numbness and very tight feeling after vats surgery

Is this normal for it still to be partially collapsing? Yes I saw the Rapamycin also under the name of Sirolimus. Did the doc give you any idea of how long it would be to tell if there is any improvement on your breathing?  Mine will always totally collapse but I have an idea when or if it will happen depending how long it takes to get my breath back, so it's not really instant and I can get to hospital in time as I did previously, so for that I'm grateful.  

Well I got the X ray and results today and now I'm like others on this forum. It is not collapsed but instead its tissue forming or like scar tissue moving or something. So I guess it is something I have to deal with for a while. Did not experience this with the left lung. As for Sirolimus, my doc thinks it may have already helped me. I can say that my breathing is better than it was in Nov. but of course the 10 percent collapse is healed. I wont know for sure how the Sirolimus has helped me until my next appt, which if there are no problems wont be until this summer. If you do get the Rappa or Siro.. you might also get the supplement  resveratrol. There is a study where they are taking it with Rappa and in mice it is supposed to show that it kicks LAM into remission. I saw a lady post that she started Resveratrol and thinks it has improved her breathing. I ordered some off of Amazon and I'm taking it too. And CBD oil, Im taking that too.

Thanks Marie, let me know how you go on your next appointment. I'll let you know if I can get some med.

Sounds good, I hope you have some luck and relief.

[b]http://www.foxnews.com/health/2015/06/18/newly-approved-drug-restores-lung-function-in-woman-with-life-threatening[b].html

Fortunately I haven't lost as much lung function as she did, so I hope for good results maybe a return to the bicycle next year.

Hi Marie, decided not to try and get the rapa as it is meant to decrease your immune system and won't seek the talc treatment either if my lung collapses again. It's not a natural state of the lung to be in and you say the lung can collapse again anyway. I don't have any aches, pains or funny noises so I don't want to take any chances and create new problems. I come good after the reinflation of my lung only, so will just stay with that if it happens again. Good luck to you and I'd still like to know if the rappa helps you. Brian 

Hi Brian

I'm happy to report that the noise and sensation in my right lung has healed. I returned to bowling and had one great week, then I caught some of the junk going around. Spent last week battling that. It is still hanging on but I have about kicked it. Yes the decreased immune system  caused by Rappa is a concern of mine. I'm hoping that my prescribed dose is so small that it doesn't make a great difference. When I got sick last week I quit taking it. My start back this week. Sadly since I have LAM  I don't have much of a choice but to take it in hopes of shrinking what LAM tumors I do have. I do know many who have LAM and take the med who do fine. Just hope I'm one of them. I hope you continue on with no problems. Keep in touch if you like. As you know when you have had a collapsed lung, anything can change.

I would like to stay in touch Marie and wish you the very best. Would low level laser treatment help shrink the tumors? Ask your doctor. I cured my carpel tunnel and arthritis with it. (I bought my own laser on e-bay) I've also loaned it to others who have no aches or pains now, totally gone! I had horrible pain in my rib cage, don't know if it was a kidney issue or not, but the laser fixed that pain also.  

As of now, the Rappa is the only treatment. It is a weird disease. There have been stories of those who had to have a lung transplant, years later the disease showed back up in the new lungs and killed them. I think it is just one of those things that remind us we are not meant to live forever.

I have been lucky, I experienced no pain or numbness in the left lung after surgery. the right lung has been a little different, no numbness but had some phantom like pain. Currently, 7 months after surgery, all is well. (knock on wood)

hi again i am naw 10 monthes post opp and still in pain nerv damage lol just my luk

 

yes it's been 7 mos for me

its 7 mos and I still have pain and numbness but the doc put me on lyrica which seems to be helping