Hi, I am new to this group. My name is Cindy and I live in NJ. has anyone heard of the gastric pacemaker?? I have severe motility issues. was diagnosed with gastroparesis and I have chronic constipation. I have an appt. with a motility specialist on monday. My general practitioner thinks this might be the way to go for me and I wanted your thoughts on whether or not this has been mentioned to any one here. Thanks in advance for any input. Cindy
Cindy,
Welcome to the group! You have found the right place to talk to someone about the pacemaker. I don't have it but several people on here do and many more are in the process of getting insurance approval to have it put in. Most say that it isn't a 100% cure but the help it provides them is worth having it done.
I'm sure some of them will be responding with more details on it once they read your post.
Glad you have joined us.
Judy
Hello Cindy,
My name is Tammy and I have a gastric pacer. After many years of being Misdx., I was finally Dx with Idopathic Gastroparesis May, 200. since this Dx I have had the Botic injection in the bottom of my stomach-Didn't work, I have been on 25 different stomach meds in One year-Didn't help. I have had 4 J-G tube placement for Nutrition, than Feb. 08, I had a Gastric pacer placed by a Physican from Vanderbilt in Nashville TN. I had to fight for this pacer with my Insurance Company. I am just now starting to eat alittle of food. I still have N/V and Abd. pain, but at least I can eat alittle and not just depend on my tube feeding. I would love to talk to you sometime.
thanks
Tammy
Cindy,
I've had my pacer 5 years this month. It isn't a cure and I still deal with GP daily, but I couldn't (and wouldn't want to) imagine my life without my pacer. I still live on tube feeds 21 hours a day, but we consider that an improvement, because before I spent several years on TPN unable to tolerate tube feeds at all. I know of people who have been able to come off their nausea meds for the most part, because of the pacer.
I would be happy to answer any questions you have. I hope you are able to give the pacer a chance and see if it will help you.
Charity
Cindy,
I have had the pacer since April '08, and I have had a great reduction in my vomiting, nausea, and bloating. I still feel nauseous, and still bloat, but not as bad. Knock on wood, I haven't vomited in 3 months now. I hope I didn't just jinx myself :-( . The pain however, has not gotten better. It has actually increased, since the placement of the pacer. I also have a J tube for feedings, but have been able to decrease from 21 hours a day, to 14 hours, since the pacer. If a pacer is an option for you, it's definately something to consider. I know that it has improved my life greatly, except for the pain, but that is controlled now by pain meds. You live in NJ, so Temple Univ Hosp (Dr Parkman) is close by. He has placed many, many pacers. Welcome to the group.
~Liz in CT
Cindy,
I have had my pacer a little over a year now. It will not cure your symptoms, however for me it has helped with the nausea, it's lasts a shorter amount of time now. It takes time and patience with your doctor to get it adjusted to the right settings, so it's a work in progress situation.. Make sure you get a doctor who has worked with many! Good luck and welcome. Karry
I think it's great that you may get the colonic pacing...I was under the impression that it was not yet approved for colonic inertia, yet I've read great articles about it?
Is this like sacrial stimulation except at the 4 points of the colon?
Well, hope the appt. works out for the best.
I too have yet another appt. w/a motility specialist however, it's on Tuesday and the pain is so bad, don't know if I can hold out another day (like my entire intenstines and rectum are literally going to explode and it's all hard as a rock- as thin as I"ve become).
Let me know how you did?
Take care , Jay nyc
Hi Cindy, you've come to the right place for GP info and experiences. The people on this sight are the best support group you could find.
I received the pacer during it's clinical trials w/the Dr. who helped Medtronic(The maker of the pacer) develope it. I have had it for 5+ years and it helps w/nausea. Actually, that is all it is supposed to do. They put the pacer in your lower abdomin with wires that are connected to the Nausea nerve that tells your brain to be nauseas. It does help in that respect, but the pain,bloating and the rest of it still remains. Don't get me wrong, I would not want to live w/out it. I still get Nausea but not as often or as severe.
Unfortunatley, this disease is one for the books. I was diagnosed in 2001 and by what I read here, nothing new is out there for us.I also have a feeding J Tube that I actually very rarely eat from, I use it for my "cocktail" of drugs. Because of the two of them and learning self hypnosis (really can work, I was a wicked sceptic), I was able to get off SSI and go back to work and lead a semi-normal life.
I would love to chat if you are intersted. I Live in MA (Where the best hopsitals in the world are) and I had to travel to Kansas City, Kansas to get the help I needed. I am proud to have been part of the clinical trial as it helped me help others with this condition (Hopefully). You have to be your own medical advocate with this disease as there is so much not known.
Were you able to get the pacer approved through insurance? Sometimes, that can be a nightmare as I do not think It is FDA approved yet and is still considered for "compassionate use". Not sure, good luck and if you would like to chat, I am here:)
Dear Cindy,
How are you doing? Have you and your doctor come to any decisions yet regarding the gastric stimulator?
I had one for eighteen months. It was first placed in July of 2003. Unfortunately for me, it did not really help at all, but I do have a cousin whom it did help tremendously. As someone pointed out, one of the key things to remember is that this device does not actually make the stomach work or increase emptying time, but rather through the electric impulses sent from the device to the stomach, it helps to reduce some people's symptoms of nausea and vomiting. It can also take up to at least a year to see how well the device might work for someone and it may take time to find the right setting for you as each one is unique. I had mine removed because I eventually was put on TPN, and it was thought that the device could be a possible breeding ground for all the organisms that were causing all my central line infections. I wish you the best of luck in making your decision about this. My best advice is just to find out as much as you can. Best of wishes.
Warm regards,
Bobbiejo
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