Hi, Durga, and everyone!
I wonder why they did away with getting the posts sent to your e-mail account? It is rather annoying, I just thought no one was posting at all, then I sign in and see all these posts!!!
I am sorry I’ve not been here in awhile. My condition has not changed much. Still struggling to get adequate Pain Managment, and I have another pseudocyst growing, causing problems. The Dr. said either surgery, or another ERCP, and I want neither!! The last surgery didn’t help, why would I want to put myself thru that again. And that one and only ERCP I had put me in the hospital with an acute attack. Oh, what to do? PM is still telling me I am too young to be on Narcotics full time, (I am 39) so I guess I am too young to have Chronic pain?
Other than PM problems, things are going well. My Grandson, Kaleb, 16 months, comes to spend the day with me once a week. And my daughter is pregnant with #2, due at the end of Feburary. Being a Granny is the best, with being sick 99% of the time, spending time with my little guy is about the only thing thay brings me joy!! And all the Hugs I get from here:-)
I hope every is doing OK, and talk to you all soon!
Take care,
Cindy in Ky
Cindy
I, too, have the same PM problem as you do. My pancreatic specialist says he is more my pain management doc than my pancreatologist. I have spoken with several anesthesiologists at work and all have the same feeling, a 42 yr old does not want to be on narcs forever. What is our alternative? The CPBs are great but are short term and shouldn’t be done so often, for fear of burning out the aorta. We all have to keep up with new technology and share info with all. I am supposed to go to Mayo for an evaluation and will keep everyone posted.
Have fun with your grandkids and hopes for pain free days and nights.
Teresa
Teresa,
I have never has a CPB done. I am terrified of them, to me the risks are to high for something that “might” work. When PM suggested it and I declined, she acted really frustrated with me, saying, " I don’t know what you expect us to do for you" I expect them to keep my pain at a managable level. I fought for 2 years, trying NOT to take narcotics. But now I see how much pain was affecting my life, I realize I HAVE to take them, though I don’t WANT too! I don’t drive anymore, and had to stop doing childcare, I don’t feel comfortable doing either one, with narcotics in my system. This is not what I want, nor planned for my life to become. I’m sure everyone here knows what I mean!!
I hope you are doing well.
Take care
Cindy in Ky
Cindy
Let me reassure you that if you have a CPB done via EUS, the risks are very minimal, especially if done by someone who has done several. I have had 5 and each time, the results were fantastic. I did have a failed neurolysis that landed me in the hospital for 2 weeks but when done with bupivacaine and triamcinolone, I have gotten a good 6-8 weeks of wonderful relief. I have a fentanyl patch and take Vicodin when the pain starts to return and have had no problems with function. I am a pharmacy buyer, scout commissioner, baseball coach, religious ed teacher, and community volunteer through the Lions Club and have been able to do all those duties without disruption because of the narcotics. You become tolerant of these meds over time but the relief is well worth the risk, in my opinion. Will I eventually need more? Probably, but I am hoping that technology will become such that other avenues will open up. I strongly encourage you to try the CPB but definitely via EUS. The risks when done by an anesthesiologist are much greater but if done by a skilled gastroenterologist, you should be spared any side effects (other than a transient case of diarrhea).
Good luck and let me know what you decide.
T
Cindy,
I feel the same way!
Jackie