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Interthecal Pump Effectiveness

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Posted 12/19/2010 6:59 PM (GMT -5)
Hello everyone.  I am a returning member with a new e-mail address, so had to reregister.  I remember, for example, wonderful information from StrayDog.  If you are still out there, a special hello to you.

I am at my wit's end here.  I had 7 back surgeries, with the prognosis being that I have "failed back syndrome."  In other words, my fusion didn't "take."  I was told that insted of having another very risky surgery (I'm not sure why they felt it was risky other than my hardware became infected from the fusion, a very serious infection, and the hardware was removed). 

I had the neuro stimulator installed and then removed.  Now I have an interthecal pump.  I am still taking 2 60 mg. oxycontins per day, and I am still in so much pain that I am despondent.

I was told the pump would really take care of the pain.  At first it seemed to do so:  perhaps it was mind over matter?  Now I am in such pain that I feel I would risk another surgery, but I can't find a surgeon who will perform the surgery.

Any ideas out there?  Do you have good peiods and bad periods with the pump?  I seem to rememeber reading that most people found it really successful.

I'm seeing my pain doctor on Wednesday, and I am at a loss as to what to tell him.  He keps increasing the amount of the pump, and the pump contains dilaudid.  Is that the best med or is there perhaps another med that would be better in the pump?

I know I have asked a lot of questions here.  Any information or encouragement here would be so very helpful to me that I can't even describe it.

Thank you everyone and I hope all of you in pain are still managing to have some joy in this holiday season.

All my love to you all.

Riccardo

Posted 12/19/2010 10:41 PM (GMT -5)
Hey Riccardo oh, I am so sorry to hear that you are not doing well at all with your pump. Believe me if the dr knows pumps he can make a cocktail with Dilaudid and other meds and get your pain level down, but he must understand medications too that work together well. What strength of Dilaudid do you have in your pump, meaning the concentrated dose, I have 37.5 mgs of Dilaudid in my pump and I am receiving 21mg of that in a 24 hour period. This is still considered a low dose for a CP patient too, meaning there is plenty of room for increases. I have Dilaudid, Fentanyl, Bupivicaine and Klonodine in my pump. The Bupivicaine they should never go over 7.3mg because it will cause you to have leg problems which can result in you losing the feeling in your legs and feet. You just need a small amount of that to help the medication adhere to the receptors, thats the only purpose of that drug in the pump. Some drs think it helps with pain and it does not and they jack up the dose and the patient is falling from losing the feeling in their legs and feet. I would have to dig in my papers and I do know where the printout is if you need my entire dosage of meds in the pump. Please don't give up on your pump. I will tell you that your dr can either make your pump a success or a failure. My first dr that had my pump put in only had 15mg strength Dilaudid in my pump and it did nothing for my pain. I complained bitterly the last 2 yrs I was his patient and his comeback to me was that I was on the strongest medication there was and I was at the max. Well, he was totally wrong as you can see with my concentrated dose now being 37.5 mgs.

Let me know any way I can help. Perhaps if your dr is not comfortable increasing your pump he may want to speak with my dr over the phone. She is considered somewhat aggressive with her pump patients, but she knows those pumps and meds like the back of her hand. Most pump drs are now referring their patients to her. Take care and ask any questions you may have.
Posted 12/19/2010 11:08 PM (GMT -5)
Dearest StrayDog:
om
Thank you so much for your reply: just knowing someone cares means a lot to me. Sometimes I just feel I'm at the end of my rope, but I continue to believe that the pain can become manageable. I have had some very good days, and I have to think of those when I am feeling the way I do now. I believe my Dilaudid dose is quite a bit lower than yours, and I don't think there is anything else added in it. My doctor has bumped it up several times, and I believe he told me last time I was nowhere near the maximum. I believe I am at 20 (I think that was the number). One question I have is about side effects: does an increased does of this cause tremors or extreme fatigue? I just started taking Lyrica for the neuropathy in my feet, and the extreme fatigue coulde be coming from this.

Could you give me the name of your doctor, or is that not permitted on this forum. By the way, my doctor told me he was on the Board of the company which manufacturers the pumps, so I believe he is very knowledgeable about them. I will tell you his name if I can. He is a wonderful man and really seems to care about me. He feels another surgery on my back could be catastrophic, but I keep wanting to go in that direction since I always want quick fixes. It is now 14 months, and things aren't getting better.

I guess I assume that because my fusion didn't take, it would be easy to just go in and make it take. I guess it isn't that simple, right?

Thank you so very much for caring and sharing your information with me. I look forward to hearing from you again. And it seems that you are doing well with your pump: I am going to be optomistic that with patience, it will work for me as well.

With much sincerely and love. Riccardo
Posted 12/20/2010 6:56 AM (GMT -5)
Oh Ricky,

Please be careful about another surgery. I too have a failed fusion and one Dr wants to do more surgery, the others DO NOT. It all depends on who is going to make the money on the surgery and who is not (at least for me). I'm NOT willing to do that at this point because I don't want to chance making things any worse.

Please consider what this Dr said, especially since they are willing to work with you and the pump. I would consider a pump with no problem, but it has never been offered. I have been offered the SCS, but PM says NO WAY and that it wouldn't do any good at all.

......nothing like a little conflict between dr's.........

I wish you all the best!
Posted 12/20/2010 10:28 AM (GMT -5)
Ric I just got on here for a second, is your email address listed in your profile, if not put it there and only members can view it. I am babysitting my grandson, he will be going home later in the afternoon. I will be glad to give you some more info via email. I will do this later in the afternoon when the little one is gone. So you think you have 20mg of Dilaudid in there you should really have a cocktail mixture and I will give you the stuff in mine with the amts via email. No, you can possibly be a tad drowsy when an increase is done this should last no longer than 2 days max. Never has happened to me. I am betting the Lyrica is causing these problems you speak of. Talk to you later.

Hang in there.
Posted 12/20/2010 3:44 PM (GMT -5)
Dear StrayDog:

Thank you so much for your post. I just edited my profile to show my email address. Let me know as soon as possible if I didn't do it correctly. I would LOVE that information about the pump as I am seeing my doctor Wednesday morning.

Thanks for caring and I send love and healing thoughts to you.

Riccardo
Posted 12/20/2010 3:52 PM (GMT -5)
Dear Retired Mom:

I had the SCS for about 4 months -- did absolutely nothing for me. The day it was taken out, the intrathecal pump was put in. At first it seemed miraculous, then NOT. But StrayDog is giving me hope that it just needs to be adjusted upwards in terms of the amount of medication being delivered. I do believe my doctor told me I was no where near maximum, so say a prayer for me that on Wednesday he will increase the med and give me some relief. I am in so much pain now, but just the confidence that there is hope makes it better.

Love

Riccardo
Posted 12/20/2010 8:40 PM (GMT -5)
Ric will be sending you an email in a couple of minutes.
Posted 12/20/2010 10:02 PM (GMT -5)
Anxiously awaiting your news.

Thanks so much for keepimg me in your thoughts.

Ric
Posted 12/21/2010 4:29 PM (GMT -5)
Ric I finally got an email together and sent to you, hope it went to the right place. it took me a bit, I fell asleep after keeping my little one all day. I always forget how much it takes out of me when I keep him all day, lol. It is ok though, worh every minute of time I get to spend with him.

Take care.
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