I Have To Have Lung Surgery

[seonai]

Hi all, I have to have surgery because of a cavity in my lung caused by TB. The doc gave me two 'options' - have any of you any experience with these? One is to break my ribs and cause my lung to collapse apparently!!! Think she said it was an old fashioned procedure called thoracotoplasty????? The other she said is open surgery to remove the 'bad' part with the (large) cavity in it.

What do you think I should go for ?????

[Tony Clifton]

I'm curious. I've been told something similar a while ago, minus the operation and TB. Apparently I've had a collapsed lung at some point and can't remember having so. Maybe it was pneumonia or a really bad cold and coughing fits. I dunno...

Does it feel uncomfortable after sitting for a while? Feels somewhat like a cramp or someone poking a finger under my ribs.

[ballbreaker]

Second opinion time.

[donna]

oh dear. i think i would go for whatever one gives you the best chance of a fix with no long term effects. either way its gonna be painful, so dont even consider that.

id get more info from the doc and get her to write down the pros and cons of each and then make an informed decision.

[seonai]

I haven't had it done yet TC. Do lungs reinflate themselves then?

[Tony Clifton]

I think a partially collapsed lung can heal without treatment but may leave a scar in the form of a cavity and pressure in the cavity can make it uncomfortable for years afterwards in certain positions, like sitting in my case and the pain lingers for a while even after standing up. I 'm no medical expert.

[John K]

Simply put there is no one answer for you. In proper medicine each illness is treated on a case by case basis. As an example the best action for a given condition may be antibiotics, however if a person is allergic to antibiotics then another plan of action must be taken.

There are only two organs in your body that can never rest or go offline to heal. They are your heart and lungs. As a result the healing process is slow at best and in many cases no existent.

My best advise is to go an have several evaluations made. You age and overall health are big factors in deciding what to do. One method may be best for a younger person where the other method may be best for a older person.

[WaiWai]

If I were you, I would

1. Get at least 3 more doctor's opinions. Ask to speak to other patients of theirs, if at all possible

2. Post your question on a number of internet forums; ones widely read and/or with a medical focus

3. Research the matter on the internet

4. Be open to the possiblity of travelling outside of Thailand *if* that appears the best option (I have no idea -- just know that seems to be the case for certain op's.)

Unfortunately you will probably be very uncomfortable for a while post-op (make sure there's good after-care provided wherever you decide to have the op & that they have good painkillers available at non-extortionate rates)

Good luck ! All should work out fine.

[english_farang_lady]

Previous post is spot on. Get three 'second opinions' for such an invasive procedure. Research it fully on the web, suggest WebMD as being a good starting point, look at all your options.

Wonder which hospital you got the original consult from?

[Mossfinn]

she said it was an old fashioned procedure

A little disconcerting, considering the terminology!

The other she said is open surgery to remove the 'bad' part with the (large) cavity in it.

Did she explain why they need to remove it? One reason maybe to negate infection or fungus growing in there?

What do you think I should go for ?????

Interrogate, and I mean interrogate the Specialists involved.

Who, why, where, when and how? Any alternatives? What if? Status, if nothing is done?

Good Luck.

I'll call later.

Moss

[sbk]

Wow, that sounds horrible, either way

Thoracoplasty:

The operative removal of the skeletal support of a portion of the chest is called

thoracoplasty. It is usually accomplished by subperiosteal removal of varying number

of rib segments to approximate the chest wall to the underlying lung or mediastinum to

effect lung collapse or pleural space obliteration

2

. This operation has evolved along two

lines : (i) the Alexander procedure which successfully collapsed the cavities of

pulmonary tuberculosis and was used until it was supplanted by antimicrobial therapy

and pulmonary resection, and (ii) the Schede procedure which aims at reducing

intrathoracic spaces or filling them with living tissue implants. These indications for the

operation of thoracoplasty are continuously decreasing as is evident from many

published reports

3,7

. However, pulmonary tuberculosis and its complications are quite

rampant in India. There are associated problems caused by poor patient compliance,

drug resistance, poor health care delivery system and a certain amount of

mismanagement at primary and secondary levels of health care.

Hence, the operation of thoracoplasty is still required fairly often at least in the

Indian scenario. As thoracoplasty is somewhat mutilating, it is always carried out as a

last resort. In our institution, thoracoplasty is carried out for a few specific indications.

The operation is used for the treatment of chronic thoracic empyema when there is

either insufficient or no remaining pulmonary tissue to obliterate the pleural space. If

the lung cannot be brought to the chest wall [which is the objective of tube

thoracostomy, rib resection and decortication), the chest wall must be brought to the

lung (or the mediastinum if no lung exists)

From an Indian medical review

[Luckydog]

Second opinion time.

This could be the best advice you have ever had.......Best of luck.

[seonai]

God!!!! Just read SBK's post

[geriatrickid]

If the OP is in the UK, then there is no excuse not have additional opinions, particularly from a specialist at a teaching hospital. The trend today is to avoid invasive procedures, such as cracking a chest. Please don't be afraid to ask your physician for a referral. There are often different approaches and methods, particularly dependent upon experience with other similar cases.

[LaoPo]

Hi all, I have to have surgery because of a cavity in my lung caused by TB. The doc gave me two 'options' - have any of you any experience with these? One is to break my ribs and cause my lung to collapse apparently!!! Think she said it was an old fashioned procedure called thoracotoplasty????? The other she said is open surgery to remove the 'bad' part with the (large) cavity in it.

What do you think I should go for ?????

Seonai, it's kind of you to ask our opinion.

But you are, as you well know, in a very serious condition and personally I think you should aim for the best possible Specialist in this particular 'field' (Lungs and TB) in the country, probably in London, to ask for an opinion and treatment.

'A' Doctor (with the utmost respect!) is not enough.

You need help from family and friends who have 'friends' (of friends maybe) to start kicking doors for you and find the best possible solution/opinion from the best possible Specialist.

I strongly urge you to start phoning some people to help you....

You're 'on this road' already for more than one year now!

Wish you all the best!

LaoPo

[Jet Gorgon]

Good luck, Seonai. I'm also with the other members recommending 2nd or 3rd opinions, and your own Internet research. Please let us know how you get on.

[John K]

It does not mater where you are, you can have your test results sent to any number of places for a doctor's opinion, just stay away from the opinions that are driven by insurance companies. You can email your test results to places in the states like John Hopkins or any place that deals with that.

[seonai]

thanks all. Don't worry LaoPo !!!!! I'm not daft !!!! Of course I'm asking lots of Q and getting second opinions. I just thought maybe someone on TV would have experiences to share

[joskydive]

Hi all, I have to have surgery because of a cavity in my lung caused by TB. The doc gave me two 'options' - have any of you any experience with these? One is to break my ribs and cause my lung to collapse apparently!!! Think she said it was an old fashioned procedure called thoracotoplasty????? The other she said is open surgery to remove the 'bad' part with the (large) cavity in it.

What do you think I should go for ?????

I agree with most of the other replies you have had and that is to go for as many other 2nd and 3rd opinions as you can. Any operation has its own drawbacks separate from what the operation is for, so, must be taken seriously.

Anyone who is undergoing a surgery should also ensure they know the whole proceedure from start to finish including a chat with the Anaesthitist and what to expect when they wake up again and when the analgesics wear off. What is the recovery period? What discomfort, if any, I should expect for the rest of my life? Years ago, there were TB hospitals in England but don't think there are any still around now.

Best of Luck and hope you find the expert that you need.

[Sheryl]

Seonai,

The first procedure mentioned is largely obsolete and, although easier to perform than the " open" procedure, is more deforming. IF surgery is indicated, I would opt for the open approach with removal of the affected lung segment.

However you first need to be sure surgery is absolutely necessary. TB always leaves cavities in the lung, these sort of heal over and can be lived with. Surgery is resorted to only for complications or when the TB is still active and resistant to all medications. Are you having chronic chest pain (pleuritis)? That can be a reason for surgery, although one has to weigh the pain against the risks of thoracic surgery.

Ask your doctor to explain why surgery is necessary and what would happen if you did not have it. Then get at least one other opinion asking the same question.

If you can let me know (post or PM as you prefer) what the reason for the surgery is, I can perhaps advise further.

Good luck

Sheryl

[Mossfinn]

Sheryl,

If you don't mind I will answer as best I can, in case Seanai is not on for a couple of days, allowing you to answer more fully when Seanai gets on next time.

It appears that the TB infection is lying inside one of the holes and so she is testing positive each time she is tested.

I think they are struggling to find the best long term solution and they can't diagnose the best treatment because of this, so their solution is to eradicate the hole.

It appears to me a little draconian, but Seanai is certainly still struggling after doing the full course of treatment.

I also have these holes and recently had a relapse, where they were convinced that their was a fungus growing in the comfort of this hole, but never did they suggest this course of action, although I was not suffering to the same extent.

Not a complete insight to the situation, but it might help further thought to the problem for when Seanai can get back on.

Thanks

Moss

[khall64au]

Am now sending "healing faeries" to Seonai & Mossfinn............

(***** George - where are the healing faeries???????)

[Sheryl]

Thanks Moss, that clarifies a bit but I still have some info needs:

1) What exactly do you mean by "test positive"? Positive sputum test?

2) Have they done a culture and sensitivity on the bacilli? What were the results?

It is sounding like she might indeed be best off having that segment of the lung removed, but it is a major operation not to be undertaken except as a last resort so would be good to get as much info as possible first.

[Mossfinn]

It is sounding like she might indeed be best off having that segment of the lung removed, but it is a major operation not to be undertaken except as a last resort so would be good to get as much info as possible first.

1) What exactly do you mean by "test positive"? Positive sputum test?

Yes, testing positive through sputem.

2) Have they done a culture and sensitivity on the bacilli? What were the results?

I don't know the answer to this, but they must have cultured them, wouldn't they?

As for sensitivity, I will ask her.

Seanai, is presently asking as many people and organisations as she can get hold of at present, including the TB Alert, who have rather painted a horrifying picture of the Thoracotoplasty.

Thanks for the in-put Sheryl.

Moss

[seonai]

Hi Moss and Sheryl, thanks for the info. The cavity is in my right upper lung and it's about 5 x 4 inches. The consultant believes the TB is living in there. I myself feel that it fills up with mucous and then gets infected. I tested neg (aafb) in January and then ragingly positive in March again. I was on Rifanah, Izoniazid, Ethambutol, Clarithromycin and Ciprofloxacin for two months this time. Now down to Rif, Izon and Ethambutol and will be for the next 9 months. When I had two skin tests two months ago both had NO reaction at all!!!! I don't understand why. My feeling is to go with the bigger op if I have to have surgery, the other op sounds violent and awful.

[farangene]

.... My feeling is to go with the bigger op if I have to have surgery, the other op sounds violent and awful.

This evening on CNN Video (on the internet), there is a video about one of the surgeries I think you described. Dr Sanjay Gupta narrates the video story and it's called "Exclusive look at TB Surgery" .

Exclusive look at TB surgery 2:07

CNN's Dr. Sanjay Gupta gets a rare, inside look as doctors remove the infected part of TB patient Andrew Speaker's lung.

here is the URL:

http://www.cnn.com/video/#/video/bestoftv/...my.faye.god.cnn

added edit note:

OOPS that points to a Tammy Faye video. Go to the HELATH Video section and you will see there are two videos on TB Surgery.

Edited July 19, 2007 by farangene

[seonai]

Huge thanks Farangene or that!!!! Amazing. I din't know Andrew was having surgery. Thanks

[rak sa_ngop]

When I had two skin tests two months ago both had NO reaction at all!!!! I don't understand why.

Sorry to read about your situation. I had TB when I was a kid 50 years ago and I had PPD skin test carried out last month (one of three skin tests to investigate my immune system) . The test still showed a reaction to my 50 year-old infection resulting in a reduced response 12mm induration (positive response > 15 mm). Not sure why you would have had no reaction.

Best of Luck

[Mossfinn]

When I had two skin tests two months ago both had NO reaction at all!!!! I don't understand why.

Remember Seanai, I passed the skin tests as well, although unusual this is not unheard of.

It could be down to your bodies immune system working in overdrive or a particular drug you are on masking the test and showing negative.

As for the actual reason, I guess the specialists are in a bit of a quandary as can be seen in their prognosis up to now.

Speak Soon

Moss

[Sheryl]

Hi Moss and Sheryl, thanks for the info. The cavity is in my right upper lung and it's about 5 x 4 inches. The consultant believes the TB is living in there. I myself feel that it fills up with mucous and then gets infected. I tested neg (aafb) in January and then ragingly positive in March again. I was on Rifanah, Izoniazid, Ethambutol, Clarithromycin and Ciprofloxacin for two months this time. Now down to Rif, Izon and Ethambutol and will be for the next 9 months. When I had two skin tests two months ago both had NO reaction at all!!!! I don't understand why. My feeling is to go with the bigger op i

I have to have surgery, the other op sounds violent and awful.

Seonai, what have the culture/sensitivity tests shown? Usually this sort of problem occurs when the bacilli is multi-drug resistant. Since you mention being on cipro I suspect this is the case with you.

In MDR (multi-drug resistant) TB it is difficult to get a full cure through medication alone and surgery is indeed often required. So I think (assuming I am right that it is MDR TB) that the advice you have been given is correct. The good news is that surgery usually succeeds in achieving a permament cure (85 - 90% of the time). The bad news, of course, is that it is a major operation. However in the hands of an experienced thoracic surgeon and with competent nursing care post-operatively the risks are low. Do ask the surgeon directly how many such procedures he or she has performed and the mortality rate for that procedure in the hospital where you will have it done. Hospitals keep records on mortality for different types of procedures and this information can readily be obtained.

In terms of type of procedure, I definitely do not recommend thorocotaplasty. In addition to being deformative it sometimes does not work and is considered almost obsolete these days now that improved surgical and anesthetic techniques have made open chest surgery much safer than it used to be. You should have a pulmonary resection, i,.e., removal of the affected part of the lung. The only reason I can think of for doing a thorocotaplasty would be if the patient were too weak, elderly or ill to undergo the more major but more effective open procedure. That it was even mentioned to you as an option makes me wonder about your overall health/immune status, as does the negative skin test.

If you are very thin and not getting enough nutrition, that could explain it but it is also a a serious warning sign that you need to do something to improve your nutritional status, otherwise you will sooner or later get ill with something else. Also, if your nutritional status is poor it will affect the recovery from surgery. I assume they have already looked into any other problems that might be compromising your immune system.

Feel free to contact me if I can be of any help, and all the best

Sheryl

Edited July 23, 2007 by Sheryl