New to Forum Need help for my Mom

[VicN]

I came across this website while researching Pudendal Nerve Entrapment. It has been so helpful. My mother has been suffering with this since May. She was finally diagnosed in July, which from what I have read, she is lucky the ER doctor came to this conclusion so quickly. Since then she has had several injections and been on all kinds of meds (neurontin, lyrica, cymbalta), but the pain keeps coming back. The doctor here recommended seeing Dr. Antolak in MN. However, he can't get her in until November. Does anyone have any other recommendations on Doctors? Ansell in Houston? Hibner in Phoenix? I am trying to research but am not as familiar with all of the terminology yet. I am sure we will be soon! Thank you. I appreciate any guidance. We are newbies.

[janetm2]

Welcome to the forum. I have not seen the aforementioned doctors but others will chime in and I think the surgery section may have the most info on them. In the meantime for meds you may want to ask for tramadol and/or oxycodone painkillers to give her a break until you get somewhere. Also the meds she tried did she stay awhile on them and raise the dosages high enough, i have neurontin at 1500mg per day but others say it needs to be higher to get the benefit. Check out the FAQs off the home page for other guidance on how to help her and steps to take. Editing to say using ice can help, but please use a towel so it is not too cold and only 10-15 minutes per hour (Calluna mentioned this on a post I just read). Best to you and your Mom.
Janet

[helenlegs 11]

Hi there and welcome,
Yes as Janet said the home pages do have a list of physicians. They are more scarce than you would imagine hence the wait. However they are all there so if you want something quicker it might be worthwhile travelling, although there is no guarantee anyone will have an earlier appointment available, it is worth trying of course. All of the Dr's you mention are on the list here.
The home pages also have tons of invaluable info on PN.
Take a look at the list of PT's as well.
Good luck to both of you.
Take care,
Helen

[VicN]

Thank you and I will check out the areas you suggested. My mom was on a high dosage of neurotin that was increased over time and then she had a bad reaction to it: involuntary muscle movement, nausea, etc. The same with Lyrica. She is now trying Cymbalta. She also has a multitude of pain meds too. Again, appreciate the fast responses.

[helenlegs 11]

Got to say that Cymbalta has helped me, and like your mom I wasn't great with lyrica or neurontin so stopped them too.
She could try tramadol. I use it for (normal) pain, although it isn't supposed to be any good for nerve pain it seems to work with some PN symptoms.
How did her symptoms start?
Let us know how you both are, it's great that you are helping her.
Take care,
Helen

[carolynm]

If you tell us where you are, hopefully someone knows of a PN-aware dr in your state.

Cm

[VicN]

She is in KY and has been working with an Ob/gyn and a pain doctor. Both of them send PNE patients to MN. The Ob/gyn also has her working with a PT. Any advice would be welcomed.

[Violet M]

Hi Vic,

Hopefully your mom will be able to avoid surgery. Since you are considering surgeons at this point, Dr. Ansell is probably the most experienced PNE surgeon in the US, however, Dr. Hibner is also very experienced. As with all of the PN docs, there are success stories and disappointing stories because this is not an easy illness to cure.

Hopefully the physical therapist your mom is seeing is familiar with pudendal neuralgia and all of the frequent accompanying related musculoskeletal conditions such as SI joint dysfunction, pelvic misalignment, labral tears, etc. Hopefully your mom is being evaluated for those. Some of the PN surgeons believe it's important to spare pelvic ligaments during surgery, especially the sacrotuberous ligament -- others don't believe that's important. So you probably want to do some research on the different surgeries available and which would be best for your mom if she gets to the point of surgery. Reading the case update and surgery section of this forum will give you a lot of info.

Best,

Violet