|
Re: catamenial pneumothorax
From: Misty (anonymous@obgyn.net)
Fri Dec 8 10:19:00 2006
Hello,
I have also suffered from a pnemothorax. Mine was a sponatneous one. My
right lung collapsed 3 times in one week. I had 4 surgeries in 7 days
and 2 of those were the same day. I also had 3 chest tubes. I had
surgery to correct mine also. They did the scope, deflated my lung
found all the blebs which were on the top and bottom of my lung. Stapled
all the blebs, scraped the lung cavity wall and applied the powder. I
know what you went through with all the pain. I am only 1 and a half
months out of surgery. Oh, I also forgot to tell you that they removed
10% of my lung. Because of all the powder and staples, my chances of
another collapse on that side are 3 to 10%. I am thankful for that. I
suffer everyday from pain. I was also not able to get my surgery for
the Endo because of all that my body has been through so, they put me on
the Lupron. Check the web for other sites on pnemo's they also have
support groups for that. I found it helpful mentally. Take care of
yourself!!! And Good Luck~~~
Misty
I forgot, the surgeon also said that my collapse had to do with my size
and could also be bacause of my cycles. He found no endo present on my
lung.
At Mon, 23 Oct 2006, anonymous@obgyn.net wrote:
>
>I am a 36 year old female diagnosed with Catamenial Pneumothrax 3 years
>ago. I had several collapses, 8 to be exact, before it was suppose to
>be fixed by surgery. I tried continous birth control for 6 months, I
>was on the strongest pills they make and they didn't work to stop my
>period. I was finally approved by my insurance company to have luprone
>shots, 1 a month for 6 months to put me into menopause. They didn't
>work either, I had break through bleeding after the 3rd one.
>
>I was collapse free for about 10 months, then I woke up one morning and
>it had collapsed again. This time it wasn't any where near time for my
>period. Just time it was spontaneous!!
>
>At the end of the month I had surgery to fix it. I did have 3 prior
>visits with my surgeons and alot of questions they had to answer before
>surgery. One problem, they never in all the times I asked, said it
>could happen after surgery. What I got when I asked that is, they never
>had it happen to anyone after surgery. They should have told me it
>could happen again.
>
>They told me it would be done my scopes, if they did see the holes in my
>diaphram, they would have to make a bigger cut to sew them up and do the
>pleurodesis then. Only 1 problem, they left out a bunch of details.
>Like the larger cut would be in my back, just below my shoulder blade
>and I would have a chest tube in and how much pain I would be in. I've
>had 2 kids and can handle alot of pain, but this was terrible. It took
>me 2 months to recover from this and I wouldn't wish it on anyone!
>
>Then 5 months later, the collapses started again. They aren't like
>before, more painful, because only a small portion at the bottom of the
>lung didn't take. I don't get relief when I lay down now, I can feel
>the bubble move and shift around in my chest, when I bend over or breath
>deep.
>
>The same surgeons wanted to go in under the ct scanner and bleed out the
>air and put in bleomycin. They just left out the part about it
>depleating my white blood cell count or completly wiping it out!
>
>I've had 2 other surgeons take a look at my films and surgery report,
>they said they would use a sterile powder to stick the lung, but it may
>require the full surgery I had before. I can't go through that again,
>it almost killed me the 1st time.
>
>I'm looking for anyone else, that's had a similar experience or who can
>refer a specialist at Catamenial Pneumothorax surgeries or procedures.
>
>Thanks!!
>
>At Sat, 30 Apr 2005, anonymous@obgyn.net wrote:
>>
>>At Tue, 20 Apr 2004, Chris wrote:
>>>
>>>Hi, I don't know anything about this condition, but someone posted this
>>>website recently and I think it has to do with catamenial pneumothorax
>>>(if that has to do with having endometriosis on the diaphram). Thought
>>>you might find it
>>>interesting...http://members.aol.com/wldflwr716/page4/wildflow.htm.
>>>Chris
>>>
>>>At Tue, 20 Apr 2004, Suzanne wrote:
>>>>
>>>>Hi,
>>>>I am a 35 year old female who has the diagnosis of catamenial
>>>>pneumothorax. I am curious to know how your condition is progressing
>>>>and any other women you have found with this problem and their
>>>>experiences. Thanks
>>>>
>>>>At Thu, 5 Feb 2004, anonymous@obgyn.net wrote:
>>>>>
>>>>>Hey! This is the first time I've posted too. I am a 19 year old female
>>>>>with a history of catamenial pneumothorax and a diagnosis of thoracic
>>>>>endometriosis. Every once in a while I'll find a posting online from
>>>>>someone with the same problems, but as anyone with the condition
>>>>>knows--it is rare...and annoying. I had my first collapsed lung when I
>>>>>was 14 and have had a total of 9 hospital admissions for pneumothoraces,
>>>>>4 lung surgeries and countless other episodes that have resolved on
>>>>>their own. Doctors are stumped by this problem, so finding others and
>>>>>talking about it seems to be a last resort. Anyone interested in the
>>>>>details of my medical history or surgeries feel free to email me at
>>>>>Mego348@temple.edu Thanks!
>>>>>
>>>>>At Fri, 28 Feb 2003, anonymous@obgyn.net wrote:
>>>>>>
>>>>>>At Thu, 13 Dec 2001, Abby wrote:
>>>>>>>
>>>>>>>Hi! This is the first time I've posted. I'm 26 years old and have had
>>>>>>>three collasped lungs in the past year. Two have required chest tubes,
>>>>>>>I've had thoracoscopy and also chemical pleurisy. Even though all three
>>>>>>>began on the day I started my period, some of my doctor's will not say
>>>>>>>for sure that it's endometriosis. It's been a rough year. I'm very
>>>>>>>interested in finding someone I can talk to who's lived through this.
>>>>>>>Maybe even someone who's found treatment that worked! My doctor right
>>>>>>>now want's to put me on Lupron, but I'm horrified by the stories I've
>>>>>>>heard. It's nice to finally find people who at least know what this
>>>>>>>is!!! I've love to hear from anybody, with any kind of experience. Thank
>>>>>>>you so much.
>>>>>>
>>>>>>Hi it is so nice to hear that I am not the only person in the world that
>>>>>>had the same problem. I had two collasped lunges this in the past six
>>>>>>month's. 1 chest tube and then surgery. I am recovering from
>>>>>>thorasastic surgery on my right lung.
>>>>>>
>>>>>>My OB/GYN introduced me to Lupron a few month's ago and I was sopossed
>>>>>>to start it last month, right when my lung collasped again. I was very
>>>>>>frustrated. I do want to use Lupron, however, I can't until I heal from
>>>>>>my surgery.
>>>>>>
>>>>>>What luck we have huh :). I am so glad you wrote, I thought I was the
>>>>>>only person in the world with this condition. Please stay in touch.
|
|
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)