Hi everyone:
I have been suffering with pudendal neuralgia for 8 years. I feel extreme pain mostly in my urethra, sometimes radiating throughout my pelvis into my buttocks and upper legs. I have been taking duloxetine long term and have had numerous nerve blocks in the past which have only had short-lived/temporary success. I am virtually incapable of continuing my job even though I try my very best to.
I am under Dr Baranowski and had a trial early last year (12 months ago or so) of the neurostimulator which was successful. This was the last time I saw Dr B. I am now on the waiting list to see him again, however, I am not sure what to expect. I understand that the whole thing is a multi-discliplinary approach - will this appointment just be to discuss further stuff I have to do before having the stimulator e.g. psychologists etc, or will it be to discuss actually having the neurostimulator?
I am becoming desperate to know how much longer I have to wait - after having a successful trial early last year, I had become hopeful of a future. But a year of waiting for an appointment where I don't even know whether it will actually represent being close to having the machine fitted has caused me to become very depressed and lack hope.
Can anyone give me any idea of what to expect of the coming months?
Thank you everyone in advance.
Neurostimulator - what are the next steps?
Re: Neurostimulator - what are the next steps?
Hi Rayflight,
From my experience at the national some years ago Iwould reccommend you contact Dr B.s specialist nurse. She should be able to answer you,re questions.
If you do not have contact details let me know Imay still have her details assuming its the same person, I can pm them to you.
Kind regards,
Molly
From my experience at the national some years ago Iwould reccommend you contact Dr B.s specialist nurse. She should be able to answer you,re questions.
If you do not have contact details let me know Imay still have her details assuming its the same person, I can pm them to you.
Kind regards,
Molly
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Neurostimulator - what are the next steps?
Hi rayoflight, Welcome.
I'm still shaking my head. How on earth can they trial something that is proven to be helpful with pain and then NOT GIVE IT TO YOU?? I don't understand!
That is cruel. I'm so sorry, I have not seen the team in London so I wouldn't know what to expect from them as a next stage for you. I would definitely ring them and ask as Molly has suggested.
Good luck
Helen
I'm still shaking my head. How on earth can they trial something that is proven to be helpful with pain and then NOT GIVE IT TO YOU?? I don't understand!
That is cruel. I'm so sorry, I have not seen the team in London so I wouldn't know what to expect from them as a next stage for you. I would definitely ring them and ask as Molly has suggested.
Good luck
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Neurostimulator - what are the next steps?
Hi rayoflight
I agree totally with Helen if you have already had a successful trial then you should already be on a waiting list. Do you know where the stimulator was planned to be implanted? I think you need to get on the phone and see what's happening.
The psychological and other per stimulator tests are done prior to having a trial.....have you not had this stage completed?
I hope with some firm words on your part that you will get some answers and soon
I agree totally with Helen if you have already had a successful trial then you should already be on a waiting list. Do you know where the stimulator was planned to be implanted? I think you need to get on the phone and see what's happening.
The psychological and other per stimulator tests are done prior to having a trial.....have you not had this stage completed?
I hope with some firm words on your part that you will get some answers and soon
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Neurostimulator - what are the next steps?
I would suggest checking with the Appointments Co-ordinator. Letters do go astray.
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Anne smith
- Posts: 72
- Joined: Wed Feb 08, 2012 12:44 pm
Re: Neurostimulator - what are the next steps?
Hi ray of light
I am under the very charming mr baranofski!
At first I was paying privately , but after my first and second set of pudendal blocks(I had a genourous mum) I had to go back to the n.h.s.
Now the promise of a neurotransmitter if things got tough! Have not been offered again?? I am lucky that I can stand to do my job(hair stylist/ artist) I manage my pain with meds(tramadol works in flare ups) but my plan is that if??? I became unable to!! I will bombard his securaty both private ( I must have spent about eight thousand pounds) and n.h.s securaty and make this Demi god of pudendal nerve knolage! Come up with the goods!
Sorry I'm ranting because I'm in a flare up!(I'm a pussycat really)
Anne smith
I am under the very charming mr baranofski!
At first I was paying privately , but after my first and second set of pudendal blocks(I had a genourous mum) I had to go back to the n.h.s.
Now the promise of a neurotransmitter if things got tough! Have not been offered again?? I am lucky that I can stand to do my job(hair stylist/ artist) I manage my pain with meds(tramadol works in flare ups) but my plan is that if??? I became unable to!! I will bombard his securaty both private ( I must have spent about eight thousand pounds) and n.h.s securaty and make this Demi god of pudendal nerve knolage! Come up with the goods!
Sorry I'm ranting because I'm in a flare up!(I'm a pussycat really)
Anne smith
Iliostomys at twenty five, just after delivery of baby
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
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rayoflight
- Posts: 4
- Joined: Thu Jan 19, 2012 1:31 pm
Re: Neurostimulator - what are the next steps?
Thank you very much everyone for your replies. Haven't heard anything regarding an appointment despite making a nuisance of myself 
Still waiting....
Still waiting....-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Neurostimulator - what are the next steps?
Ugh! That's all I ever seem to do too Ray . . . . .wait. . . . and wait. . . .and
I started to tell my latest MRI,nerve conduction,no MRI needed?, lost appointment, different hospital tale here and just got SO bored by the nonsense of it, I decided not to bother, It probably sufficient saying I know exactly what you are going through and I can't believe it either.
My tale ends with a secretary telling me 2 days ago that I may not need the MRI scan (fine, I didn't think I did need one either as I have a pelvic nerve entrapment diagnosis)
I got a letter today (hooray) telling me my MRI will be on the 14th Feb???
Hope that you get somewhere soon.
Helen
I started to tell my latest MRI,nerve conduction,no MRI needed?, lost appointment, different hospital tale here and just got SO bored by the nonsense of it, I decided not to bother, It probably sufficient saying I know exactly what you are going through and I can't believe it either.
My tale ends with a secretary telling me 2 days ago that I may not need the MRI scan (fine, I didn't think I did need one either as I have a pelvic nerve entrapment diagnosis)
I got a letter today (hooray) telling me my MRI will be on the 14th Feb???
Hope that you get somewhere soon.
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.