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Nerves about SCS

RhonRRhon Posts: 3
edited 01/21/2015 - 8:25 PM in Spinal Cord Stimulation
I am thinking about SCSI as an option. I am 30 and suffer from chronic pancreatitis. My dr says they have seen huge success for long term relief in patients with cases similar to mine. I am not sure if my nerves about this come from the thought of surgery and having something implanted into my body, or from General acceptance that yes I am young but I really am sick enough to need this. Probably both. I understand it does not work the same or at all for everyone, but if anyone has some advice or experience they can share I would be forever thankful.

Welcome to Spine-Health

It would be very helpful if you could provide us with more details. So many times we read about members who have different tests and they all come back negative. Isolating spinal problems can almost be like the game of Clue. The more clues and information you provide, the better chances in finding out what is wrong,
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--- Ron DiLauro, Spine-Health System Moderator : 01/22/15 02:26


  • I also have chronic pancreatitis. I know the pain so well that you have with this horrible disease, to say it's excruciating is an under statement. I have always said that words were not invented to describe that kind of pain!!! I also understand the desperation in the search for pain relief!!! To stop the constant nausea and throwing up, fear of eating or just simply not being able to eat, the weakness from malabsorption and dehydration--believe me when I tell you, that I GET IT--every single thing you are going through. Have you had extreme weight loss with this? Do you have a NG tube (feeding tube) now? I had to have one put in 6 times, the longest I had one in was 4 months. Are you also diabetic? I'm type 1.

    Have you ever had the nerves burned (RFA) in and around your pancreas? This did give me a short time of pain relief (almost 3 weeks) before it all came back. If you are diabetic, have they ever mentioned a stem cell transplant to you? I was scheduled for this at IU (Indiana University) but due to a move (Airforce base change) my new dr's said they could handle everything I needed done, which lead to a year of in and out of the hospital w/o having to go through the ordeal of the transplant. My worst attack was 3 straight years long, in the beginning the pain and nausea would come and go, the last year it was constant, which lead to me being in the hospital more than I was home. As far as a SCS, the only things my GI and my PM have said is that being so thin it wouldn't be something I would consider-I figured they meant because it would be obvious under my skin, as it is placed in the tummy or hip/butt area but turns out, I have learned here from another member that a certain amount of fat is needed to help conduct electricity for the SCS. This makes complete sense to me, because as you know experiencing malapsorption due to CP means not enough fat in the body. Does your GI think you are a candidate for this? Are you in pain management?

    Have they done all the tests and blood work to try to find out why you have CP? Mine turned out to be because I carry the SPINK1 gene. At the moment my pancreatitis is in remission, it finally burned itself out.t They tell me it will come back again, so I live with that impending doom kind of feeling. I still have the dull ache in my side just not as intense as I was experiencing, I still deal with daily nausea that I can somewhat control with phenegren, Zofran and an occasional emend if the first 2 do not work. I stick to a very strict diet low-no fat foods only & I do still struggle to try and keep weight on.

    Rhon, I so hope that you will feel better soon, I know how sick you are right now. If you have anything you would like to ask me, please feel free to do so here or PM me, either way. Please take care, I will keep you in my thoughts.
  • Oh my, in a way it is so nice to connect with someone else who understands, but I am sorry you are going through this. I am not diabetic, even though it does run in my family. It appears that there is a defect in my pancreas that I have had since birth that caused my CP. I live on nausea meds, but they have not given me anything for the pain. I did have 2 nerve blocks, one worked wonderfully for a few months, the other did not. So far they are saying I seem like a good candidate for SCS but I have to meet with pain psychologist first. I am so afraid of major surgery but if it will help I will do ANYTHING.
  • Good morning, Rhon, I hope that in some way you are feeling better today but I know when you are this sick how the days and nights run together with little to no relief. Any sleep at all last night?

    Do they know what kind of defect your pancreas has? How soon do you see your pain psychologist? I so hope the SCS works for you, please let me know I am very interested in knowing. You are not diabetic, yet!!! That's great That means your pancreas is still producing enough insulin-mine does not, hence the need for shots several times a day IR & ER insulin. Is it safe to assume you have no necrosis with your pancreas either? Mine is so scarred from years of attacks and pseudo-cysts that it's almost non functional at this point.

    Do you take CREON yet? I would not be able to eat or digest without it nor would I be able to keep any weight on, CREON has been a life saver. If you are to the point of needing a pancreatic enzyme, you should talk to your GI about it. Are you even able to eat? At one point I was considered medically anorexic-I was so hungry but I was afraid to eat. They gave me marinol, which made me eat and it most definitely controlled the nausea. Make sure you try to keep yourself hydrated I would drink Gatorade, even if I could not keep anything down. Gatorade is full of electrolytes that your body looses from being so sick. Are your lipase and amylase levels high or are you to the point where they don't even go up anymore? Mine don't anymore.

    Did they just discover you have CP? Have you had symptoms all your life? Please continue to check in when you feel like it and let me know how you are doing?
  • I go meet my pain psycologist tomorrow morning, and I am oddly only a little nervous. More so about the 3 hour drive to get there in this lovely snow and ice weather we have been having. My pancreas does have what the dr called "honeycomb" type scarring from my attacks. The good news is that it does not appear that the scarring has gotten any worse in the past 9 months. I tried taking enzymes, but honestly they made me feel worse. Within about 45 minutes of taking them my pain would grow so much worse that I couldn't even stand it. I was taking ZenPep. What is CREON? I haven't heard of that. I can eat some now, but usually only once a day or I am risking being sick. I know what you mean about being hungry but afraid to eat! After 3 days my boyfriend MADE me eat something because I was shaking and couldn't stop. marinol? what is that?! I feel like I need to get going on my research! My amylase goes up a little, my lipase goes through the roof! I was hospitalized mid December, and my local hospital almost sent me to Cleveland because they were afriad to treat me it was so high. (talk about frustrating!) I lived on ensure and gatorade for a few months, thank goodness it is not that bad again. I am functioning mostly now, that is how I describe it. I dont really have a life, I do day to day things that I have to, but I am not "living" ya know?
    Looking back I think my syptoms started as a little kid, I would complain that it felt like someone hit me in the stomach. There are foods that I would just say I didn't like, because they made me sick. Dairy is a huge trigger for me. But I wasn't diagnosed until about a year ago.
    Did you see the 4 year old that has the first artificial pancreas? That is exciting news!!
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