Health Organization for Pudendal Education

I can understand that your brain is just scrambled with all of this but the pictorial evidence of pudendal entrapment and the lack of usefulness of the facet block does point to PN. I know the scan said your piriformis muscles were symmetrical but they could both be similarly tight? and that could explain the hip pain. Most people do have piriformis problems because of PN. (sorry I know I am the 'piriformis queen' and mention it such a lot) Have you sent your scan results to Dr Conway?

Stephanie P wrote: Professor Robert found both sides to be severely entrapped (and flattened), the left side more so than the right. When I asked why the left side was so painful, and the right side not painful despite the high score, he said this was because pain fibres were more affected on the left side, and motor fibres on the right side.

Could this thing get any more difficult to determine !!!!

Hi Jen,
Thanks very much for reposting your report. I agree with HM and Faith:

Faith wrote:While I know Dr. Potter is a good radiologist, I have to say (as I've said previously), the 3T MRI read by Dr. Potter is not yet been determined by the PNE surgeons to be diagnostic for PNE. This is still very new and there is definitely room for error. I agree Dr. Potter should not be giving medical advice. They did this surgery for over 20 years without a Potter MRI and I just don't think we can rely on it yet.

HerMajesty wrote: I don't like the part where she discounts this on the basis that your symptoms do not seem classically pudendal. The entrapment is OBJECTIVE, symptoms are SUBJECTIVE and vary greatly depending on the individual. Of course I am not an expert at this but it almost seems like she found the pathology and then discounted it.

I also had "prominent thickening" in the ligament area - ST to be specific. However, this was not picked up by Potter's MRI. The aforesaid quote came from my OP Report.
So, my ST ligaments were infact trapping the PN at that level. Other discrepancies between my OP report and MRI included the rectal and perineal branch. Not trapped according to Potters MRI, but encased in scar tissue (as well as the clitoral branch, which she did note) at the time of surgery. I thought maybe she couldn't pick up these small branches at first, but then I started to notice her commenting on them with other patients. Her report also says my ilioinguinals are fine - which they are not. That's going to be my next and hopefully FINAL surgery. I don't know when .... sigh ....

I'm also confused by this statement on your report:
There is some prominence of the pericervical venous plexus but no features to suggest that of pelvic venous congestion syndrome.
Could she have been having a bad day, that day?

Stephanie P wrote:When I asked why the left side was so painful, and the right side not painful despite the high score, he said this was because pain fibres were more affected on the left side, and motor fibres on the right side.

Very interesting! In light of this information Jen, I'd discuss this possibility with Dr. Conway before making the decision to have only the left side done.

helenlegs 11 wrote:Could this thing get any more difficult to determine !!!!

Spot on, Helen!!!! I do feel badly for all the surgeons who are trying to treat us. Everyone is so different! PN(E) is not a clear cut diagnosis where you address one thing and it's the same for everyone, resulting in the same prognosis.

Jen - about the hotel: I completely understand your financial concerns. I know of another community member who has stayed at an Extended Stay hotel in Nashua. I'd be happy to get that information for you, if you're interested. I had the opportunity to view the rooms at the Crowne Plaza and the Holiday Inn. I haven't checked out the Regency, yet. In my opinion, the Crowne Plaza was not PN friendly. Especially the bathroom. The Holiday Inn has specially adapted rooms, which are much more easy to navigate. However, ordering meals from these hotels can get very costly, too. Will someone be accompanying you?
Warm regards,
Karyn

I agree with Hermajesty on the piriformis. My hip and butt ached so bad 3 years ago esp. on the right side and radiating down the back of my legs to the heels in my feet I could barely walk it was so painful and it was all due to piriformis. If I keep my piriformis under control the sciatica stays tolerable and my butt pain is so much better. It has been regular trigger point injections (every 6-8 weeks), regular visits to a chiro to get my hips back into alignment because the muscle spasms knocked me out of alignment, TENS unit (I use it several hours a day), cold laser therapy treatments, and weekly piriformis massage with a massage therapist. This is something you should talk with Dr. Conway about because surgery could potentially really aggrevate this. Some of my piriformis pain is better since surgery but I have a long ways to go before no more piriformis pain but I am hopeful I'll get there so the above therapies continue.

You could have more than one thing going on. If you have issues at L4-L5 they could be adding to the pain in your legs so don't discount multiple origins of your pain. Have you seen PT to see about alignment issues or a chiro?Another possibility is SIJD. SIJD can mimic PNE as the symptoms are very similar. They can also go hand-in hand that you could have some small amount of SIJD along with PNE.

I do think it sounds like you are entrapped on the left side. I have previously posted on the limitations and unknowns of Dr. Potter's MRI results. Please look them up and read those as you will find it helpful to explain some of your results. Also, there is a section on the nerve conduction studies. There are issues with these studies so take some time and get a good understanding of the limitations of all procedures we undertake.

Good luck and prayers are sent your way.

Hi all, thank you so much for all the posts, you guys gave me a lot to think about. I also think I have a piriformis issue because when I stretch the piriformis muscle it does not seem so painful, and on the days I do not stretch it does seem tighter , I spoke to Dr. Conway about this he did not feel it was a muscle issue!!! also I was diagnosed with one leg longer than the other, my left being the shorter one ,coincidence I dunno, also when I was going to PT I was told my pelvis was twisted , I did have some manipulations done, but did not seem to help.
As far as my SI joints my Doc here thought that it might be it, I had SIJ injections that did not take my left sided pain away.

Dr Potter went over the MRI with me and showed me the right side and I do not know what it is suppose to look like but , it definitely looked different from my left, she even described my left as a flattened worm and there was no fat there to protect it. the right side really did look good had a nice layer of fat there!! I asked her about my piriformis and SIJs ,she told me they look great , but she did have a full view of the SIJs.

I do not think there is such a thing as classic PN symptoms, even before my last surgery my symptoms changed almost daily . and I never got relief from sitting on a toilet , like you read about, so I do not think there really are anything about PN that is easy to diagnose.

I am going to call Dr Conway tomorrow , and get his take on this whole thing, but I do feel at this time that I am only going to have my left done and pray that it helps.


[quote="nyt"]I agree with Hermajesty on the piriformis. My hip and butt ached so bad 3 years ago esp. on the right side and radiating down the back of my legs to the heels in my feet I could barely walk it was so painful and it was all due to piriformis. If I keep my piriformis under control the sciatica stays tolerable and my butt pain is so much better. It has been regular trigger point injections (every 6-8 weeks), regular visits to a chiro to get my hips back into alignment because the muscle spasms knocked me out of alignment, TENS unit (I use it several hours a day), cold laser therapy treatments, and weekly piriformis massage with a massage therapist. This is something you should talk with Dr. Conway about because surgery could potentially really aggrevate this. Some of my piriformis pain is better since surgery but I have a long ways to go before no more piriformis pain but I am hopeful I'll get there so the above therapies continue.

NYT when you say that some of your pirifomis pain is better since surgery , do you mean PN surgery ?? sorry for all the questions.. but my symptoms are very similiar to what you are describing , I get pain all the way down to my foot , but the pain is not only in my back of my leg but also the front.

Karyn, I will be having someone with me, poor guy did not know what he signed on for , I will have to look into the Extended Stay ,thank you , because i can just not afford the Residence, and I really like the ones with the kitchens, after my last PN surgery I was mostly eating soup and crackers, the pain meds made me so sick.

The thought of going through this surgery again is so frightening , I remember saying after the first one never, never again, and here I am, the things we have to do to get out of pain!!


Thanks everyone for all the replies , it really makes me feel a lot better about things. I appreciate it so much !!!

Have a great day , and please forgive my bad spelling

Jen

Jen,
Did Dr. Potter go over your results right away? And did it take long to get a copy of the report? Do you just sign a release at the desk and they mail it to you?

going next week...

wish I had more advice for you on your results. When is your apt with Conway?

cari

Hi Cari, yes Dr Potter did go over the results right after the test, I got a copy right away , so you should not have to wait for it.

My surgery is scheduled for the 23rd, I still have not heard back from Dr Conway , so I do not know what he plans on doing???? so I might have to reschedule.


I hope I helped some, if you have any other questions , let me know!!!


good luck next week


Jen

Yes, I mean my PNE surgery.

My piriformis looked normal on the MRI. Remember you can't see trigger points on an MRI. I know I have them because you can feel them and when they are injected with Marcaine I have the classic trigger point muscle twitch. There are things that can't be seen on an MRI such as trigger points and neuromas so be careful not to think that you don't have piriformis syndrome just because your piriformis looks normal on the MRI. I would also ask a PT and chiro what they think for 2nd opinions or if you see another dr.

Addressing your leg length discrepancy won't cure you but it might help. Also, remember there are long term consequences of leg discrepancy that might not show up for 30 years so it is important to have a PT or a chiro address this issue. They will need to determine if the leg length discrepancy is due to misalignment or if you have an anatomical short leg that you will need a heel lift for. Three years ago I was told by PT that I had a leg length discrepancy and every PT and chiro I saw after that told me the same thing but no one treated it until about 9 months ago with my new chiro. She gave me a heal lift and it has helped the ache I use to get around my left hip. I use to tell my massage therapist and chiro I wish someone could pull my left hip down and since the heal lift I don't feel that way. I have an anatomical short leg so I was born with a small discrepancy.

It took about 3 weeks of visiting a chiro 3/week before I noticed any difference in my piriformis pain as they started to get my hips in alignment. Some fixes you notice differences right away, other fixes take time. At least now I can tell when my hips start to get out of alignment and the chiro puts them back in and it is holding better each time.

Hugs and prayers sent your way.

I have been seeing a Chiropractor for the last week, and all my muscle on my left are in spasm, even in my lower back... just on the left, my IT bands are tight and also my psoas , so I am all messed up. My Chriro does not think I should have the surgery , but the pain in my hips and back is horrific and now I am getting the tailbone pain back.

I decided just to have TG surgery on my left , and praying that will give me some relief , I am just so scared that the first surgery cause all these muscle issues, but I just want the pain to stop!!!

My surgery is Friday and I am so so scared, every other hour I want to cancel it , driving myself crazy with what ifs , I wish I had a crystal ball , it would sure make the decision a lot easier ..


thanks all for your inputs, have a great day ,

Jen

I sympathise fully. . . if only that crystal ball did indeed exist. Sorry I can not tell you, that you are doing the right thing or not, the only person who can decide is you but from what I have read on here, Dr Conway would not rush into this surgery without there being a good reason.
I will feel exactly the same as you I'm sure, if I ever get to that stage.
Sorry it's so complicated, I wish you well .

Jen,
Karyn and everyone else who has posted about Dr. Conway says that he is a capable and caring physician. He sounds like someone you can trust to give you his best advice. I would take his advice over a chiropractor. Now that he is doing the TG approach, he will be able to reach more of the nerve and give you a much better chance at a successfull outcome. Good luck.

Don