Out of Town treatment from Dr. Conway

[Faith]

For those of you who have traveled long distances to see Dr. Conway I was wondering how the whole process works. I am currently awaiting a phone consult from him (over 3 weeks now). I see that he has partnered with Lynne Assad, PT. Can you set up an appt to be seen by her if you go out to NH for treatment with Dr. Conway. Does he also schedule PNMLT and nerve blocks at the same time? How long is the typical stay to be seen by him and get all treatments (PT, nerve blocks, tests, etc)? Then do you have to fly out there every so often to see him or do you just follow up with local doctors until he decides you need surgery? Just trying to figure out this whole process.

[Karyn]

Hi Faith,
I'm a patient of Dr. Conways but don't travel to see him. I understand how frustrating it is to wait for his return calls but he truly is one of the most accomodating, nicest doctors I've ever met. He will do everything in his power to help minimize your trip. Unless something has recently changed, Dr. Conway does NOT do PNLT. He does EMG and that's usually done right before your scheduled appointment with him. I'm not sure if he absolutely requires nerve blocks or not. I do know that the nerve blocks are done in a series (every 4 - 6 weeks), so hanging around for them would be very time consuming. Is there someone in your area that could do them? I've never met Lynn, as I had already done PT prior to seeing him. What would be most important is to have your medical records, directly related to your condition readily available to him.
Dr. Conway also doesn't require anyone to fly out every so often for follow ups with him. He fully understands the financial and emotional stress of traveling. Do you have anyone in your area to help you?
If you don't hear from him by tomorrow afternoon, I would suggest giving the office another call.
Warm regards,
Karyn

[Faith]

Thanks Karyn for your input. I have heard Dr. Conway is very accommodating and understanding which is why I chose him to begin my "official" PN diagnosis journey with. But after reading some of your posts about the TIR vs. TG approach and the fact that he doesn't do the TG worries me. I am not anticipating surgery right now (in fact not for some time as I need to try other treatments first), but if it comes to that I really hate to have to switch to a totally new doctor with new protocols.

I don't really have a good local doctor. I live in a small town and am currently trying to decide what to do about a doctor. I had been traveling several hours to a physiatrist who specializes in pelvic pain (specifically SIJD), but am not really getting anywhere with her. She said she could refer me to a urologist who does some PN blocks, but I don't know if I want just anyone doing a block on me, ya know? I know that I will probably need a local doctor to adjust medications/follow up with though, won't I?

I have a huge musculoskeletal link to my pain as well so I feel like I need multiple doctors, or will Dr. Conway be knowledgeable of these issues too?

[Faith]

One more question for you Karyn. I see on your signature your EMG showed bilat PN and Inguinals. I didn't think an EMG could diagnose PN? Sorry, I'm still new to all this and don't really understand everything. I didn't think an EMG was as specific as a PNMLT, but Dr. Conway doesn't use that?

[Karyn]

Hi Faith,
Thanks for responding to my reply! It's nice to meet you ! Yes, it's true that I'm not considering Dr. Conway to perform surgery on me. As much as I like and respect him, I'm very uncomfortable with the TIR approach. I was hoping Dr. Conway would've gotten some experience with the TG by now, but as far as I know, he hasn't had the opportunity yet. So, I can definitely understand how you feel about going all that way to see him, and if you ARE a surgical candidate, you'd have to make the choice if you feel TIR is right for you. The thing is, he's the very first Dr. to acknowledge my symptoms and ... not make me feel like a freak! Furthermore, I live a mere 20 minutes from his office!
I also understand about not wanting just anyone to do nerve blocks, too. I don't know if you've had the chance to read the HOPE thread about nerve blocks or not. But you've already tried PT and you're still going, without positive results. I'm curious as to why you're interested in seeing Lynn? I do know that Conway does not mandate that you see her as part of his diagnostic process.
Have you considered having a 3T MRI done in NY? Do you currently have anyone that would write you a script for it? The EMG is used as a diagnostic tool to record nerve conductivity.
From what I understand, it's not 100% reliable, but neither is the PNLT. I've never had the PNLT, so I can't personally compare the two. I honestly don't know if or what the reliability difference is. However, if you could swing the 3T MRI, that may give you a clearer picture of which direction you should be going in.
Could you please provide a little more info about your musculoskeletal problems? There are some fabulous people in this group that may be able to contribute helpful information for you!
I wish the best for you, Faith and sincerely hope we can find you an accurate diagnosis and treatment!
Warm regards,
Karyn

[Faith]

Karyn,
That's so great that you only live 20 mins from Dr. Conway. You are very blessed! My musculoskeletal issues are SI joint dysfunction and all the other issues that go along with that (tight piriformis, tight hamstrings and calves). I have trigger points in my pelvic floor too especially around the obturator internus area. I have a lot of sacral/low back pain and pain where the ishcial tuberosity connects to the hamstring muscles. I would like to see Lynne or really a PT who does connective tissue mobilization and is more PN "aware". I thought maybe if I went to NH I could meet with Lynne too for another opinion. My PT here just isn't that experienced. I think I will benefit from connective tissue mobilization and external myofascial release from what I have read and since my sitting pain started after SIJ manipulations. I have messaged with HerMajesty and a few others about musculoskeletal issues.

Is NY the only place you can get a 3T MRI? I would prefer that or an MRN to a nerve block as I didn't respond well to an S1 nerve injection I had that contained steriods (I flared badly). I don't know that I can afford a trip to NY on top of all this.

[Karyn]

Hi Faith,
Yes, NYC is the only place you can get the 3T, if you want a clear pic of what's going on with you and have it accurately read. The MRN is another option.
Do you have good insurance? I know HSS takes out of network insurance. If you really want to avoid the blocks, I'd get the scan done ASAP.

That's so great that you only live 20 mins from Dr. Conway. You are very blessed!

Well, I definitely felt that way in the beginning of all this. However, I'll be flying out to OKC in January for a surgical consultation with another doctor!
So, it's kind of a double edged sword. I truly do feel blessed to have Dr. Conway provide my follow-up care, though. I know most people don't have anyone back at home after flying to have surgery elsewhere.
Warm regards,
Karyn

[Quilter 2]

Hi Faith;
I have Dr. C and he is the kindest person you could meet. Lynn is another story. My PT here in VT couldn't get a report from her so that she would have a second opinion on how to proceed with me. I finally got my Pa's office to get on her office. After 1 1/2 months, we finally had a report. Not very professional in my opinion.
You could try PMing Kat. She is a lovely young lady that just had surgery with Dr. C 4 months ago. She lives in MO. I talked to her today and she's still happy with Dr. C even though she still has a way to go. She also had a lot of other stuff going on. I'm sure she would write back to you. I'm scheduled to see Dr. Hibner in AZ in April for a second opinion. I'm having a Botox shot in 2 weeks with Dr. Quesada, Dr. Conways, I'll call him partner, but not sure if that's the right word to describe him. He is my pain specialist, but I have a Physicians Assistant here in town at a clinc. Like you, where I live is VERY small. I think you need a PA so that if the pain gets to bad, you can get the meds you need. Many of the meds need to be hand delivered to a pharmacy, so if I don't have a script in hand when I leave to NH I'm stuck.
At this point, I'm leaning towards surgery with Dr. C mostly due to the distance. Now, that may change after I see Dr. Hibner. I hope not. We live a little over 4 hours from Dr. C. If I understand correctly from Kat, after surgery you need quite a bit of help. I can get "babysitters" here. In AZ, depending how long I'd have to stay, my husband may have to fly home to work and I'd be alone in a hotel room in a strange city.
We have a 3T MRI here in VT but Dr. Conway checked with Dr. Potter in NYC and she said no to having it done here. I think she wants to use her own people that have been trained for PNE. There would be certain positions to put us in to get the results she's looking for. It makes sens e to me, but the money is just about gone and what's left, we'll be leaving it in AZ.
The people on this site are incredable. Look at everything you have time for, even though it may not seem to apply to you. It just might, down the road.
My very best to you. I know how hard it is and the money disappears flying all over the place. But what else do we do? This site just might save you a few non productive trips.
Hugs to you;
Doreen