I was hesitant to write about this before today, because I didn't want to jinx anything. When I get really anxious about something my Obsessive Compulsive Disorder flares up (it is an anxiety disorder after all) and my fear of "jinxing" manifests itself in, well, strange ways.
Anyway, for the past couple weeks I've been researching and thinking about the procedures I had scheduled. I was having multiple panic attacks a day, and the more I read and learned, the less I wanted to go through with the surgery. My "gut" wasn't exactly screaming "NO DON'T DO IT", but it was saying "Not yet. Don't do it yet."
There aren't any easy treatments for Gastroparesis. There are few medications, and they all carry serious potential side effects. There are few surgical options, and they all carry significant risk.
Right now my GP is moderate. My motility is significantly impaired, and I have severe nausea along with stomach pain, bloating, burping, etc., but I'm not vomiting and I haven't experienced any weight loss or malnutrition. People with severe GP often have to have their stomachs either partially or completely removed, and they have feeding tubes/ IV nutrition for the rest of their lives. There is no guarantee that that will or will not happen to me. Only time will tell.
But for now I'm just not comfortable with two irreversible procedures. The possible side effects of both surgeries could leave me worse off, and that's something that's incredibly difficult to think about. So I decided to ask my doctor to reconsider the pacemaker. It's a major surgery with serious risks, but it's also reversible (that is, unless I die on the operating table or of an infection, but what are you going to do?) My biggest concern is the cost, but we're at the point we're willing to pay almost anything for some relief.
So what is a gastric pacemaker?
A gastric pacemaker isn't technically a pacemaker- it's a neurostimulator.
Neurostimulators are battery powered device[s] designed to deliver electrical stimulation to the brain, central and peripheral nervous systemNeurostimulators are an integral component of surgically implanted systems such as deep brain stimulation, spinal cord stimulation and vagus nerve stimulation, designed to treat neurological disorders and neuropathic pain..
These devices are implanted within a person's body, usually beneath the clavicle. The neurostimulator can be calibrated by a neurologist, nurse or trained technician to the individual patient's needs.
Neurostimulators must be replaced periodically upon battery failure, (usually within three to five years) though battery life is dependent on individual usage. Battery life can be reasonably predicted by the use of a telemetry programming device so that the unit can be replaced prior to battery failure. Rechargeable devices are now commonly implanted with a battery life in the range of 15 to 20 years dependent on use. [Wikipedia.]
A gastric neurostimulator is implanted next to the stomach, with it's leads (insulated wires) attached to the smooth muscles of the lower stomach. This stimulator sends electrical currents to the stomach, and though doctors don't know exactly how it works, it often interrupts the nausea/ vomiting signal of the brain. [Medtronic]
It isn't a cure for GP, it's a band-aid for nausea. I've read stories where people say it's improved their motility, but that is very rare (if not a placebo effect only.) And right now nausea is my most debilitating symptom. Reflux and regurgitation are next, but the doctor doesn't feel safe doing this surgery with a reflux surgery (meaning at the same time.) The risk of the pacemaker getting infected are just too high. My doctor want's to see how I feel after this surgery, and though it's likely I will still need reflux surgery of some kind (because my LES is partially open), we're going to work on this first.
I've read wonderful things about this surgery, and I've read terrible things. I've read stories about it shocking people, perforating organs, and even working it's way out of the skin! Sometimes it's even visible through your skin- though I have so much padding on my stomach you probably won't be able to see mine.
The surgery itself is not unlike a c-section where they will be making a sizable incision in the abdomen (thus cutting through the abdominal muscles), and I believe they will make laproscopic incisions as well. It can take up to a year for the device to be fully effective as the doctor slowly turns up the device at their office. The device can fail, and the batteries can and will fail eventually (likely after just a few years.)
You have to avoid activities that can jostle the device out of place like rollercoasters, running, and vigorous abdominal workouts. You can't (well, shouldn't) go through metal detectors, and you can't (obviously) get MRIs. But absolutely everything will be worth it if it works. And I pray it does.
My surgery is still scheduled for the 21st of April, but we need to get insurance approval. The receptionist today told me it could be weeks, so I'll be hoping it comes sooner than that- soon enough for me to keep the date of April 21st. I also hope that they approve it period. I will fight it if they don't, but lord what a pain.
I'm still scared out of my mind and questioning if I'm making the right decision, but I feel much better than I did before. In the end, this is a much better first step. But ask me how I'm feeling the night before the surgery. ;) Something tells me I'm not done with these panic attacks yet.
And the best news? I'll be able to eat the delicious food at R's party!