New Person with Pudendal Nerve Disorder

[konedog4]

Hi, my name is kone, and I have had PNE/disorder for one year now. I injured the nerve riding an exercise bike in November, 2010, and then really aggravated the nerve when I lifted a heavy tree off a road. I really have difficulty sitting now, even with padded cut-out seats, and I am forced by my profession to sit most of the day. So this is very difficult. I now only sit at work on a custom-made cushion, and I stand, kneel, or lie down the rest of the time.

I am being treated by Dr. Antolak in Edina, MN. I have had two steroid injections which gave relief for perhaps 2-3 days each. I have my final injection in Alcock's canal area next week. This is where my pain is and where the original injury took place, so I am hoping to get a positive response. If the injections fail, I will have to consider surgery, as I do not want to further damage the nerve by sitting. I have researched the different approaches, and I favor Dr. Beco's approach (Belgium), over the TIR and T-G. I am wary of the Ansell TG approach, as he cuts ligaments and I do not want to end up with pelvic instability. (Dr. Beco cuts the SS ligament bilaterally and leaves the ST ligaments uncut). I think Dr. Beco's technique seems to be the least traumatic to the nerve. I read great things about Dr. Dellon, but since he does not take insurance, I simply cannot afford his surgical expertise.

I have e-mailed Dr. Beco already and he (surprise, surprise) answered back promptly! I am amazed at that alone. Try to e-mail an American doctor and get an answer! I would be interested in hearing experiences with Dr. Beco from other members.

I would also like to hear complete success stories from members. Most of the stories I read are quite discouraging, in that even with surgery, the person is left in pain and/or with persistent problems.

I take Baclofen for the perineum tightness, but it gives me paraestheias and tinnitus, and I already have hearing loss, and don't need to add to that. Can anyone recommend a medication that is non oto-toxic that relaxes the perineum and settles the area down?

I am having a non-related MRI on my lower spine soon. I know that there is a procedure called a N-MRI (???) that might show the area of entrapment? Does anyone know of this procedure or has had it themselves? As long as I am having the MRI, I would think that I could also have the Pudendal area imaged as well. I am going to speak to Dr. Antolak about this as he has not ordered this for me yet.

I walk and swim for exercise. I cannot do much else or too much aggravation results. Any other stretches I can do that will not harm the pudendal nerve?

I am thankful this forum exists and I hope to hear from many of you soon.

kone
(Minnesota)

[sam]

Hi Kone, I have been to Dr. Beco, he seems to be very understanding and sympathetic, but havent yet undergone the surgery. I am now struggling with several issues other than pain like prolapse and fissures, so I am not yet sure which to pursue first. Yes I can truly assure you that Dr.Beco was very empathetic and he assured me that his patients are able to walk a day or two after surgery, but he also said that it is better to ty the least invasive methods first as surgery is successfully only in about 60% of the cases.

[sam]

I think you stand a better chance of success since you nerve is not irritated for long and also you have pain only in the alcocks canal.take care.

[Violet M]

Hi Kone,

Welcome to the forum.

You might want to read this thread http://www.pudendalhope.info/forum/view ... =69&t=2490 before having your MRI.

I'm not sure what the answer is to your question for an alternative drug to baclofen. You could try flexeril which according to this unscientific study has a very low rate of ototoxicity. http://www.ehealthme.com/ds/flexeril/ototoxicity (http://tinyurl.com/7p5edea)

Many people with pelvic floor tension use benzodiazepines such as valium or klonopin. There is an interesting discussion on ototoxic drugs on this forum. http://www.medhelp.org/posts/Ear--Nose- ... how/373580 (http://tinyurl.com/7s7grkf)

Hope your upcoming block goes well.

Take care,

Violet

[konedog4]

Thanks for the responses. I went off Baclofen as it was causing hearing problems and paraesthesias in my arms and legs. I increased dose of Clonazepam to 1 mg per day and this has helped more than the Baclofen.

I would like to hear of anyone who has been treated by Dr. Beco in Belgium.

kone

[tummydepressed]

Hey Kone - I have nowhere near the level of expertise of others who have posted on this topic, so I won't offer any advice.

Can I ask how you find exercise though? Like you I run. I love it. When I find I am feeling rough, or very tight, sometimes it is the only thing that relieves the pain. I get pain in my buttocks/thighs when I start running, but it soon passes and I feel great when finished.

However, I have read that running can be detrimental. Just wondered how you find things?

[Lernica]

Konedog,

Welcome to the forum. PaulSa just returned from Belgium about a month ago after having surgery by Beco. He had a very positive experience. Why don't you send him a PM?

Hope you find some relief soon.

[carolynm]

I would suggest a Potter MRI, to see where exactly your entrapments are. Then, you can narrow down which surgeon is able to help you (i.e. proximal or distal Alcock's?...etc)

cari

[MNMom]

I also just started seeing Dr Antolak as I am a MN resident. There is not much out here on him, but he did direct me here to review his TG presentation. He is highly regarded locally.

I have had one injection which provided about 12 hrs of numbness in the middle of my pelvis, but not much relief since my pain is largely in the inner and back of my thigh, in my piriformis and down my leg in my adductors and hamstrings. I was able to sit over lunch which was a miracle. I was a little concerned b/c all of Antolak's questionnaires and tests deal with urological symptoms, which I do not have (or did not have until I started taking the Amitriptyline he prescribed me 12/2/11, I am backing off on that now, how awful). I know he has seen plenty of patients with sports histories, but he still seems to focus on nerve irregularities in the genitalia. I don't think I will have surgery with him as his approach seems extremely invasive, he does not preserve ligaments and results are not known for 12-18 months ?? I guess I will have to educate my primary care doc on this and hope he can help me (provide direction) - that should be interesting. As far as I can tell, between my 6 week out appts with Antolak he does not work with you to get additional imaging, look into Botox or trigger point injections, or try to manage your case beyond his 3 nerve blocks and surgery.

My injury had a slow onset . I was a runner and after my third child was building up my mileage. I started having a lot of pain down the inside of my legs which did not resolve with stretching. I saw three orthopedics and finally had bilateral hip repairs by Larson here in MN. By this time I had intense pain with sitting as well. Pain did not resolve and with hip PT (major glute strengthening) and only got worse. Finally, after my 7th PT, I got so bad I was totally bedridden for 5 months . My ortho then sent me for a second opinion on potential hernias, I did have a bilateral sports and inguinal hernia repair and that helped a little - but then went downhill again and was diagnosed with Illioinguinal Nerve Entrapment . My Neurologist got me on Neurontin and happened to be with MAPS Pain Clinic, where Antolak is, and he suggested I see him as well. Lucky! As I have never seen a OB/GYN or Urologist for any of my symptoms! Now I have been seeing a pelvic pain PT as well with little results. So it's been over 3 years now, my son who is almost 4 has no recollection of me ever holding him or picking him up and my daughter who is 5 1/2 has no memory of me being a healthy person. I have always had bad legs to her. Lucky for me, though, I do software development from home and have a daytime nanny for my kids as I can barely hobble around the house and can't drive anywhere. Thank goodness I can keep my job despite my physical limitations.

The site is wonderful and very informative. I do have to say this whole forum, though, (ironically called Pudendal Hope) is actually leaving me quite hopeless. Maybe no one with a successful outcome posts here b/c they have happily moved on from these boards. Can't believe my future is really this bleak? Yikes, I'm only 36 and used to be an active, independent person. I keep wondering how I am going to raise my poor kids if I can barely make it down the stairs and can't hope for anything more.

[GregT]

Just to give you a bit of hope, MNmom, a 47 year old woman (she's just on www.tipna.org) had surgery with Dr. Ansell in Houston back in October. She has had a tremendous recovery thus far. She honestly cannot believe how far she's come in just 2-2.5 months. At this rate, she's thinking that she may have a "Celeste-ial" recovery, which is a 100% cure.

Don't be hopeless, but please don't consider Dr. Antolak for surgery. I know of almost no one (well, maybe actually no one) who he's cured from surgery. This is not to say that it hasn't happened, but if it has, I just haven't managed to run into him or her on any of the forums.

Also, don't believe some of the scare tactics you hear about having your ligaments cut. In reality, there are very few people (out of a large amount) who've had any problems from having the ST ligament cut. Dr. Ansell (Houston) believes that there is almost no way to do the surgery (successfully) without cutting it because the PN is so often entangled with this ligament. If you'd like to speak to the woman who just had the surgery in Houston who is doing so well, send me a PM and I'll see if I can set up a phone call between the two of you. There's nothing like actually speaking with someone who's had a successful PN surgery, especially when you're so down and hopeless about your situation.

Greg