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Baxter18

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Reply with quote  #1 
Hi, I was a previous member here, then known as Sammy dog but I am back looking for some information on sacral implants. I went to visit Miss E in London and she has put me forward to be assessed for this. It seems a last straw as I suffer mainly pain, burning and stinging. I have recently tried ranitidine, a ring pessary, vagifem, Elmiron all to no avail. I have had a defecating proctogram which revealed I had an intususseption in my bowel, however the colo rectal consultant said that he would not operate as I did not show any of the symptoms and I may have had this all my life and it was only found through the MRI. I also had a very painful VPP and some other catheterised urodynamic test whic( was painful, but showed that my bladder capacity was good.
I am quite worried about the procedure for the implant as it may not work for pain and involves 2 operations regardless of whether the trial works or not, as the temporary wire has to be removed. Does anyone have any positive experiences of this in terms of helping with pain.
Currently, I have to rely on oromorph when the pain is really bad and I don’t like taking that so I only take when I’m desperate. I just can’t seem to find anything which helps with the pain and it really gets me down at times. I am currently waiting for CBT and have so far waited 8 months, apparently I am nearing the top of the list!!!!
Any advice would be most welcome.😊
ModeratorKate

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Reply with quote  #2 
Morning Baxter

Welcome return but also so sorry that still with problems.

Here is Moderator Jens original post on Sacral Modulation, that may assist.

Hope someone else pops along soon.



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Baxter18

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Reply with quote  #3 
Thanks Kate,
I have read Jens story and it seems to have been positive for her for retention. I’m just not sure about the pain element. At least I don’t have to agree if I am eligible as I have to meet the criteria first.😀
sueworld2003

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Reply with quote  #4 
Personally I'd do a lot of research about the subject online, and from what I've gleamed down the years from the posts of other sites It can be good for those with retention issues, such as Folwers syndrome, but not very effective for pain.

Also on some of the forums in the states I've seen instances of some people having problems with the implant, such as wires coming loose, etc.
ModeratorKate

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Reply with quote  #5 
Dont forget to also give BHUK a call. am sure they will have more information to assist you.



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Kiwi_Fairy

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Reply with quote  #6 
Had the trial 18 months ago, was told 50:50 chance it would help with my pain. Unfortunately it didn’t work with pain and I couldn’t cope with the sensation I could feel from the electrodes. The operation site now aches especially in cold weather though outwardly it appears to have healed well.

Do your research first and weigh up the pros and cons.

If I had been offered oramorph and zomorph (slow release morphine) prior to the SNS trial I would never have done it. However my pain clinic don’t want me on morphine and my GP went over their head (I was throwing up and passing out in pain on an almost daily basis which pain clinic was aware of).

Good luck x
Baxter18

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Reply with quote  #7 
Thanks for that. I actually don’t think it is for me and not convinced that it will help with the pain. I just feel maybe the consultant is clutching at straws in an attempt to help me. I will wait to see how long the referral takes and speak to my GP and my consultant in Newcastle in August.😀
Baxter18

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Reply with quote  #8 
Quote:
Originally Posted by sueworld2003
Personally I'd do a lot of research about the subject online, and from what I've gleamed down the years from the posts of other sites It can be good for those with retention issues, such as Folwers syndrome, but not very effective for pain.

Also on some of the forums in the states I've seen instances of some people having problems with the implant, such as wires coming loose, etc.
Baxter18

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Posts: 7
Reply with quote  #9 
Thank you for your reply. My sentiments exactly. I felt quite optimistic as the consultant was explaining it all but once I had time to google it I felt very differently about it. At this moment I don’t want to pursue it.🙁
sueworld2003

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Posts: 1,162
Reply with quote  #10 
Imo there are a lot of consultants who are guilty of the 'one size fits all' approach and don't fully see the big picture.

For example I was offered botox for my pain and after doing my research realised that it wasn't a good option for pain and could leave you with serious retention problems. Only when I went back on my second visit to him and pressed him on this matter did he admit to it's failings and unsuitability for me. 

Now what would have happened If I'd taken his initial word on this? I shudder to think.
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