Intrathecal Narcotic Pump Trial

Mag 1, I truly am sad to hear how the pump has worked for you. Fortunately I am not thin, I guess as far as the pump is concerned. And while I was in the hospital for the trial, I only required .90 of Morphine and that was it. My pain was cut down more than half. I am some what uncomfortable with the idea of the pump, and making love with my husband, I am so scared of the tube coming out of my spine or something like that. I am going in tomorrow morning to have the permanent pump surgically implanted. I have never done well with any medicine, never. I have too many side effects with the heavy duty meds and what may help me with my severe pain, I am unable to take. I am hoping that the pump works well for me. I have no other avenue at this point except for the pump. I am only 39 years old and pain has crippled not only me, but also my life. The pump was mentioned to me nearly 8 months ago, I had to be absolute certain of my decision. I am uncomfortable with the idea of feeling like a freak just like you. I am so young and I am embarrassed of the shape that I am in. If it wasn't for Grace, I would probably have lost my will to live.

Thanks for letting me know what you did, this helps me to ask my surgeon questions about the pump before he does it tomorrow. It's never too late to back out.

Thanks again

Sheila

I sincerely wish you well.

Mag1

Hi Mag1, it's Sheila again. I just wanted to let you know how my pump installation went. BUMMER!!! I could not believe this when I woke up in Post Op and they told me that the pharmacy DID NOT fill my surgeons request for the Morphine concentration solution. My Neurosurgeon, who by the way is honestly a great, younger surgeon and cares about his patients, just started doing surgeries at this particular hospital and as a matter of fact, I was the very first patient there who had the Trial Phase of the pump done. I am the very first patient to ever have the pump done there. Well, he put all of the hardware in and everything, by the way, OUCH!! And he told me that his Nurse or his Physician Assistant could just come to my bed and put it in after the pharmacy did get the Morphine solution, and I thought I was having that done today. Then at around noon, his nurse came in and said that because of "legalities" that they had to either do that in the Operating Room, which by the way I asked her if they would do and for some reason the answer was a firm "NO", or I have to have it done at their clinic. And she gave me an appointment date of July 21st so they sent me home today and I am confused and also upset. I don't like the term "legalities" in this day and age as far as the medical field is concerned. I didn't get a really good answer from her as to why they couldn't do it today and either she talked her way around this, or I am just being paranoid. So for now, I have a pump full of Saline and that is all. I am so upset and I do not understand at all. If you pray, say a prayer for me. I just wonder what will happen with this pump if something popped up at the last minute and they couldn't fill it and his nurse just isn't giving me the real and true answer. I honestly trust my Neurosurgeon, he is such a kind, caring and compassionate(he's still young and new) individual along with Surgeon. I saw him as I was leaving and he said to me either call me or that he would call me, I'm not sure which one.

More importantly, I am upset because when I went through the Trial Phase it helped me so much, I went from a 10 to a like 4 on the rate of pain scale. So, it really helped me with pain. I can't take the potent oral meds that would give me relief because I can't handle the side effects, I am just "zonked" and I can't stand that feeling. And I did talk to my surgeon about being worried about the catheter coming out and he and the Medtronic Rep both told me not to worry about it, he had done a good many of these and after I woke up he came up to my room and he explained how he "anchored" it in place. So, I know that this would have worked great for me.

Now, here I am, in horrible pain from my spine being jerked around a little bit(not because of a bad surgeon, but so that he could get it anchored well, I am an active 39 year old woman), I am just miserable from the pain of the actual pump, on the side of my belly and I am honestly worried and concerned that I am going to have this thing in me with no medicine in it. And they gave me a binder to wear around my belly and that helps some with the pain, but this pain on the side of my belly is worse than I anticipated. It is honestly killing me. I think I am going to call his Nurse Monday and ask for a script for antibiotics. And he did give me a script for pain meds, but I didn't sleep even 5 minutes in the hospital last night and I don't think I'll be able to sleep tonight here at home either. I am miserable.

By the way, thanks for responding to me. The fact that I have someone to write this down to and then send it to, makes a difference.

I hope that all goes well with you. And if you pray, please remember me in your prayers.

Thanks

Sheila

Hi Sheila,

This is just to let you know that certain things WILL get better!

The belly pain for starters.  Right now it is swollen and has fluid but this will go away.(It hurt me to walk to start but really tight panties help and you have a binder. My Dr said no need for that..Ha)

They do pull you around somewhat but it is good that they anchored it well. I see on the blogs that a lot of folks have slippage of the tubes. This hasn't happened to me although I too am very active.

They screwed up my drugs also. The hospital blamed the Drs and they blamed the hospital!! So what do you do. I complained very loudly but it did me no good. I had to go to the office a week later and have the drugs put in which wasn't too much fun. Then, they programmed me a very low dose as I am so sensitive and I didn't get any reaction for about 10 days.  It was like waiting for the bomb to blow. Of course, I reacted very badly and had to have the med (Dilaudid) removed a few days later.  BUT, it was a shock to wake up and find no pain relief. 

  The surgeon didn't come to see me and I only came across his resident by accident when walking the halls at 4.0am.  He said the drug was in (the chart said so). NOT so. So what do they know?

  However, most of these things are temporary, as with any surgery.  For you there is hope as you seem to be able to tolerate the narcotics.  They even got me Prialt to try at huge expense (fortunately not mine) but I proved intolerant to that too.

  So, on 30th July I get mine removed, but what then??  I already tried the spinal cord stimulator but they want to do this trial again.  Maybe later when I have recovered from this lot.

  I do wish you a speedy recovery and remember the pain and discomfort of the surgery will get better if it hasn't started to already.

  I do find the medical world in general and Drs in particular are quick to tell you all the good things but none of the bad.  If I had had more honest information I would never have had it done and I did do hours of web research  on hundreds of site but nothing prepared me for the reality of the situation. 

  I had 4 spine surgeries but, all those put together don't add up to the trauma of getting the pump.

  Mag1

Hi Mag1. I really feel for you. It sounds to me like you need a whole new set of Drs. It is ridiculous what all you have had to go through. I was fortunate and still am to have the Surgeon that I have. For my first consultation for the pump, he spent 45 minutes explaining it and he is so caring that he told me that he wanted me to wait to make the decision because if any of the bad things that can happen (menangitis etc.) would happen to me, then he could never look at himself in the mirror again. The lady that I talked to from Medtronics told me that there are not a whole lot, but too many doctors that are doing this procedure that shouldn't be doing it. My Surgeon called me this morning early and talked to me about everything. I have to wait until the 21st, but this is for the best for a lot of reasons, especially how sore my belly is, and it would hurt right now to have it filled. But anyway he wants me observed for 23 hours, so I will be admitted that day after I have it filled. He just wants to make sure that pharmacy doesn't make any mistakes and that all is working well for me as far as pain relief.

I truly wish that I knew of a med that could help you. You sound like me-HIGHLY SENSITIVE TO MEDS. That makes it hard. They did have me on a med that is brand new that is very good at pain relief and you may want to mention it to them. It is called Opana ER. But if you are sensitive, make sure that you get the ER dosage, not the full strength dosage.

Well, Mag1, I have a spinal headache so I am going to go. Please keep in touch and I am actually going to mention these things concerning you to my surgeon. He really is a good and caring guy. He is basically a genius, so maybe he can think of something that no one else has.

Take Care and you are in my prayers

Sheila

I am reading your problems with the pump and I am getting a slight chill. I am a 50 year old man in the UK. I have had the trials and my pain score went to 0 (ZERO) for almost 2 hours. I cried like a baby as the last tiem I had a pain free day was in 2001. I am now waiting for the actual op, but here in good old Merry England you have to wait. For me it is a year. Trial last Nov. Pump this Dec with luck and a bed in the correct ward. I was the 4th person to be trailed for this pump. I have had pain for over 40 years and can't wait, but was alittle 'surprised' when watching TV last night with my Wife and there was a man with a device under his skin and I nearly flipped. How far does the pump stick out. At this time I cannot walk more than 2 or 3 steps without help and stopping with the pain, so I use a wheelchair. I need to sleep at least 12 hrs a night due to meds (Methadone etc). and I am now growing breasts (rather painfully might I add) as one of the side effects. So I have to take Male hormone replacements. I was able to get away with 1.4 on the pump in the trial. One thing about the drugs in this country. It will be different in the US I should imagine. Any Opiate based material is very tightly controlled to the extent that sometimes one person does not know what is going on and gets their ideas crossed.

A story - I once went to collect my Methadone from the Chemist and a new person was in charge. In this country if you get Methadone due to addiction you get a script every day and must take your medicine in front of the Pharmacist. They then ask the addict to open there mouths and they look into them and make sure that that have swallowed. I was a day late getting my drugs for pain control and the pharmacist refused as I was a day late.... I asked her to look at the script on the bottles as it was already for collection and asked her what I should do. She informed me that I should, in future, turn up on the day and take the medication in front of her. 900ml of 1mg/ml concentration. I then asked her to tell me what would happen if I in fact did that and she replied that she did not know. I bet anyone on this site knows. I would have died if my stomach was not pumped. It evetually took calls from my GP and the head pharmasist to get the drugs released to me.

I am only trying to say that with the type of drugs that we are dealing with here, that major problems can and do occur when dealing with so highly dangerous materials and maybe something like that occured with not putting the correct drugs into the pump when fitted. The laws surrounding these materials are always very tight and also seem to be changed altered or tweaked on a regular basis.

Hi Philthie,

     First of all, you do have my sympathy. And I need to clear things up by writing you, so that no one else will be so discouraged about the Intrathecal Narcotic Pump. After being admitted for the third time to the hospital for infection, they finally took mine out this past Tuesday. And I need to let you know, that my doctor informed me that the infection was due to the pump being contaminated in the Operating Room. It worked very well for me after they adjusted it once and increased my dosage 20%. Please don't be frightened by my story. These pumps are a blessing for those of us suffering with such horrible pain. I do understand being in a wheelchair, I am only 39 and was just about to chose to use a wheelchair because it was actually painful for my to walk.

     About the pump sticking out....they should give you a binder to wear after the procedure that must be worn for 30 days. I wore mine for the full 30 days and it didn't stick out at all. My husband couldn't even tell that I had it, other than to touch and you can feel it, but it won't stick out if you do wear this after implantation.

     Concerning your fear of this medicine, you need not worry. Remember that the dosage that we require is about 1/300 of a fraction that we need orally. It is going straight into your spinal fluid and the great thing is that there aren't the side effects as there are with the oral medications. So, please don't worry, it's safe. I have been on oral Morphine and Dilaudid both, and these medicines aren't as dangerous with the pump, as they are orally. As I wrote, you require much less of the dosage because it is going straight to your pain.

     Please don't worry because of what happened to me. This is so rare and it isn't something that normally happens. Philthie, take the "blessing" and be free of your pain. I will keep you in my prayers.

     I can tell you that all that I have been through thus far, which has been a whole lot, I am still getting another pump. I have to wait 6 weeks to make sure that all infection is cleared up within my body. What it all boils down to, is that someone was negligent in being sterile or making sure that the pump was sterile. I am not upset with my doctor at all because I don't believe that this had anything at all to do with him.

     Considering the run around that you are getting about oral meds and even with the oral meds, you are in a wheelchair, you certainly owe it to yourself and your loved ones to go through with it. And it sounds to me like the side effects of the methadone is just awful for you.

     Please set your mind at ease about the pump and take the blessing. It truly is a blessing. I am thankful that my doctor is willing to place another pump within me, even though I am sure that this has cost the insurance company a small fortune.

     If you have anymore questions, please feel free to contact me again. I hope that I have set your mind at ease. And just be sure that you remind your doctor about the binder so that the pump will not stick out like mine didn't.  And in case that you haven't heard of a binder, it is something that you put around your waist that will stretch and it pulls you together. It also helps with the pain after the implant. I am so sorry that in England you have to wait a full year. That is ridiculous in my opinion. I only had to wait one week after the Trial.

     Again, I hope that I have helped you and have eased any of your fears.

     God Bless and Take Care, you have hope now.

     Sheila

All I can say to you at this time is thankyou very much indeed. Without knowing anyone personally who has the pump it does feel somewhat like a step into the unknown. But you have now helped, again thank you.

Phil.

Hi Phil and "Mrs. Phil", I just tried to post a comment, but I think I hit the wrong button. I invite you and your wife, as well, to ask me anything if any fears arise or new questions come up. Please feel free to ask. If your wife is like my husband, she will have concerns as well. Please let her know that she is welcome to ask me anything also.

I sure do feel for anyone in the UK suffering from such horrible pain, if this surgery is restricted and if the pain medicine is so controlled that it becomes a hassle. But the good thing is that you will not need much oral medicine after receiving the pump. When I received the pump, they gave me a prescription for Oxycodone because if I have an active day, I did need to take it even  though I had the pump. So, I will be praying they will do the same for you. I will also be praying that you will receive a miracle and that you will receive the pump sooner than is expected.

Again, I invite you and your wife to ask me anything at all.

Blessings to you and your wife,

Sheila

Hi Meg1, it's Sheila again. I was just laying in bed praying for you. I was praying that there would be a solution for you. First of all, before I write any of this, please don't think that I am trying to get personal information from you because I'm not.

I had an idea. I was wondering which company made your pump. I would be willing to ask my Medtronics Rep to see what can be done for you. Like I wrote ealier, no personal information, just general. Like I asked earlier, which company(I think that is what you would call it), is it Medtronics? And she even said that there are too many doctors out there doing this surgery that shouldn't be doing it. You could tell me which company it is, and then I am sure that she would give me her phone number to give to you. I would warn her though that it will be posted on a forum. Fortunately, I have been blessed to have a good, caring Surgeon helping me out and Jody, the Medtronics Rep goes into the OR with him and observes the whole thing. I am curious to know if you received this kind of quality medical treatment and genuine concern. I don't even know you and I am concerned for you because of your pain. Just don't give up hope yet. I will talk to Jody and see if she would be willing to help you out.

Just for the record, I am pretty sure that Medtronics is cracking down about the doctors doing these procedures. Maybe you could get into contact with her and you could share your experiences, and I mean all of them, and I am hoping there can be an end to this "nightmare" for you.

If it was Medtronics, believe me, I can assure you that she would make sure that all of these issues would be resolved. I believe that whatever manufacturer makes your pump, I believe that they need to know the hard time that you have gotten. I wonder if things would have turned out differently for you if you would have more caring doctors and have you ever had a manufacturer Representative to walk you through this whole thing from the very beginning. I have and it has really helped me. My doctor was very good about informing me about all of the things that can go wrong. He told me the signs of if there would be a "kink" and just a bunch of other things.

I can contact Jody for you. At least maybe she could help you to get in to see a Pain Management Specialist that will honestly try to help you.

My heart goes out to you and I will ask Jody about her phone number or how you could contact her without any personal information at all on here.

Meg1, I feel for you and you are in my thoughts. By the way, the medication that I mentioned to you earlier, the Opana ER 5 milligram, I could take that, to where most medications I can't tolerate. I couldn't tolerate the regular Opana though. As soon as it hit my head, I threw up. The other name for it is Oxymorphone and be sure to have your doctor to check into it, because it sounds like you are a lot like me and it could work for you. Also if you go to a Pain Management Specialist, ask them about the $25 coupon that is offered for the medicine. After I used the coupon that my pain management doctor gave me it ended up costing me $76.00, but I was willing to pay it for pain relief. I only had to take 2 of them a day. If you do get them prescribed to you, make sure that you don't eat 1 hour before you take them and don't eat 2 hours after you take them. If you don't follow these directions then they won't be as effective. I will be honest with you, they made me a little "high", but I just dealt with it because I was actually getting some pain relief.

I hope that I have helped you and I hope that I can continue to help you.

Sheila

Hi Sheila,

This is just to let you know that certain things WILL get better!

The belly pain for starters.  Right now it is swollen and has fluid but this will go away.(It hurt me to walk to start but really tight panties help and you have a binder. My Dr said no need for that..Ha)

They do pull you around somewhat but it is good that they anchored it well. I see on the blogs that a lot of folks have slippage of the tubes. This hasn't happened to me although I too am very active.

They screwed up my drugs also. The hospital blamed the Drs and they blamed the hospital!! So what do you do. I complained very loudly but it did me no good. I had to go to the office a week later and have the drugs put in which wasn't too much fun. Then, they programmed me a very low dose as I am so sensitive and I didn't get any reaction for about 10 days.  It was like waiting for the bomb to blow. Of course, I reacted very badly and had to have the med (Dilaudid) removed a few days later.  BUT, it was a shock to wake up and find no pain relief. 

  The surgeon didn't come to see me and I only came across his resident by accident when walking the halls at 4.0am.  He said the drug was in (the chart said so). NOT so. So what do they know?

  However, most of these things are temporary, as with any surgery.  For you there is hope as you seem to be able to tolerate the narcotics.  They even got me Prialt to try at huge expense (fortunately not mine) but I proved intolerant to that too.

  So, on 30th July I get mine removed, but what then??  I already tried the spinal cord stimulator but they want to do this trial again.  Maybe later when I have recovered from this lot.

  I do wish you a speedy recovery and remember the pain and discomfort of the surgery will get better if it hasn't started to already.

  I do find the medical world in general and Drs in particular are quick to tell you all the good things but none of the bad.  If I had had more honest information I would never have had it done and I did do hours of web research  on hundreds of site but nothing prepared me for the reality of the situation. 

  I had 4 spine surgeries but, all those put together don't add up to the trauma of getting the pump.

  Mag1

Hi Sheila,

I hope you are feeling a bit better today and that your spinal headache has resolved.  Fortunately, I never got one of those...yet!

Sorry, I got a little mouse happy last time and sent the same note twice.

Actually, there is nothing wrong with my pump per se; it's my lousy system that won't tolerate any drugs.(Even 600mg Ibuprofen makes me sick sometimes).  However, I will ask my Dr about the Opana Extended therapy when I see him after pump  removal.Only 18 more days until I'm rid of that "thing"!!  Opana is opioid family albeit a mild dose and anything is worth a question.

Dr. wants me to have another trial for a spinal cord stimulator. He thinks it was badly programmed when I did that 3 years ago.  Maybe I will when I recover from pump removal but only if he manages to get the tubes out of my spine.  Don't want to have too much "junk" rolling around in there! I think it could be dangerous.

I do appreciate your concern and love corresponding with you.

I wish you a speedy recovery and success with your meds.

Mag1.

Hi Mag1, my headache is nearly gone and my incision pain is much better!! Just happy about that. Yes do check on the Opana ER and make sure that you get the ER. The regular strength was too much for me and we do sound an awful lot alike. With me, Advil makes me sleepy and Vicodin makes me want to climb the wall, I am so hyper with that stuff believe it or not. Like I wrote though, it will make you a little "high"(the Opana ER), but I am sure that you are to the point that I was with the pain, if it will help, and not have a horrible, traumatic reaction to it, then you will probably just be willing to deal with it like I was. And the 5 milligram is the lowest dose and remember to ask for the coupon. Maybe you could even go online and print one out from their website. If you have a Pain Management Specialist, he/she may have one in their office. It is such a shame that the Intrathecal Narcotic Pump didn't help you, I hate to hear that, that has to be a real bummer. I only have 7 more days until I get the medicine put in my pump-YEAH!! I am uncomfortable though about the appearance of this pump on the side of my belly. My husband is an RN and I don't even let him take care of this incision the way that I have with other ones in the past. It is nasty. But my doctor only put the 20 ml pump in me. I know the only reason he did was so that I can get used to it. He didn't tell me that, but I know that is the reason he put the smaller one in. He told me to get used to this one, and then, when I require more medicine that he will replace it with the 40 ml pump. He is a younger doctor who is married, so I am sure that he is a little more understanding than most about how a younger woman would feel. I am only 39 and I heard that he is only 35 or 36 years old. He told me that he is going to titrate me up gradually because he doesn't want to overdose me. He knows that I don't have the tolerance to opoids like most people do that have severe chronic pain.

I saw one of your posts on the "Bob Englehardt" Intrathecal Pump forum posts in the general discussions and I noticed that you are taking Gabapentin, I hope that I just spelled that right. But anyway, I had to quit taking it because of a few good reasons that I don't know if you would be aware of or not. I placed a post on there for you. Just in case that you didn't view it, I'll let you know in this post.

I was on the same dosage as you, 900 milligrams daily, 300 mgs. 3 x a day. And after being on it for a while I became severely depressed and I had gained over 30 pounds too. I kept praying about all of it and also how severe the pain was in my upper back. And the Gabapentin(Neurontin) kept coming to my mind so I put the medicine in my search engine on the computer, I think through Yahoo. But anyhow, it said that in recent studies they are finding that this particular medicine is actually acting as a steroid on people who take large quantities of it and have been on it for a while. It also said that it caused severe pain in the joints in the back or in the spine, one or the other, I can't remember which one. It said that if taken in large doses over an extended period of time that they also found that some patients exhibited symptoms of one on Steroids concerning the depression and weight gain. I quit taking it and I couldn't believe the difference overall. I am not advising you not to stop taking it, just letting you know that if your pain has increased in your spine, if you have gained weight and if you go through bouts of SEVERE depression, it could be because of that med. I know, I know....what are people like you and I supposed to do? Well, I was so depressed that I was acting like a "psycho" for real. I know that depression is common for someone suffering with severe chronic pain, but I was like suicidal, not to mention that I acted like a raving lunatic when I was angry and I was always sooo hungry, not to mention the horrible, acute pain in my upper back, where I have never had surgery on and have never needed it. I just wanted to let you know about that.

And thanks so much for replying to me, just writing this stuff down helps me.

I sure hope that your doctor will at least try you on the Opana ER 5 milligram. It is totally brand new, as a matter of fact, I am pretty sure that it is the strongest thing out there for people now, so he/she may have never even heard of it and it is hard to find a pharmacy that actually has it. You may have to wait like 3 days if you find no pharmacy that has it and they may have to order it. And you know how they have cracked down on writing prescriptions for narcotics, so he/she may be leary of giving it to you. You might suggest that he/she write a prescription for only like 7 days worth, 14 pills, that way if it doesn't work, then you won't have a whole prescription of them because they do cost a little more than I know that I want to pay for medicine.

Well, I think I am going to go and try to go to sleep.

Take Care

Sheila

Hi Sheila,

Glad to hear that you are doing better.  I was fortunate with my surgery as had no real pain with the implant site other than dragging when walking as it is so heavy,still is but doesn't hurt now.  Tight underpants help initially. After 9 months I have only a tiny scar but have a lot of bruising coming from inside where it presses right into my skin, not painful though I do wonder if it might cause an an ulcer eventually.  Not to worry it will be GONE in 16 days now!! Yeah!

I take Gabapentin(Neurontin) as I have CRPS which causes a lot of burning especially in bad flares. I have tried being without it several times but the burn got worse. I can only tolerate 900 mg a day as it does mess with my mind and I do rather crazy things. (I think it gives me a form of attention deficit disorder.) I know a lot of folk take huge amounts of this drug; I shudder to think what their minds must be like.

Take care and get better. I do envy you being able to take narcos! One thing I will never be is a drug addict!!

Mag1

Hi Mag1, so glad to hear that you have your mind made up about getting the pump out of you since it didn't work for you. It isn't for everybody, that's for sure. And about being an addict, it can happen to anyone. Only by the Grace of God, it hasn't happened to me. I beleive that anyone on narcs and then decides for the pump, isn't seeking a "high" or a "fix" I truly believe that they are searching pain relief. I myself probably could become one, but by the Grace of God, and only by the Grace of God, I couldn't tolerate the potent meds. Personally, I judge no one, no one at all.

Like you, I was shocked that the incision sight of where the pump was placed caused such acute pain. I guess it would though, I have 31 staples at this sight. The incision in my back, I don't even notice. I just can't wait until this pump gets filled because I truly am suffering and enough is enough. I never thought that God would have even allowed such a fate for me. But I am going to go to school for many, many years to become a Christian Psychotherapist in private practice. I suppose that the only way that I would have even opened my mind up to this is by the amount of prayer I have been doing through this, and the fact that I can never return to a physically demanding job again and I do want to help people.

Well, happy to hear you're getting yours out and happy to hear that mine getting filled is only days away.

Take Care,

Sheila

Hi Sheila,

Thanks for yours. I am appalled that they "sliced" you so much.  31 staples, that is major surgery!  I had  no external stitches, only some "steristrips" which fell off in about a week.  Let's hope I fare as well with the removal!

I'm rather concerned that they won't be able to get all the tubes out but we'll see.  If I complain enough i may happen.

Mag1

Hi Mag 1, it's like 4:00 in the morning, OH THE PAIN!!!! I am just miserable. Yeah they sliced me up pretty good. 31 staples where they put the pump in at and 22 in my spine. The one in my spine isn't that bad,I don't really notice that at all, but like my doctor said, that didn't surprise him because I have been through so much.  I have this HUGE spinal fluid leak going on. It happened with the Trial Phase part too. Monday morning and I will get the meds in the pump, get the staples out and get a stitch or two for the spinal fluid to quit draining out of me. It's such a bad leak that I have to keep a washcloth there all the time. The flud is clear and odorless so it isnt' that nasty, but just constantly getting wet is getting on my nerves.

I think the reason I got sliced so much is because I am so young and my doc knows that I will have this thing for the rest of my life, I'm not quite sure but I do trust his judgement. I am just so thankful that this surgeon actually helped me out. No other surgeon wanted to touch me after the second surgery....long story, I should have sued, but I just forgave him. Forgiving was easier for me rather than staying bitter and clinging.

Hang in there Mag1, I just hope they can find something for you to help with your pain. Narcs aren't a good thing, but hopefully they can find something for you. I am praying for you girl.

Take Care

Sheila

Hi Sheila,

If I remember rightly,today is the day!!! Hope it wasn't too painful getting your first meds.  If the Doc is any good at it it hardly hurts at all, I was agreeably surprised.

Only 9 more days until I lose my "monster"!  Found out they won't let me have it done with only a local!  Bummer, I hate being put to sleep : they can do what they like when you're gone and  then get a nasty shock when you wake up; but if they insist well...I guess I can't argue too much, at least I have prior knowledge this time and can ask all the relevant questions.

Mag1

Hi Mag1, no good news today either, I am so upset and crying, yet thankful that I didn't get Bacterial Menangitis. I was pretty sure that it wasn't normal to be in as much pain as I was in where they implanted the pump in my belly. When I went in today, and I didn't get to see my doctor, but luckily I had a very kind and compassionate Physicians Assistant that took care of me. He looked at it and knew that it was infected. So, him taking out the staples, which by the way, unfortunately my doctor was "trigger happy" with the staples, there were TOO MANY!!! The pain was excruciating(hope I spelled that right). And because it is infected, he was unable to even put the medicine in. I was kind of glad to be honest with you, I knew that it would hurt horribly if he would have injected me with a needle. But anyway, he told me that if he were to place the medicine in the pump that the infection would go into the pump and then it would go throughout my body and I would have to have this pump that I have in now, replaced. BUT THAT ISN'T THE BEST PART, IT GETS BETTER!!!! By the way, I am being sarcastic. When I woke up Friday morning, the "butt" of my sweat pants were basically drenched, and I am not exagerating either. I had to place a washcloth at my incision sight because there was so much leakage and I had to keep replacing the washcloth every 2 to 3 hours because there was so much fluid coming out of me. I had been like that up until last night. And he wasn't able to take all of the staples out at the "op site" in my lower back. Here it turns out that I have an infection there also. I couldn't believe it at all!! I had no pain at all there, not even after surgery. He explained to me that the infection that I have at the op site in my belly is more external than the infection in my op site in my lower back. He had to place 5 stitches in my lower back op site to get it to quit leaking, and I guess it is basically miraculous that I do not have Bacterial Menangitis because of all of the Cerebrial(spelled right?) Spinal Fluid mixed with the infection that is internal in my lower back op site. He gave me a script for Oxycodone and he was generous with them, and I greatly appreciated that. Plus, I am on Keflex for all of the infection. So, I have an appointment the 31st to have the medicine placed in my pump. And he told me to take 2 of the oxycodone 15 millgrams 30 minutes before I go back in because he said that having the staples removed, along with the stitches, will be like torture. At least he was completely honest with me. I about came off of the table when he put the stitches in me. He numbed me really well, but because of the infection, it was horribly painful. Plus the fact that the staples, which I think there are too many there also, combined with the infection made the pain of the stitches all the worse. And yes, it was spinal fluid, it was colorless and odorless.

That is my luck!! Although I am so thankful to God that I didn't get menangitis. Of course I would be the one to have the side effects, like I just wrote, that is my luck!! I am so thankful that it wasn't a whole lot worse. I am trying to be optimistic....still. Fortunately, I thought that I was getting a bladder infection 2 days after I had gotten out of the hospital, and I took 3 antibiotics. I have those on hand because I have Mitral Valve Prolapse and I have to take them before I go to the dentist. I don't like to think what the outcome could have been if I wouldn't have taken them.

Also, no one told me before I left the hospital that I wasn't supposed to keep my op sites covered. I can't even believe this about the infections!! I just can't. He told me that I shouldn't have put dressings over them every day. I took a shower every day, plus I used peroxide 3 times a day. I took very good care of my op sites, but I guess that I wasn't supposed to keep "dressing" them. He told me that it causes infection.

So Mag1, you are getting yours taken out the day that I am getting the medicine placed in there. I swear that if I could handle being "doped up" on pain meds, that I wouldn't have had this done. But I can't take that "buzz" feeling from the narcotics, I really can't. I know that it will get better, but it is upsetting. I am allowed to take 2 of the pills every 4 hours as needed, and I have but I am sooo sleepy I don't like this feeling at all.

Well, I have to go and lay down because I guess I have to take it pretty easy. I am glad for you that you are getting yours out. But what will you do for your pain? Have they come up with a solution for you? Did you mention the meds to your doctor that I told you about. The ER's really help a ton with the pain, and they won't mess your head up as horribly as the regular ones.

Alright girl, you hang in there and so will I.

Take Care Mag1 and I want you to know that I greatly appreciate you replying to me, it helps to get this out. Believe me, I have cried so much today.

Bye Bye

Sheila

Hi Sheila,

You poor thing, what a nightmare! Yes, very lucky not to have developed meningitis.  I hope the infection clears up quickly for you.  You need those meds in you I'm sure.

Perhaps this might be the time to think about another Dr?? Don't know your situation.  Around here they are "ten a penny" and most of them aren't worth that much.  I did hours of reearch before my surgeries and ended up going out of state the first time around.  Then the second lot I went a couple of hundred miles to get a competant surgeon.  Still no one here I'd trust, certainly not the one that did my pump, even though he is a neurosurgeon, if I had to have major spinal done again.

Only a week to go abd I'm free of the "monster".

Take care, get better soon.

Mag1

Hi Mag1, I am finally doing better. I had to be hospitalized and I just got out of the hospital. By the way, I do trust my doctors and I do travel 2 hours to go to them. The doctors where I am from aren't good at all. I hate to even let something like that be known, but it's so true. The doctors that I go to are ranked in the top 5 in the nation. None of this was their fault, or better yet, my doctors fault. Of course I would be the one with the complications, that is just my luck. It was the hospitals fault about not giving me to proper instructions before I left the hospital. I felt that there were too many stitches and I even brought this up to him. but he did have a good reason for doing it that way. Unfortunately, I don't remember right now what they were, these pain meds are hard on my brain.

What ended up getting me hospitalized is that even after the Physician Assistant put the 5 stitches in, I woke up at 2:00 in the morning from severe pain and when I got up, I noticed that I was drenched again. CSF(Cerebrial Spinal Fluid) had started leaking badly again, plus my temp was up. I prayed and prayed that it would stop leaking, but it just kept on flowing and my husband is a Registered Nurse and when he noticed it when he woke up, he called off of work and demanded that I get ahold of my Neurosurgeon. I guess that first, you need to be filled on the fact that I hate being hospitalized. So, I emailed him instead of calling him and believe it or not, he called me like 5 minutes after I sent the email. He told me to get straight to the ER and that he would meet me there and to pack because the least amount of time that I would be there would be 1 and 1/2 days.

Well, by the time that I got there, my temp was up a little more. And they took blood cultures and one of the doctors on that Neurosurgeries team did what I considered torture. He had to take the staples out (there was an infection there so that was a killer), plus he had to take out the 5 staples that the Physician Assistant placed in there the day before. Then he had to numb me, but it still hurt because of the infection, and place new stitches that were super tight in me. They kept giving my shots of Dilaudid and plus I had taken my own meds (Oxycodone 15) even before I had gotten there, so I was pretty much "snowed".

Then I was sent up to my own room and I had to lay flat for the next 3 days. The only time that I was permitted to get out of bed was when I had to go to the bathroom.

But, now I am on the mend. And right now I am not feeling so well, so I need to go and lay back down. I will feel you in on the rest later.

Take Care

Sheila

Rest and get better.

I get my monster out on Wednesday!! Yeah!

Mag1

Hi Mag1, I am glad to hear that you are going to get your pump out Wednesday. I'm sure that you're excited. Do they know what they're going to do for you for pain though? I can not even imagine what it would be like to be stuck in severe chronic pain. I have been wondering if this will happen to me or not. I wonder if this whole pump thing won't be for me also, just like you.

I sure do hope that they come up with some sort of a solution for you.

Well, I still don't feel very well so I am going to go and lay back down.

Take Care

Sheila

Hi Mag1, I was just wondering how you are doing now? I hope you are doing better and feel better. I was just wondering, keep me posted.

By the way, they finally got the medicine in my pump and I haven't noticed much of a difference yet. Well, let me know how you are doing.

Take Care

Sheila