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
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.
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
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.