It has been a very long time since my last posting, and I want to apologize for that. Things have been anything but easy for me these last few months.
I am happy to say that in addition to my CVS diagnosis, I was also diagnosed with gaastroparesis. Now I will always have both disorders but I have found a new treatment. I met a surgeon that my mother found through a health newsletter who is pioneering surgeon placing gastric pacemakers in people with gaastroparesis. Although the device by Medtronic has been around for years, it's not until recently that it has made it's way into the market and not just clinical trials. There is still a process to get approval but patients suffering such as myself have a chance at living a close to normal life.
I underwent the procedure October 18. I am not gonna lie, it was a painful procedure and I have still had a few attacks since the surgery, my symptoms day by day seem to be reducing in frequency and intensity. I hate being sick and I hate getting sick, but knowing that I have a chance at a better quality of life, keeps me going. I have a great support system and a family that loves me.
I live for today and look forward to tomorrow.
I love reading your posts! And I do hope that the pacemaker helps you ALOT ! I have a best friend that I've known for 11+ years and he was diagnosed with it when he was 12 and he is now 24 years old. And he stays sick almost all the time :( he has been through ALOT of surgeries all his life, they have done nerve block surgeries (not sure what its actually called, you might know, but its where they burn the nerves to his belly to try to reduce pain, where he wont know when hes in pain?) but none of them worked, and other surgeries too, he even has a feeding tube in his belly. But, he has been seeing a specialist out in Louisville, KY for a couple months and he likes them doctors a lot but a couple weeks ago they decided to set up surgery to do a Gastric pacemaker, he goes in tomorrow and I'm worried because everything I look up says that people with CVS the pacemaker doesn't do any good, and websites where ALOT of doctors are saying that they don't believe that Gastric pacemaker would do any good for people with CVS and I do not want him to keep getting cut on and cut open and get his hopes up for something to at least help a little bit, if its not gonna do any good at all :( I just want him to receive some type of relief, I hate seeing him or anyone for that matter in pain like this and sick all the time, I know your not a doctor but having the CVS as well I was just wondering, If you would mind giving me your opinions on this? If not I completely understand. And I will pray for and hope that the Pacemaker will do you good and give you some relief. Thanks for reading my post I appreciate it and I will keep you in prayers, Thanks and have a blessed night.
ReplyDeleteSincerely,
Kayla
My name is Jason and I've recently been diagnosed with CVS. So far no preventive has helped. I'm actually in the hospital now getting over a episode. My Dr said the next step would be to try a gastric simulator but I can't seem to find much info online about how it would help with cvs. Any input would be greatly appreciated
Delete