3 Tesla MRI in Cheltenham ..

[birdlife]

I've been looking at the cost for a 3T Tesla MRI in New York with Dr.Hollis Potter. I felt like an urchin wistfully looking in a toyshop window at xmas, as AliPasha said on TIPNA that it cost him (or his insurance) $2800 which is £1800. So what is there on offer in the UK? Not a lot it seems, can't even get PN-aware physio on the NHS. But maybe all is not lost? I've found in Cheltenham one of the first 3 Tesla MRI machines in this country, and they have a mobile 3.0 Tesla too.

http://www.cobalthealth.co.uk/diagnosti ... a-mri.aspx

Now I bet the scanner is only as good as the radiologist interpreting the results, so should I hotfoot it down to Gloucestershire (pretty close to Dr.Greenslade in Bristol too) and hope someone in Cheltenham is PN/E-aware? A 1-part scan is only £218, 2 part scan £366, 3 part scan £507. I could buy a lot of xmas presents with the change from not going to New York. What's the opinion of you guys out there, all you knowledgeable people in pain?

You might ask why I want one of these new MRI's if in my signature you read that TP massage greatly reduced my pain and burning in the past. Well, since Baranowski never wrote to my GP about either of my double nerve blocks, I only have what was said to me verbally at the initial examination. I want to know what exactly I've got, where it is, and what I have to take care of in the future, cos this current flare shows me I could tip my PN into PNE if I'm not careful. If it isn't already there!

[calluna]

There's one at Frenchay, as well. But doesn't Hollis Potter use her own software, or something along those lines?

By the way - did you see Baranowski through the NHS? He really should have sent a letter to your GP, maybe it got lost? These things do happen.

[birdlife]

There's one at Frenchay, as well.

Hi Calluna,
So Does Dr. Greenslade have you use the one at his hospital as backup to his diagnosis? Sorry if anyone has already posted on that, but haven't come across anything except that Dr.G is an excellent PNE consultant and also a compassionate man, which is a very good start .

I did see Baranowski on the NHS and I think it unlikely that 2 letters would have got lost within 3 months (one after each block). My initial appointment with Dr Natasha Curran was notified to my GP, nothing further. Also, though post blocks I was in contact with his staff nurse via phone, and made a separate appointment so see her in London because she knew how angry and upset I was with his attitude at each visit, I afterwards never received the 3rd block that was due. What a coincidence.

[helenlegs 11]

I know of one guy who had the MRI at Cheltenham but that was to do with piriformis syndrome, which the scan did confirm. . . but that may be easier to spot than PN? ? when read by the right person, that is? I was going to say to contact them to see what they say, but they are BOUND to say yes, they can do it I guess. . . business is business!
Maybe ask have they found any Pudendal nerve issues in scans so far?
Trouble is if the software for reading this scan is not up to it or indeed the radiologist not well versed in PN you may get a wrong reading and will be back to square one. However you will have a disc that someone else may be willing to look at if the report is negative.
What sort of clinical exam does DR G do people? I haven't had that as he concentrated on my piriformis muscle. If he is very hands on and has elicited the pn pain during examination with others maybe a clinical exam with him might be all you need? I know he told me that they had an excellent scanner at Frenchay but didn't say if it was ever used for pelvic nerve patients.
I had my 1T scan with me when I went to see Dr G initially but he didn't ever ask to see it btw, not sure if that helps or not.
It's crazy that you don't have anything from Dr. B in your follow up records. Maybe he forgot. . . in the same way that the pain when giving birth is easily forgotten

[birdlife]

It's crazy that you don't have anything from Dr. B in your follow up records. Maybe he forgot. . . in the same way that the pain when giving birth is easily forgotten

Yes, worse than crazy, Helen, and don't get me started on that throw away comment of his again ~ speaks volumes, doesn't it. I've come across this situation before in the NHS when I had a brainscan done at my local hospital to check for peripheral neuropathy. I personally had to be an imposter in the medical secretaries' room 3 times before I found out why letters hadn't been sent! Not to mention the freezing wet day I trekked up to the National Hospital for my very first appointment only to be told the letter cancelling it hadn't yet been typed . And when the letter arrived a week later, the appointment would have been with the wrong dept anyhow!

Late last night I was sitting up reading the post started by HerMajesty on the pros and cons of a 3T against an MRN. My conclusion is it would be great to have both, though maybe not an MRN by a piriformis-obsessed doctor as how can you be certain his conclusions are unbiased. Weighing up the cost of Filler's MRN against possible uncertainty on my part about his findings, means i can rule it out of the equation for the moment, even if he does get one set up in London.
If Dr. Greenslade at Frenchay doesn't use the 3T to confirm his own findings, then the fact that I'd like one seems that Hollis is the way to go, as if she has the machine, the software, and the intuitive interpretative skills, and also will not read a scan done by anyone else, then no point in shelling out here in the UK and taking a chance anyone is PN-educated anyway.

IF I can ever get an appointment with my own GP (very difficult of late) (if I explained the whole pudendal thing to a locum he'd only say see your own GP ) to ask him if he would set up an NHS referral with Dr.G, and IF Dr.G isn't interested in a 3T scan result anyway, and IF perhaps his findings don't agree with the 3T scan, then what?! I'll just have a very interesting but costly trip to New York, which no-one in the UK will act on.
Everything is such a battle!

[helenlegs 11]

Yes everyone rightly states 'be your own advocate', fine if there is someone to advo or cate to.
However, I would think that a PN positive, Hollis Potter scan would have to be taken seriously here, well as seriously as they are taken in the States.
At least you could enjoy NY.

[birdlife]

I had my 1T scan with me when I went to see Dr G initially but he didn't ever ask to see it btw

Dr. G would have trouble taking a Potter scan seriously then if he doesn't want to look at it .

'everyone rightly states be your own advocate', fine if there is someone to advo or cate to.

As usual you've made me smile despite the quandary Helen, thank heavens for a bit of dry humour .

[calluna]

I haven't had an MRI - and Dr G didn't actually examine me. He said he wasn't going to put me through that as it wasn't necessary. But then my case is a bit unusual, there was absolutely no doubt that the problem was with the pudendal nerve, and that it was caused by surgical insult back in June 2009.

Mr Dixon did examine me, and my goodness it hurt. But I do understand that it was necessary.

The only reason I know there is a 3T MRI at Frenchay is that I saw the sign, as I was walking with a nurse over to the operating theatre.

[birdlife]

I'm glad Dr.G didnt find it necessary to examine you Calluna, what a considerate man. Hope you are still improving from the op . Yours and Helen's are complicated cases, am fairly certain mine would be relatively straightforward so maybe Dr. G could advise me just by my history to date plus the blocks I've already undergone.

Everyone needs a factual diagnosis, and I'd love a Potter MRI to establish finally if I have PN or PNE. When I was clinically examined by Dr. Curran and she reached the spot where I yelped, I certainly didnt like it one bit but it wasn't totally unbearable. She said that some of her patients practically hit the roof when that point is pressed. So did that mean I was irritated or entrapped? Isn't there a fine line between irritation and entrapment? But surely entrapment means constant pain? I always improve a lot when i stand up or lay down, unless I've previously pushed, pulled or lifted something heavy (huh, by heavy I mean an armful of washing ) and then I feel like I've been kicked in the groin and that part can last hours or days. This is additional to the usual perineal burning on sitting which can turn to a nasty pain if i sit too long, and the sensitivity, sometimes tingling and pain, that comes and goes in the sacrum. My massage is still serving me in good stead, those muscles cause me additional pelvic pressure and i would be a whole lot worse off without it (thank god for something!).

Perhaps the route to go is see Dr. G first, take it from there. But I'll make enquiries anyway with Cobalthealth in Cheltenham to see what they know about pudendal issues.

[donstore]

Birdlife,
Dr.Potter has an impressive resume. She is a full professor at the Weill Cornell medical school and Chairman of the MRI Dept. at the Hospital for Special Surgery in NYC, the number one hospital for joint surgery in the US. My reading from her has gotten me action from doctors here that I would have never received otherwise. I had to pay out of pocket and it has been well worth it so far. Your symptoms sound quite similar to my own.

Don