Kidney pain/renal colic sufferers I need your advice

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Allys
Regular Member


Date Joined Nov 2005
Total Posts : 184
   Posted 2/22/2009 6:33 AM (GMT -7)   
My dear feloow sufferers.  I had hypermobile kidneys for so long that it has caused Loin Pain Haematuria Syndrome. I have a research document in my hands done by Dr Ahmed Ghanem who has found that the latter is caused by the former.  if all renal pain sufferers were given LYING AND STANDING IVP's then not only would there be a cure for LPHS IT WOULD NO LONGER EXIST!
 
The research is in the final publishing stages which I as a fellow sufferer am helping with.  It is indeed exciting news.  Dr. Ghanem found in his 10 year study that it was usually the kidney in the correct place that had originally been the hypermobile one but during an attack of inflammation it 'stuck' itself in the right place. It is often the second hypermobile kidney that is found causing the most problems.
 
Because all but a few urologists do the IVP STANDING AND LYING  no one ever knows they have a hypermobile kidney they only know it's AGONY!
 
I also have narrow ureters which can cause hydroureter & hydronephrosis.  these conditions both cause renal pain & colic.
 
My request is ...has anyone had a nerve block for renal pain that has helped?  I was told a coeliac plexus nerve block would help but it made the pain worse.  It can't get much worse as I take 2 hourly injections of Daimorphine 20mgs as just one of the medications on my pain plan under the care of a pain specialist.
 
I look forward to your help & for you all seeing the result of Ahmed Ghanem's research
Alys

Stmll
Regular Member


Date Joined Apr 2007
Total Posts : 106
   Posted 2/22/2009 9:10 AM (GMT -7)   

Hi Allys,

I have LPHS and am considering having the auto-transplant, would you mind sending me the research papers, so I and my Dr can have a look at them.

Thank-you

Tracey


DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Amitriplyne, Morphine 


Allys
Regular Member


Date Joined Nov 2005
Total Posts : 184
   Posted 2/22/2009 9:15 AM (GMT -7)   

Dear Tracey,

Until Dr. Ghanem's research is published i cannot share it. However he told me that I can always share his email address and he will help anyone he can with either LPHS or Symptomatic Nephroptosis.   Alison was asking about nerve blocks & mentioned your name. It's OK I know him very well. Best wishes

Alys


Post Edited By Moderator (Lindaloo) : 2/22/2009 4:37:32 PM (GMT-7)


Allys
Regular Member


Date Joined Nov 2005
Total Posts : 184
   Posted 2/22/2009 9:18 AM (GMT -7)   
I also meant to say that a doctor at Guys & St. Thomas specialises in auto-transplant but the success rate is poor for LPHS as I understood what he told me.  I looked up urologists at above hospital & his name came up.

Allys
Regular Member


Date Joined Nov 2005
Total Posts : 184
   Posted 2/22/2009 9:19 AM (GMT -7)   
The research papers aren't on auto-transplant but the link between hypermobile kidneys causing LPHS. Alys
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