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Concerned mother of 19 yr old son

 
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AnnieB Reply with quote
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Joined: 30 Apr 2006
Posts: 4
Location: Twickenham

PostPosted: Sun Apr 30, 2006 9:02 pm    Post subject: Concerned mother of 19 yr old son
 
Hello to you all - I am a new member and relieved to find this site today.

My son (just over 6ft - don't know where he gets it from, I am just under 5ft) has had a spontaneous pneumothorax 4 times now. The last 2 times he has had to have it aspirated. He found this procedure so uncomfortable that he was very reluctant to actually go to hospital this last time. I heard him coughing during the night and realised he was in trouble. Got him to hospital eventually and xray confirmed pneumothorax (about 50% this time).

I am particularly worried because my son was not offered any pain relief for this procedure. When I queried it, one of the medics said it wasn't worth it as then he would have to have 2 needles. I wouldn't call that tube they inserted into his lung a needle!

Last August he saw a Specialist who didn't know what to make of his pneumothoraxes (thoraces??). He had only had 2 by then and didnt believe he had Marfans. Unfortunately my son refused to attend the Cardiologist Appointment that he was referred to because he was completed freaked out at the prospect of having Marfans.

So now, it seems, we have to be referred all over again. I will write to my GP and see if we can bypass that Specialist again and go straight to the Cardiologist. Also a Lung Scan was mentioned at A&E the other night, can't remember the exact name of the test. We return to the hospital tomorrow morning to check if the lung is reinflated or whatever the term is. The aspiration procedure was not completely successful last Wednesday morning and he has to have an xray to check.

He has been at the pub all day at some Charity event and even did the 3 legged pub crawl despite me warning him against doing this.

Am feeling very fed up at my powerlessness with this situation. Sad
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Ceebee Reply with quote
Site Admin


Joined: 05 Feb 2006
Posts: 212
Location: Norway,Oslo

PostPosted: Mon May 01, 2006 12:41 pm    Post subject:
 
Hello. Thank you for your post.


The chest tube can in no way be called a needle. but i hope he got a local anestetic befor they cut him up.. ( atleast i did, all 4 times)

Marfan is a exremly rare disease, and i dont think your son has it.
Since he is so high (6feet) and probably thin as well. It is more than normal that this happens more than once.

I have had 4 collapses. 2 VATS surgerys and 4 chest tubes.
I know the chest tube is hell. but it better than the surgery.

The best thing is to go to a specialist and check out whats the best thing to do. Do a CT scan and to see if thers is any more blebs in his lung.

If so. i think you should do a VATS (video assisted thoraxic surgery(i think its called))
I have had that. and it really helps.

Try to get your son to enter this site and ask us some questions too. Most of us in this site has had almost the same experiences as he has, or more.

Some go through this without any recurrences and some dont.

if your son is using MSN he can add me to his list.. @ Christian_birkely@hotmail.com and (ross) mightyonelung@hotmail.com
We will do our best to help him ( and you ) trough this.
_________________
Contact me for ANY questions.
4 Sps. 2 Vats.
facebook: Christian Birkely
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AnnieB Reply with quote
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Joined: 30 Apr 2006
Posts: 4
Location: Twickenham

PostPosted: Mon May 01, 2006 1:40 pm    Post subject:
 
Thank you so much for your response. I mentioned this site to my son earlier while we were on the way to the hospital actually. I mentioned that there were people of his age discussing the condition. He's not one for writing or typing tho'! He had a conversation yesterday with a girl who also has this conditon. She has had ops on both lungs and he said how good it was to talk to someone else who's 'got it' as he feels very alone with it. I will definately introduce him to you bods. Thanks again for the warm welcome!
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Rossoe Reply with quote
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Joined: 05 Feb 2006
Posts: 301
Location: Devon, UK

PostPosted: Mon May 01, 2006 2:48 pm    Post subject: Re: Concerned mother of 19 yr old son
 
Hi Annie,

I can imagine how it must feel, getting to a specialist and confirming if he has or hasn't got Marfans is fairly important - but I know where he's coming from, it scared the life out of me when it was first mentioned after my first op. Turns out I didn't have enough of the symptoms to warrant further investigation. Although it does seem a frightening condition there are various degree's to which the marfans can affect you and there are some interesting drug trials going on for treatment on connective tissue disorders (admittedly alot are in America) But knowledge is power and he's young so it's best to find out early and be pro active about the best way to live your life in terms of possible diet changes lifestyle alterations and maybe even drug therapy if a treatment crops up in the near future.

That said, he may well be like a lot of us SP'ers and simply be in the tall slender club Wink and have a rather frustrating but fairly manageable condition.

Have you had a look at the follwing website for info ? :

http://www.marfan.org/nmf/index.jsp

I assume he had a CT Scan - where they try and search for blebs ! let us know how he does, I hope the current SP heals up.

Ross


Last edited by Rossoe on Mon May 01, 2006 6:00 pm; edited 1 time in total
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Sam Reply with quote
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Joined: 12 Feb 2006
Posts: 43
Location: Brussels/London

PostPosted: Mon May 01, 2006 5:05 pm    Post subject:
 
Annie,

I think your son will find that it helps to take a look at this site. I went through the whole surgery and recovery period having made contact with Rossoe through a different site a few years ago - anyway, it was a huge relief to find someone else with the same problems, the same age and all the like.

I wish your son well - and you! I know the whole thing was probably far worse for my Mum as she worried so much! I knew I was OK but she could only listen to what me and my doctors said.

I think the best thing you guys can do is be informed - find out what is wrong and what all the options are.

All the very best

Sam
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AnnieB Reply with quote
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Joined: 30 Apr 2006
Posts: 4
Location: Twickenham

PostPosted: Mon May 01, 2006 9:57 pm    Post subject:
 
Thank you Sam and Rossoe for your replies. Robert didn't have a CT scan. Perhaps this will happen when the GP refers him back to a Specialist. We saw a Specialist last year and he more or less ruled out Marfans (we went to West Middlesex Hospital). Yes I have been on the Marfans site many times especially last year and I understand quite a bit about the condition and how it needs a specialist in the syndrome to make an assessment. I'm not confident that West Mid has that specialism.
Time to get Robert onto you lot.
Thanks again.
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