A new update
First, I hope this post finds you all well, or at least on the road to strength and wellness. Many of us had the WLS to improve our lives and health, who would have thought these problems would endure. Whether it is due to unforseen complications or bad doctoring, in the end, getting back to full health is still the goal and finding good friends to support us along the way, especially ones that can understand what we are going through, can make all the difference.
I think the last time I left off, I had my spinal cord stimulator re-implanted at Cleveland Clinic. I started having some really bad mid/lower back pain, not like I hurt my back or pulled something, but sharp, pinching pain. I can't see anything myself back by my incision, so I was running my hand along my incision and I could feel a raised area that felt like a wire popping up! I ended up taking that midnight train to Cleveland, and heading right to the ER there. I spoke with the neurosurgeon's PA, let him know what was going on and that I was going to the ER. The ER doc was fabulous, they were very busy, but I swear he was in my room 10 times to check on me. They did some tests, imaging, and the neurosurgeon came down to the ER to check it out. I was in terrible pain, but my veins are so terrible at this point that they couldn't get an IV started...you know your veins are bad when they can't start an IV at Cleveland Clinic ER!! Let me just say that an IM injection of pain med was almost more painful than the pain itself...eeeek! So, after evaluation, they realized that one of the wires from the lead to my spinal cord stimulator is popping up and being pinched between the lead and the skin, it's like being pinched from the inside according to the doctor, and I can say it is true, that's what it feels like. The wires have lost their anchor, stimulator still works, but I am still having zinging moments with movement, and I wonder if it has to do with this wire popping loose. Here is the ironic part, there's always irony, right?...the only way to solve the problem is to go back in surgically and re-bury the wire under the muscle because I don't have enough FAT to anchor it too. I have to say, when the surgeon said this, I was at a loss for words...there aren't any times in my life, pre-WLS, that I was ever told I didn't have enough fat. As you can imagine, the surgery is invasive, and extra painful because they would be cutting muscle, and has all the fun parts of surgery for me (anesthesia anxiety, etc...) So, for now I am holding off to see how long I can withstand the pain before pushing the surgery button. I am also having a hard time using the device because of the variances in where it is "buzzing" me and the sudden changes in intensity that are happening with movements.
I also went back to Cleveland and had another EGD, I was still having trouble swallowing and feeling like food was stuck. My GI in Cleveland did the EGD, a normal esophagus should be around 20mm, mine was narrowed down to 9mm. He dilated the esophagus to 14mm, and I am going back in October for him to open it up the rest of the way. When it is that narrow, it would be dangerous and risk perforation/bleeding to try and go from 9mm to 20mm in one EGD; so that's why I am going back for the second time.
I have had several more ER/hospital stays...always a fun-fest. My primary is at St. Alexius in Hoffman Estates, a bit of a drive to go to the ER (25 mins), but knowing that my doctor is there is comforting to me. I did have one really nasty ER visit, the nurse was awesome (she has taken care of me before, so she understood what was going on), the doctor on the other hand was ridiculously bad. I'll make a long story short...she didn't listen at all, assumed that since it was my second ER visit in 3 months that I was nuts AND a drug-seeker, fabulous! I just want to put this out there for any healthcare providers that may read these blogs/posts (keep in mind I am a healthcare provider myself): As a provider/care-taker, you must treat each patient as a person, not a disease, not a symptom. Consider what a patient is saying, really listen; don't put a label on a patient because you are jaded. I think for every 100 patients you see, maybe 1-2 have bad intentions, so please don't punish the rest, better yet, don't punish any of your patients, they don't deserve it and you are there to care for and treat your patients, not judge them. As a final word of advice for ER docs, especially new grads; if you come out of medical school with blinders on and tunnel vision, the ER is probably the LAST place you should spend your career. I'm getting off my soapbox now; but those of you that are suffering, you've probably been there and felt this, so I just feel like it's worth saying and putting it out there as an awareness. I know there are a lot of healthcare providers on here as patients, and I think it's time to speak up for our patients and stop being scared, and most importantly, speak for ourselves and advocate for ourselves.
I think the last time I left off, I had my spinal cord stimulator re-implanted at Cleveland Clinic. I started having some really bad mid/lower back pain, not like I hurt my back or pulled something, but sharp, pinching pain. I can't see anything myself back by my incision, so I was running my hand along my incision and I could feel a raised area that felt like a wire popping up! I ended up taking that midnight train to Cleveland, and heading right to the ER there. I spoke with the neurosurgeon's PA, let him know what was going on and that I was going to the ER. The ER doc was fabulous, they were very busy, but I swear he was in my room 10 times to check on me. They did some tests, imaging, and the neurosurgeon came down to the ER to check it out. I was in terrible pain, but my veins are so terrible at this point that they couldn't get an IV started...you know your veins are bad when they can't start an IV at Cleveland Clinic ER!! Let me just say that an IM injection of pain med was almost more painful than the pain itself...eeeek! So, after evaluation, they realized that one of the wires from the lead to my spinal cord stimulator is popping up and being pinched between the lead and the skin, it's like being pinched from the inside according to the doctor, and I can say it is true, that's what it feels like. The wires have lost their anchor, stimulator still works, but I am still having zinging moments with movement, and I wonder if it has to do with this wire popping loose. Here is the ironic part, there's always irony, right?...the only way to solve the problem is to go back in surgically and re-bury the wire under the muscle because I don't have enough FAT to anchor it too. I have to say, when the surgeon said this, I was at a loss for words...there aren't any times in my life, pre-WLS, that I was ever told I didn't have enough fat. As you can imagine, the surgery is invasive, and extra painful because they would be cutting muscle, and has all the fun parts of surgery for me (anesthesia anxiety, etc...) So, for now I am holding off to see how long I can withstand the pain before pushing the surgery button. I am also having a hard time using the device because of the variances in where it is "buzzing" me and the sudden changes in intensity that are happening with movements.
I also went back to Cleveland and had another EGD, I was still having trouble swallowing and feeling like food was stuck. My GI in Cleveland did the EGD, a normal esophagus should be around 20mm, mine was narrowed down to 9mm. He dilated the esophagus to 14mm, and I am going back in October for him to open it up the rest of the way. When it is that narrow, it would be dangerous and risk perforation/bleeding to try and go from 9mm to 20mm in one EGD; so that's why I am going back for the second time.
I have had several more ER/hospital stays...always a fun-fest. My primary is at St. Alexius in Hoffman Estates, a bit of a drive to go to the ER (25 mins), but knowing that my doctor is there is comforting to me. I did have one really nasty ER visit, the nurse was awesome (she has taken care of me before, so she understood what was going on), the doctor on the other hand was ridiculously bad. I'll make a long story short...she didn't listen at all, assumed that since it was my second ER visit in 3 months that I was nuts AND a drug-seeker, fabulous! I just want to put this out there for any healthcare providers that may read these blogs/posts (keep in mind I am a healthcare provider myself): As a provider/care-taker, you must treat each patient as a person, not a disease, not a symptom. Consider what a patient is saying, really listen; don't put a label on a patient because you are jaded. I think for every 100 patients you see, maybe 1-2 have bad intentions, so please don't punish the rest, better yet, don't punish any of your patients, they don't deserve it and you are there to care for and treat your patients, not judge them. As a final word of advice for ER docs, especially new grads; if you come out of medical school with blinders on and tunnel vision, the ER is probably the LAST place you should spend your career. I'm getting off my soapbox now; but those of you that are suffering, you've probably been there and felt this, so I just feel like it's worth saying and putting it out there as an awareness. I know there are a lot of healthcare providers on here as patients, and I think it's time to speak up for our patients and stop being scared, and most importantly, speak for ourselves and advocate for ourselves.
Jules RNY 10/30/2007
I just want you to know what you said was beautifully put... I have run across a lot of vitriol sharing my struggles because people don't want to hear the bad things that can happen after wls. I didn't have the catastrophic issues you did. As I said in a previous post, and I don't know if you remember that we did talk once in awhile, I do apologize that I misread some things... I only wish the best for you, Julie, and admire your bravery and strength and courage, going through not only what you have gone through but telling your story in hopes of helping others.. Hugs, Lisa
Lisa,
I do remember you, and no apologies needed :) I'm a believer that things do happen for a reason/purpose, even if it's wrong, and it would all be a waste if I can't at least find a way to help someone else, or just put myself out there as a resource, or just an ear for someone who needs a listener. Thank you for your words, it means a lot to me!
Hugs back,
Jules
I do remember you, and no apologies needed :) I'm a believer that things do happen for a reason/purpose, even if it's wrong, and it would all be a waste if I can't at least find a way to help someone else, or just put myself out there as a resource, or just an ear for someone who needs a listener. Thank you for your words, it means a lot to me!
Hugs back,
Jules
Jules RNY 10/30/2007
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