Cleveland Clinic Gastroparesis Appointment

Last week we went back to the Cleveland Clinic to meet with their gastroparesis specialists for the second time. We had been waiting on insurance to cover a test that they had ordered (a smart pill which measures time, pH, and pressure of your entire GI tract), but insurance would not cover this test and deemed it experimental. Since they wouldn't cover this test we had to go back up to Cleveland to come up with a new care plan without those results.

It is a four hour drive each way to Cleveland, which makes it quite a long day!!! My service dog Reilly DESPISES the car, so he was left at home with my sister-in-law. We live next door to my brother-in-law and sister-in-law right now, so to Reilly they are family and he is very comfortable with them. It is still hard on the both of us to be separated since we are together at ALL other times. I feel like I am without my shadow when I don't have Reilly because I do not go anywhere without him  (even the bathroom normally!!!).

We were able to meet with both the gastroenterologist and a general surgeon who works with the GI doctor. The gastroenterologist raised the dosage of a medication (Remeron) that is supposed to help my stomach empty. It is not a "traditional" medication used to treat gastroparesis, but he uses it with many of his patients who have gastroparesis in conjunction with autonomic nervous system dysfunction. The idea is that this medication will help the nervous system to effectively tell the stomach to empty. We doubled the dose and so far I have not noticed much of a difference in my symptoms since increasing the dose, but it has only been a few days so I will give it some more time!

After having a conversation with the GI doctor we decided that the gastric neurostimulator is not the route for me right now. This device is what we had discussed as the next step previously, but we decided at this appointment that this is actually not a good next step right now. One main issue with the gastric neurostimulator is that it is not MRI comparable. This means that I would never be able to have an MRI. Having EDS and needing MRI on joints and my brain and spine on a fairly regular basis this is not ideal. The alternative to an MRI is a CAT scan. Now CAT scans themselves are not a bad thing, but they do expose patients to radiation. Having a few CAT scans is no big deal, but if I had to have multiple CAT scans a year the radiation would definitely add up over the years and this is a huge concern.

Another issue we have with the gastric neurostimulator is that the success rate is only 50-60%. That is not very good odds in my book! The surgeon also said that since I have chronic constipation he thinks my intestines may be slowed down as well as my stomach so the success rate drops even further. It is a major abdominal operation to place the device and then an even more complicated operation to remove the device if it does not work. The surgery to take it out includes the surgeon removing a piece of your stomach because the nodes on the stimulator become embedded in your stomach. Obviously this is not an ideal situation!

Now all this aside, this does not mean that someday this device will be a good next step for me. Right now I am actually gaining weight and eating much more than I have in the past. I still have symptoms and discomfort, but in general my GI status has greatly improved. For all of those reasons the benefits  do not outweigh the risks at this time.

Since we decided we are not pursuing the gastric neurostimulator at the moment we discussed alternative options with the surgeon. After discussing a few different things we decided that the next thing we will try is injecting botox into the pyloric sphincter. The pyloric sphincter is the valve that allows food to pass from your stomach into your intestines. By injecting botox into the muscle that forms this sphincter the muscle relaxes. Once the muscle relaxes the hope is that food will pass easier from the stomach into the intestines since it does not have to work to get past the sphincter. If the botox does work I may notice results immediately or it might take a few days before I notice any results. Even if the botox does work, however, the results are only temporary. The general surgeon says that most of his patients only see results for about 6-8 weeks at the maximum. For this reason the botox injection is not considered a long term solution, rather it is used as a diagnostic tool. If I respond well to the botox injection then that tells the surgeon that I would be a good candidate for a surgery called a pyloroplasty (more on that in a moment). The botox injection is done via a scope, so there are no incision in the abdomen. There are very few risks of the botox injection itself, besides the risks of the anesthesia of course! For this reason we decided that there is no harm in trying the injection and seeing if it helps.

Since Cleveland Clinic is so far away for us to drive to the doctors and I decided that I would try to find a doctor to do the botox injection in Cincinnati. I had an appointment with my primary care doctor at the beginning of this week, so I asked him if he knew of anyone. He sent me the name of a doctor that will do it, so I set up an appointment with this GI doctor for Monday the 25. We will schedule the procedure to do the botox at this appointment.

If the botox injection provides relief from symptoms then we will most likely preceded with a surgery called a pyloroplasty. A pyloroplasty essentially does the same thing as the botox injection, but it is permanent. During the pyloroplasty the pyloric sphincter is cut so that the valve is widened. This provides a permanently opened pyloric sphincter. The Cleveland Clinic is one of the only places in the world that can do this surgery endoscopically. This means the surgery can be done through a scope down the throat rather than through incision made on the abdomen. The recovery is faster, the risks are lower, and there is no scarring if the surgery is done this way. For this reason we will travel up to Cleveland if we decide that this surgery is the best next step for me. The risks are very low and there are no long term complications with this surgery. We will not know whether or not I am a good candidate for this surgery until after we do the botox injection.

That was a very long update I know, but it was an extremely informative appointment! I will update as to when the date for the botox injection will be after the appointment I have schedule on the 25th.