Surgical options for gastroparesis
I had my appointment in Durham yesterday to discuss my surgical options. We went through step by step listing the interventions along with a few pros and cons. The options for me were as follows:
1. Botox into the pyloric valve in roughly two weeks time. Done via endoscopy and minimally invasive. My help relax the valve and allow the stomach to empty faster. Roughly 20% effective.
2. What tube? Endoscopically placed gastrostomy tube (into the stomach) with a J tube extension. No need for general anaesthetic but would cause trauma to the stomach (my consultant advised against this option). / Or surgically placed jejunostomy (avoiding the stomach) tube. Surgical procedure, so slightly greater risk. Avoids damaging the stomach. Less problems with blockages and movement of the extension.
3. Biopsy, If I choose the Jejunostomy tube it would be a good opportunity to take a full thickness biopsy from the wall of the intestine. This could help to identify better treatment in the future and some would go to medical research to help learn more about gastroparesis.
4. Both the jejunostomy tube AND fixation of a gastric neurostimulator. It is similar to a cardiac pacemaker and works by sending electrical impulses to the wall of the stomach. This is said to reduce the nausea and vomiting associated with gastroparesis. Gets everything done in one surgery. Could help with the nausea enough to enable me to eat again. More invasive as it involves a laparotomy. 50% success rate. The unit will protrude from under the skin and may be very uncomfortable due to my low body weight. Could make things worse by creating scar tissue, especially if it is not successful.
5. Do nothing. Not really an option for me, I would simply starve to death.
An awful lot to take in in a short space of time, but that's where being an informed patient becomes invaluable! I had to make a decision that day, as the tube placement is essential. It will take at least 6 weeks to arrange any surgery so time is of the essence. So, hubs and I went off to have a chat about it and I also rang my mum for advice. The last thing I want to do is make myself worse in the hope of getting better, so I really struggled with my decision. In the end we decided that, if there is any chance that something will help me eat again, then I have to take it, 50/50 or not. So we decided to go with the jejunostomy tube, the biopsies and the gastric neurostimulator all in one go. It was very scary agreeing to have all that done and I may change my mind yet, but for now it is in the pipeline and my options are still open if I do have a change of heart. I will also be having the botox in couple of weeks time.
Medtronic are the company who supply the gastric neurostimulator worldwide. Here is a link to their site and a map of hospitals in the UK who perform this procedure: www.medtronic.co.uk
I would love to hear from anyone who has had these procedures, your advice would be invaluable to me. You can only get so much information from the medical journals, I want to know what it's really like for patients...so if you have one please contact me by leaving a comment below or email me at: helpmeminx@yahoo.co.uk
1. Botox into the pyloric valve in roughly two weeks time. Done via endoscopy and minimally invasive. My help relax the valve and allow the stomach to empty faster. Roughly 20% effective.
2. What tube? Endoscopically placed gastrostomy tube (into the stomach) with a J tube extension. No need for general anaesthetic but would cause trauma to the stomach (my consultant advised against this option). / Or surgically placed jejunostomy (avoiding the stomach) tube. Surgical procedure, so slightly greater risk. Avoids damaging the stomach. Less problems with blockages and movement of the extension.
3. Biopsy, If I choose the Jejunostomy tube it would be a good opportunity to take a full thickness biopsy from the wall of the intestine. This could help to identify better treatment in the future and some would go to medical research to help learn more about gastroparesis.
4. Both the jejunostomy tube AND fixation of a gastric neurostimulator. It is similar to a cardiac pacemaker and works by sending electrical impulses to the wall of the stomach. This is said to reduce the nausea and vomiting associated with gastroparesis. Gets everything done in one surgery. Could help with the nausea enough to enable me to eat again. More invasive as it involves a laparotomy. 50% success rate. The unit will protrude from under the skin and may be very uncomfortable due to my low body weight. Could make things worse by creating scar tissue, especially if it is not successful.
5. Do nothing. Not really an option for me, I would simply starve to death.
An awful lot to take in in a short space of time, but that's where being an informed patient becomes invaluable! I had to make a decision that day, as the tube placement is essential. It will take at least 6 weeks to arrange any surgery so time is of the essence. So, hubs and I went off to have a chat about it and I also rang my mum for advice. The last thing I want to do is make myself worse in the hope of getting better, so I really struggled with my decision. In the end we decided that, if there is any chance that something will help me eat again, then I have to take it, 50/50 or not. So we decided to go with the jejunostomy tube, the biopsies and the gastric neurostimulator all in one go. It was very scary agreeing to have all that done and I may change my mind yet, but for now it is in the pipeline and my options are still open if I do have a change of heart. I will also be having the botox in couple of weeks time.
Medtronic are the company who supply the gastric neurostimulator worldwide. Here is a link to their site and a map of hospitals in the UK who perform this procedure: www.medtronic.co.uk
I would love to hear from anyone who has had these procedures, your advice would be invaluable to me. You can only get so much information from the medical journals, I want to know what it's really like for patients...so if you have one please contact me by leaving a comment below or email me at: helpmeminx@yahoo.co.uk
Outstanding post but I was wanting to know if you could
ReplyDeletewrite a litte more on this topic? I'd be very thankful if you could
elaborate a little bit more. Bless you!