Wow Linda.. I'm so sorry to hear about the severity of your adhesions and pain. Reading that they are around/near the Lung Area and such I did want to mention something, just in case you have a similar breathing problem that comes and goes with me. and I know the adhesions I have that are located around/below/over/ etc etc My Diaphragm. And at times I can not take a deep breath.
This sounds like not a big deal perhaps - but I always explain it like this: It's as if I'm wearing this tight tight shirt at times.. that constricts my breathes to teeny little ones. No ability to take one of those deep cleansing ones, or even a normal sized breath. To 'feel what I mean here'.. simply look at your watch and for 60 seconds only take small tiny breaths. No bigger ones. and after a few moments the normal person says forget that! and takes a big deep breath to avoid the growing panic and dare I say hysterics.
I have gone to the e.r. myself dozens of time - pain, there is medicines for and I know it will kick in within 30 minutes or so , allowing me to hang on through the pain. BUT breathing - You need to breath NOW. Not in 30 minutes or 3 minutes. One minute feels like an hour. It's awful.
and if you suffer from this as well - or anyone else here knows what I'm talking about first hand, I wanted to share the one thing that's ever helped stop this - and that's the medicine Ativan. and it must be 2mg. 1mg never helped at all. The hospital assumes they are treating an anxiety disorder - well I really don't care What They think. I need to breath - and "I" know the panic came from NOT being able to breath correctly. I have tried over 20 meds like Valium and 'to the root of the issue' type ones (those were a joke) So now I take Ativan 2 times a day as a preventative thing. For once that breathing thing has begun... waiting for the oral Ativan to then kick in is a horrible, horrible time.
and the second thing I wanted to say is: I found Pain medicines - Opiate based pain meds like Vicodin, Percocet, Demerol, etc etc when taken for the pain, also tends to set off the breathing problems. why I don't know. I assumed the Ativan was able to relax the adhesion's hold or something, allowing then for the diaphragm to relax and for my right lung to expand normally. (yes. I could actually feel/tell my right lung was not expanding - disallowing the deep breath. I didn't even know one could tell the RT from the LFT but in this case, yup. I can. - and no. I'm really not Crazy. really.) Yet the narcotics I would have Thought would do the same type of thing, relax the muscle or whatever it is exactly that the Ativan does, but it's the opposite. I know that whenever I need to take a narcotic, I will also need to take the 2mg Ativan pill at the same time.
So if anyone is struggling with this - or if it sounds familiar to you or to what someone else has been trying to explain or suffers from... 1.) Ativan 2mg pill taken daily or with the pain meds will stop it from happening - and if 'in progress' the 2mg Ativan MG or IV if you happen to have an IV already in. 2.) yes, the narcotic medicines do trigger it off for some people like me - so take the Ativan with it.
May more medical personnel understand we are not crazy and are indeed suffering from these adhesions - May we be able to live full lives despite it all - I pray that will be the case for any and all who read these emails or see them at the website. take care - Jack
ADMIN NOTE: please speak with your licensed medical professional before attempting any medication suggestions to find the right med type and dosage. What works for one patient, may not work for another.
-------------------------------------------------- From: "IAS Admin (Tracy)" <firstname.lastname@example.org> -------------------------------------------------- Sent: Sunday, January 24, 2010 8:46 PM
-- -------------------------------------------------- To: "Multiple recipients of list ADHESIONS" <email@example.com> Subject: Drs. in the USA for adhesions
> From: Hugo Enz [mailto:firstname.lastname@example.org] > Sent: Friday, January 15, 2010 10:52 AM > To: tracy joslin > Subject: Drs. in the USA for adhesions > > Hi- I haven't written in a while, but I have been suffering with abdominal > adhesions for almost 40 years. I've been told I have a rare case as they > continue to grow from my pelvis all the way up into my chest cavity. I am > on Dauladid for pain and even with this medication, I am still in severe > chronic pain. I live in the Denver area. Can anyone please give me the > names and areas of some drs. who specialize in adhesions in the US? I know > about the Dr. in PA. I don't know if I would even be a good candinate for > this surgery. I have had 2 bowel obstructions, the first one happened 3 > days after an adhesion surgery. They grew back that quickly! I had a > barrier used during an adhesion surgery years ago, but the adhesions broke > through the barrier with a vengence. I went to a physical therapist > yesterday that my Dr. sent me to, but she doesn't even want to touch my > abdomen after examining me, as my adhesions are so widespread and deep. >>From time to time I have chest pain now, as the adhesions are continuing to > grow upward. The PT was concerned that the adhesions might eventually wrap > around my lungs, as they have already done with my other organs. Does > anyone else out there have adhesions as wide spread as I do? What are you > doing for the pain? I am at the point all I can do is lie down with a > heating pad. Thank you for all of your responses. I pray blessings over > each one of you who are suffering with adhesions. It is a horrible > condition in which many of our Drs. are not knowleable about. Thank you > very much. Linda Suhr >