Getting a diagnosis

[Polly]

Hi Calluna

Glad to hear your are having positive results with Dr G. The problem I have with the Dr's is actually getting an appointment, let alone persuading them that I know what the problem is. At the moment I can just about afford to see Dr G privately with the hope of then going onto the NHS list. I read somewhere that someone did this and he then wrote to their GP to request a referral. Sounds like a plan!
I wouldn't have been in the same position a year ago - so very lucky to be able to presently.

Strangely enough this morning I have been able to raise my leg to 90 degrees from a supine position, but I did do some trigger point massage on the periformis (with some rolled up tennis socks!!) last night - was ouchy!!. That would indicate to me that it is something to do with that muscle. Mine has been in spasm on and off for the last 12 months. It hasn't been as bad as having to physically lift it to go upstairs, but with high steps I was favouring the right leg because the left was never very stable in the hip and would send me off at a tangent. The successful leg lift this morning was a bit wonky. It got there but not in a definite straight line - I felt some hip adjustment going on when I did it. In comparison the other leg goes straight up with no hinderance. I could only manage a few as well as the hip muscle began to ache (not suprisingly).

I am going to have a chat with my chiropractor on Friday about all of this and see what he says - will report back.

Polly xx

[helenlegs 11]

Got to say that I can't do a SLR either Calluna, although the piriformis muscle is an abductor and rotator ?? It's confusing alright.
http://www.getbodysmart.com/ap/muscular ... orial.html this gives a good idea of it's action. However! I read somewhere?? that the p muscle and the psoa major http://www.getbodysmart.com/ap/muscular ... orial.html are the only muscles that are attach to the legs to the spine (psoas major higher up) and they counter balance each other creating an equilibrum, psoas major to the front, 'pulling' the two, legs and spine together, well not quite but you get the idea. Then the piriformis muscle anchors the two again at the back.
MY THEORY is that once this balance is upset (in a pivots, levers and fulcrums kind of way) the weight of the leg is too much with the psoas muscle working anchoring down at the front, and the piriformis muscle not working. I know that my leg just feels far too heavy to lift, it's not that it's painful, I simply can't do it. Same with you guys?
As for the stairs Calluna, I'm really glad I live in a bungalow although my front thigh muscles are pretty good and I plan to keep them that way and use them so as not to 'loose' them. so haven't had to do your trick in a while. Maybe it's the psoas major muscle that could be a problem there? as it does operate at the front but it could be a combo of muscle under/inaction.
It's a shame that we haven't got a good physio or chiro on this forum. Knowing what I know now (not a lot) I would actually love to study the muscles and workings of the body. My nephew is a physical trainer so I may ask him, how sick of me will he be!! He is coming at it from a beautiful bod, health perfection point of view,(he IS MR Toblerone). . . . . . hope he loves a challenge
Maybe your chiro will be able to give some better insight Polly. Oh by the way, I can sometimes manage the SLR in the morning too. Try again this evening especially if you have 'done stuff'
Take care,
Helen

[Polly]

Well.... I've just been looking at the SIJ !!! Another thing to add to the list because I have just realised (really should ask more questions of my chiro!) that it's the SIJ he has been treating all these years - that it where I have the old twisting/bending injury. Hence unstable hip joint. Will check the leg raise again later - poor bottom is throbbing at the moment due to my over indulgence. Now going to look at ways to stabilise this SIJ because tbh I have not done any self help for this problem - just sort of got on with it - bad move now I realise and lesson learned.

Will feedback info from Chiro at the end of the week. xxxx

[calluna]

I agree, Polly, sounds like a good plan to go privately at first and get a referral that way. Goodness, it does get difficult when GPs are not helpful, they are the gateway after all. I hope you can see Dr G soon.

That's a very clever website Helen! I think you are right, psoas is more likely. I literally just cannot lift my right leg properly. I've had a bit of an issue with this for a while now - been trying to think when I first became aware of it - maybe 3 years? I hope that's a coincidence. But in general I am used to it, I sort of lean over to the left to compensate. Sometimes it trips me up though, quite literally the other weekend, I fell getting out of an unfamiliar boat. I went to step up onto the side locker as usual, from there to the gunwhale and off the boat - I went to step up with my right foot (not thinking) and but it turned out that the side locker was higher than I am used to on our boat and my foot did not get high enough so I tripped.

Think I'll see the GP later this week and ask what he thinks.

[helenlegs 11]

I think a few of us have the SIJ thrown into the mix, and rightly so. I do have a reported leg length discrepancy and have been told physio after physio that my pelvis is up and rotated, as I have mentioned countless times (sorry) they recognise the problem and fix me Nothing ever hurts but nothing ever improves either. The next physio tells me my pelvis is up and rotated.Back then I honestly thought this was just 'physio speak', as I was naively spending and spending on their 'fixes' but gaining no benefit whatsoever.
I now know that they were probably right all along and my pelvis probably is misaligned but I need the rest fixing first (decompression please ) before that can be tackled with any positive lasting outcome. I would like an SI joint block just to see how much that effected any pain levels but I honestly doubt that it would, I would be amazed if it did anyway. Another one for the future
There is a sacroiliac belt that can be worn to stabilise the joints between physio/chiro sessions but I guess that's only useful if the ligaments are lax? while mine at one side (worst side) has no 'spring',so more stuck, other sides fine. A friend of mine did have one after her 3rd child and it really did work for her but when I tried one the pressure on my P muscles was awful. I don't think I was the right candidate for the belt but these things have to be tried

Yes Calluna, I like that website had it 'stored' but when my computer went doolally I lost it, so glad to find it again. Let us know what the Dr thinks.
Have to say that I also have the deck(ing) problem and have fallen off mine a few times thankfully just onto the grass
A Boat WOW! Calluna so jealous I have had some great hols (only long weekends) sailing and then only in the Lake District but loved it (friends 'yachts') There is something so relaxing about that contained space with no 'escape,' not that I wanted to. Happy days
Take care all,
Helen

[Polly]

Hi both - have been surfing SJ disfunction and know that is where my problem started all those years ago.

SJD can produce referred pain and cause spasm in piriformis buttock and psoas, groin and front of thigh. Difficulty turning over in bed (oh yes!!) and putting on shoes and socks (done a bit cockeyed by me!) Ticking all those boxes. Curing may not be possible, but can stay manageable (same as my chiro told me).

Next bit interesting.... groin pain and abdominal pain are not uncommon with SI joint instability. Often the groin pain is mistaken for PN, prostatitis, genitofemoral neuralgia or sterile epidydymitis (???? no idea what those are apart from PN obviously). This is likely due to unnatural tension on the nerves and ligaments around the pubis symphysis or actual impingement of the PN which lies between the sacrospineous ligament and sacrotiberous ligament. The distance between the 2 ligaments abruptly narrows when the ilium and sacrum are out of alignment.

So... spasms in piriformis due to unstable SJ and impingeing on PN. Thinking need to do exercises to help stability inbetween chiro visits and NOT do things to make it worse. Apparently can take months for it to settle properly and that's without doing things to put it out again.

I know definitely the psoas is affected - running from bottom rib and around to femur - as back pain causes shifts in position to ease, bad posture etc etc and then weak psoas - which does have a role in left lifting. Sitting all day (as I do at work) causes tight flexion in the hips and psoas and therefore tight pelvic muscles. All playing a role in PN. I have been doing exercises to relax the psoas and hip flexors (just gentle ones) and these have given me over a week of proper sleep and being able to turn over in bed, plus walking more freely and evenly. Have to be very aware now to sit properly, stand properly and walk properly and care in bending or twisting.

Helen I looked at that belt too but it looks so restrictive I don't think I could bear it, plus as you said it might make things too tight which will contribute to the periformis spasms.

This has convinced me to try the Dorn method of re-alignment which is accompanied by a Breuss massage. Gently re-alignment plus they give you exercises to do at home for self-help. Talk to chiro on Friday and go from there.

xxxxxxxxxxxx

[Linkey]

Hello Everyone

I'm in need of your valued views. It's 5 yrs since I've had surgery in France (Nantes) for bilateral PNE. The op relieved much of my pains although I had to travel to Nantes for nerve blocks every six to eight months for three years post op to treat residual pains. Last year September I started to get new pains very similar to nerve entrapment, in the perineum and anal areas (sharp pains). I went back to France and Dr Bautrant's diagnosis was myofascial syndrome of the Obdurator Internus muscle of the right side.. With PT much of the pains coming from this muscle have subsided but the pelvic floor muscles and the anal sphincter muscle tighten and cause a lot of pain upon sitting. Also, I get a pains in the area of the incision (TG surgery) on the right side when lying on my back and tingling sensations in the perineum running up to the scrotum. These pains have made sitting and lying on my back very difficult.

I've done MRI's (not 3T) that show no sign of entrapment. But a CT scan shows some thickening of the SP ligament which was cut to free the nerve during the surgery in Nantes. I'm from South Africa and intend to come to the US for further diagnosis. My plan is to see Dr Potter in NY and then Dr Hibner in Phoenix. I have appointments with both these doctors. Dr Hibner doesn't seem to place much importance on Dr Potter's scans as his protocol is to discount muscle as the cause of pain, first. His route is botox and then only will he consider an operation when botox fails to reduce pain. A few people on this forum have had bad experiences with botox.

After speaking to Dr Hibner, I'm wondering whether it's necessary to do the scans with Dr Potter? Another thought is, if Dr Potter does detect scar tissue entrapment, will Dr Hibner resort to botox treatment first and then decide on an op thereafter if botox fails? Just reading about the experiences of people who have had botox worries me. The next thing on my mind is how successful is Dr Hibner's redo operations - I'd like to hear from people's personal experiences, those who have had these ops like Ali - please let me know how you are doing.

I look forward to your valuable inputs. Thank you and God bless you all.

[Violet M]

Hi Linkey,

Welcome to the forum. Sounds like you are a real veteran PNE patient. Dr. Potter's MRI's are reported by many patients to be very helpful but even if the MRI shows a re-entrapment it's hard to prove that what is seen on the MRI is the cause of your pain. I'm not sure Dr. Hibner is entirely discounting the 3T MRI though because he's still having his patients get the MRI in Phoenix even though it's not as high quality as the 3T. I'm sorry, I can't answer your question about whether Dr. Hibner would let you skip having Botox before surgery.

Ali did not have redo surgery from HIbner -- his first surgery was from Bautrant and his redo was from Aszmann. You might want to edit your post to remove your e-mail from public view and just send Ali a private message.

Best,

Violet

[Linkey]

Hi Violet

Thanks for your reply. Ali"s footnote to his replies notes Dr Hibner as the doctor who did his redo op in July last year. Is that incorrect? Violet, have you communicated with patients who've done redo's with Dr Hibner? And how successful is the op? How do I send a personal message to Ali? I'm so confused at the moment and need to cautiously take decisions. The cost of coming to the US and treatments are so enormous that I cannot afford to do the wrong thing! My insurance won't pay so I'm carrying the costs personally.

Regards
Linkey

[helenlegs 11]

It's such a tough decision to make Linkey. All that you can do is ask the right questions and do as much research as possible. I would draw your attention to Dr Hibners blog talk radio show. I'm sure he talks about re-do's on here http://www.blogtalkradio.com/pelvicmess ... -hibner-md
There are also a couple of articles and a video (not for the squeamish) on the home page here.

1) Repeat Operation for Treatment of Persistent Pudendal Nerve Entrapment After Pudendal Neurolysis.

2) recent pudendal neuralgia publication
by Dr. Hibner in obgynnews.

3) video of Dr. Hibner's Master Course including surgery.

Take care,
Helen