surgery

[chillijava]

hi lenny
how did you find the bristol team as regards care etc and do you regret having the surgery?



andrea

[Lenny33]

Andrea, I went through bad experience with them and later heard similar experiences. I am caught here between wanting to tell you what happened with risking adding to your suffering by creating doubt and saying something. One thing I have realized is that PN sufferers hardly ever get truly listened to. When you find a nice chap like greenslade who listens and cares this alone is seductive and because of this and an apparant lack of options and ongoing pain can pursuade you to go for procedures you may not have done when able to be rational. I will keep to facts as my opinion here is irrelevant, after reading your story i felt both empathy and concern. Greenslade & Dixon are good friends, Greenslade is dixons anaesthetist. Dixon does far more surgery than most. Far far more! After having surgery that went badly with Dixon I decided to seek second opinions from other consultants both in this country & abroad. All without exception stated there was no justifiable reason why he should of carried out what he did & were very critical. Easy i know to be critical of another professional so i accepted. I then seen a very experienced Doctor who stated that he knows of many private surgeons in UK who recommend surgery that isnt required for the money they receive. Decompression surgery apparantly pays very well for what it is! He also said he often gets asked to check surgery has been carried out on some patients as some surgeons state they have done something which they havent. This was a doctor in Bristol who had been around long time. I was appalled but appeciated his honesty to me. I am not allowed to say Dixon works in this way. You can make up your own mind. My advice - Before getting this done go see Bill Taylor in Edinburgh. He is Exceptional & genuine. I feel so strongly I will pay for your travel, you pay for appt. I want or expect nothing in return & am sorry if caused any uncertainty but i couldnt read what you are going through & not say something. Len

[chillijava]

hi lenny
i see what you mean, i am really concerned now and i must admit i am not looking forward to surgery, what actually happened with your surgery and how did it go wrong


andrea

[chillijava]

hi lenny
i see what you mean, i am really concerned now and i must admit i am not looking forward to surgery, what actually happened with your surgery and how did it go wrong


andrea

[Lenny33]

Hi Andrea, sorry am causing you concern. Wasn't my intention. I don't think describing what happened to me would help you other than to say my pain has worsened. I maybe a lone voice of failure amongst many success stories they have had. This is the forum to at least ask any success stories to come fwd. You may hear 'he was really nice' or he really listened' but how many have actually improved or got better? I have not heard of one. Have others? You need to regain control and feel sure this is right for you. Sorry to be bossy here but it's important. They have already told you this may not work. Does this fill you with confidence? They still get paid if it doesn't work. Another question I would like to ask is how many of those sufferers who see greenslade have NOT been forwarded to dixon or for surgery. He seems to refer a lot to dixon for surgery. You have nothing to lose by seeing bill Taylor. He has trained with the best, has good success rate and is much much safer. If you ignore anything else I mention here pls listen to this. You can see him between now and sgy if that's what you still decide. Good luck. Len

[Lenny33]

Andrea, just seen a good experience had by calluna on forum. If she is better then might be useful to get another perspective other than my own. L

[calluna]

I did have a good experience, yes. And all my surgery has been through the NHS.

I did not have the nerve decompression surgery that you are talking about, though. I had a rather different problem as my PN was caused by gynae surgery using a lot of mesh. Mr Dixon operated laparascopically to remove as much of the mesh as possible (including some that had eroded) and he also did LVMR in order to keep my insides in place. He also removed much of the scar tissue in which the nerve was embedded but was not able to free it. I was in surgery for quite a long time and I was told it was quite complex.

The pain was much improved after the surgery and I was able to manage without any pain meds. Also my PGAD disappeared completely and this has not come back.

Unfortunately I did soon need more surgery as further bits of mesh continued to erode their way to the surface and the pain level increased, until I was nearly back to the beginning again. There are more issues remaining - more mesh remains inaccessible at the moment, and causing me increased pain every time it moves ...

However I am now doing really well with an unusual combination of meds prescribed by Dr Greenslade. The pain relief is amazing.

[molly]

Andrea,

Bill Taylor was trained by Ruth Jones and Maeve Wheelan, so if you felt you wanted to give physio a go then Ruth would be easier to get to . She has become expensive though. If you go down this route give yourself a target as opposed to just going for a long time. I did get some improvement from physio but ultimately opted fot surgery.

I do concur that there is surgery done in the private sector which is unneccessary, I could add my own bitter experience to this.

If you felt you wanted another opinion, the Nantes team have a world class reputation.

This must be very difficult for you having waited so long, but if you do not feel comfortable the don,t proceed.
I am sure you are aware that unfortunately surgery for pn does not have a great sucess rate full stop, so where ever you go may not change the outcome, bbut please be as comfortable as you can with your decision.

Regards Molly

[chillijava]

i would love to go to the nantes team but i cant afford it as my bupa wouldnt pay for it and i cant afford to pay myself, i really am not sure now what i want to do, all i know is that i want to get rid of this constant pain and want my life back, where are the pt's you said could possibly help


andrea

[molly]

Ruth Jones has posted re ently under the physio headind, scoll down to second line, she has left her details there. Last time I saw her she was working in winchester, she may have gone back to southampton, you,ll have to check. Maeve works in Ireland so not really possible.

Regards Molly