Awaiting a phone interview with Dr. Conway

[tinker123]

Hi All,
I'm new here. A friend of mine has recommened I reach out here with my questions. She stated Karyn
had successful surgery with Dr. Conway. I'm currently awaiting a call from him for my phone interview. I think I've had PN symptoms for about a year. I also have hip issues which need to be fixed prior to PNE surgery. ( if I need surgery ). I have a ischial femoral impingement and a labral tear on my left side. All my pain initially was thought to be Piriformis Syndrome. After a MRA, it was determined that I don't have Piriformis Syndrome but the tear showed up and the IFI. I'm just curious on how many successful surgeries Dr. Conway has done for folks here on this board. Also, if surgery is needed, how long should one stay out of work.... I know it's a very long recovery.... Also, I would like a Potter MRI and wondering if I could request a script for this from Dr. Conway. I believe the Potter MRI will show any impingements in the hips and pelvis..... Thank you - tina

[helen1000]

Hello,

As far as Potter MRI dr. Conway told me that he does not need it. However I would try to find doctor who would do it. My PT is saying that she was in class and she was told that Dr Conway is the best along with Dr Hibner. However she is saying there are many cases when labral tear mimics PN. And she is seeing patients that are much better after labral tear operation. She is saying it is very important to find labral tear surgeon that does not have tendency to cut labrum but rather accurately repair it.
Because many use excessive traction, cut pieces of labrum, do unnecessary big scars.
When I went to Dr. Conway he said that since I have pelvic misalignment it is better to fix it first because it also can mimic PN.
So it is important to find Dr/PT who is an expert in this area and get checked before operation
Dr. Conway made very positive impression on me. He tends to explain situation and pays attention to tests and conversation with you. His office does EMG of pudendal and other surrounding nerves.
I met labral tear doctor and he said that recovery takes up to 9 months depending on situation. Dr. Conway said that recovery from decompression takes up to 3 years. I know it sounds depressing but this is what I was told.

This is as much as I know.

Good luck,

Helen

[tinker123]

Hi Helen,

Thank you for responding to me. I agree about getting the hips stable prior to PN surgery. I think having an IFI and labral tear in my left hip has caused my pelvic to be out of alignment. I have two good hip surgeons in mind for my IFI fix and labral repair. My 1st guy is a great UCONN doc here in CT, Dr. Michael Joyce... my 2nd is Dr. Bryan Kelly in NYC. I'd prefer Dr. Joyce being I wouldn't have to travel but if I ended up having to go to Dr. Kelly I'd make it work some how.... I have a follow up next week with Dr. Joyce and maybe I can see if he'd get me a script for a POTTER MRI. I'd like to have this test because I really think it pinpoints all areas of impingement in the pelvis and hips. I'm glad to hear that Dr. Conway is excellent. He was on vacation last week so hopefully I will get a call this week. I'm also glad that he does an EMG testing. This is very important too.
Wow, I cannot believe that the PN surgery recovery takes 3 years... boy, that's a LONG time.... So, you have a labral tear as well? Are you going to get that fixed soon? Even the recovery for that seems long being 9 mos. We have to stay strong I guess.... no pain, no gain....

Take care.... Tina

[Karyn]

Hi Tina,
Welcome to HOPE! I'm glad you found us.
Yes, I did have a successful surgery with Dr. Conway. I agree with Helen that he's a very compassionate doctor and talented surgeon. Also agree with Helen that he may want you to have your hips addressed prior to contemplating PNE decompression.
It's possible Helen's case may be different than yours. Dr. Conway will usually write a script for a Potter MRI upon request of the patient. Especially if their EMG readings come back abnormal. I would like to emphasize that a hip study is a different, separate study from the pelvic MRI. Also, as Helen pointed out, recovery from PN decompression can take UP TO three years; but that doesn't mean you'll feel the same way during this time.
I'd be happy to speak with you over the phone, if you'd like. Please PM me your phone number, if you'd like to chat.
Kind regards,
Karyn

[helen1000]

Hello,

I agree with Karyn on very important thing. It is UP TO 9 months, UP TO 3 years. Some people recover faster. It depends on your age, your injuries and many other factors.
So I hope it could be easier for you. But if it is not do not despair.
I do not know much about Dr. Kelly. But according to US News and World report HSS is first in US in orthopedics. I thought you should know this. However it does not grantee any particular doctor. Go to vitals.com and at least see what other patients are saying about your candidates. Google US news and world report doctors ratings. They mark doctors that are in 1% of the best in US.
And Karyn is right if you want to do hips and pudendal nerve Tesla MRI you need both in your script or 2 scripts. Otherwise your hips will not be researched. But since you know about labral tear maybe you do not need it.

As to me I do not know if I have labral tear. I visited LT doctor at August 1st. He did some X rays and manual exam. He said that it looks very much like this. I was recommended to go to him by my PT. She is saying it feels like labrum problem from inside.
I am having MRI arthrogram at August 14th. I almost want to have it since it oftentimes mimics PN and fixing it can make me feel better. My PT is saying that usually it follows with LT PT. Recovery includes time when you use walker or crutches and cannot put weight on your operated leg. Leg becomes weaker and it takes effort to return its strength and stability. And then SI joint PT, SI belt for approximately 3 weeks and prolotherpy to stabilize SI joints.
The other thing you should check before doing decompression is your T10-12 area. I am having it fixed now. This area has peripheral nerves that are so long that they can give you SI pain, hip pain, groin pain, and can mimic PN. As to my situation doctor who does my prolo said that my facet joints are unusually wide and can irritate nerve roots and my ligaments are extremely soft and it can make joints so wide. My T10 was turned left to 5 degrees and it could cause more irritation.
So before you do decompression do your labral tear repair, check your SI joints, check your T10-12 area. Rule it out. And see how you feel after that. My PT is saying that she could see many people that could be fixed this way.

Good luck with everything.

Helen

[tinker123]

Hi Helen,

I've had a MRA done of my left hip, the one with the tear. The
MRA also showed my IFI. ( Ischial Femoral Impingement ). I will definitely get these addressed prior to any PNE decompression. I initially had a sciatica feeling and went to my GP about 2 years ago. She gave me exercises to do which didn't help. I went back to her and she gave me a script for PT and gave me a name of a good spine doctor. I had a MRI of my back and only have very mild degenerative changes. Nothing major with any disc or facet joints. He looked at my SI joints too, very mild degenerative issue... nothing major. I'm 43 so your going to have some degeneration at this point. I had more of a Piriformis Syndrome feeling in my left buttock so I called my GP again who referred me to an orthopedist. I went around and around with this ortho doc and he just kept telling me to stretch and take muscle relaxers. I finally got fed up and moved onto another good ortho doc, Dr. Michael Joyce. He's helped me more and he was the one that actually diagnosed me with the IFI and not Piriformis Syndrome... Also, he ordered the right test for me, the MRA... The first doctor only took xrays of my hips.... I'm hoping Dr. Joyce can do my IFI and labral tear surgery.... if not, I'm definitely going to Dr. Kelly in NYC. I've ck'd both of these doc's out on RATEMD and they're both have very good results and comments. I also checked on Dr. Conway. Dr. Conway also has good results and comments.... I know my hip issues have caused my pelvis to be out of alignment which is probably causing the PN issues.... I will probably have Dr. Conway or Dr. Joyce give me a script for the potter MRI. I would still like it of both the hips and pelvis.... might as well why I'm there having it done.... Also, I've actually researched some on the sacro belts. I'm going to buy one.... I try to stand as much as I can now.... some days it's hard especially when you have meeting to go to and everyone is sitting...

Thank you for all your great advance and information.... I really appreciate it...

tina

[helen1000]

Hello Tina,

I had MRI of my spine and numerous X Rays. They would show disk herniation and nothing else. Then when I did Potter MRI she said that my SI joints are abnormal. Then I did CT scan and left was very wide while right was totally locked. Only after that I have got right PT specializing on SI joints and PN. Then she checked T10-12 and they were turned left. She ordered prolo.
Doctor who did prolo was skeptical. But on her X Ray machine turned T10 and wide facet joints appeared. She is saying that X Ray specialists do not report such things. So you need to find way (good PT, real doctor doing X Ray) to check it. By the way all facets of my lumbar spine were also turned left. When my PT adjusted it I stopped feeling herniation pain. Before I was treated for herniation for a long time with no effect whatsoever.

So it is difficult sometimes to find really good eyes (I am sure with your story you know it) to look at your situation. Doctors are narrow minded and look only for obvious things.

Good luck,

Helen

[tinker123]

Wow!!
It's crazy Helen.... I'm wondering if I need to get the Potter MRI for the spine as well. Is that even possible or maybe a CT Scan. Yes, the first ortho doctor made me waste 9 months which I could have had my IFI and labral tear surgery already out of the way. I wasn't a hip replacement so he didn't want to bother with me. I've heard that the SI joints can be rehabed. You just have to be faithful about doing the stretching and exercises daily.
You're really good, you've done your research.... I'm finally getting better about speaking up and not be so laid back. I will ask Dr. Joyce next week how we can be assured I don't have any major SI issue....

Thanks again .... tina

[helen1000]

Hello Tina,

I am not good. I learned through million of mistakes. If you have SI joints, by the way, stretches can be bad for you. If they are arthritic and not mobile enough they are good. If you have hypermobility issue like me you should not stretch. You should do other things. In some cases left and right need different approach. So find good PT and if you can good misalignment doctor.

Helen

[Jax87]

I highly recommend Dr. Kelly. He did my labral tear surgery in March and I am doing really well. Not off my Lyrica/Cymbalta combo, but I can sit and have sex, so pretty good. HSS made the process so easy. PM if you have any questions.