[jeany]

Hi everyone!

I hope I am posting this correctly...I have been a member for 2 minutes and have no clue what I am doing yet! Just wanted to introduce myself and make some new friends and perhaps connect with people that may be in my shoes. My name is Jeany and I live in WI. I am having a permanent pain pump Feb 20 and am scared to death in a way. I had the trial in Dec and ahhhhh it brought almost 65% relief! What a miracle--I thought I died and was in Heaven! 4 years ago I fell on melting icecubes at my work--landing on my right hip/butt area. Had 2 surgeries, one for a labral tear in my hip and the other for pudendal nerve entrapment...then I got RSD in my groin, butt and pubis. I have had almost every treatment under the sun. My pain doc and I have agreed that the pump can help bring my pain down. I have constant groin pain, pubic pain, sharp spasms, vaginal pain, butt pain, hip pain. I am sooo tired of taking pills and want an other option. My doc said I can have the PTM feature of the pump---a device that i can give myself an extra bolus of medicine if I need it. Please anyone out there that has the pump tell me about their experiences---good and bad. I need to know everything I can.

Thanks!
hugs
jeany

[alt1268]

Jeany,

Welcome to neurotalk. You posted just fine. I am sorry to hear about your fall and getting rsd. I know the pain that you are speaking of. I also wanted to let you know that there is a section on neurotalk for scs and pain pumps as well. check them out they are also a great group of people.

[ginnie]

I want to welcome you to Neuro Talk. You have found an extremely compassionte group of people here. There will be many who will respond to you and try to help with questions and answers about RSD and the pain inplant. There are people with trials going on right now, and those that already have their permanent devices implanted. Many have had such good results and are an inspitation to others. You will get alot of support. I am here just to listen and to welcome you to this site. You found the right forum, but don't hesitate to visit around the boards. You will be welcome in all locations. I hope you make alot of new friends, as you go forward to getting the help you need for your pain. I am so sorry you have this condition. I do not have this, I have Cervical issues with NP so I can understand some of the pain you experience. I wish you all the best, and I am glad you found us. This is a location you can get truth and information at the same time. Take care. ginnie

[keep smilin]

Originally Posted by ginnie

I want to welcome you to Neuro Talk. You have found an extremely compassionte group of people here. There will be many who will respond to you and try to help with questions and answers about RSD and the pain inplant. There are people with trials going on right now, and those that already have their permanent devices implanted. Many have had such good results and are an inspitation to others. You will get alot of support. I am here just to listen and to welcome you to this site. You found the right forum, but don't hesitate to visit around the boards. You will be welcome in all locations. I hope you make alot of new friends, as you go forward to getting the help you need for your pain. I am so sorry you have this condition. I do not have this, I have Cervical issues with NP so I can understand some of the pain you experience. I wish you all the best, and I am glad you found us. This is a location you can get truth and information at the same time. Take care. ginnie

Welcome jeany...

I'm so sorry for your RSD and painful experience... I, too have RSD so we are speaking the same language...a few tips is to never use ice on the affected areas and keep a journal of pain scales and daily events.. I have a SCS not the pain pump.. I know in the past we had a few people with the pump and I can recall one woman who got her life back.. Even riding horses again.. I wish I could give you more exact details but I m certain others will help you along... I want to welcome you and say.. Please, feel free to ask questions and share what ever you wish.. We are here to help.. A great family!!

take care, Kathy

[SandyRI]

Good luck Jeany! I receive ketamine infusions for my RSD, they are very effective for me, I am usually about 20-40% pain free. I would be better if I lived in Hawaii and not southern New England!! All of us are different, and respond to treatments in different ways. It is great that you are being offered the pump, make sure your doctor has a really good reputation. Will he around for you if there are complication post surgery?

Nice to meet you! Xoxo. sandy

[SandyRI]

Good luck Jeany! I receive ketamine infusions for my RSD, they are very effective for me, I am usually about 20-40% pain free. I would be better if I lived in Hawaii and not southern New England!! All of us are different, and respond to treatments in different ways. It is great that you are being offered the pump, make sure your doctor has a really good reputation. Will he around for you if there are complication post surgery?

Nice to meet you! Xoxo. sandy