My Experience: Gastric Stimulator
I had my first gastric stimulator (also called a gastric pacemaker, gastric neurostimulator, and Enterra therapy) implanted at the Mayo Clinic in September 2009. Soon after my surgery, I started writing regular blog posts to share my experience. All together there are over a dozen updates. To make it easier to find and read about my experience as a whole, I’ve compiled all of the posts related to my personal experience with the treatment below.
2 Weeks Post Surgery (10/5/09)
I had a gastric neurostimulator (also known as Enterra Therapy or gastric pacemaker) implanted at the Mayo Clinic in Rochester, MN about two and a half weeks ago. Here's my feedback, so far.
Surgery & Recovery:
The surgical team at Mayo Clinic was fantastic. Dr. James Swain is an exceptionally warm and compassionate surgeon. Everyone from the pre-surgical nurse to the anesthesiologist was thorough, informative, and friendly.
I was given morphine and Tramadol following the surgery for pain. These made me so nauseous I could barely lift my head. I then switched to prescription-strength ibuprofen, which I alternated with chewable Tylenol, and Zofran. Much better.
I would recommend staying overnight in the hospital if you're given the option. I was -- but I chose to return to my hotel room instead. It would have been helpful to be in a hospital bed that first night since getting up and down was really difficult in a regular bed. And a railing in the bathroom would've been exceptionally helpful...
We drove 15 hours from Minnesota back to New York a day and a half after surgery. I do not recommend this. It was horrible. In hindsight, I would've stayed put for a couple more days.
Recovering from the surgery took longer than I expected. My abdomen was really sore and swollen for about a week. It was difficult to do regular tasks, like shower, dress myself, get into/out of bed, etc. Since then it has gotten progressively better. I went back to work after two weeks.
I still can't bend over without discomfort. My husband, who is tired of picking up all of the stuff that I drop, recommends having some kind of "grabber." Shoes that slide on and off easily are also recommended.
Results:
I have not had a single episode of vomiting since the surgery.
The middle-of-the-night and first-thing-in-the-morning nausea has decreased to about once a week. Prior to surgery, it was a daily occurrence.
I have tried a few "new" foods recently with little more than mild nausea, if any at all. Since the surgery, I've eaten a peanut butter and jelly sandwich, steamed Chinese dumplings with white rice, ice cream, Egg Beaters, and french toast. All of these things would have caused nausea, vomiting, or both prior to surgery (especially the dumplings, rice, Egg Beaters, and ice cream).
My portion sizes are still really small (i.e. half a piece of french toast, one steamed dumpling, etc.), since I still feel full rather quickly. But I've noticed that I am hungrier throughout the day.
I'm not yet able to exercise or practice yoga, both of which seem to improve my symptoms, so I assume I'll feel even better once I return to my regular routine.
Overall, I'm very pleased with the results so far. Over the past five years, the nausea and vomiting had gotten progressively worse for me, even more so during the last six months. The device has already put me back to where I was about 2-3 years ago.
I return to the Mayo Clinic in two weeks for a follow up. As far as I know, they'll be adjusting the device settings at this time and I'm exceptionally optimistic that this will further alleviate my symptoms. According to my doctors and the Enterra representative, it can take up to six months and several adjustments to obtain the best results. I'll continue to post updates as things progress.
5 Weeks Post Surgery (10/23/09)
This week I headed back to the Mayo Clinic for my first follow-up visit since the gastric neurostimulator was implanted five weeks ago.
My surgeon, the fantastic Dr. James Swain, gave me the all-clear to start exercising again and get back to normal activities. The device is placed perfectly and everything has healed up nicely other than some residual fluid and swelling, which he says will resolve on its own. He was very encouraged by the fact that I noticed an improvement on the default setting since it's apparently rather conservative.
Dr. Jean Fox, my gastroenterologist, was similarly encouraged by the improvements so far but agreed that we should adjust the settings in an attempt to get even better results. I figured she'd come in with a remote and just turn it up to the next level - whatever that was. Turns out it's significantly more complicated than that.
There's a full briefcase full of equipment: a little computer, a printer, and a transmitter. And there are a number of settings that can be adjusted: the voltage, the impedance, etc. Rather than change a number of settings at once, Dr. Fox suggested that we proceed slowly, changing just one thing at a time. It may take longer to obtain the final settings this way, but it will also be the most accurate.
At this visit, she increased the voltage from 5 to 7.5. She placed the transmitter on my belly directly over the neurostimulator and use the little computer to make the adjustments. She then printed out a summary of my new settings. It took only a few minutes and was all quite amazing.
Depending on how I feel, I can return every few weeks to continue having the settings adjusted until my symptoms are (hopefully!) mostly gone. Dr. Fox noted that most of their patients are needing to return for adjustments so they may considering increasing the "default" setting. So given all of that, I'm really optimistic and happy with how things are progressing. It's certainly better than it was and I know that it's finally the beginning of the end...even it takes a while to get there!
In the meantime, Dr. Fox suggested that I start experimenting a little more with my diet. It's somewhat nerve-wracking after all of these years of avoiding most foods, but that's another topic all together and I really am looking forward to being able to eat like a "normal" person again!
On a side note, Dr. Fox and Dr. Swain are the nicest doctors -- in any specialty -- that I've ever encountered. They're both incredibly knowledgeable, thorough, and compassionate. If you're considering gastric neurostimulator surgery, you can't go wrong with this team.
6 Weeks Post Surgery (11/2/09)
One week after having my pacemaker settings adjusted for the first time, I had to head back to the Mayo Clinic because my symptoms had returned with a vengeance.
In the days after the first adjustment, I noticed that I wasn't feeling as well as I had been prior to my return visit. Not significantly worse, just not as good. That is until I decided to venture outside my comfort zone and go out to dinner with my husband three days post-adjustment. I ate a small piece of thin-crust, pesto pizza. Though I felt fine for the first couple of hours, I got sick that night and my symptoms got increasingly worse thereafter. The daily nausea, vomiting, bloating, and stomach pain were back and I had to cut out the few new things I'd added to my diet, like cream of buckwheat and peanut butter on my toast.
So back to Mayo I went to figure out what was going on. I met with Dr. Fox on Friday afternoon and she checked the settings on my pacemaker. It turns out that the settings were out of balance, which either happened during the first adjustment or very soon afterward based on the onset of the symptoms (worsened by the pizza, I'm sure). Somehow the amps had increased from the default setting but the current had remained the same -- apparently they were both supposed to have been increased proportionately.
Once we figured this out, Dr. Fox increased the current to 7.5, the intended setting for the first adjustment. Three days later, the nausea, vomiting and bloating are finally starting to subside. I see Dr. Fox again on Tuesday afternoon to check the settings and possibly have another adjustment.
In the past few days, I've done a little more research on the post-surgery aspects of gastric electrical stimulation. According to Medtronic, it's recommended that patients and physicians wait 4-6 weeks to assess symptoms after an adjustment. Everything I've read also says that it typically takes 6-12 months to notice the full effect of the pacemaker on symptoms. It seems that immediate resolution of symptoms is a "results not typical" situation. But the improvement that I did have during the first five weeks was significant - and I realize and appreciate that even more after this setback!
Now I'm just looking forward to getting back to where I was pre-adjustment and then continuing to make progress.
7 Weeks Post Surgery (11/9/09)
When I last posted, I was at the Mayo Clinic having my gastric pacemaker settings re-adjusted. After I met with Dr. Fox on Friday, it seemed as if the flare-up was gradually starting to subside.
I had a return appointment on Tuesday afternoon. My doctor was out sick for the day, so instead I saw Dr. Robert Kraichely, who is also part of the gastric neurostimulator program at Mayo. Dr. Kraichely checked the pacemaker settings and realized that Friday's adjustment hadn't saved either. The settings were still "out of whack," for lack of a more technical term.
At this point, I was starting to get nervous that something was wrong with my device. Dr. Kraichely tried again, increasing the current to 7.5 and doubling another setting, both of which he said were pretty small changes. Whatever he did worked. This time the update was registering just fine. He graciously invited me to come back the next day before our 16-hour drive home to double-check that it was still set properly. Thankfully, it was.
So I'm home now and the flare-up I experienced after the first follow-up appointment is over. The vomiting has become far less frequent again and I'm not as nauseous. I'm mostly back to where I was in the five weeks post-surgery and I'm very grateful for that!
Other notes from my visit with Dr. Kraichely:
He indicated that he wouldn't recommend changing the settings -- or assessing the success of a particular setting -- for at least 4-6 weeks. It sounds as if the improvements may be happen more gradually than I originally thought. So I need to be more patient...
He agreed that finding an experienced gastric pacemaker doctor or surgeon closer to home would be a good idea. Sixteen hours each way - plus staying several nights in hotels - is time-consuming and expensive. So I'll be looking for a doctor that will be willing to work in conjunction with my docs at Mayo for short or non-routine appointments, with Mayo taking the lead of course since I'm part of their Enterra program (and I love them).
Oddly, since the appointment on Tuesday my abdomen visibly contracts every 5 seconds or so for quite a while after I eat or drink something. My family finds it entertaining but, while it doesn't hurt, it's a bit uncomfortable. I'm really not sure if this is normal so I'm looking into it. At least I know the pacemaker is working!
As of this week, I'm keeping a daily journal so that I can accurately track my symptoms and my progress, as well as hopefully identify what works and what doesn't as I start to (slowly!) expand my diet over the next few months. I'll be sure to keep posting updates!
Abdominal Twitching (12/11/09)
For the past 6-8 weeks I've been experiencing strong abdominal "twitching" several times a day, right around the gastric neurostimulator. It's clearly visible to others and looks almost like my stomach is hiccupping.
After contacting my gastroenterologist, my surgeon, and Enterra, I finally got an answer as to what's going on. Apparently several patients have reported this kind of abdominal twitching and it's been traced back to a problem with one of the leads (during surgery two leads, which are connected to the device, are inserted into the stomach muscle to deliver the electrical stimulation).
My doctor will try to fix it by adjusting the settings when I go for my 3-month appointment on December 15th, but if that doesn't work I'll need a second surgery to replace the lead. Not great news, but I'm wondering if this is why my results haven't been as significant as I initially hoped. If the choice is between settling for a lower setting than I truly need or sub-par results and having surgery to replace the lead, I will gladly choose surgery.
I so believe in the value of this treatment and I want 100% of the possible benefit! I'll keep you all posted...
Three Months Post Surgery (12/16/09)
I was back at the Mayo Clinic this week for my three-month check up and to address issues with abdominal wall twitching and a couple instances of a shock-like sensation.
As I explained in an earlier post, abdominal wall twitching is a rare complication of the procedure caused by an issue with one of the leads that connect the device to the stomach muscles. While this can require surgery, an abdominal x-ray didn't reveal any damage or displacement of the device or the leads so my gastroenterologist, surgeon, and Medtronic representative decided that the best course of action was to decrease the voltage on my settings and increase the frequency of the stimulation. In similar cases this has been an effective remedy.
As long as I don't experience any additional twitching or shocks, I should not need surgery. Hopefully this will further improve my symptoms, as well. I wasn't responding well to the higher voltage, aside from the twitching, as my nausea and vomiting had gradually worsened again over the last several weeks since my previous settings adjustment.
As I understand it, some people respond well to lower frequency, higher voltage treatment, while others respond better to lower voltage and higher frequency. Based on my experience so far, it appears I am in the latter category -- which is good news since that's also the remedy for the twitching issue.
Within the next four weeks I'll know how this particular setting is working for me. Fingers crossed! While I've had a few setbacks, I'm confident that I'm finally on my way to realizing the full benefits of the device.
Four Months Post Surgery (1/13/10)
It's been just about four months since I had the gastric neurostimulator implanted at the Mayo Clinic. Unfortunately, there have been some complications and I'm now on my way back to Minnesota for a follow-up surgery.
For several weeks, the results from the treatment were really promising. After the first follow-up appointment though, I began experiencing abdominal twitching and a flare-up in the GP symptoms. The device settings were manipulated in an effort to relieve the twitching and I now have just infrequent "fluttering" and "pins and needles" feelings. Unfortunately, over the past few weeks, the nausea, regurgitation, pain, and fullness have all returned to pre-surgery levels.
The thought is that one of the leads might be displaced or fractured, which is causing the shocking/fluttering/twitching. They're planning to do surgery on January 19th to fix the problem. How exactly that's affecting the symptoms, I'm not sure but I hope to find out at my pre-surgery appointment tomorrow. Because my results were so promising at the beginning, it seems to me that once the device/leads are working properly, I should see at least similar results again (and hopefully more!).
On one hand, I'm dreading another surgery. On the other, I'm anxious to get it over with and get things back on track. Now that I've had the experience of getting a bit better and then getting worse again, I realize just what a difference even small improvements can make!
New Gastric Pacemaker (1/21/10)
I had been having trouble with my gastric neurostimulator for the past 3 months -- both with worsening symptoms and abdominal twitching. After adjusting the settings multiple times, my doctor finally recommended exploratory surgery to look into the problem.
Thank goodness! Turns out the device was seriously malfunctioning.
When I went in for surgery on Tuesday, my surgeon opened me up and tested the device while it was still connected. He was able to see that it was shorting out every five seconds and causing consistent twitching of my abdominal muscles. They're not sure what caused the device to malfunction, but it's being sent back to the manufacturer for further testing.
So now I have a brand new device and should be back on track after the 6-8 week recovery period. I'd forgotten how difficult the first several days after the surgery are, but I followed my own advice and things have gone more smoothly this time. Now I'm just looking forward to reaping the benefits of a functioning neurostimulator!
Second Pacemaker: 4 Week Update (2/16/10)
It's been exactly 4 weeks since I had the second gastric neurostimulator implanted at the Mayo Clinic. Compared to the first surgery and recovery period, the second time around has been significantly easier. The swelling, on the other hand, was far more dramatic -- almost unbelievable -- but it's mostly gone now. Most importantly, the device seems to be working perfectly (no twitching!) and has significantly decreased my symptoms of nausea, vomiting, and pain.
I have my first follow-up visits with Dr. Swain, my fabulous surgeon, and Dr. Fox, my gastroenterologist, a week from today. I'm hoping for the all clear to return to yoga and start acupuncture treatments. I'm also hoping to arrange for my local family doctor to have a programmer, just in case the device gets turned off or I need a quick adjustment, as the 16-hour trip to Minnesota is getting a bit old.
My symptoms have already improved dramatically. I've had only 2 or 3 day-long "flare ups" of nausea over the past four weeks. Other than that, just some low-level, very mild nausea here and there. The only time I really have problems at this point is when I continue eating after I feel full. So far, the device doesn't seem to be affecting the rate of gastric emptying (it's not "supposed" to decrease emptying time, but it has been shown to do that in some cases), so small meals spaced several hours apart is the key (for me).
Those meals, however, are a bit bigger, more filling, and offer a little more variety than what I was eating pre-surgery. Almond butter and honey on toast and peanut butter and jelly sandwiches are becoming staples, providing a good amount of much needed healthy fats. I must admit that the process of introducing foods back into the diet, after so many years of cutting foods out of the diet, is a bit daunting. But I'm approaching it with optimism, caution, and assistance from a few experts (more to come on that in a future post!).
While the last several months has been a physical and emotional roller coaster ride, I'm so grateful to have a working device, to be feeling better everyday, and to be launching my health counseling career. Helping others take control of their lives and learn to live well with gastroparesis is my way of turning lemons into lemonade!
Second Pacemaker: 6 Week Update (2/28/10)
It's been just about six weeks since my second gastric neurostimulator was implanted at the Mayo Clinic. I flew back to Minnesota last week for my first post-surgical check-up. As I noted earlier this month, the new device seems to be working perfectly and my symptoms have improved a great deal.
First, a note about flying with the gastric neurostimulator. I've flown twice since getting the device and I didn't have any problems either time. I simply told the security agent that I had a "gastric pacemaker," since they're used to hand-screening passengers with cardiac pacemakers, and showed them my Medtronic card. They had me put my carry on items through the x-ray machine and then step into the screening area where a female security agent essentially patted me down. Very easy.
While at Mayo, I met with both my surgeon and my gastroenterologist. They check my device placement and settings, all of which are fine. We agreed not to adjust the settings for another 6-8 weeks. Since each patient is different, it's impossible to know if my symptoms will continue to improve on the current settings or if I'll need them adjusted to achieve further improvement. It's all trial and error but I'm comfortable with this slow, cautious approach.
I also came away from this visit with a few helpful tid-bits:According to my surgeon, acupuncture is a "no-no" once you have the gastric neurostimulator. No needles in the abdominal region, regardless of how small or superficial. Glad I asked since I was planning to resume acupuncture treatments for constipation next week.
Though it seems counter intuitive, my GI doc indicated that the constipation could actually worsen with the introduction of additional fat and fiber into my diet due to previously diagnosed pelvic floor dysfunction. So this is something I'll be addressing via a three week Pelvic Floor Training program at Mayo later this spring.
Because the Enterra device typically provides symptomatic relief without necessarily speeding up gastric emptying, my GI doc suggested that I continue to avoid raw fruits and vegetables, fried foods, nuts, seeds, and fatty foods. While I haven't progressed to experimenting with any of these types of foods yet, I was grateful for the info since I didn't receive any dietary guidelines after the first surgery.
My surgeon gave me the go ahead to resume my yoga practice after the 6-week mark, something I'm so looking forward to!
Lastly, I’ve had several questions about how much swelling is normal post-surgery. Below are photos of my stomach at 0, 2, and 4 weeks post-surgery.
Second Pacemaker: Two Month Update (3/16/10)
I can't believe it's only been eight weeks since my second gastric pacemaker surgery. So much has happened since then. I attended the DDNC, my health coaching career has really taken off, and I've started working with Dr. John Douillard (more about this soon). I've made some great strides and had a few set-backs, but overall I'm really happy with how things are progressing.
Both the frequency and severity of the nausea, pain and vomiting are much improved with the new device. Instead of feeling sick all day, every day, I'm now having more good days than bad ones...and even days when I don't feel sick at all!
It does seem that I have flare-ups every 2-3 weeks, during which everything stops moving and the regurgitation and stomach pain return. On the upside, while I feel very full during these flare-ups and have to tweak my diet, nausea still isn't much of an issue. That alone is a huge relief since it allows me to sleep through the night.
While my diet is still fairly limited day-to-day, I am experimenting. Peanut butter & jelly and almond butter & honey on fresh, toasted bread have become staples in my daily diet. I've also found that gnocchi settles well. I've even been able to add in some true treats here and there. Things like french toast and...cupcakes!
Yes, I've had cupcakes (from the amazing Sugar Mountain Bake Shoppe) on three occasions now and I've found that the key to minimizing symptoms is proper planning. So long as I don't eat several hours before the cupcake and I limit my fat intake more than usual the rest of the day, I do just fine. Two of the times I didn't feel so hot a couple hours later (poor planning on my part), but a Zofran and a good nights sleep took care of it. No lingering symptoms. Thank you, Medtronic & Mayo!
So while I cannot say that the Enterra device has allowed me to eat/live/feel completely normal (yet!), all in all, things are much improved and I'm very grateful. I know that this is an on-going process, both in terms of finding the ideal device settings and experimenting with diet and lifestyle habits, so I've been keeping careful notes along the way. In doing so, I've learned a great deal about what works for me, what doesn't, and what needs more attention.
Here's what's I've discovered:
Stress, anxiety, worrying, etc. really do exacerbate my symptoms, especially stomach pain and nausea.
Relaxation, meditation, and yoga really do improve my symptoms -- both immediately and over time when I practice consistently (something I am becoming more and more focused on).
While many people with gastroparesis thrive on 6-8 small "meals" a day, I've found that I feel my best when I eat 4 or 5 slightly larger meals. But...
The amount of food I eat, both at any given time and over the course of a day, is still the biggest factor in how I feel.
I'm doing well with foods that are a little higher in fat, like nut butters, in moderation. (I'm excited to keep experimenting with this and I've added avocados to my to-try list.)
The combination of my own dietary and lifestyle modifications, plus the Enterra device, and having the Zofran on hand for experiments gone wrong and flare-ups seems to be working well for me.
Constipation is still a big problem, perhaps even more so with my increased food intake. Much of the nausea that I do experience now is related to either the constipation or the daily laxatives. I'm on the waiting list for the pelvic floor retraining program at the Mayo Clinic and adding that to the combo of remedies I outlined above can only mean even better results!
Note: I've received several messages asking how much swelling is normal, so I'm including photos from 0, 2, and 8 weeks post surgery. As I mentioned in my first post-surgery post, I had a ton of swelling but it wasn't an issue in the long run. I didn't have nearly as much pain after the second surgery as the first one. After the first surgery, I couldn't stand up straight for several weeks. Based on the number of concerned emails I get, I really don't think that Medtronic or the surgeons are doing a proper job preparing patients for how they will feel after the surgery. Of course, I encourage anyone who is concerned about their own pain, swelling, etc. to talk with their doctor.
Second Pacemaker: Eight Month Update (9/27/10)
It's been a while since I've posted a personal update and I have quite a bit to share. I've been getting a number of messages lately inquiring about my progress with the gastric neurostimulator (a.k.a. gastric pacemaker), so I'm going to start there. I'll cover everything else that's been going on, including my 3-week stay at the Mayo Clinic this summer, in a subsequent post.
I've had my second Enterra device for a little over eight months now. The last time I posted an update, I said:
“Both the frequency and severity of the nausea, pain and vomiting are much improved with the new device. ... While I cannot say that the Enterra device has allowed me to eat/live/feel completely normal (yet!), all in all, things are much improved and I’m very grateful.”
That's still pretty much true. In fact, while I was at the Mayo Clinic in July, my doctor turned my stimulator off for four days. While it wasn't intended as an experiment, the device simply needed to be off for two diagnostic tests, it proved exactly how effective it has been at reducing my symptoms. From the time it was turned off until the day after it was turned back on, I was constantly nauseous. I couldn't sleep. I didn't want to eat. I quickly remembered how all-consuming the nausea used to be.
While it was a miserable few days, I'm actually glad I had the experience. I've been struggling with frequent flare ups over the last several months and I was starting to question whether or not the pacemaker was helping. I can now say without a doubt that it's providing a great deal of symptomatic relief.
Despite the way it has been depicted by the media, the device is absolutely not a cure for gastroparesis. It's a symptom-management tool. It has significantly alleviated the constant nausea and stomach pain that I used to experience. That's not to say I never have nausea or pain, but it's nowhere near as frequent, severe or long-lasting as it was prior to surgery. I'm also sleeping better than I have in years; even when I don't feel well, I can sleep through the night now. In addition, I've gained some weight and overall my body seems to functioning better.
All of that said, I still have symptoms on a daily basis, including severe fullness, bloating and regurgitation. I cannot eat a normal diet, though I certainly have a little more wiggle room than I did prior to surgery. Surprisingly, there's a bit of a downside to that extra freedom.
Without the constant nausea, I have more of an appetite. And because food makes me less sick and for a shorter amount of time than it did before, I'm more adventurous. Both of those are good things, of course, except that there's fine line between comfortable and overly full, and a few too many bites can result in significant fullness, pain, bloating and vomiting. Basically, it's easier to get myself in trouble now!
It took some trial and error to learn that while I can tolerate a little more fat and fiber due to the decreased nausea and pain, I still have gastroparesis and food digests just as slowly. That means I have to keep careful track of how much fat, fiber and overall volume of food I'm consuming and consistently stay within my personal limits.
Note: I think it's worth mentioning that my small bowel and colonic transit are both markedly delayed, as well, and that is most likely contributing to my overall symptoms. I imagine if that weren't an issue, I would notice an even greater benefit from the stimulator.
Bottom line? That gastric neurostimulator/Enterra Therapy doesn't work for everyone. It's not a miracle and it's most certainly not a cure. But after having the device for eight months, I can honestly say it's the best thing I've tried for symptom management and I'd do it again in a second.
One Year Update (1/27/11)
Last Wednesday was a big day for me. Not only did my Kickstarter project come to a successful end, but it was the one-year anniversary of my second gastric neurostimulator surgery.
As I've said many times on this blog, Enterra Therapy is the best symptom management tool I've tried in the past seven years. It has significantly reduced the frequency and severity of nausea, which in turn now allows me to sleep through the night on a consistent basis. I've been able to improve my nutrition, gaining nearly 10 pounds over the past year. In turn, I look better, feel better and my body has begun to function better overall.
All of that said, it certainly hasn't cured the gastroparesis. I still have slow gastric emptying. I still have to manage my diet very carefully, pay close attention to my stress level, and make sure I get adequate exercise and proper rest. I also still take anti-emetic medication, Zofran and/or Tigan, on a fairly regular basis. But, for me, the gastric neurostimulator was the missing link that made all of those other things far more effective.
Bottom line: I can say without a doubt that I'm healthier and happier now than I was a year ago and I'm grateful to have the device. Happy Birthday, Chuck! (Yes, I named it...)
Six Year Update (1/27/16)
Turning Off the Neurostimulator (11/14/16)
After talking with my motility specialist, I recently made the decision to turn off my gastric neurostimulator. My gastric emptying study earlier this year was normal and my symptoms have improved significantly. We decided that it made sense to turn the device off and see how I manage with out it.
One year Without the Neurostimulator (10/24/17)
The first week of November will mark one year since I had my gastric neurostimulator shut off. In that time, I also haven't taken any medication for gastroparesis or strictly followed a gastroparesis-friendly diet. There are times that I feel full, bloated, or slightly nauseous, which I can mostly relate to my menstrual cycle or IBS-type issues, but I'm essentially free of gastroparesis symptoms and my gastric emptying time is normal. As of right now, gastroparesis is no longer a significant consideration in my day-to-day life.
I shared more from this time on this post.
Twelve Year Update (4/16/22)
It’s been about five and a half years since I turned off my stimulator and several things have changed in that time but my stimulator remains off.
As I mentioned above, my symptoms had nearly completed resolved by the end of 2017. I did find that my symptoms were increasing a bit by the end of 2018, so I had another gastric emptying scan just to see if things had changed. It was still normal and my doctor indicated that he thought I was dealing with more dyspepsia/IBS than gastroparesis.
In 2021, I started taking a medication for heart palpitations that is known to slow gastric emptying and that has brought about a further increase in symptoms. At this time, they’re similar to what they were when I was first diagnosed. Still, I haven’t felt the need to turn my stimulator back on. The symptoms are not debilitating and don’t bother me in the same way that they used to. In addition, my motility doctor moved to the Mayo Clinic where they don’t have a neurostimulator program anymore and it doesn’t feel worth it to me to find a new doctor to manage the device.
I’m grateful that the neurostimulator was an option for me and I don’t regret the decision to have it implanted. At the time, it provided much-needed relief, both physically and emotionally. When I had the device implanted, I saw it as a “bridge” — something to get me through until I didn’t need it any longer. My doctor at the time disagreed with that assessment but it turns out that’s exactly what it was for me.
I hope to have the device removed at some point but it’s not causing me any trouble (other than the occasional soreness from a tight waistband and avoiding x-ray machines at security checkpoints, which has always been the case) so for now, it’s still implanted but turned off.