Getting a diagnosis

[Kath]

Hi Calluna,

I am starting with amitriptyline and can add gabapentin if necessary.

Will this be your first appoinment with Dr Greenslade?

I've not read of anyone in the UK having surgery on any other board either. Not sure how long surgery has been available in the UK.

Kath

[calluna]

Same route my GP took with the meds.... hope they suit you! I had quite good pain relief with amitriptyline, it was very reassuring to realise that something was actually having a real effect on the pain. Gabapentin I had thought wasn't helping, but since I've come off it I realise that maybe it was after all.....

Yes, this will be my first appointment with Dr Greenslade. I am not quite sure what I am hoping for, my GP says that it will be helpful to have his opinion anyway as it looks as if this is here to stay.

[Kath]

Calluna,

After my appointment with him I would say that after a long trial on medication he would be suggesting nerve blocks for you. Do you think you would go for blocks?

Kath

[calluna]

I'll wait and see what he recommends. I've been trying medication for the last 19 months. My situation is a bit unusual in that my pelvis has a lot of mesh holding it together, it may turn out that there is not much that can be done. I'll wait and see what he says.

[mom]

So glad you were able to get your Doctor to read and be open to the info you gave him.
You are surely one of the lucky ones.
hope all goes well with you. Keep us posted on your progress.
Good luck
MOM

[IRIS]

I am a new member and I would like to introduce myself : I am a 56 years'old woman and I live in France. Like you I am a PN patient. My pain started in 2005 by going to the toilets all the time and then followed by severe burning sensations in my perinea, vagin, uretra and vessel. I was diagnosed having a PNE by doing a EMG examen and also an "echo-doppler" in the south of France with Dr Bautrant. He decided that as I was suffering so much even by taking morphin that a surgery was necessary. I was operated in may 2008 but have had only a slight improvement (10 percent). Since then I a looking for a way to visualize PN location in the body and I have heard that in the US you have a 3T MRI equipment which enables to see the route of the pudendal nerve and see where it is damaged or compressed. I would like to know if this type of equipment really enables to see the pudendal nerve and in which state it is. As of a month ago, I was told no equipment could really visualize this nerve.

Could someone confirm to me that it is really the case, also that he or she was diagnosed this way by dr Potter or another Doctor and had surgery and a good percent of improvement since then ?

if it is true, for me it represents a long trip to US and also a lot of money as I should have to pay for everything. It is why I want to make sure this information of a 3T MRI being able to visualize what is wrong my pudendal nerve is really quite true. I would have to borrow money to fly to the States NY.

Please do excuse my mistakes in your language but I try to do my best for you to understand me.

Looking forward to receiving replies so that to be better informed.

Sincerely,
Iris

[AliPasha1]

Hi Iris,
I had my surgery with Dr. Eric Bautrant about a year ago and haven't sen any improve yet.I had my 3 Tesla MRI done by Dr. Potter and she was able to visualize the whole path of the Pudendal Nerve.My PN is still entrapped in the Sacrotuberous ligament as well as the Alcock's Canal.In addition,the dorsal distal branch of the Penis/Clitoris is also entrapped in scar tissue.

I am not expecting any improvements from Dr. Bautrant's surgery anymore and I am scheduled to have redo surgery with Dr. Hibner on 25th,April,2011.

It is indeed true Dr. Potter at HSS in NYC can visualize the PN Nerve.

Regards,
Ali

[IRIS]

Hi Iris,
I had my surgery with Dr. Eric Bautrant about a year ago and haven't sen any improve yet.I had my 3 Tesla MRI done by Dr. Potter and she was able to visualize the whole path of the Pudendal Nerve.My PN is still entrapped in the Sacrotuberous ligament as well as the Alcock's Canal.In addition,the dorsal distal branch of the Penis/Clitoris is also entrapped in scar tissue.

I am not expecting any improvements from Dr. Bautrant's surgery anymore and I am scheduled to have redo surgery with Dr. Hibner on 25th,April,2011.

It is indeed true Dr. Potter at HSS in NYC can visualize the PN Nerve.

Regards,
Ali

Thank you AliPasha for your prompt reply. It is great and very kind of you.
Another question : do you know anyone who had surgery with Dr Hibner further to this 3 T IRM and did he or she get goood results ?

Regards
Iris

[scaredgal]

Hi Iris,

I'm so sorry you are suffering with this dreadful condition and you didn't get much relief from your surgery. I understand your concerns about the MRI since you will have to pay the cost out of pocket, in addition to the traveling costs. I've also had the MRI and here's my thoughts (please don't anyone get mad - my thoughts only!)

I think the test is very useful as it did appear to visualize scar tissue surrounding the branch of the nerves (in my case all distal) that really do match with my symptoms. I do think the test can visualize the nerve; however, I am not sure in all cases if it can really tell if it's entrapped, or if there is just something surrounding the nerve (whether it's scar tissue, ligaments, etc) that may be contributing. Most of the doctors (neurosurgeons) I have been to said the MRI cannot tell if the nerve is entrapped. Also, there is some debate as to what the "scar tissue" is when it's seen on the MRI - is it noise? is it merely thickened tissue? what causes the scar tissue? There have been two surgeries by board members which seem to validate the results of the MRI with what was found at surgery. But, I think that's too small of a number to definitely say the MRI is "THE" diagnostic test for PN - nor has it (so far anyway) guided or changed any surgeons procedure.

I think the results of the MRI have to be correlated with pain - but also with the thought that the MRI may or may not show everything that is wrong (unfortunately, only surgery can). Also, nerves are complex - just because you have pain in a particular location, does not mean that is where the problem is - nerves may be damaged at one area, but the pain is felt in a different area. Also, there have been no double blind studies on any of the PN tests - PNMLT/ MRI, etc. In other words, no one with NO pudendal pain has ever subjected themselves to these tests to see if they too have very messed up looking MRI"s but are pain free.

So I think it's a useful test and in my case based on my pain patterns, think it's pretty on target. But if insurance hadn't paid for my procedure and if I didn't have free airmiles for the trip, I'm not sure I would have gone.

[AliPasha1]

Hi Iris,
We know of two confirmations of two patients by Dr. Hibner of Dr. Hollis Potter.Dr. Hibner found exactly where Dr. Potter had predicted.They are both in the recovery process as of now.

The patients go by the alias of RR and Athena's mom.You can pm them if you like.

Regards,
Ali