Gastric Pacemaker Surgery

My name is Alicia and I just had my gastric pacemaker placed only 3 weeks ago. I had quite the battle to be approved for this surgery. I was wondering if anyone would share post-op experiences with me.
I have been diagnosed with iatrogenic gastroparesis for 4 years but didn't began to go down hill until November of 2007. I lost over 40 lbs and suffered from chronic dehydration and being chroincally malnourished. I was vomiting every day and got to a point where I was living on clear liquids and broth with the occasional cracker. My doctor's wanted to put me on IV TPN and fluids but I am very stuborn and didn't want to have a porta cath...so I just tried to make until I could have the pacer surgery. I have no veins and that was to be the only option. I live in Tennessee and could not find a local (or even close) surgeon that wouldn't take over 6 months to a year for an appointment only. Honestly I was deteriorating to rapidly to wait that long. I found a doctor that would do the surgery in PA by my own countless research . I spent 9 days there and now I am back home and on the mend. I had the pacemaker placed on May the 28th.I just need some help to understand what to expect post op if anyone has had this surgery. The day after surgery I finally stopped vomiting, for the first time in months! I am very slowly working my way back to real food again. I am having acute abdominal pains in my stomach that honestly feels as if the pacer is shocking me and I can not pinpoint anything that will start it or stop it. I am just hoping that you may give me any insight into this matter. Anything will help.

By chewy1
Posted June 18, 2008 at 6:39 pm

Alicia,
I don't have the pacemaker but did want to recommend that you contact Char when she is able to be back online. She is currently in the hospital.
Char has had a pacemaker for several years. She is just a little younger than you and is also persuing a nursing degree. Oh...and she's from Tennessee too.
Sounds like you two might be a big help to each other.
Judy

By Char
Posted June 18, 2008 at 7:18 pm

Alicia,
Welcome to the great place. I have had progressive idiopthic gp for almost 7 years. I have had a pacer 5 years now and love it. I still have nausea, and have really bad spells, but it is all so much better with the pacer. If it gets turned off some how I get so much worse. The shocking feelings you are haveing are the pacer. They can be uncomfertable, you are probably feeling them either because of the placement on the pacer of your settings. It can take a while to see a lot of results, but that's great if your throwing-up seems better. I'll be happy to answer any question I can,
Char

By Adance
Posted June 20, 2008 at 2:02 am

I have soo many questions to ask you. Just let me know when you are available to chat? I finally know that I do not have to stand alone in this. Just you being here means so much to me!! I can't wait to be able to have a real conversation.

By michdey
Posted June 20, 2008 at 1:48 pm

Char et al,

I had my surgical consulation yesterday with Dr Borazzio in VT and the surgery is a go!! It is scheduled for July 23rd and he said I would only be in the hospital overnight! He was very nice and explained everything thoroughly to me. He wants me to have a picc line placed again for surgery because my veins suck but other than that, it should be a piece of cake! I'll keep you updated on my progress.

Michelle

By Adance
Posted June 20, 2008 at 2:18 pm

CONGRATULATIONS!!!! I am so happy for you, this is a step in the right direction for you. Just think...you can only get better! Stay positive. If you have any questions about the surgery or post op care please ask, I am here for you. I can only hope that you have as good of results as I have had so far. I HAVE NOT VOMITED since the day after my surgery!!!!! This has been life changing. You need to take it slow post op, I didn't follow instructions because I am hard headed and hate for people to wait on me--but let them. You have the right to take it easy and you have to heal. Because I was so stubborn I now have a seroma but I will be ok, it did make me realize that I can't do all and I am only 3 weeks and 2 days post op. Yet again...I am so happy for you---this is going to be a new chapter in your life and you will be on the road to being normal again (if we can even be normal). Keep me posted
Best wishes, Alicia
I am praying for you!

By sprite
Posted June 20, 2008 at 2:43 pm

I think it will literally take a couple months until you can really tell. I always want things to go quicky too and I've had to learn and at my age... you'd think I would have patience :):):)

I have a friend who said the magnets saved his life; but, like me, it is more about absorbing our medications for Addison's Disease (which can be deadly itself).

But I saw the pacemaker is now the #1 way to go. I'm not there yet. I'm trying to get off white foods which I'm sure will give me diabetes (I'm hypo and told I would flip but it's been years and I'm still hypo)

I think you need to heal, stay calm, don't push it and let your body adjust. Your entire body has to adjust.

I'm about 50% gastro, but have other diseases... it is very difficult. I lost 40 pounds in four days... seems amazing awful... everything is sagging.

I hope your life improves and wish you joy and happiness!

sprite

By Adance
Posted June 21, 2008 at 5:01 am

I never follow doctors instructions...I know I am in nursing school and should know better but all know is I am to stubborn to let people wait on me (that it is what I do for them). So I had a few smack me on the back of the head...I needed it for the reality of things. I am attempting to be good. I have been typing and not vomiting all nite ( I thought I could take just one bite of a casserole...that did not agree with me at all. I have learned my lesson on taking things SLOW!!! You think you are doing well and down again!

By michdey
Posted June 22, 2008 at 3:54 am

Alicia,

What is a seroma and how did you get it? That is one question I did not ask--what will my restrictions be after surgery? He is not doing it laparascopically--he is going to do an open incision so I know that involves a longer recovery period. But other than the usual restrictions of not lifting anything heavy or bending over alot, what are any other restrictions? Will I be able to drive? My sister was not allowed to drive for six weeks following her c-section and I didn't know if this would be along the same lines--both abdominal surgery. He did tell me that I would need to continue tube feeds for awhile--at least until we know the stimulator is working. I should probably ask Char about that, although I think she is still using her J-tube for feedings. I hope they don't have to continue long because I am having an awful time with them. I have to have a picc line or port placed prior to surgery too so there are not any problems on surgery day with getting an IV started or getting pre-op bloods. I've had procedures cancelled before because they have been unable to get the blood or an IV started and I don't want to drive all the way to VT only to have the surgery cancelled!! I think I am going to ask to have a picc line put in my chest though because it is more temporary and less labor intensive than a port. We'll see what my doctor thinks. Anyway, I am babbling on and on--I can't sleep--can you tell?? I am having awful cramping so I am trying to do things to get my mind off of it and not end up in the ER. I'll let you go for now--maybe I'll try to read.

Michelle

By sprite
Posted June 22, 2008 at 2:00 pm

Hi Advance,

I go to San Francisco and see the doctors there. We own a medical clinic here in Redding, CA (northern part of state) but none of that is substantial enough to handle my problems.

We just saw the motility doctor in SF and he told me everything would be trial and error. Mostly, I have hit the error part. What a stupid way to practice medicine... see what works. Well, not much has worked.

I have not vomited much since I was diagnosed but then my husband reminds me I haven't eaten in four or five days. And white foods do cause hunger pains.

I'll ask him to look up the pacer for you and what to expect. He can access medical sites that none of us can.

He's busy as always so maybe I can get back to you in a couple of days.

Your stomach must be very tender,

Sprite

By sprite
Posted June 22, 2008 at 7:17 pm

Hi, I talked to my husband and he said it sounds like your pacer is near or on a nerve and needs to be replaced. I think you should call your surgeon and make an appointment to have the zingers checked out.

Sprite

By Adance
Posted June 23, 2008 at 5:16 pm

Good day to you,
Is there a certain reason that your doctor is doing an open abdomen procedure? I can imagine that your recovery will be a bit harder. I had mine done with lap. and then just an incision for the pacer to be placed.
I had a 5lb weight limit for a week then a 10 for two weeks then just work back into life. I still am walking slow and I don't go too far of a distance because it is still painful, but that is probably the seroma at my pacer site. My doctor placed the pacer in the lower portion of my abdomen on the right side.
My range of motion is limited, which you don't think about till you try to drive--I had to move my seat totally up and it is hard to turn to check for traffic. I would defiantly take that real slow, other than the turning it is just like being on the couch! :)
Hope you are doing well!

By Char
Posted June 23, 2008 at 7:13 pm

Adance,
Sorry I haven't been around to answers that I can about the pacer, I'm in the hospital for sepsis. It looks like others have answered some questions. I'm still happy to answer questions.
We found out at about 5:00p.m. Friday evening(isn't that when things are suppose to happen), we found out that my pacer battery has died. I had been feeling worse Wednesday night/Thursday morning so my surgeon brought the adjuster when he came by. Of course, since it was a friday evening when we found out they had to wait till this morning to start working on the insurance approval. The last 2 times I had it changed the insurance didn't put up a fight like they did for the first one.
Hope things are going well,
Char

By Char
Posted June 23, 2008 at 7:21 pm

Michelle,
I'm so excited for you. You have a date set and have it to look forward to. Hopefully they want have any problems getting the PICC in for surgery. I'm still on tube feeds, but we feel like that's an improvement from 3 years of TPN. I can't tolerate feeds if my pacer is off or dead. I think the worst part about the whole process is all the patience, between getting approval, waiting for surgery, and waiting for it to kick in. You've already made it though most of that so you are so close. I really hope it helps.
Char

By Doug0626
Posted June 23, 2008 at 10:59 pm

Hi Alicia.

I don't post very much but would be glad to tell you my experience with the pacer. My success with it has been great and maybe not typical. I had the pacer placed April 18th with a robotic laparoscopic procedure. I only spent one night at the hospital following the placement. After two days of being home I started adding more solid foods in and by the end of two weeks I could eat pretty much what I wanted (with in reason of course) keeping an eye on how much fat and fiber I took in. The recovery wasn't too bad. After two days home I started taking two mile walks albeit very slowly and by the end of a week I was back to a normal walking pace. I currently have some discomfort at the placement site depending on my posture (sitting upright is much better than hunched over hehe). For the most part I have been nausea free (never had the vomiting) except for a brief period of five days where it seemed to come back. At my last followup visit they adjusted the voltage on my pacer up to setting number six to hopefully cover flareups. I am a type 1 diabetic in case you were wondering.
Doug

By DonnaBecton
Posted July 1, 2008 at 2:14 am

Advance,

I've just read through so many posts, I don't know where to start. I'm 25 and have had the pacer about a year, although there has been little improvment until the last 4 months. It seems as if I may have to go every 3 months for an adjustment. Please e-mail me with any questions. Best of Luck to you.

Donna Becton
MissDSB@gmail.com

By spitfire
Posted August 18, 2008 at 2:50 pm

Hello,
I had my gastric pacer placed in Feb. at Vanderbilt Hospital. Since I have had the surgery, I have slowely started to eat small amount. I was only able to drink liquids. I have a J-G feeding tube that I use at night and anytime that I feel weak or am sick. If you are having feeling of being shocked, the pacer may be turned up to much. I also had the same feeling, but after awhile the shocking feeling stopped. One thing I would like to tell you is be very careful lifting or pulling on the side were the pacer is. The muscle has been divided, so the pacer can fit down in the muscle in a pocket. The muscle is weak from this. I have learned from experience, and lifted something up, which caused me to have a pain in my side which has lasted a long time to get stronger again. I have had to have my J-G tube changed 4 times since last year. Hang in there, hopefully you will be able to eat alittle to.

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