New Person with Pudendal Nerve Disorder

[konedog4]

Thanks for the comments about biking again. The only reason I am considering it is because I miss it so much. I did get my initial injury riding an exercise bike that severely bruised my perineum and PN. That exercise bike had a seat that did not have a pudendal recess, so the perineum took all the pressure of sitting on it. If, and I mean that is a mighty big "IF", I try biking again, it will be for short distances and with a seat that does not place any pressure on the perineum. I thank every one for their concerns.

As to how much Shockwave costs, the initial week therapy is right around $3,500. That does not include the plane or the motel costs. So yes, it is expensive. For any follow-up, (3 days) the cost was about $500 dollars a day. I would check with Dr. Kirk Andrew to get the exact costs. I am by no means rich. I had to save for nearly a year to get the funds to go to Canada. Because I believed my injury was in the perineum and not in the ligament "clamp", I thought shockwave might really help me. Fortunately, it led to my (almost, nearly there) recovery. When I mulled over the cost of the therapy, I had to consider how miserable my life was. Yes, it would put a real dent in our finances, but I also figured that life was no longer "fun" being on my back all the time. I was willing to take out a loan if need be to afford the trip. My health and mental well-being were worth the risks of the cost and perhaps not getting better. I wanted to try every alternative therapy before I'd consider surgery. In my case, it was well worth the cost. I realize not everyone will respond to the therapy as I did. I was very fortunate.

I am most grateful for this board. Without it, I would still be on my back, unable to sit, depressed, and despondent. I found a person on this board who benefited from shockwave. I found his number, called him, and listened to his story. His was a lot like mine - bike injury, sitting pain, standing pain, etc. He got 80% better with shockwave. He encouraged me to try the therapy. Without this board, my life would be considerably hampered.

I am exceedingly grateful for those who organized this board and those who contribute. Thank you a million times over!

[stacyostrom]

MNMom wrote:'
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."

Talking about the jammer, i would like to recommend the bluetooth blocker ,this was the good device to use in the daily life,you can go to worldjammer.com get more details

[konedog4]

MN Mom,

Where are you seeing Dr. Antolak? I was being treated by him at MAPS Pain Clinic in Edina. He retired there earlier this year. Is he practicing there (or somewhere else) now?

He was quite interested in Shockwave, but admittedly knew little about it in the treatment of Pudendal Neuralgia.

My condition is now 98% better. I am certain I will be cured, 100% by end of year. I praise God for this healing.

kone

[konedog4]

Update: after a year of steady improvement, I am saddened to report that my right pudendal nerve has flared. I was out running, actually doing sprints, and perhaps the pounding is what set it off, but several days later, I was climbing a 5th flight of stairs and I got a "zing" in my perineum and right testicle. Over the three weeks since this occurred, the pudendal nerve has progressively become more inflamed to the point that it begins hurting when I get out of bed in the morning and also hurts a bit when I sit down. Previously, I had progressed to no pain upon sitting and had discarded my sitting cushions. My left side is fine with no pain. I continue my stretching, but have stopped running hard. If this persists, I may find myself back at Dr. Andrew's office for another shockwave therapy session. This is quite a set-back, as all signs were pointing to a complete recovery. While I am greatly disappointed, I hold out the hope that even this can again be successfully treated and resolved. I will keep posting and updating. Kone

[stephanies]

Kone,

So sorry to read of your recent flare. Hopefully it will quiet down fairly quickly for you and if not, that another trip to Cornwall will put you back on the healing path. In the meantime, I hope you are able to be comfortable by adjusting your activities and lifestyle (especially sitting) to promote healing.

Sincerely,
Stephanies

[konedog4]

Made an appointment for a pudendal steroid injection here in St. Paul, MN. I have also contacted Dr. Andrews for a possible return for Shockwave. My reoccurance is on the right side only. I had it originally bilaterally (according to Dr. Antolak). So while the pain is not as intense, it is still significant and quite a disappointment, as I was 98% recovered on October 1st!

kone

[janetm2]

Kone,
Very sorry to hear about this recent turn. I do hope you can switch it back around quickly. Any setback is devastating, especially as well as you did with the shockwave therapy. I fell in mid July and am just now starting to regain some stability. My thoughts are with you and take care.
Janet

[stephanies]

Kone,

Did you have nerve blocks and tolerate them well prior to shockwave during your previous treatment for PN? My pain was bilateral last time and only came back on one side as well.

Janet,

I am happy to see you are making progress after your fall this summer.

My best to you both,
Stephanies

[janetm2]

Stephanies,
Thanks for thinking of me. Any positive progress is great considering this condition.

Janet

[konedog4]

To answer the posted question, yes, I tolerated the steroid injections well. Never had any side effects, and I had at least 8 or more of them. Have not had a steroid injection since last July
I 'm greatly disappointed in the relapse; Crestfallen actually. BUT, I got better before and with time and prayer I can get better again. The only option I see is to keep trying to get better and moving forward. The world does not stop just because we don't feel well. We need to keep moving forward with the world as best we can. kone