3 Tesla MRI in Cheltenham ..

[helenlegs 11]

I would say that's a good plan birdlife. I hope your referral is trouble free, I wonder if you should mention that Dr B didn't follow up with his treatment and paperwork? You will know best. . .also the fact that as Dr. G and Dr. Wong's details on the home page here (supplied by them) states that they supply a multidisciplinary approach to the problem should help you. Maybe I'm stressing too much for you because of my referral problems
I always wonder about this eliciting pain on examination, as in 'some people hit the roof'.
Pain is so subjective and people often respond in different ways. If you are in pain there anyway and that extra pressure simply adds to your pain maybe you wouldn't 'hit the roof'?
The moral of the story is to try and put yourself into a pre pain state of mind on any examination as these are such important clues for the clinician. Something that I haven't done particularly well in the past but it is SO important.

[birdlife]

Thanks Don, I appreciate what you're saying. My experience so far in the UK with this affliction is that there are hardly any doors TO open, but a Potter MRI would satisfy me personally to know exactly what and where my problems are. It would be a relief to know, even if the prognosis doesn't help me find treatment. I want to know the why behind it. It's my body! And with meds I worry that sometimes their purpose is to mask a pain rather than treat it and to mask a PN pain is not a good idea if it allows you to continue to do things to further irritate it. When you see Hibner in February do you think you might consider the botox route?

I wonder if you should mention that Dr B didn't follow up with his treatment and paperwork?

Helen, I will certainly be mentioning that several times along my pn journey

Dr. G and Dr. Wong's details on the home page here (supplied by them) states that they supply a multidisciplinary approach

"Multidisciplinary" ~ well, I'm open to variation on a theme! Haven't had any pelvic floor physio for example, that might be a start for some parts of my pain. Yes, people do respond to pain differently. Due to the rubbish ministrations over many years by my (ex)family dentist here in UK, I've had to have a ton of dental work done in Hungary (27 crowns, the filing of all upper and lower teeth done in 2 sessions over 2 days ) (and financially this is why I hesitate seeing Hollis Potter ), and so I don't consider myself a wimp. At that PN physical examination I had no idea what kind of pain she might elicit, or where. She pressed in two places vaginally first which caused nothing then the third highest spot was where I was jolted out of my complacency.
Okay, I'm going to give serious thought to a Potter scan and meanwhile will try anyway for a referral with Dr.Greenslade. Helen if I get an appointment before you I shall say no, no, see poor Helen first! .

Have emailed CobaltHealth in Cheltenham, asking if they are PN aware, mentioned the huge advances in diagnosis made by the Potter 3T scan in NYC, her software and expertise, mentioned the need for this expertise in the UK (and the interest across Europe this would engender for their business of course!), pointed them to the Hope website for professional direction, and mentioned the scrip that AliPasha recommends for this type of MRI.

[Susanjane]

There was some dialogue last year about this on the UK pelvic pain site, link below, which might be of interest.

http://www.pelvicpain.org.uk/forum/viewtopic.php?t=683

It would be interesting to know if there have been any developments at Cheltenham.

[birdlife]

That's an interesting read, thanks Susanjane. I havent had a reply yet from Cheltenham to see if they've made any advancements, will post when I get one. We're in such a cleft stick here in the UK. Even when we find the right scanner we dont have the radiologists with the expertise nor the software to interpret PN correctly. It seems from the Boards on here that the 3T imaging is far superior to the 1.5 where the pudendal nerve is concerned, and that Hollis Potter - as well as being distinguished - uses special software not used with the 1.5 and these are the reasons put forward for her finding so much more than Dr. Kalinka (who trained under her) who uses the 1.5.
I also read somewhere on here that the pudendal nerve itself can't be seem on any current scanner as it's too small, and they rely on the image of the pudendal artery underneath and if that is compressed then they assume the nerve is too. Correct me if I'm wrong, anybody . . . .

[birdlife]

Have emailed CobaltHealth in Cheltenham, asking if they are PN aware, mentioned the huge advances in diagnosis made by the Potter 3T scan in NYC, her software and expertise, mentioned the need for this expertise in the UK (and the interest across Europe this would engender for their business of course!), pointed them to the Hope website for professional direction, and mentioned the scrip that AliPasha recommends for this type of MRI

Well, that sucks. I just received a one-liner from a radiographer's assistant at Cobalt saying "Unfortunately this is not something we offer here at Cheltenham Imaging Centre". I've replied and pointed out that only last year they were offering a scan of the pelvis to include the ischial spine and Alcock's Canal, though only on the 1.5Tesla, as per SusanJane's link on pelvicpain.org. I've today pointed out that the scan area may be greater on the 1.5 but the resolution is far better on the 3T.

Ah well, obviously I didn't manage to push the boundaries of PN-aware medics and radiologists in the UK . Get the piggybanks out, fellow Brits, start saving for NYC .....

[peaches]

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!

Hi Birdlife

My heart went out to you when I read this. I too have no idea what caused my PN or PNE or which one I have. I would be in constant pain now if it wasn't for the meds and my pain was always on the right. However I have now started to get much more pain on the left too and stabbing pains in my sacrum on the right when I twist, or move when I'm sitting down or reach to one side. I also have pain when trying to turn over in bed in my sacrum area so I know that things are getting worst, but I don't know what it is I'm doing to make it worst. I do follow the rules. I've heard that this can be associated with SIJD. Could this be the cause of my PN or has this just developed. You can go on asking yourself question for ever and go round full circle and still come up with no answers. Btw Dr G did examine me, but only externally and I must admit I didn't hit the roof from that.

Cheers
Peaches

[birdlife]

My heart went out to you when I read this

Ahh, thanks peaches, I had to unexpectedly reach for the tissue box, I'm not used to sympathy (except on here, thank you people!). We don't always realise how emotionally depleted we get with the pain, the battling, the lack of sleep, etc. Hugs to you for all this extra pain you're getting around the sacral area. My pain is bilateral too. I know tight ligaments can pull the sacral area out of alignment, and it can go in and out of alignment quite easily, so don't think its necessarily your pudendal pain that is worsening. I don't think you are doing anything to make this worse, I think it could well be muscular. Have you tried physio? I used to get (still do occasionally) a sharp pain exactly there when turning over in bed, but finally I got that sorted with TP massage to the lumbar muscles. Every time nowadays that my lumbar muscles get tight I start self treating with that massage (easy to do yourself) and that particular sacral pain is easy for me to get it back down to where it just tingles if I lay on my back.
Seems Dr.G. won't need to do an internal then, good. So didn't Dr.G. advise you where he thought your PN or PNE was? I'm presuming he thinks you aren't an operable candidate and is seeing if the meds help you before he takes it another stage?

Take care,

[Susanjane]

Hello Birdlife - sorry you received only a curt reply from Cheltenham. How much difference it makes when the same news is wrapped up differently! I certainly got a much more comprehensive and kinder reply from the Superintendent Radiographer in May last year. As I am a dreadful hoarder and still have the e-mail I could forward if you wish. Just send me a PM. Best wishes, Susanjane.

[birdlife]

Thanks susanjane. Though it wasn't so much curt as short and uninformative and I was a bit taken aback (especially when she addressed me as "Mr" ). I looked her name up and saw her job description was radiographer's assistant, so my first email probably didn't stray very far past reception . You obviously have the magic touch yourself . So I cut and pasted their answer to you of last year from the link you gave me yesterday to point out to her that actually her employers do do at least part of that scan, they just do it on the 'wrong' machine. Maybe I'll get a better response tomorrow, but not banking on it. Anyhow, its all academic without the necessary expertise to go with the 3T and we are flogging a dead horse. I feel like a suffragette and we have to tie ourselves to railings in the UK to get noticed, but I draw the line at chucking myself under a horse!"
Take care,