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Pain Management 30 years after the surgeries
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Casey777 Reply with quote
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Joined: 17 Feb 2006
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Location: Ontario Canada

PostPosted: Fri Feb 17, 2006 3:43 am    Post subject: Pain Management 30 years after the surgeries
 
This topic is a thorn in my flesh....literally. I had more than 35 Pneumo's between age 14 and 19, then had two surgeries including extraction of blebs, titaneum staples, scarring the pleura to make my lungs stick to the wall of my chest.

I'm now 44, and live on pain killers and have since the surgeries. I still suffer NEW blebs all the time and "air leaks" every menstrual period or exursion involving heavy lifting etc.

My "thorn" is the doctors who say "we've done the surgeries, the staples are in place, we can't see anything on an xray, so, maybe you need to see a psychologist....or maybe its "phantom pain"....

All I can say is I'm grateful for more and more sites being dedicated to this disease.....as I've learned...its a lifelong "disability".

Casey
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Rossoe Reply with quote
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Joined: 05 Feb 2006
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PostPosted: Fri Feb 17, 2006 1:07 pm    Post subject:
 
Casey

I'm sorry to hear that you still suffer long term. I know exactly what you mean with medical proffession's reaction to problems and questions post operative. They are useless, primarily because they know there are no better options available and no research aimed at improving solutions ! so their best answer seems to be "I can refer you to the pain clinic"

I now look elsewhere for answers to my problems rather than listen to the nonsence that doctors come up with.

Out of interest how do you cope with the side affects from long term use of painkillers ? I don't touch them for fear of damage to my stomach and general dependancy worries. I assume once you start taking them you need stronger and stronger types as years go by. All part of the master plan by Pharmaceuticals I'm sure, to swell their coffers !

have you ever tried acupuncture ? I haven't, but keep hearing such good things about it's affects that I might give it go soon. although I'm not having any near my chest thankyou very much Wink
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Casey777 Reply with quote
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Joined: 17 Feb 2006
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Location: Ontario Canada

PostPosted: Fri Feb 17, 2006 9:59 pm    Post subject:
 
Hi Rossoe

I've been generally taking Tylenol 3's and 4's for most of my life but the pain became so debilitating that my doctor finally agreed to give me Percocet.

I'm not concerned about dependency because like many studies done on people who actually NEED pain killers, only about 1% ever become addicted.

I try my best to go as long as I can before taking the Percocet because sometimes it causes unwanted nausea and dizziness, so I have to weigh out the benefits to the side effects.

I have had ongoing stomach and bowel problems and feel somewhat bitter that more isn't being done for us who have this dreaded, back burner lung disease. The side effects from the pain medication create other problems which require yet more drugs...

I currently spend about $600 Canadian every month just on medication for my lung disease pain, and medication to treat the side effects.

My doctor allows me 4 Percocet per day and no more.

His reasoning is more that if I required surgery, or was in an accident or something where I needed pain medication, my body might be too used to strong analgesics and narcotics and I would suffer more.

Plus of course he tries to keep the stomach and bowel problems as minimal as possible.

He also thinks that when I'm about 55 or so, he might consider bumping me up to Demoral or something stronger...

But sadly...and I hate to admit it....I'm sorry I ever had the surgeries...

Perhaps, if I was just 19 now, when they perform the operation after only a few collapses rather than over 35 collapses by the time I received the "new" method of the day, maybe I wouldn't be in so much pain.

However, I am here, and I'm dedicated to being a listening ear or willing correspondant to anyone who has our disease.

One other note...I've developed chronic bronchitis because my lungs (and yours probably too) don't bath in healthy mucous as we breath....no...ours is stapled and stuck to the walls of our chests so phlegm and bacteria are constantly in my lungs....

There has been some suggestion of congenital emphysema, but so far they haven't been able to prove that.....I hope they don't!

My advise to you would be to go ahead and try some pain medication but like me, narrow your "per day" allowance and I also drink alot of water and try not to take the pain meds on an empty stomach.

I haven't tried acupuncture, but I'm considering massage therapy for my back and neck....I'm not sure if its related...but I cough as if I have a "smokers cough", with all the phlegm, and as I age, I find my neck, back and shoulders are becoming very sore....

Casey
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mcbodee Reply with quote
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Joined: 14 Feb 2006
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Location: Australia

PostPosted: Sat Feb 18, 2006 7:46 pm    Post subject:
 
This is an extremely interesting read, I have read very little from long-term SP patients. I often wonder whether surgery was the best idea, certainly the talc procedure but its too late to have regrets now for me. Even though my right lung has collapsed several times I still am reluctant to have surgery after knowing what its like on my left.

As for your comments regarding bowel problems, I suffer from IBS (Irritable Bowel Syndrome). However I have found excerise and nutrition is the best key for me. But sometimes I wish I could just buy a new body Neutral
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Rossoe Reply with quote
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PostPosted: Sat Feb 18, 2006 9:16 pm    Post subject:
 
I feel fortunate in that I don't suffer heavy pain, just regular discomfort and distracting aches or stabbing sensations. So i'll stay well clear of pain killers unless absolutely necessary.

And I don't get much phlegm but it might sound like it to others because I cough alot - for me it seems to open things up and clear the lazy airways.

It's definately a case of making the best of what we have, and I have no doubt in my mind I'll overcome any hurdles. It's made me stronger in mind, of that I'm sure.

Casey, have they mentioned offering you those new pain relief patches -? I think they even have them for the stronger drugs, just seems a better way of getting it into your system, avoiding stomach issues.
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Gambit Reply with quote
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Joined: 10 Mar 2006
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Location: CA, USA

PostPosted: Fri Mar 10, 2006 10:31 am    Post subject:
 
Hang in there Casey.

I don't regret my surgery last year. I have peace of mind that my lung has held up for a full year after mech. pleurodesis. And I weightlift like a maniac. I'm 26 now and never been in better shape or felt healthier.

I was on Vicodin and Celebrex for 3-4 weeks after surgery. Never needed it since then. I miss that sweet, sweet morphine from the hospital stays though! Wink
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kdools Reply with quote
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Joined: 15 Mar 2006
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PostPosted: Wed Mar 15, 2006 11:15 pm    Post subject:
 
I wrote in another topic in this forum, but now I see this is probably the best place to look for the advice I need. It's been 2 yrs since my sp and the talc procedure and the abrasion surgery. I have chronic pain in my rib area around my scar. It's getting very hard to deal with and it's really taking it's toll on me physically and mentally. I've gone to the doctor's, the ER, massage therapist and even to a chronic pain specialist, but I can't seem to shake this awful feeling. I recently heard that acupuncture may be good for this type of pain that I have. Has anyone done this or know anyone that has? At this point, I'm really willing to do whatever it takes to get rid of this pain, short of having another surgery. I did the pain killers for awhile, but I'm really not looking to become dependant on them, so I refuse to take them most of the time. All I know is that I should not be in this much pain 2 years after my surgeries! Please, I would appreciate any advice! Thanks so much!
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Rossoe Reply with quote
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PostPosted: Thu Mar 16, 2006 12:12 pm    Post subject:
 
kdools

Have they investigated if you have a trapped nerve ? I would definitely give acupuncture a go. Careful where they put the needles though ! I've read of SP's after acupuncture treatment when placed in the chest area incorrectly. personally I'm going to give it go shortly, there are points in your ear they can use to heal organs inc lungs. There was a recent documentary on tv which showed clinical trials of acupuncture proving it's effectiveness in treating certain types of pain. I too am not in favour of pain killers I always thought If i started taking them my pain threshold would drop and it then becomes a viscous circle of dependency.
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kdools Reply with quote
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Joined: 15 Mar 2006
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PostPosted: Thu Mar 16, 2006 10:05 pm    Post subject:
 
Yeah, I think that acupuncture sounds worthwhile. I hope that it helps because this pain is not fun anymore - like it ever was!!! I get very frustrated when I go to my different doctors because they never even look or feel my side, they just tell me to see a pain specialist - for all I know, there could be a trapped nerve or something else! My husband, of course coming from a family of lawyers, thinks that the surgeon did something wrong when he cut me open. I really don't think that's the case, I just think that I have severely damaged nerves.

I can't tell you how much I apprecite this website. I was pretty much feeling like a lost cause when I googled for help and stumbled across this site. It's so nice to be able to speak to people who actually understand what you are going through. Thanks so much for the advice, Ross. I'm going to set up a consultation with the acupuncturist....I'll let you know how it goes!
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guitarsweety Reply with quote
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Joined: 13 Feb 2006
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PostPosted: Fri Mar 17, 2006 4:55 pm    Post subject:
 
I think Ross presented a great place to start! I also have had pleurodesis approximately 6 months ago and while I'm not completely healed, the nerve damage is not nearly as intense as it was just two months ago!

Rossoe wrote:
kdools

Have they investigated if you have a trapped nerve ? I would definitely give acupuncture a go. Careful where they put the needles though ! I've read of SP's after acupuncture treatment when placed in the chest area incorrectly. personally I'm going to give it go shortly, there are points in your ear they can use to heal organs inc lungs. There was a recent documentary on tv which showed clinical trials of acupuncture proving it's effectiveness in treating certain types of pain. I too am not in favour of pain killers I always thought If i started taking them my pain threshold would drop and it then becomes a viscous circle of dependency.
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Thumper35 Reply with quote
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Joined: 21 Feb 2006
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PostPosted: Fri Mar 17, 2006 9:31 pm    Post subject:
 
Hi Kdools sorry to hear of another suffering after this procedure.I agree with you 100%,I had mine done 2 and a half years ago and i'm still in pain.Physically and mentally it's taking it's toll on me and i feel worse because the surgeon who performed this keeps telling me i should be well by now.He did mention that it could be nerve endings causing this.I don't think i'll ever be rid of this ,probably just have to learn to live with it.
I can't thank Ross enough for starting this site.At least we know we're not going mad and there are people out there we can relate to.
As for the medication unfortunately i'm also a sufferer of pancreatitis so i really have to take something for the pain of both.I take tramadol and co-codomal also pethidine when pain gets too much.Hope your not in too much pain today take care Trisha
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galbert Reply with quote
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PostPosted: Mon Mar 20, 2006 12:42 am    Post subject: Pain management after surgery
 
I too have chronic pain and had Vats almost 2 yrs ago. Mine has ranged from intercostal nerve damage, dislocated ribs, a winging scapula caused by nerve damage to my dorsal scapular nerve and costo chondritis. I have used a pain clinic and pain meds, the injections at the pain clinic ranged from steroids to sarapin to botox, all of which had positive results. I am scheduled to see a spine specialist to deal with the nerve issue, hopefully it has been the cause of all of the other issues. I have also used acupuncture with good results. None of my drs believed me, several suggested a phsychiatrist, others said I had gone beyond what medical science could provide. My advice is don't give up, just keep making them search to find what is wrong, they don't like the cases that make them think outside the box, or show them that they aren't perfect.
Good luck to all,and if anyone else has gotten a winged scapula from their surgery could they contact me please?
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Daffy654 Reply with quote
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PostPosted: Thu Jan 11, 2007 3:52 pm    Post subject:
 
I have chronic pain from my VATS bullectomy and pleurectomy almost 3 years ago after 2 SP's on my right lung. I have just been diagosed with COPD/emphysema/bronchitis. I saw my consultant today and mentioned the pain again,they are considering nerve blocks or epidural procedures to ease the pain but until I go to the pain clinic I have no idea which option they will decide will be more effective. I am also booked in for a CT scan as the doc thinks I may have more blebs growing that may require more surgery. I hope this isn't the case as after my first SP it took 9 days to reinflate my lung and 7 days to reinflate after my surgery 3 years ago. It was never mentioned before my operation that I might have life-long pain...if it had been I would have seriously reconsidered having the procedure!!!
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Kara Reply with quote
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Joined: 10 Jan 2007
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PostPosted: Wed Jan 17, 2007 4:20 pm    Post subject: confused
 
Hi all

I have been reading thru many of hte posts over the last few days and I am a little confused. I was told that after my pleurectomy which was done via a thoracotamy that would be it. there is a less than % chance of it reaccurring. I had blebs and Bullae? I had 2 bullectomy and they removed the tops of both left lobes the top one due to previous scar tissue and the other from the current bullae. Anyway. I thought that this would be it. I know it is likely that my right lung will go and I am not looking forward to that but is this a life long thing? Am I going to be uncomforatable and in pain forever? I went to the hospital on Monday and he explained all the nerve problems relating to my tingling numb pain down the left side and the weird breathing feeling as my body getting used to the new way of breathing as the lung has been used to sliding against the chest wall and now it is stuck to it. But there are so many posts that are presenting this as a long term permanent condition.

If I sneeze (currently hurts like hell) but it feels wrong i cant explain how it feels but its just not right. Is this normal? Im waffling now sorry. Is breathing always going to feel strange

thanks

Kara
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Anonymous Reply with quote
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PostPosted: Wed Jan 31, 2007 3:21 pm    Post subject: pain pain and more pain
 
hey everybody, i'm a 24 year old ex-singer/musician who had a sp and a blebectomy w/vats a bit over a year ago....

ive also been diagnosed with the beginnings of emphysema...

yay!

its been a year and somedays i feel worse than i did in the hospital.

not to mention the fact my right lung is even worse off...everyone is telling me to get preventative surgery but i will never even set foot in a hospital ever again after my last experience...i have pains on the right side constantly that may be indicative of something horrible going on, but i ignore them....this is probably the wrong thing to say in this forum....but....i often wish i had died in the hospital.

the pain is unbelieveable when it kicks up...

im on spiriva and albuterol and advair which means i pay around $400+ a month in order to breathe right...

i still smoke cigarettes too, because i hate my life now and can't bring myself to quit.

and i still smoke herb for the same reason.

i've quit both things and i feel just as bad off the smokes as i do on...

i was a singer in a experimental electronic music group that was a rising star....my lung problems quickly killed that dream for me, as well as my bandmates...im doing other things musically now tha dont create such a strain.....

as for the pain....i've tried alot...

percocet, darvocet, vicodin, vicodin ES, all the breathing medications which i already mentioned...

my doctors try hard, but just kind of suck...

im in a horrible mood all the time because of the fact that my career was cut short and i can't do alot of things which i used to love doing....

because of this aformentioned horrible mood, doctors put me on anti anxiety medications like diazapam...and to my suprise....anti anxiety medications actually helped the pain in my chest go away even when i was in a fine mood and sure that the pain was not due to anxiety...

only downside is i look like a bit of a freak because of how i dress and whatnot (piercings, etc.) and doctors tend to think im pill shopping....

so i just kind of suffer now.....

if i have another sp...i really hope it kills me....

lol

for real...

any advice aside from the obvious "quit smoking"

good luck everyone...may u continue to be more optimistic than myself.
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