John01
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1#
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Rank:none
Score:377
Posts:377
Registered:07/10/2002
Time spent: 7701 hours
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(Date Posted:24/11/2006 00:14:56)
Hi Alison,
Renal denervation is a very hit and miss affair. There have been several tries at using this technique to 'cure' LPHS and none of them sucessful, giving only short term relief.
As for a Nephrectomy that is is the most drastic step you can take, even a partial one and you as a Nurse should know this.
I know of one patient who did this and has regretted it ever since because the Syndrome started up in the other Kidney and the next step is for this Kidney to be transplanted, making her the same as any ESRD patient waiting for a new Kidney and a post operative life on Interfereon.
All indications show that whilst the Kidney gives severe pain, it is still working fine, be it at a reduced level.
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Alison Banister
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2#
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Rank:none
Score:68
Posts:68
Registered:04/10/2004
Time spent: 0 hours
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(Date Posted:24/11/2006 17:20:37)
Dear John,
Do you really know that no-one has ever had success from renal denervation? It was suggested by a surgeon with experience. I think I'll see if I can ask his patients or he must keep statistics.
Also I have not been diagnosed with LPHS. Is there a definitive diagnosis?
Alison
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Alison
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ham222
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3#
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Rank:none
Score:9
Posts:9
Registered:10/10/2005
Time spent: 0 hours
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(Date Posted:16/12/2006 23:23:44)
Reply to : Alison Banister
Also I have not been diagnosed with LPHS. Is there a definitive diagnosis?Alison
Hi Allison,
I have been suffering with LPHS for 1 1/2 yrs, not that thats long but...One of the most tried and true ways to "prove" you have LPHS, now this is in most cases not all there are always the outliers, is to have a renal biopsy. The doctors should look for evidence of IGA nephropathy or thin basement membranes in the golmulari (if you don't know what this means ...they should) If either of these things show up I have been told it is a pretty sure bet that you have LPHS. Now if they don't that doesn't necessarily mean you don't this is just the general "litmus test" of LPHS.
Holly
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Dance like no one"s watching.
~Holly
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Alison Banister
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4#
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Rank:none
Score:68
Posts:68
Registered:04/10/2004
Time spent: 0 hours
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(Date Posted:20/12/2006 15:27:00)
Reply to : ham222
Dear Holly, Thanks. They won't do a kidney biopsy as they say I haven't got LPHS & anyway they say it will make the pain worse & the treatment would be opiates which i am on already! Masses of the stuff. I am having another lying & standinfg IVU to see if it's nephroptosis again.
Alison
Reply to : Alison BanisterAlso I have not been diagnosed with LPHS. Is there a definitive diagnosis?AlisonHi Allison,I have been suffering with LPHS for 1 1/2 yrs, not that thats long but...One of the most tried and true ways to "prove" you have LPHS, now this is in most cases not all there are always the outliers, is to have a renal biopsy. The doctors should look for evidence of IGA nephropathy or thin basement membranes in the golmulari (if you don't know what this means ...they should) If either of these things show up I have been told it is a pretty sure bet that you have LPHS. Now if they don't that doesn't necessarily mean you don't this is just the general "litmus test" of LPHS.Holly
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Alison
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Teri_R
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5#
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Rank:none
Score:6
Posts:6
Registered:21/01/2007
Time spent: 0 hours
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(Date Posted:24/01/2007 12:41:53)
Hi
My nephrologist says if not LPHS then it is one of two kideny deseases, however as she did a full range of blood tests she doubts it is. The other option is to do a renal biopsy but she would be reluctant to do a biopsy on a kidney that isn't failing, and I agree,
Teri
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We are each of us angel with only one wing, we can only fly if we hold onto each other
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Alison Banister
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6#
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Rank:none
Score:68
Posts:68
Registered:04/10/2004
Time spent: 0 hours
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(Date Posted:27/01/2007 15:11:22)
Just to ley you know that both of my kidneys are now firmly stitched where they should have been in the first place! They can no longer move & cause renal colic. The right one was slow to empty too which meant that the urine flow would have been obstructed. The nerves have been stripped away. Dr. Ahmed Ghanem is happy for me to give out his email address for anyone wanting info on how LPHS can be prevented by catching hypermobile kidneys in time. Alison
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Alison
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Kim Hughes
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7#
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Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours
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(Date Posted:03/02/2007 04:27:54)
Reply to : Alison Banister
Dear All,Do any of you have experience of renal denervation or nephrectomy to treat recurrent renal colic and kidney pain? If my right kidney doesn't need fixing in place as the left one did then these are the options open to me . Hope to hear from someone soon.Alison
The autotransplant includes renal denervation. The whole idea surrounding the autotransplant is denervation. With this surgery the idea is if the kindey is moved into the pelvis reinnervation will take longer. Kinda makes you wonder that if they would go to the radical treatment of moving the kidney to slow the regrowth of nerves why then would they only do the portion of the surgery that strips the nerves?
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Alison Banister
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8#
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Rank:none
Score:68
Posts:68
Registered:04/10/2004
Time spent: 0 hours
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(Date Posted:03/02/2007 15:00:49)
The doctor from Saudi who has done loads of renal denervations for LPHS & nephroptosis has found that stripping the nerves is enough. So have I! I guess they all have their ways of doing the surgery. Mine was done through a laparascope with obvious benefits. Oh what bliss not to have kidney pain! Alison
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Alison
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koorahk
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9#
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Rank:none
Score:150
Posts:150
Registered:29/04/2003
Time spent: 10193 hours
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(Date Posted:10/02/2007 23:37:45)
Reply to : ham222
Reply to : Alison BanisterAlso I have not been diagnosed with LPHS. Is there a definitive diagnosis?AlisonHi Allison,I have been suffering with LPHS for 1 1/2 yrs, not that thats long but...One of the most tried and true ways to "prove" you have LPHS, now this is in most cases not all there are always the outliers, is to have a renal biopsy. The doctors should look for evidence of IGA nephropathy or thin basement membranes in the golmulari (if you don't know what this means ...they should) If either of these things show up I have been told it is a pretty sure bet that you have LPHS. Now if they don't that doesn't necessarily mean you don't this is just the general "litmus test" of LPHS.Holly
Hi, I have had LPHS for almost 27 years, diagnosed in Oct 1981 by right renal biopsy. As far as i am aware, renal biopsy is still the only 100% diagnosis of having LPHS. It did not exacerbate my problem long term and I would be happy advising anyone with query LPHS to have a biopsy! This procedure was /is the only invasive test that my consultant ever advised and I am so glad i had it done - I was diagnosed almost exactly a year to the date after my first severe lphs atttack! It shows definitive changes in the renal blood vessels and surrounding tissues if you have LPHS. My biopsy sample was sent to Manchester Uni Med School to be looked at under the electron microscope which was very advanced for the time. The biopsy showed evidence of clotting in the renal capilliaries, some being totally blocked and others partially blocked and some areas of surrounding tissue death and scarring.
LPHS flared up in my left kidney, 18months after the diagnosis in my right kidney, which was totally unconnnected to having had the right renal biopsy.
Hope this helps,
Helen x
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Hez
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