Flying across the US for PRF on Nov 13

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jaxi123
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Joined: Thu Sep 30, 2010 12:35 am

Re: Flying across the US for PRF on Nov 13

Post by jaxi123 »

Was your Botox done under CT guidance and were you asleep or awake?

The treatments should be done separately so you know what helped according to my dr.
stephanies
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Joined: Mon Oct 25, 2010 3:07 am

Re: Flying across the US for PRF on Nov 13

Post by stephanies »

Glad the PRF has helped. I have seen Dr. Richard in Maryland, although I have not had any procedures with him. I know he is considered quite capable. He spent a lot of time with me and he seems knowledgeable about PN. If you are looking to stay in the mid-Atlantic and not relocate, I encourage you to give his office another try. Hoping for even greater pain relief for you in the coming weeks!
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
puffsplus
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Joined: Mon Oct 15, 2018 11:10 pm

Re: Flying across the US for PRF on Nov 13

Post by puffsplus »

jaxi123 wrote:Was your Botox done under CT guidance and were you asleep or awake?
Ultrasound, and I was awake for everything. Just local anesthesia with lidocaine.
jaxi123 wrote:The treatments should be done separately so you know what helped according to my dr.
That is the empirical and technically correct approach, but the cost of the Botox wasn't that much on top of everything else, so it made sense to add it in. I was already flying across the country and so paying the airfare for all that, why not throw in whatever else might help?
puffsplus
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Re: Flying across the US for PRF on Nov 13

Post by puffsplus »

stephanies wrote:Glad the PRF has helped. I have seen Dr. Richard in Maryland, although I have not had any procedures with him. I know he is considered quite capable.
I hope you have better luck getting time with him than I did. I live driving distance to him also, but despite talking to two of his office staff and emailing Kendall repeatedly, I wasn't able to get them to give me estimated cost. Kendall his office manager and the other staffer were so nice and friendly and seeingly so helpful, but then I left messages and they never called me back and Kendall never replied to my last emails.

I ended up flying across country and back because Dr. Attaman was a) the first doctor who was willing to talk to me directly on the phone (albeit for a price), and who, unlike Dr. Richard, b) didn't need me to have a pelvic MRI first. Kendall had mentioned that Dr. Richard would want me to have a pelvic MRI first, but then of course I couldn't get my primary care doc to write an order for that either.
He spent a lot of time with me and he seems knowledgeable about PN. If you are looking to stay in the mid-Atlantic and not relocate, I encourage you to give his office another try. Hoping for even greater pain relief for you in the coming weeks!
Thanks! But first I'd need to get a pelvic MRI before Dr. Richard would treat me, and now my HSA account is down to just about zero, and I don't have $3K to spare to pay for the cost of an MRI once I do find a physician who'll write the order for me. I'd just as soon save up the money to fly to Seattle and back again, I think. Good luck to you, though!
trying2heal
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Re: Flying across the US for PRF on Nov 13

Post by trying2heal »

How are you doing now? Do you still consider the treatment a success? And does Dr Attaman use steroids in his nerve blocks?
stephanies
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Re: Flying across the US for PRF on Nov 13

Post by stephanies »

I understand Dr. Richard wanting a pelvic MRI and it is unfortunate your primary care doctor won’t write you a prescription for one. Will Dr. Attaman? Although I don’t think imaging is useful for identifying nerve entrapment, it can sometimes identify spinal issues or other pelvic issues that can be contributing to the pain and maybe change the treatment plan. I had several things picked up on a pelvic MRI that needed to be addressed through laparoscopy.
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
puffsplus
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Joined: Mon Oct 15, 2018 11:10 pm

Re: Flying across the US for PRF on Nov 13

Post by puffsplus »

trying2heal wrote:How are you doing now? Do you still consider the treatment a success? And does Dr Attaman use steroids in his nerve blocks?
Still short of two weeks. There's definitely an improvement, but not a complete remission, which is what I was hoping for. I've had a setback triggered by having intimate relations with my husband, but to be fair that was always the one thing that triggered the worst pain in me before. The act itself was relatively painless, which was a huge improvement from baseline. Before it was extremely painful AND I'd be in agony the day after. This time doing IT didn't hurt, but the day after I am in discomfort and some of my baseline discomfort/pain has returned. I'd say pain has gone from, on average, a 7 to maybe a 3 now (4 after intercourse). Definitely better, but still there.

And no, Dr. Attaman doesn't use steroids in his nerve blocks. He used rupivicaine on me, which is what the local Dr. had used too.
Last edited by puffsplus on Mon Nov 26, 2018 1:00 pm, edited 4 times in total.
puffsplus
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Joined: Mon Oct 15, 2018 11:10 pm

Re: Flying across the US for PRF on Nov 13

Post by puffsplus »

stephanies wrote:I understand Dr. Richard wanting a pelvic MRI and it is unfortunate your primary care doctor won’t write you a prescription for one. Will Dr. Attaman?
Didn't ask for one. I only wanted the MRI so that I could get PRF from the local doctor, and that appeared to be a requirement.
Although I don’t think imaging is useful for identifying nerve entrapment, it can sometimes identify spinal issues or other pelvic issues that can be contributing to the pain and maybe change the treatment plan. I had several things picked up on a pelvic MRI that needed to be addressed through laparoscopy.
Yeah, I think the utility of the MRI is mostly to rule out other problems. Now I have pretty solid confirmation that PN is what is causing my pain, though, just in case there was any doubt.
puffsplus
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Joined: Mon Oct 15, 2018 11:10 pm

Re: Flying across the US for PRF on Nov 13

Post by puffsplus »

Well, it didn't last. I had intercourse with my husband two days in a row about a week and a half after coming back. While I didn't have pain during sex, which was a change, my pain came back afterwards, almost back to baseline.

I saw a local pain doctor here. I'm beginning the process of getting docs for getting insurance approval to get a DRG implant.
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Violet M
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Re: Flying across the US for PRF on Nov 13

Post by Violet M »

Sorry it didn't last, Puffs. Good luck with getting the DRG approved. I would be interested to hear how it works for you and wish you success with it!

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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