Gall Bladder Fiasco Continued and hopefully the Final Chapter!

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The first part of this story can be found here https://rsdadvisory.com/2013/05/18/endoscopic-retrograde-cholangiopancreatography-52113-due-to-gall-bladder-removal-fiasco/ shared May 18th. I had my ERCP that showed I had Gall Stones hanging out over by the piece of Gall Bladder that was adhered to my liver since March of 2012 when I originally had it removed. The test also showed the lining of my stomach and surrounding areas were severely inflamed. I was given another diagnosis of Gastritis. So of course I waited to see the surgeon again and get my surgery date scheduled. It was scheduled for July 10th, 2013. 1 week ago today!

The surgeon told me that he would try to remove it first like the last time. I would have 4 small incisions. If he couldn’t get it he would have to do a larger cut. I was scheduled for a Laparoscopic Completion, Cholecystectomy, Possible Open, Possible Cholangiagrams. I signed the forms! I had to arrive at Mercy General Hospital at 5:30 a.m that morning for 7:30 a.m surgery. The surgeon told my husband to give him 4 hours, but that he could be done in an hour and a half, but not to worry until the 4th hour. I headed into the OR.

Now I have to laugh about this because I felt my hand zing and then zing again. They were putting me to sleep! But I didn’t go to sleep. So the Anesthesiologist ask me what I did for a living and I went on to babble about RSD/CRPS awareness, educating, working for the Power of Pain, I just chatted them right up and I know they were waiting for me to go down, even gave me more a few seconds or so before, I felt it. I remember looking off and thinking I’m going to go to sleep now and started to say it, but then I woke up in recovery with worse pain than the first time.

TwinkleVMercyGeneralJuly102013

I still have swelling, a lump above my top incision that hasn’t gone down yet. When my doc called me the day after my surgery to check up on me, I told him about it, he said it was because that’s where he beat me up the worse. Funny! I laughed! That is where he had to use the tools and manipulate inside me to peel that piece off my liver, he said it should go down in a few days. I hasn’t yet though. I tried to drop the pain medication yesterday and switch to OTC NSAIDS but when I woke this morning I was hurting so bad from the top incision/lump to the side ones. A feeling of being inner bruised. Understandable really. So I’ve switching back and forth from Norco 10/325 to 4 OTC Ibuprofen. The Ibuprofen will help the inflammatory more than Norco will. Tylenol doesn’t touch that type of pain for me.

I was also mentioned to me that I have Crohn’s Disease. It’s a lot to process. My Gastrointestinal problems have become so bad that it seems the likelihood of internal CRPS is more my situation. I’m not going to mention all the symptoms right now, I’ve mentioned some of them in my group, on my facebook timeline, I just really need to find a doctor, a GI or Internal Medicine that is educated in RSD/CRPS, not one who has only heard of it. That was my experience with this surgery, a few heard of it, no one “knew” about it. My own primary doesn’t know “about” it. I had to educated him with just pieces as there is never enough time for it all.

I’m lucky to keep food down, even things to drink, I have to pick and choose carefully, the doc did also send me home with the generic for Prilosec to take a half hour before I eat anything first time each day. I either have diarrhea or can’t potty at all for weeks.

It seems the surgery has eased the pain over under my ribs on the right, but so far the mid back pain and other pain is still here. I had my SCS checked 2 days before my surgery by my Medtronic Specialist. It’s fine!

When the surgeon removed that piece of Gall Bladder it was full of fluid and was growing new tissue. He was able to remove several stones from that same area. The pathology is already back and it was negative for any cancerous cells.

On Monday when I had a follow up to my OBGYN due to inflammation found on my Uterus and the cyst(s) found on my right ovary which is larger than my left side and includes scar tissue as does my lower belly from left side to the entire right from an ectopic and exploratory surgery many moons ago.  I opted for what I believe is called Nexplanon. I could have also tried the Depo or an IUD. Never again to an IUD for that is how I conceived my Ectopic twins. And I’ve tried Depo Provera  and didn’t believe since these were my only options it was right for me. Normally the implant with is a small flexible tube is used as a form of birth control which can last up to 3 years and it stops the menstrual cycle. Yay! It was implanted beneath my inner left arm. The reason I opted for this was that my other option was a full Hysterectomy. This option buys me some time. I am not ready for more surgery yet. If at all. First of all it’s not safe for those of us with RSD/CRPS and secondly repetitive surgeries just aren’t safe for any of us. We always have to decide in the end what is best for us by weighing the pros and cons to it all.

If your doctors aren’t aware of your RSD/CRPS, please educate them. I do in pieces and portions but we only have so much time in each appointment. If need be take information and have it put in your file. In fact, that is exactly what I’m doing for my 24th follow-up with my surgeon and when I see the other’s next, same for them. My surgeon seems really great and caring. To call my husband at home to check on me and then asked to speak with me for a few moments even though I was resting, I respect that. You don’t get that much now a days. I think he will be appreciative, not upset or offended. Not the people should be, yet sometimes they are, especially when the info comes from no medical degree persons like myself. Some become quite offensive, also. They assume we think we’re know it all’s! Farthest from the truth! So I’ll hand off the info which will include more than 1 source and see which one actually has a broader perspective the next time I see him.

While I’m sure it’s happened before, no one from my surgical team had heard of it and no one from my doctor’s offices had heard of it…

Nor from my own communities online and off, family or friends.

I actually gave birth to a Gall Bladder twice! Just different sizes!

So glad it’s over and I’m on the path to healing again.

One down!

~Twinkle VanFleet

CRPS Survivor

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Endoscopic Retrograde Cholangiopancreatography 5/21/13 Due to Gall Bladder Removal Fiasco

TwinkleVanfFleetJPDrainMarch242012This entire ordeal began with my emergency Gall Bladder removal 14 months ago at UC Davis Medical Center in Sacramento California. When I awoke from surgery I learned I had a small internal bleed and that was why a JP drain (Jackson Pratt) was inside my side by a long tube. I also learned that a small piece of Gall Bladder was not removed but no one went into details why. I asked if it would cause me any future problems and I was told it would not. I was sent home days later with the JP drain still attached to my body. At home I was required to measure the blood that had accumulated in the drain bulb, measure it, record it in a log for the doctor and discard the blood into the toilet. I had to do this 3 times a day for 8 days. I could only sponge bathe and stayed in the hospital gowns even at home. I had to pin the JP drain to the gown otherwise it would pull out of my body.

All year long I continued to have pain in the same area right beneath my chest, under the right breast, behind the chest wall, an opening and closing feeling and as it opened and closed a feeling of a fire place poker being shoved in and out.

Everyone thought I was crazy. It couldn’t be my Gall Bladder, I didn’t have one!

Late February of this year I began to have severe pain where the Gall Bladder use to be, I could hardly breathe, I deal with CRPS pain and average a 7 daily, but this pain shot strait to a 10. I thought I was dying! My husband took me to the ER. They didn’t believe it to have anything to do with my upper belly, Gall Bladder either, Xrays showed 2 clips from that Gall Bladder surgery, my Spinal Cord Stimulator (SCS) and it was dismissed as constipation. I’m sure I was constipated too with the meds I take, specifically Suboxone at that time which I took for CRPS pain management the last 3 years, but that’s not what the pain was from. I was sent home with the suggestion to follow up with my primary asap. I did!

He ordered an ultrasound right away. The ultrasound showed I still had stones which was believed to have been inside me since the original Gall Bladder surgery. It also showed inflammation and re growth of tissue as the posterior wall of the Gall Bladder is adhered to my liver.

I was sent to a surgeon. I told him how everyone thought I was nuts when I mentioned the pain being so similar to the original Gall Bladder pain, he said “Well you might be nuts, but it IS your Gall Bladder!” He had a great sense of humor and finally some validation.

In order for him to fix me he will have to cut part of my liver away.

He first opted for an MRI, but since I have an SCS (Spinal Cord Stimulator) I am unable to have one.

Instead he ordered a ERCP.

On Tuesday May 21, 2013 I am having 2 procedures done. The ERCP (Endoscopic Retrograde Cholangiopancreatography). I will be under full anesthesia while the camera is inserted down my throat and for the removal of the stones from my bile duct. If there are no stones found, but they were there, he will still cut the bile duct clean it out and leave a stent or tube behind.

If I end up with Pancreatitis as a result of the procedure I will be admitted to Mercy General Hospital in Sacramento for a few days, if not, I will get to come home the same day if no complications. I also learned that one of the 2 procedures may be rescheduled due to time. I hope not.

This has been going on since late February and the pain while it comes and goes can be so overwhelming even a second trip to the ER 3 weeks ago with an injection of both Toradol and Morphine then Morphine again an hour later didn’t help for 2 hours after I got home.

This needs to be done for me to go on for the actual surgery on my liver. While the stones cause pain, so does the that piece inflamed on my liver.  It’s growing new tissue. It feels like back labor. My right side beneath my ribs throb in a way hard to describe.

I feel like that surgery in weeks or months down the line.

One thing that does bother me a bit is that in my xrays at UC Davis ER in February the clips were seen. In the ultrasound less than a month later they weren’t.

I hope I didn’t spring a clip or two. Kinda funny the way I said it, but not really.

This story will have a continuation…

~Twinkle V.