I am so upset. Five days ago my 18 year old son had a second pneumothorax (within 2 months of the first episode) . Surgery was recommended which we agreed to in view of the high risk of recurrence. He was admitted to a public hospital, an intercostal drain was inserted, and over the past week was seen by several cardiothoracic surgeons and the treatment discussed. He was advised he would get operated on as soon as there was space on the urgent list. As a GP I did research on long term pain complications of videoassisted thoracic surgery (VATS) vs thoracotomy and decided that VATS was a far better optionfor my son and he agreed. We made it clear to the surgeons that thoracotomy should only be done if absolutely necessary at surgery. On the third day of fasting he was given the call to go to theatre. When we met with the surgeon operating that day he assured us that he had experience in VATS and that he would have VATS surgery. However when I got the call from the surgeon 2 hours later he told me that he had done a thoracotomy instead. A clinical decision he made at the time he said. He did not attempt VATS. In retrospect I suspect it was because the instruments had just been used on the previous case. My 18 year old non smoking son is now lying in hospital in severe pain while the other older smoking patient who had the procedure on the same day is up watching the rugby! The procedures were done yesterday. I am really concerned that my son will go on to have chronic pain as a result of this decision to go ahead despite our clear requests. I have read there is about 25% chance of chronic pain from thoracotomy and less than 5% chance with VATS. What shall I do ?
I am so sorry to hear of your and your son’s misfortune.
You have reviewed the literature on VATS vs. Open Thoracotomy, in the management of recurrent pneumothorax and you are correct that there are reports that VATS offers significant advantages over open thoracotomy including a shorter postoperative hospital stay, significantly less postoperative pain and better pulmonary gas exchange in the postoperative period. (Video-Assisted Thoracoscopic Surgery for Primary Spontaneous Pneumothorax - CHEST June 2005 vol. 127 no.6 2226-2230) In addition, the AACP and British Medical Society have developed Guidelines for the surgical management of recurrent pneumothoraxand you might wish to review these guidelines to determine if they were followed by your son’s surgeons. I would note, however, that the literature and guidelines also contains reports of Open Thoracotomy being advisable, for instance, in cases of excessively thickened pleura.
The surgery is done and is irreversible. This is my recommendation for you to attempt to make the best of a worrisome situation: The most important action you can take at this time is to seek consultation with other physicians, not directly associated with your son’s surgeons, skilled in the post-operative management of complications of open thoracotomy including, but not limited to pain and infection. Please proceed in this fashion, without delay.
As you know, most hospitals, medical societies and professional-liability insurance companies have programs/policies in place for the submission of grievances and you may want to avail yourself of these programs to get additional information and hopefully peace of mind, about the circumstances of your son’s surgery.
i had a thorocotomy in 2007 and spent the next two years on the couch with my 'pain management' meds. my doc told me chronic pain was rare, and his nurse suggested it was in my head. pain docs were just prescription writers.
i eventually found a plastic surgeon in baltimore who resected the trapped intercostal nerve and gave me my life back. i take no meds and can run and play soccer!
i remember how hopeless i felt though, so have these thoughts for you and your son.
insist they control the pain in the hospital. seems your brain and nerves have a memory, and the longer you experience pain the harder it is to get rid of. perhaps they can do a nerve block, i wish i had known to ask. if your doc is no help, perhaps a neurologist can offer this.
be patient...up to a point. if he still has significant pain 4-6 weeks after, get busy. your doc will suggest he might become an addict. this is bs. don't go for it. you know what pain looks like.
there is something called a palliative care dr. they are not just end of life docs...they know something about pain and this might be worth a shot.
there is a new study out on how different people respond differently to opioids and other pain drugs may be more effective for some.(this was me) so if 'the strongest pain drug we have' isn't working, ask for another. you can probably find this study online. this is something you can do now.
last, don't give up. if the pain becomes chronic, find a plastic surgeon who does the surgery i had. he didn't just cut the nerve either, he teased it out of the scar tissue and tucked it into a muscle.
my thorocotomy was unnecessary as well, which makes this all the more insulting. they forgot the biopsy, if you can imagine. no i didn't sue, because i was just trying to live.
good luck to your boy.
you may also find this interesting...
ScienceDaily (Sep. 22, 2010) — A new Mayo Clinic study found that nerve inflammation may cause the pain, numbness and weakness following surgical procedures that is known as postsurgical neuropathy. The development of postsurgical neuropathies is typically attributed to compression or stretching of nerves during surgery. This new research shows that, in some cases, the neuropathy is actually caused by the immune system attacking the nerves and is potentially treatable with immunosuppressive drugs...
i don't know if this is relevant to you but i had extreme hot knife pain down my arm, under my arm and across my chest, starting in the hospital. this was actually much worse than the surgical site on my back. i believe this was the first sign that something unusual was going on.
Thanks so much for you comments. They both affirm my concern and give me hope. I am so sorry that you suffered 2 years of pain but really pleased to hear that you are painfree now. How on earth could they forget to do the biopsy?? I hope your health troubles are over. Your suggestions are helpful. My son is doing better today. Managed a few short walks today four days after surgery. Pain level fluctuates markedly . He is on Tramadol and intercostal lignocaine as well as paracetamol and rizatriptan. Happy for him to have heaps of meds on the next few weeks - just hope it wont be forever
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