sleep,sports and other observations

[kenscott]

My symptoms (following a car crash) are very similar to yours. I didn't realise it was unilateral diaphragm paralysis until a long time after. I thought it was just severe bruising etc. I was a marathon runner and keen footballer (soccer) because I was still fit . I am 55 now but still played at a reasonable standard.till 2010/11. The accident was 15 months ago. Like you I was told the normal prognosis was recovery over two years. There has been no improvement now for over a year. I can now lay down and sleep if I pace it gently, I am OK in day to day life but find sudden responses a bit scary when I lose breath very very quickly, get light headed, feel as if I might feint or black out but never actually do. I crave to take part in sport again. the best I can do, similar to you, is on a treadmill at hardly walking speed and then with numbingly small increments get up to a plod for a mile or so. It might not seem much but it feels like an achievement. I am also being "prepared" for plication (i.e. letting me know what might need to happen) and want to know if it improves things so that I may run again or does it simply relieve symptoms. I feel as if I have permanent stitch (US =side stitch) with various degrees of severity, any breathing or health issues have a dramatic effect on overall efficiency getting around. On bad days I can get out of breath getting dressed. My breathing is also shallow and I have experienced identical thoughts about sleep. I sleep less,wake more and can't get back to sleep. I don't sleep as deeply and am normally tired. I want to nap constantly. Like you, I do realise how lucky I am, but for an inch the other way I wouldn't have the luxury of complaining and everyday the streets have people with much harder and worse lives. I have found it very difficult psychologically to have gone from being my children's dad when I left for work that day and feeling like their grandad from now on. I am still finding it particularly hard to accept that active sports of any kind will not feature any more in my life. I would love to read responses that have had a different experience but have not seen any yet. I did research the work of Dr Kaufman in USA who appears to have done uniquely remedial work in this field. I live in Britain though. I am eternally appreciative that the National Health Service have looked after me at no real cost to me but at great cost to them but feel envious that there appears to be pioneering work going on in USA
Your comments seemed the most similar to my own situation and concerns that I have read. Best wishes to you in the coming year. I suspect we both realise that our situations could have been much worse and want to make the best of the chances given to us. Take care and thankyou for what you have already written as it has helped me recognise a similar soul!


This discussion is related to Diaphragmatic Plication?.

[kenscott]

Hello,Phrenic nerve transplants don't appear to be an option on the NHS. I spent time with surgeon last week. The outcome , as I understand it, is plication will not stop the diaphragm spontaneously recovering if it still has that surprise in it. A greater mobility may well follow . That may include more active pastimes but probably not swimming, cycling or running (First two because of lung/ diaphragm  constriction/ extra resistance). Recovery may well be a period of about a week in hospital, plus a couple of weeks housebound resting. I've booked in for July!
The downside seems to be the possibility of intercostal nerve damage on entry. It seems this may leave permanent and irreparable (pain relief only) pain. Do you have any other information
a) re post operation what a patient might experience, not just the much hoped for lung efficiency
b) the probability (% of occurrences?) of such nerve damage
c) any way of measuring the severity of likely pain i.e.equal to now or worse is in my mind but is almost impossible to compare?
An interesting comparison between systems; despite specialist surgeons re diaphragm plication there doesn't seem to be the equivalent surgery re grafting/nerve regeneration of someone like Dr Kaufman. When I have read patients' accounts, though, I was shocked as they also describe all the various finance deals re hotel rooms, care etc (I daren't even ask how much the operation costs!) and I thank Heaven for the wrap around care, free at the point of need, that the NHS gives us in the U K
In advance, thankyou once again for your time

[Paderla Anitha, DNB]

Hello and hope you are doing well.

When there is paralysis of the diaphragm, that section of the diaphragm is pushed up, there by compromising the lung function. Surgical resection of this segment will promote expansion of the lower lobe of the lung. According to studies done this therapy has shown clinical, oxymetric, and spirometric improvement.  As for the pioneering work that Dr Kaufman is doing, he is replacing the paralyzed phrenic nerve with good results. It is a relatively new technique and the outcomes will depend on how long the nerve has been paralyzed and if there are any co morbid lung conditions.  The improvement post-surgery takes about a year.

As it’s unlikely that your condition is going to improve, you can discuss these options with your chest physician.  He can guide you, if you are the right candidate for phrenic nerve transplant or not. Good Luck.

Hope this helped and do keep us posted.

[kenscott]

Thanks very much for finding time for a reply. Its appreciated. I realise that plication relieves some of the obstruction (or have i got that wrong?) .My understanding, though,is that the condition (i.e state of the patient) post operation is then permanent. Is that condition likely to be one where some level of sports activity, albeit much gentler than before and probably different activities, might be possible? Or is it that the operation is intended to reduce discomfort and distress principally and unlikely to replace the original range of operations that a fully functioning diaphragm and lungs gave? I keep feeling that I'm making it worse hoping to recover some of my old involvements unless there are reasonable grounds to be optimistic. It's been difficult watching the months go by and realising that it hasn't begun to heal spontaneously. It hasn't been 18 months yet so I haven't given up hope or a positive attitude, but there's a difference between being optimistic and being naive. Is the kind of work undertaken by Dr Kaufman relevant in this field or is it considered niche or experimental? Or is it inappropriate to ask you something like that in a public forum like this?
Thanks, once again,for the reply and I look forward with great interest to anything else you may be able to add

[Paderla Anitha, DNB]

Hello and hope you are doing well.

According to studies done, unilateral diaphragm paralysis (UDP) decreases pO(2) substantially and breathing capacity by more than 1/3, but spontaneous recovery is possible and this occurs more commonly in children.  In patients who are incapacited; diaphragm resection produces clinical improvement via lower lobe re-expansion. So, if your symptoms are troublesome, please discuss this surgical option with your doctor.  Good Luck with your recovery.

Hope this helped and do keep us posted.