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Son with recurrent SP
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Melanie Taylor Reply with quote
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Joined: 02 Mar 2006
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PostPosted: Wed Mar 08, 2006 8:19 pm    Post subject: SP's
 
Hello,
Just found this sight... This is great.
I've been trying to help my son age now 19 through this tough time of having so many collapses.
I think he's had about 15 that I know of. Reason I say this is because he doesn't tell me because I worry so much.
His started at age 16 after he had, had Mono. I was taking him for a check up and he had a cough.
Doctor did an x-ray gave him some medicine asked us to come back in a week. He kept telling me his back hurt like a pulled muscle no way could he get the pain to ease up.
Next day the doctor call and asked us to get him down there quick.
He had a 40% collapse. They sent us to a Childrens Hospital and they placed a tube in his chest.
A month later the other side had a SP.
We then were told that he had lots of blebs and would have to have surgery.

The next day he had surgery on both lungs where they scrap and staple.
He looked terrible when we saw him. He was in the hospital for 14 days.
He was ok until the fall and one after the other happened.
So they did a chemical pluradises on the side that had the most sp's.
That worked for a month and we had another.
He says no have happened on the left side after the one time after surgery. But the right side just keeps on having them.
Last one was yesterday.
He says no more surgery unless its more than a 30%.
Let me know what you think....
Melanie Taylor
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Ceebee Reply with quote
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Joined: 05 Feb 2006
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Location: Norway,Oslo

PostPosted: Wed Mar 08, 2006 9:16 pm    Post subject:
 
Thank you for your post.
me and Ross have both had our years with sp. so we had to get together and make a site. just for people like you.
So thank you for your comment Smile

Now to your (or your son`s) case.

I really feel for you in your concern for your son.
The problem with this "disease" is that it not only affects your body, it really messes with you mind to. so i really understand your son , when he says "i want a garantie for this to work."

When i had my first VATS op on my left side, i was told that this wil never happen again. one year later it collapsed again..
So i had to get a new one.. (VATS) They also removed a part of the top of the lung. ( it still holds to this day ... 2 years after.)

the problem with guaranties is that there are none in this situation.

I think you should get more than one checkup from more than 1-2 doctors.

Also you did not mention anything about a CT-scan. has he had any?

The ct-scan can find blebs in the lung(or atleast the doctors can).

So there is a larger chance to find the blebs and to make sure that they remove them.
I think i have had about 10 ct-scans after my first SP.

I hope this helpes you in your concern for your son. I know its hard on him.

If there is anything more i can help you with. Do not hessitate to ask. i will try to answer all of them. (or find someone who can)

One thing you could do, is get him on this site. give him my E-mail or MSN name so i (we) could talk to him.( msn: Christian_birkely@hotmail.com )

It was a site exactly like this one that got me out of the dark place i was in after my second Op.- ( and were i met my good friend Ross)

I also found a new hobby. putting together small cars Smile
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4 Sps. 2 Vats.
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Rossoe Reply with quote
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PostPosted: Sat Mar 11, 2006 6:47 pm    Post subject:
 
It's really harsh for him to have to go through all that before 19 ! I'm sure he's a much stronger lad mentally after all those collapses.

If he does want to chat with folks that have had similar experiences that's great, but I remember when I was a similar age and having had the collapses + surgery I just wanted to ignore it all and pretend like it never happened, I spent the next 6-7 years without even talking about the whole experience. but then gradually I had an urge to find out more.

Have you had a talk with the surgeons and found out what the next step would be if they continue collapsing ? if so what did they suggest? The worst thing is to live with the constant fear of collapse. it's extremely draining and you often feel very limited in what you can do.

Whilst I'm not a fan of any major surgery for this condition some have better long term recurrence rates and he would need to discuss this in depth with the surgeons.

After going through surgery once (and bi lateral) at that ! there's no wonder he wants to avoid any more ops.

If it's seriously affecting his life, something needs to be done. it's alot of pressure on one so young - I'm sure he'll make the right decision.

One thing I must say is that my mother was also fairly protective, but she learnt that I knew when things were bad enough to warrant attention and ultimately she was a rock for me through most of my surgeries and she must be the only person other than those that have actually had SP's that really understands how it feels and the emotions involved.

Keep us up to date, give him my regards.


Last edited by Rossoe on Mon Feb 04, 2008 11:05 pm; edited 1 time in total
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godblessask Reply with quote
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PostPosted: Thu Apr 27, 2006 3:08 pm    Post subject: Feeling so lost and sad/afraid
 
My son has his first SP when he was 14, in Jan 2004. He is tall and thin. He had a chest tube inserted and was in hospital for about 4 days.

After that, he led a very normal and active life, playing all sorts of sports including soccer, swimming, athletics, roller-blading, martial arts, etc.

Then yesterday, he had his 2nd SP. Again he has a chest tube inserted and the doctors have been talking about the possibility of VATS and pluerodisis.

I feel so sad that a strong and wonderful boy is being afflicted by this and I keep wondering if there was anything I did to have caused this. I smoked for many years but NEVER anywhere near him. I read somewhere that smoking may result in problems for your offspring as it affects the sperm.

Also, the doctors made it sound as if the surgery would fix the problem and that the risk is miniscule. After reading the replies on this board and elsehwere, I am worried about a few things:

(1) any danger of using talc in pluerodisis as I've read that there is possibility of Acute Respiratory Difficulty Syndrome, which could result in death in a few cases?

(2) whether VATS could cause damaged nerves that he would have to live with for the rest of his life and impact on his well-being and normalcy.

(3) whether the above would really prevent a reoccurence which is the only reason why we would subject him to the surgery.

I am now torn as to whether to leave it and pray that there will not be another reoccurence (given that it was about 15 months between 1st and 2nd SPs) or have the surgery so that he doesn't have to worry about it ever again.

I aplogise for my ignorance as this is very new to me. I thought (and hoped) that the 1st episode would be the last, so have only started reading up after the 2nd episode.

Thank you so much for the information and for the sharing. I really feel better knowing there are others that I can reach out to.

P.S. Someone also mentioned that taking large doeses of Vitamin C may help reduce further episodes. Not sure if this is true.
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Ceebee Reply with quote
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PostPosted: Fri Apr 28, 2006 6:38 am    Post subject:
 
Hello , and thank you for your post.
We are here to help others Smile

I have had a series of SPs and i have had a couple of Vats on my left side.

First i would like to start by answering the questions im familiar about.
The Vats surgery is not that hard, but it wil give him some pains afterwards in his side.
But im feeling fine now and i have not had any recurresnces after 2 years.
If he gets the VATS it is vital that he starts to train soon after his op.
(maby after 1 year or so.)

And he needs to understand that the VAts is a safe and nice way to fix any blebs in his system. ( if they get them all).

i did not do any training after my op, and i think that i could have had a better "everyday" if i did. I was also very active before my ops. Now im not.. at all.

to the question about the C-vitamins.

i think it is always smart to have a good diet, and to get all the vitamins you should have. but that the c-vitamins it selves fix the problem, im not sure about.

hope he gets better and live a nice and Bleb free life after this second (and hopfully) last SP.
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4 Sps. 2 Vats.
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vrjones Reply with quote
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Joined: 27 Feb 2006
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PostPosted: Fri Apr 28, 2006 11:00 am    Post subject:
 
I really feel for you and your son. It's a very difficult decision to make - whether to opt for surgery or not. I've just had to make the decision myself after 2 pneumos on the same side - 3 years apart. I've just had VATS pleuodesis and apical resection where they take out the very top little portion of the lung where the blebs are most likely to be (at least in tall skinny people). I only had this surgery 3 weeks ago so I can't tell you whether I'll ever get another recurrence, but I'm already glad i had it done. It was carried out throuh 2 ports - my scars are 4cm and 2cm long and have already healed really well. My pain was always really well controlled in hospital and while it wasn't a pleasant experience - it certainly wasn't terrible and I'm really glad i had it done. Already I'm fast walking for an hour and a half a day and while I still have some pain form the surgery I haven't had any nerve damage pain other than skin sensitivity in another part of my chest. I hope to be back doing sport fairly soon. It's a scary business, and we'd all much prefer there were more non-surgical options, but by having this surgery I'm told i've reduced my chance of a 3rd pneumothrax on this side from 40-60% to 3-5%. It's not absolute, but for me it seemd worth the trade-off. Everyone's situation is different and I know there are lots of people on this site who have had different ops, repeat ops, recurrent problems or long term pain and that's terrible. But there are lots of people out there who have had successful ops and you have to bear in mind that they might never feel the need to visit this website - ie this website is fantastic and a really vital forum for those of us with ongoing pneumo problems to share our experiences, but it may not give you a representative picture of what the surgical outcomes are for every-one. You and your son will have to make the decision that's right for you, but I wouldn't be too afraid of surgery. Clearly there are risks that need to be weighed up, but I know a number of people who, with the odd bout of aches and pains (which some people get after pneumos without having had surgery) are living life to the full after surgery. I wish you all the very best - we've all been there and we all feel for you both. Just keep firing off the questions - we all wish there was better information out there, and hopefully in time, there will be, and these decisions will be less difficult. All the best, Vicky
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godblessask Reply with quote
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PostPosted: Fri Apr 28, 2006 10:22 pm    Post subject: Your replies made me feel so much better - thank you!
 
Hello Ceebee and Vicky,

Thank you so much for your replies, your support and your good wishes. They really do help me a lot and I am so grateful.

Yes I was also thinking that there must have been many other people who have had good experiences with their operations who have gone on with their lives and don't come to a board like this, so the experiences on this board may not be represenative and thinking it is so could cause me not to opt for the surgery.

Don't get me wrong. I am so glad that there is a board like this and I can see that people here care very much for one another. Without a board like this, I would be so lost and feel so alone.

It is my fervent prayer that everyone here will continue to improve in their condition and totally be rid of it as soon as possible. Sometimes when life is too good, one takes it for granted and stop appreciating that each normal day without pain and discomfort is already a blessing indeed.
My 2 days with my son in the children's ward where we saw many very young kids with cancer has really opened my eyes that we are already very lucky, despite what has happened to Aidan (that is the name of my son).

My wife and I spoke about it and we are thinking of just waiting and hoping that there won't be a 3rd occurence but if there is, then we will go for the VATS and whatever else the surgeon recommends, as long as the risk is minimal. However, we will also allow my son to make that choice as it is him who has to go through this and he should be able to decide what he wants.

Also, the doctor is referring us to a clinical geneticist to determine if Aidan has any form of connective tissue disorder. He has some characteristics eg very tall, thin, long fingers, double pneumothroaces, etc. Previous tests using heart scan, slit lamp tests show negative correlation so I hope there is none.

Please keep me updated of how you progress and I will do likewise.

God bless everyone on this board.

Best Wishes,

Paul
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Rossoe Reply with quote
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PostPosted: Sat Apr 29, 2006 10:50 am    Post subject:
 
godblessask wrote:


(1) any danger of using talc in pluerodisis as I've read that there is possibility of Acute Respiratory Difficulty Syndrome, which could result in death in a few cases?

(2) whether VATS could cause damaged nerves that he would have to live with for the rest of his life and impact on his well-being and normalcy.

(3) whether the above would really prevent a reoccurence which is the only reason why we would subject him to the surgery.

P.S. Someone also mentioned that taking large doeses of Vitamin C may help reduce further episodes. Not sure if this is true.


the deaths attributed to Acute Respiratory Difficulty Syndrome after talc is used, are more than likely to be found in older patients who are weaker and less tolerant of invasive surgery, and it's not known to have very good success rate in reducing recurrence. As far as I can tell surgeons seem to avoid using it for younger patients.

VATS will in all likelihood cause some degree of nerve damage, because the nerves between the ribs (intercostal) are cut, these do regenerate but at a very slow rate, some people have on going numbness in patches around the chest, and others regain sensitivity - it's a bit of a lottery. massage and stimulation of the area affected is known to improve nerve recovery.

Check the statistics on "Recurrence rates" in the Info section at the top of the forums for an idea of the success rates between different types of surgery.

Vitamin C will do you no harm, and it has many beneficial affects - along with Vit E it's a great antioxidant - it's unlikely you will see much research into vitamins because the pharmaceuticals don't make any money from them ! so it's kinda left for us to experiment. A good quality Multi Vit along with a great mixed diet will go a long way to improving lung health along with avoiding any smokey area's.

Vicky makes a very good point in that alot of the most extreme cases are often aired on sites such as this, so bear that in mind. I'm glad you found us and please feel free to ask as many questions as you have, one or other of us will prob have some personal experience with the various aspects of SP's, I hope Aidan has had the last of his collapses.
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dakotalee Reply with quote
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PostPosted: Mon May 01, 2006 1:10 pm    Post subject: Talc Pleurodesis
 
Gday Godblesask,


Hello My name Is Melissa and Im from australia.My lung collapsed 4 yrs ago 100% in the left lung.I had never heard of this condition before so it took me by surprise.
It happened at 10am in the morning while I was at work and it was 4pm before I got to a hospital--it took a whhile for the docs in my home town to do x-rays and then decide to send me to the city-Perth to a major hospital.when they admitted me I could barely breathe and I was starting to go blue under my eyes so they gave me oxygen even though my levels were 98%-weird I know.They left me overnight hoping that it would go up on its own but it didnt so the next day they inserted a chest tube.I was in hospital for 10days with this tube thinking it was working but my lung then collapsed again so they then decided to do emergency surgery which was the talc pleurodedsis.This worked for another week-it then collapsed again but only slightly.I was in hospital the whole time thank goodness.After 3 chest tubes and Talc Pleurodesis it finally went up one month after it had collapsed.
It has now been 4 yrs and its still up.The only probs I have had is I couldnt work for 6 months--The docs only told me after that I would get some sharp pains in that area as it was the talc being constantly active that gave me the pain--I would get shortness of breath and get tired.I have had all of these things and will continue to have them till I die but without the operation I might not have had such a good result.I am so thankful that it has not collapsed again.There is never any guarantees in any operations that anyone has but it is best to ask your doctors as many questions as possible and if possible get a few opinions--The thing is is that everyone of us is different so what might work for one might not work for someone else.I hope this has helped you a little bit.
If you would like to ask anymore questions please feel free and I will try to help--I can only tell you what I personally have been throught though.
All the best
Melissa (Australia)
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vrjones Reply with quote
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PostPosted: Tue May 02, 2006 11:47 am    Post subject:
 
Hi Paul - good luck with the geneticist re connective tissue disorder. I wouldn't be too freaked out before finding out some more information though. I'd say very many of us who have had lung collapses are tall and thin with long fingers - I certainly am - it seems to go with the territory. I was also chacked for Marfan's syndrome - it involved checking my heart and looking at the roof of my mouth - not too sure what they were looking for actually! From what I understand from the information we have thus far on this problem, in the majority of people its basically a mechanical problem resulting from the shape of the lung in tall thin people resulting in the top of the lung being under more tension. The possibility of a more widespread connective tissue disorder is obviously there, but not the most likely explanation. It's annoying that they don't seem to be able to tell us why some tall thin people have this problem and others don't, but fingers crossed that your son doesn't have to go through another collapse. I think your strategy sounds sensible. As Rossoe says it's the luck of the draw how your surgery goes, but there are papers showing that while 10-15% of people suffer ongoing pain from some form of nerve damage - that means that 85-90% of people don't suffer from this post-surgery long-term pain and I think you should take some comfort from this. Obviously surgery carries a risk, but it has to be balanced against the psychological effects of wondering when your lung will next collapse, which while invisible is very damaging, as any-one on this site will tell you. It must be awful to have to help your child to make this kind of decision - it's somehow easier to make for yourself. All you can do is arm your son with the facts you have and if he decides to go for it, make sure you have access to a good surgeon with plenty of experience of this condition. Things can seem quite bleak at times, but I'm sure you'll look back on this some day as just a bad few years and I'm sure your son has excellent health to look forward to in the future.

All the best,

Vicky
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godblessask Reply with quote
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PostPosted: Tue May 02, 2006 12:29 pm    Post subject: Thank you Rossoe, Melissa, Vicky
 
Hello Rossoe, Melissa, Vicky,

Thank you very much for your sharing and information. It is indeed very helpful to me.

We will monitor the situation closely and see what the thoracic surgeon and geneticist have to say.

Yes, the doctors in Singapore (when he had his 1st episode) said he may have Marfan's Syndrome but we have had the 3-D heart scan, ECGs, Slit-Lamp test, body examination (palate, chest, arm span, etc) and these were all negative for Marfans. He has 2 symptoms: tall, thin, long limbs + pneumothoraces. So I don't think he has Marfans but the padetrician said there could be minor variant of connective tissue disorder.

I am praying very hard to God that it's not connective tissue disorder and that it's just a tall thin problem that will stop with these 2 episodes.

My fervent prayers go out to you all and I will keep you updated on progress of Aidan and I still hope it's all good news hereon.

Once again, thank you very much for your efforts and good wishes.

God bless.

Paul
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melissarice Reply with quote
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PostPosted: Mon Feb 04, 2008 10:58 pm    Post subject: Thank God for this site
 
I just came across this site today, and thank God! I read about a woman whose son had mono and then a SP. This is the first time I have found anyone online that has similar symptoms as me.

I am a tall, thin 24 year old female. 2 years ago this May I had mono and strept throat. I was hospitalized and was on the road to recovery when I started having pain in the mid-left side of my back, behind the ribs.

I work for an orthopedic, so he had his friend, an internist come and see me in the office, and pretty much told me the pain I feel in every breath I take on the left side was just from being sore from mono. From then on I have had pain breathing. As I say to my Mom, "no big deal, it only hurts when I breathe.

I had an xray, October 2006 and the orthopedic (bad choice i know) that I work for said I may have a little pleurisy, but that's it. In December 2006 the internist ordered a left shoulder MRI, which of course showed up negative, as my shoulder is not where my pain is.

Anyhow, consistantly this has gone on. My boss (again!) told me to see a manipulative therapist, b/c it appeared my ribs were out of place (from coughing with mono), so I saw the voodoo doctors (as my husband called them), and again nothing.

Still in pain, 4 months ago, my husband and I had an argument, I began crying, and realized the pain was really sharp, it hurt constantly, and then in my chest. I couldn't sleep on my left side for days, I believe this was my first SP. 2 months after that, the same thing, with the same symptoms.

Then, 3 weeks ago, I was TYPING IN CLASS, and I took a breath in, and it started again, this time was worse. My husband picked me up from school and brought me to the hospital where I was diagnosed with a 35% SP. they decided to not do a chest tube, but to wait to see if it got worse. i was in the hospital 3 days, and it did not get any better, but it didnt get worse, so they released me. I saw thte MD 1 week ago, and he said it's improved to 10% collapsed.

My question is WHEN WILL THE PAIN GO AWAY. Since this last SP, it has hurt all the time, not just breathing> i am exhausted, frustrated, and just down about it. I know people have it worse than I do, but at the moment I am in school full time and working full time, and I cant afford any off-days. Does anyone know what else could be going on? Also, I did have a CT< and the pulmonologist said I do have blebs in my lung. what does that really mean. I told my pulmonologist how long it's been hurting, and he was puzzled at why it's going on. Anyone else?

I am sorry for my novel, but I can't think you guys enough for creating this site, i am truly thankful to have found it!!!
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vrjones Reply with quote
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PostPosted: Sun Mar 09, 2008 7:07 pm    Post subject:
 
Hi Melissa,

Hopefully you're feeling better by now - I've just been out for a month having an SP op so didn't see your posting before. In my experience having had 3 sps they continue to hurt at least until they're resolved and it's taken each of mine which were 10-15% approx 10 days-2 weeks to completely reinflate. However even after this I would tend to feel quite tired and my chest would ache for at least 3 weeks post-reinflation.

In answer to the bleb question - these are little blisters on the lung which can pop causing a pneumothorax. The relationship between having these blebs and getting pnemothoraces isn't straight forward though as some people have blebs on their lungs without ever having SPs. Incidentally the condition of lungs changes over time - eg/ I had a CT scan after problems on the right lung and no blebs were found on the left lung at that time, but a year later I suffered an SP on the left.

all the best,

Vicky
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PostPosted: Sun Mar 09, 2008 9:52 pm    Post subject:
 
Vicky,

Thank you so much for your reply. I wish you a full recovery, and all the best!

Melissa
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PostPosted: Tue Apr 22, 2008 12:34 am    Post subject: My son
 
My son is in college and four hours from home. Spontaneous pneumothorax keeps interupting his life. Right when he wants to be away...he has to have help. I want him to know it is OK to have your mom help any time in life when you are ill or need a hand. How can you make that OK for him. He has had two collapses on the right lung and the corrective surgery and now two and a half years later another collapse on the left lung a month ago interupting his college. He is angry. He is having symptoms today of chest tightness and tunnel vision. They thought it might be a blood clot in the lung and released him from hospital. He has had the tunnel vision just after his corrective surgery on the right lung in 2006. They thought it might be a brain tumer but, ruled it out. Has anyone experienced tunnel vision with or following a lung collapse? My son has just turned 21. I am in Texas

Thank you
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