I am due to have an opperation,on 22/01/2010, to remove lung cysts and then stick my lung to the chest wall. I am not sure if this is a good idea. Has anyone any expierience of this or know of any experts in this field who may be able to offer advice.
I have been advised by a chest surgeon that this is the route to take.
After recovering from this opperation he intends to do the same to the other lung.
I have had one VATs. The doc did a talc and mechanical pleurodesis, before knowing that this was BHD. I didn’t know much about VATs or that there were options to how it was done. My pulmonologist, if he’d had a chance ahead of time, would have advised only mechanical pleurodesis, as talc is very efficient but makes it more complicated if a second surgery is needed on the same lung. This is where I’m at now. The surgeon probably should have removed the bottom portion of my lung while he was doing the VATs because that is the part that is now having a hard time staying “up” – though because of the talc, the entire lung is not collapsing. My doc wants to let the air reabsorb (this is the 2nd time it has partially collapsed since my surgery in March 08) rather than go in and do the more invasive surgery (spreading the ribs to go in and remove some lung tissue). This might be necessary at some point but he wants to give it a lot more time and only put me in the hands of the most skilled lung surgeon.
Overall this is the best and only “solution” to blebs in the lungs that cause them to collapse. Let us know how you’re doing after surgery!
After three major surgeries (both sides) for collapsed lungs due to BHD blebs and numerous “collapsed lungs” (pneunomothaorax), sometreated with chest tubes, some not; I am leaning towards the opinion that pluerodesis should not be automatic following the tissue removal. Although the “risk” of future pneumothoraces may be greater, the complications due to pleurodesis are also greater as the inevitibilty of future problems is nearly certain until the majority of the problem blebs are removed. If there were a way to acsertain that (the stabilization of the bullae) that would be progress.
Most surgeons would apply conventional wisdom to the problem and I currently believe conventional wisdom should be suspended somewhat for BHD related cases.
My status: the right lung, after two surgeries and numerous (12?) pneumothoraces, is stable. It has been 39 years since the first surgery, following two major (and painful) collapses. I was 18 when the first two collpses and subsequent surgery took place. The second surgery (on the same side) was 12 years ago. There have been no problems since then on that side. (!!) The left side presented some minor pneumos over the years; none worthy of treatment until about 6 years ago. Same pattern as before with th right side: two back-to-back major collapses. The offer and recommendation to perform the surgery and pleurodesis. I held off until the second collapse. Significant tissue removal and pleurodesis followed. I have had major neuralgia ever since in the left chest area. Both on the surface and internal. The nerves have not recovered or rebuilt as expected. It is being treated with neurontin which takes the edge off. Significant pain spikes are experienced once or twice per day. X rays, CT scaans and ultra-sound have all shown negative on any internal issues for lungs, kidneys or other organs. The referral pain is a real trickster. As far as the lung, it appears to be stable but I would trade the risk of not having the pleurodesis for the ongoing pain; some related to the pleurodesis, some due to the nerve damage from the surgery.
I forgot to add that I would not go ahead and do the VATs/removal on the other lung until it is collapsing. It’s true what my dad said above…the docs really need to treat BHD patients differently than the status quo because in many cases a person has one bleb, one collapse, no disease, and the surgery solves the problem (because there is no underlying disease – apparently people can have blebs in their lungs for various reasons). My doc doesn’t plan to touch my left lung unless it is causing problems (though it does also have blebs and one that I know of has caused a small air bubble but it is/has reabsorbed and hasn’t collapse the lung).
oops I can’t edit my post – usually after 2-3 collapses the surgery is done on typical patients with blebs.
Thanks for the resonses, the surgery has now been delayed because of the bad weather we have been having which is giving me some valuble thinking time. I have got another appointment with the surgeon and will ask to see someone with expierience of BHD.
Steven, I wrote a short reply to your question on the Q&A I did elsewhere on the site, and now I’ve seen these other comments here.
FWIW, I have had pleurodesis on both my lungs. The right was done 22 years ago, and was definitely a mechanical pleurodesis where they rough up the pleural lining with a gauze or sponge and then use the scar tissue to stick the lung up. The operation followed about 6 spontaneous pneumotharaxes in that lung, which were treated the “standard” way with draining via a chest tube attached to slight vacuum.
The left was done 3 years ago and I believe was also done broadly the same way, although the surgical procedures have advanced a bit in the intervening years. The operation followed just one spontaneous pneumothorax – the doctors quite rightly figured that with my medical history they should just go straight to the operation.
In both cases though the operations only followed persistent pneumothoraxes, and weren’t the first line of treatment.
Both operations were painful to recover from, but I have made a more-or-less total recovery. I don’t think my ultimate aerobic fitness is quite what it was, but then I figure I’ve had little bits of my lungs snipped off so I doubt I have quite the lung capacity I used to have. On my right side I have a slight “dead” zone of sensation around the surgical incision, but nothing too major. I’ve not had the neuralgia problems that Dave G referred to.
Re your comments on asking to see someone with experience of BHD … I suspect that BHD is so rare that it’s very unlikely to find a surgeon with prior experience of it. An alternative path might be to provide your surgeon with some background info (perhaps the recent Lancet article available on this site?) and refer them to this site as well.
My past history is a pneumothorax to my left lung in 2003. This was before the BHD diagnosis in 2007. I have been having repeated chest and shoulder pain for the past couple of years, but only recently after a CT scan were the cysts seen and believed to be the problem. I am not conviced as every episode of pain is accompanied by really loud and persistent belching and no body seems to be able to offer an explination to this.
I am curious too about your chest and shoulder pain and the cysts believed to be the cause of the pain. I had pain off and on for several years before I had a known lung collapse. My docs have also said it might have been the formation of the blebs/cysts that were the cause of the pain. Hmm. I had thought maybe they were mini collapses that eventually reabsorbed on their own.
I am not sure what to say about the loud and persistent belching…LOL!!! I hope you can laugh a little bit about this. I know it is one of the only things we can do sometimes!! I have had what I so unlady-likely refer to as lung flatulence…is this what you are referring to? I am still learning but I think this is what happens towards the end of the air reabsorbing (on the side where i had the talc and mechanical pleurodesis but it keeps having issues).
Glad you got the surgery delayed and have some time to think it over. I wouldn’t opt to have it unless I were stuck in the hospital with a chest tube and it were my only way out!
Steve- I have just returned from hospital with 3rd Pnemothorax. In 1986 I had emergency chest tube and Pleurodesis surgery. It was excruciatingly painful. I had lots of nerve damage and ongoing pain for years. My Doctors this week did CT scan which showed large blebs in the same lung, which lots of scar tissue, and two thirds of the lung is damaged and not functioning. Drs. think this may be from injury during first Pleurodesis. Most of the tissue that was previously adhered to the lung wall had pulled away but there are a few very thin areas still stuck, which can break loose, and then Lung removal iwill be my only choice. At present time I am at home and seeing if the lung may re-inflate some. And I am considering the next move. If I had known the first time what the Pleurodesis would do, I would have tried to find the best surgeon possible. Of course, treatments are different now, so hopefully less difficult to revover from and more effective. I have not been diagnosed with BHD yet but DNA tests are ordered. My Dr.s did not know about this, so it is new for us all. I think it is good for you to have time to reflect and think about the Dr. and the procedure.