Mri results

[jen9952]

Hi all,
I posted earlier but did not get one reply , I had a MRI with Dr Potter, long story short , she does not think that my symptoms are caused by PN , even though the MRI showed left sided damage of the pudendal nerve.
My Symptoms are
left buttock pain and the pain goes down my leg numbness tingling
hip pain (aches)
back pain
trouble standing and sitting
problems walking more than about a half mile
and the pain could be anywhere on a scale from a five to a ten


can someone please let me know if they have or had these symptoms, I am scheduled for surgery on the 23rd...and i am scared to now, because Dr Potter thinks I should wait, but I am in so much pain!!!
i really need some advice
Thank you
Jen

[Karyn]

Hi Jen,
I tried to look at your Potter MRI but wasn't able to find it. Your symptoms do sound like PNE. Please correct me if I'm wrong, but I think you posted about having ann EMG, with conduction values pointing towards bilateral entrapment? Is your pain on the left side only?
Dr. Potter is an exceptional radiologist but I personally don't think she's qualified to give patients treatment advice.
Please feel free to contact me, if there's anything I can do to help ...
Warm regards,
Karyn

[jen9952]

Hi Karyn, thank you so much for responding, I am going crazy!!!! I went to NYC to get and MRI and Dr Potter read it and the left side was entrapped with scar tissue from the previous surgery and the ligaments are thickened ...what ever that means....it look like a smashed worm!!! the right side looked great it looked like a pencil , no scar tissue there was even a layer of fat to protect it.

Yes you are correct I had emg test done with Conway which showed problems on both sides I think the right side was a 6 ...but the MRI showed the right as being perfect???? and where as all my symptoms are basically left side , severe hip and buttock and leg...the MRI was probably correct. so than again I do not know how accurate EMG testing is .....but I have seen the MRI with my own eyes..so I guess I will have to go with that!!!

Now the confusing part, as it wasn't confusing enough, Dr Potter told me that my symptoms were not PN related so she wanted to see an MRI pf my spine that I had done in Maine, so she read it and said that my L4 and L5 was bad and wanted me to have a Facet injection which I did....did not help at all...nada ...niltch ..I am so sick of going to doctors..

So after all that the 3T MRI that I had to pay cash for....so now I am poor and in pain and very, very confused, I have yet to hear back from Dr Conway on his thoughts of Dr Potters MRI .and I am scheduled for Bilateral...when it looks like I only need unilateral....

I had my Potter Mri posted for a couple of days and had no responses so I deleted it .... I can re post it or email it to you if you would like to see it

So there it is that is where I am left...sorry for the long post ..but I need advice...this is literally driving me crazy .

thanks again Karyn< I hope that you are still continuing to have pain free days .

[helenlegs 11]

I do remember your post Jen, sorry. . . .was waiting for someone else clever to start it off . She had something at the end about you not having the right PN symptoms? ? not exactly that but something relating to that? which I found a bit questionable on the report. Please put it up again, but from what I remember maybe she thought that your description of symptoms didn't give a clear PN picture. Surely the scan does though.

[Karyn]

Hi Jen,
I can certainly understand your confusion. A (6) is a pretty significant reading. Do you have pain on your right side at all? If not, I would probably opt for having only the left side done. I think it's very interesting - and telling, the facet injections weren't helpful. I wish I could provide you with an explanation for all of this, but I can't. My best advise is to go with your symptoms. Yes, please repost your report.
Dr. Conway is good about returning calls, but unfortunately it takes a while, some times. I hope you hear from him soon! Are you planning on staying in NH after the surgery or going back home?

thanks again Karyn< I hope that you are still continuing to have pain free days

You're welcome, hon. And thank you for your well wishes. I would like to clarify that I am NOT pain-free, though. I have significantly reduced pain, but it's still there.
Please drop me a line or give me a call, when you can.
Hugs,
Karyn

[jen9952]

Hi all and thank you , I appreciate this more than you will ever know,
Karyn, I am glad that you are at least having less pain...that is always a good thing

I do not have any symptoms on my right, besides back pain , that radiates across my lower back...my main problems are all on my left, extreme pain, I believe why Dr Potter did not think it was PN related is because i do not have any rectal or vaginal pain, like I did prior to my first surgery, but when I seen Dr Conway in July I explained my symptoms he thought it was all PN. I have already decided just to have my left side done, after seeing the MRI .
Yes i do plan in staying in a hotel after the surgery , I was hoping to stay at the Residence Inn again but there prices went way up, and like I said I spent all my savings on the MRI so I dunno...maybe I can sell my right sided good pudendal nerve to pay for it...lol ..I know I should not joke about it...but might as well laugh as cry , I do enough of that.
Again sorry for all the confusion, I am probably not making much sense , but they loaded me up with steroids , so I am cranky and hungry , and tired of getting shots in my arse.

Helen ,thank you I will re post my MRI results , if any one has any suggestions or advice please chime in ..

Thanks
Jen

[jen9952]

Here is the 2nd page

thank you

[HerMajesty]

Ok, so she sees a thickened sacrospinous ligament and encasement of the pudendal nerve in scar tissue at that level. Sounds like a pudendal entrapment to me. 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.

[Faith]

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. Go off your symptoms. And I agree, I wouldn't do both sides if only one side is true PNE pain. Did you have a decompression surgery before on both sides? Did Dr. Conway did your first surgery?

[Stephanie P]

Hi Jen,
Re your left-sided pain, and symptom-free but high MRN score on the right side, I was in a similar situation. My pain, which was central, radiated from the left side, with no pain at all from the right side. However, PNMLT testing in Nantes produced a much higher score on the right (8) than on the left (5.7). At operation, 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.