2012 4:49 AM (GMT 0)
I went ahead and just sent an email to one of the moderators that I'm pretty sure has the pump. Hopefully she'll be able to pop in here and give you some insight on what you can expect. Again Take care and welcome, I hope we get to here from you often, we have another member (also a moderator) who may also have to go the pump route, so I'm sure he'll be interested in following the details of your experience.
Posted 10/2/2012 5:38 AM (GMT 0)
Hi Matt, thank you so much for the reply and I am very sorry for what you are having to deal with... I had the disc removed at the L5-S1 area and they did the fusion at C5-C6... My husband has been great thru all this especially since it all started less than 2 yrs after we got married... I feel so bad for him... he basically got a disabled wife at the ripe age of 26... I am really hoping this does work since I don't know where I would go from here if it does not... I have been bounce from 1200 mcg of fentynal to 600 mcg and more methadone to back up to 1200 mcg of fentynal to diladid... and none of it makes the pain low enough to do ANYTHING... and if I do bite the bullet and do anything.. wow that night and the next few days are so bad I end up having a seizure.... oh ya... I was diagnosed with epilepsy last Fall due to all of the meds and the HNPP... thing just seem to only go down hill... so yes I was very happy to find this forum... as far as the frayed rope effect.... they told me that my lower spine looked like there was nothing left but pebbles and they could not believe I was walking at all...lol... oh and in 2003 when they diagnosed me with HNPP I was told I only had 2 yrs to live before the disease killed me... wow I freaked until I found out that no one really knew much about the disease... so I am a fighter and I am still here...

Anyway, very nervous about going to the hospital in 2 1/2 hrs for the trial. I guess that is obvious since I am still up at this hour...

Thank you for all the kind words and will check in later today..
Posted 10/2/2012 6:21 AM (GMT 0)
Farilady...

Welcome to the CP forum of HealingWell.

I wish you much success w/ the trial.... I don't have the pain pump implanted at this time - but I did have the trial, and that itself was successful for me. My doctor used dilaudid, as I had grown tolerant of the morphine. Anyway, I'm really hoping that you'll have nothing but pain relief during your 3 day stay. I know you are nervous.... but hopefully they'll take good care of you in the hospital.

I'm sorry you are dealing w/ so much pain. :( I, too, am on oral fentanyl, as well as other meds.

Anyway, please update us about your trial. As mentioned, one of our moderators has a pain pump - and I'm sure she'll comment on here as well.

Hang in there - and, again, welcome. --Tina
Posted 10/2/2012 12:45 PM (GMT 0)
 

      Good morning Farilady!...and welcome to our CP forum!

          WOW!...you have been through a lot, and were very sorry that you have had to endure all of this. Hopefully you will have a good trial run with the pump. I too am scheduled to visit a pain pump Dr here soon, but after visiting with a couple of patients who have them, I'm now having doubts that I will be able to have one and continue to work my current job.

 I do a lot of bending and twisting here at work, and I guess that is a no no with the pumps implants.

     I wish you the best, and look forward to your report of success when your done with the trial. Also, there is a group called "Pumpsters" that deals strictly with pain pumps. Lots of information there to check out! However, Straydog should be along soon to answer any questions that you may have.

     Take care,

    SE wink

Posted 10/2/2012 6:12 PM (GMT 0)
Hello Farilady and welcome to the chronic pain forum. I totally understand your fear, I was the same way when I did my trial. However, once they got things hooked up and the medication flowing, I honestly thought I had died and gone to heaven. It was incredible how I went from gut wrenching pain to so little pain. My dr warned me I would not feel that great though once the pump was implanted because they slowly increase the pump to get you to your magic number.

Like you I was spending my days in bed and that is not existing in my book. It was along road and two drs later to get where I am today but very much worth it.

I wish you the best on your trial and can't wait to hear back from you. Take care....Susie
Posted 10/2/2012 6:12 PM (GMT 0)
Hi Fairlady
I wanted to welcome you to our chronic pain forum. Glad you found us but sorry you are suffering so much. You certainly have gone through a lot for such a young age. Sure sounds painful. I really hope the pump trial will be successful for you and that it can bring you a better quality of life.
Myself, I have been suffering with intractable head pain for more than twelve years. Like yourself, I am a paediatric nurse and lost my job of 25 years because of this chronic pain. Not fun at all.

I hope you will come back and post with us after your trial and you're back home to let us know how you made out. Good luck my Fairlady.

Suzane
Posted 10/2/2012 7:21 PM (GMT 0)
Just a quick note, my pain and blood pressure r so high my husband is monitoring me for seizures. I got to the hospital after a 3 hr drive to be told it had been cancelled due to dr previlages being suspended. Called dr ASAP and was told oops sorry come to office to see if dr will give u any meds to help til we reschedule u. Went to office to be told had they made me wait 10 mins this AM I would been admitted and done trial so he gives me methadone and Percocet for pain which is like taking nothing and has me put back on trial schedule for 5 tonite. But after sitting around in truck from 3 am til 1:35 pm with no pain control, I get a call. Oops, they have to cancel it again. And don't know when they will have me back on schedule. So headed back home hurting like hell. Does anyone have any suggestions or different dr I might be able to see. Can't keep going on like this.
Posted 10/2/2012 7:32 PM (GMT 0)
That's the craziest story I have ever heard!! How awful for you...

So the hospital is the one that said the Drs. privileges were suspended? I would try and find out the story behind this because you deserve to know what he has done for this to happen as that is a pretty severe issue.

Is the Methadone and Percocet what you have been taking?

Sorry for all the questions...but it all just sounds so unprofessional and if this Dr. is someone you've only known for a month...I think I would be running in the other direction to find another Dr asap...

For him or his office to not be the ones who called you to let you know the issue instead of you driving all that way to the hospital is inexcusable to me...

I mean...the pain pump is a serious deal and you need to have 100% faith in the Dr. who does the surgery and who is going to be monitoring it for you..

You don't want to have this done and then this Drs entire license is suspended somehow and you are left out in the cold..

So sorry this happened...:)
Posted 10/2/2012 7:56 PM (GMT 0)
 

    WOW!...what an odd day for you!...and I agree with Snowbunny something seriously is wrong here!...and I would not do anything until I got some answers. A pain pump is a serious deal, and you deserve the best even with the trial.

     Did your PCD refer you to the pump Dr? I would get back with your PCD and let him know what happened or call medtronics and get a referal for a different pump Dr.

    What a crazy day for you...and I feel for you too! shakehead

     Let us know what you find out!

  SE

Posted 10/3/2012 3:18 AM (GMT 0)
I hope everything works out for you, keep posting so we one here know how it goes!! Please take care!!
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