MR Neurography question

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MR Neurography question

Postby Question » Tue Jun 07, 2011 1:46 pm

Hi - has anybody got a recommendations re getting an MR Neurography in the UK? As far as I can work out, the only place that does it in London is Med Tel in Harley Street - although this not quite the same as Dr Aaron Filler's technology. Any advice much appreciated.
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Re: MR Neurography question

Postby helenlegs 11 » Tue Jun 07, 2011 4:22 pm

Thats where I had mine done, 1 Telsa scan (£715 last year), they have promised a 3 T one this year but not sure if has materialised yet.
If you are thinking of pudendal diagnosis Dr Blease the radiologist there did see my entrapment at A;cocks canal. I know JudyB at http://www.pelvicpain.org.uk has had some in depth chats with Dr Blease and he is showing an interest in pelvic problems BUT The technology, software and expertise from there can not be compaired to Hollis Potters (NY) detailed reports.
Someone once posted about a scanner at Cheltenham that cost around £500 but have no more details than that on it. The concencus of opinion is that the Harley St Radiologist is at least knowledgeable ablout PN so the best option here but not a patch on travelling to New York, as a fair few have done.
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.
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Re: MR Neurography question

Postby Question » Tue Jun 07, 2011 6:39 pm

Thanks - to travel to New York seems quite a lot. Do u have the details for the New York neurography centre - does that machine use the same patented technology as Dr Filler's. Also is Dr Filler worthwhile seeing? Seems to get mixed reviews on forums but does a very good sales pitch on his website.
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Re: MR Neurography question

Postby helenlegs 11 » Wed Jun 08, 2011 12:36 am

There have been some very good discussions about MRI vs MRN on here recently. There are also a lot of actual Hollis Potter reports 'published' on this site too.
viewtopic.php?f=16&t=1439 viewtopic.php?f=16&t=1439 They take a bit of reading through but many say that Dr F will favour a piriformis diagnosis, although you do get an all important clinical examination with him too, and Ms Potter just reports what she sees. Her reports are very detailed and more tellingly her findings have matched what surgeons have discovered during surgery.
It is a massive step to take tho' and you may find that Medtel/UME can give you the answers you need. I would still say that given the cash and hindsight, I would have had a Dr Potter scan. http://www.pudendalhope.org/node/58#Potter
Dr F does a clinic every few months in Harley St btw. He can only offer a clinical exam however with diagnosis and medical report. A few people have said that his diagnosis is often (too) similar for different patients, but I think he got it spot on with me. There would be no follow up treatment with him either unless you were prepared to spend a fortune and fly to California.
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.
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Re: MR Neurography question

Postby Question » Wed Jun 08, 2011 4:04 pm

Hi - that's great info. Does anybody have any decent contact numbers/names of people from Dr Filler's office? When I rang earlier this week, the person at the other end of the phone did not fill me with the greatest confidence that she would ever get back to me let alone knew what I was talking about.

p.s Helen - why would u have had the Potter neurography done if the Med Tel one provided with the answers u needed?
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Re: MR Neurography question

Postby helenlegs 11 » Wed Jun 08, 2011 11:01 pm

My main problem is piriformis and sciatica. Dr Blease said that my P muscles were symmetrical so there was no problem there.
I had the scans and looked at them myself and could see that the muscle on the Right (worst) side was quite a bit smaller, so I couldn't understand what he had seen. Dr B did admit that the patient should be clinically examined along with the scan but of course they don't offer that service.
He did see "severe bilateral enthesitis of gluteus medius and gross enthesitis of left gluteus minimus musculature" as well as the pudendal entrapment and put that down as the main cause of my pain, but it has proved not to be the case.
Have you tried the contact us page on nervemed http://www.nervemed.com/component/optio ... temid,101/ I remember the name Michelle Fang (think Dr Fillers nurse) and Shirlee Jackson (maybe) but whether they are still there now ? ? if you subscribe to their e mail they will send details of future clinics in London out to you, or are you considering a trip out there?
Hope you get some success.
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.
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Re: MR Neurography question

Postby Question » Thu Jun 09, 2011 1:58 pm

Thanks - Helen - I think I am going to go to New York to have both a Potter scan and a Neurography scan on lumbar/pelvic area to try and get to the root of my problem. I have pain in my right bottock mainly on sitting for ten months but recently developed testicular/perineal pain. Pain also recently spread to other bottock and top of hamstrings. Guessing I may have some kind Piriformis/or bottock other muscle problem that is impinging on my nerves. All previous MRI's - back and pelvic - have come back normal.
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Re: MR Neurography question

Postby helenlegs 11 » Thu Jun 09, 2011 5:16 pm

Wow, hope you get the answers you are looking for. You may be a bit like me then, in that it's primary piriformis with pudendal being the secondary problem, which is the other way around to most people here. Any attributable incident ? Mine, a fall.
Have you tried any steroid or botox shots? or are you still looking for the all important diagnosis?
If you do have both done I would LOVE to know the outcome, especially what Ms Potter might see with reference to the piriformis .
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.
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Re: MR Neurography question

Postby Question » Fri Jun 10, 2011 5:02 pm

Thanks Helen - yeah I think u may be right although I have a wide range of potential diagnoses from ligament damage at L4/L5 to Piriformis syndrome to Pudendal Neuralgia. Who knows - it is all guess work at the mo. I had a caudal epidural up my back a couple of weeks ago which has done the square root of nothing so far (although should be thankful that it hasn't brought about new problems), so the back problem theory now appears tenuous. Nevertheless, am off to see Dr Baranowski (wow my insurance company must hate me) on Monday so hopefully he will have something useful to say and do. Would be helpful to find out further from my end how you arrived at your diagnosis. Is there anyway we can chat online? Off course will keep you updated if and when I go to New York. Going to ask Baranowski about he thinks about Neurography and Hollis Potter.

Thanks,
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Re: MR Neurography question

Postby Dean » Thu Jan 10, 2013 3:35 pm

Hi. It has been very interesting to read this forum. In brief ,I have been diagnosed with Pudendal Nerve Entrapement. I have just had my 2 nd Nerve Block which does not seemed to have worked, in fact the discomfort and pain is a great deal worse. I am seeing a consultant Mr Wong ( Cardiff Spire hospital) who diagnosed this problem. I have had an MRI scan which was normal apart from a bulge in L5.
I would be very interested to here from anyone who has had this nerve scan and who can assist me further. I'm told my options are to have a 3 rd Nerve Block and then Surgery which I am very concerned about
thanks for reading

Dean
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