Surgery with Shobeiri

[Karyn]

Well, I've got a date for surgery, anyways ...
I contacted Dr. Shobeiri's Office in Oklahoma City a little over 3 weeks ago to make an appointment for bilateral TG surgery. Upon my first call, I explained I'm from MA and was hoping to consolidate my visit to one trip. I was asked to FAX just a few of my records, directly related to my condition, so the doctor may review them. Well, I don't know about you, but who has "just a few" records directly related to your PN??? Anyone??? They also asked me to contact my insurance company to verify coverage (I am covered 100%!!!). So, 30 pages later, I FAX'd my stuff over the very next day and called BC/BS. The info I sent over was a brief letter introducing myself, a symptom history including dates and locations of all the diagnostic I've had done to date, all the treatments I've had, the meds I've been on, records from Conway's office, records from Quesada re: the nerve blocks and IV infusion, the last report from PT and the 3T MRI report.
I also forwarded Dr. Conway's contact info, as he has generously agreed to provide my follow up care. As discussed with Dr. Conway, I explained in my letter to Dr. Shobeiri that I thought Dr. Conway is a very compassionate, knowledgeable doctor, but I'm highly uncomfortable with his current approach to surgery. After sending the transmittal, I called to make sure there was enough paper in their FAX machine and inquired as to when I might hear back about the appointment. I was told by the surgical coordinator, Jessica, that Dr. Shobeiri was out of the office for the next 3 weeks (teaching) and he would review my records and situation when he got back. She also assurred me that they would do their best with trying to do this all in one trip. So, I got the call last night and I'm scheduled to meet with Shobeiri on January 18th. Jessica relayed that Dr. S wanted to make it very clear to me that although he was having her book surgery for January 20th, that he was NOT guarenteeing me surgery. While this statement makes me want to hyperventilate, I'm trying to approach this with a positive attitude. I mean, how could someone leave me like this??? Additionally, meeting him on the 18th also gives ME the opportunity to assess HIM.
I asked how long I'd need to be there after surgery and she said I'd only be in the hospital for one day. But she also said I'd need to have a 2 week post-op follow up. I kinda freaked again and explained to her that there was no way I could find someone to stay out there for 3 weeks with me and reminded her that Dr. Conway offered to provide my follow up care. I gave her his contact info again and asked if I could have him do the post op. She said she'd have to run it by Dr. Shobeiri and get back to me. So, I'm thinking of calling Conways office this morning and asking if he'll send Shobeiri some kind of letter of introduction or something. What do you think? Well, this is where I'm at now. I'm very nervous and anxious. I need to get a grip and let this go until January, when I'll really have something to be nervous and anxious about!
Warm regards,
Karyn

[Chrisdag]

Hi...I'm brand new to this site...have been suffering from left sided PN since having a laparoscopic hysterectomy with the DiVinci robot almost two years ago. I'm scheduled for surgery with Dr. Conway next month but am having reservations after reading some of the postings on this site. What is it about his approach that makes you uncomfortable? I also read Wendy's personal story on this site and how she had to go to Dr. Hibner to correct the surgery Dr. Conway had performed. He is not doing the TG approach on me, and at first I was OK with that, but now after reading all these stories, I'm having doubts. I've read so much about the different approaches and am totally unsure as to which approach is the best/most successful. I'm so happy to have found this site after suffering alone for so long. All the best to everyone living with this horrible, life altering condition.

[HerMajesty]

I am glad things are coming together for you Karyn. I cannot imagine that after looking at your records, he would see you in person and suddenly decide you are not a surgical candidate. I think you handlled the thing with Dr. Conway, with a lot of class as well.

[Celeste]

Hi...I'm brand new to this site...have been suffering from left sided PN since having a laparoscopic hysterectomy with the DiVinci robot almost two years ago. I'm scheduled for surgery with Dr. Conway next month but am having reservations after reading some of the postings on this site. What is it about his approach that makes you uncomfortable? I also read Wendy's personal story on this site and how she had to go to Dr. Hibner to correct the surgery Dr. Conway had performed. He is not doing the TG approach on me, and at first I was OK with that, but now after reading all these stories, I'm having doubts. I've read so much about the different approaches and am totally unsure as to which approach is the best/most successful. I'm so happy to have found this site after suffering alone for so long. All the best to everyone living with this horrible, life altering condition.

Barging in to say, I don't think it's about going to Hibner to get a surgery corrected...it's about going have a TG surgery to completely decompress the nerve because the TIR does not completely decompress it. I think it may help some to some degree if the ligaments were not the problem...but if they are, then the TG can take them away and let the nerve heal.

Dr. Conway isn't doing the TG approach on anybody; he has rejected the way it's done in Nantes, Houston and Phoenix, and is beginning to tell patients that he wants to learn it the way Antolak/Marvel/Shobeiri do it which is to use a TG incision but not remove all of the ligament tissue, sort of a partial decompression.

I think you have to decide on whether you prioritize the ligaments or not. If you do, you'll want no surgery, or the TIR, or a TG with partial decompression, or a TG with graft ligament replacements. If you don't, you'll want the TG as done in Nantes and Houston. You really have to decide what you believe about the ligaments (they're crucial vs. they're the whole problem) and proceed from there. Each doctor has his beliefs and you need to pick one who shares yours.

[Celeste]

I'll also go out on a limb here and say that Dr. Shobeiri is new to dealing with PNE patients who have to travel. I think what would have been best is if he had put off setting a date until he could go over the records, talk to Conway, whatever it takes to give a good feeling that surgery is called for. Either that, or set up a consult visit for everybody's peace of mind. That way nobody has to be on edge that the visit will happen but surgery will not.

[Karyn]

Thanks for your vote of confidence and support, Hermajesty! Means the world to me (as do YOU!)!
Hi there, Chris and welcome to HOPE! You've come to the right place for information, support and friendship!
Oh, boy! What happened with the DiVinci? Did Dr. Conway do the lap or are you travelling to see him for PN? Did you have the EMG there, too?
Well, like you, I joined this group (when it was pudendal.info) and read everything I could about other peoples stories and experiences. Initially, I was fully prepared to have TIR surgery with Dr. Conway. After all, it's the "least Invasive" approach to surgery and let's face it: Who wouldn't opt for least invasive when it comes to surgery? However, I began to notice, as you did, that a fair amount of Dr. Conways surgical patients were not only NOT better, but having redo surgery elsewhere. It would've been perfect for me to have surgery by Conway - I sincerely like and respect him! He's included in my in-network insurance! And the cherry on the top of cupcake was that he's only 20 freakin' minutes from where I live!!! So, you can imagine my horror when I began to read posts from his patients reporting unsuccessful surgeries. In a desperate plea, I sent out a post asking if there was ANYONE who could attest to having a successful surgery by Dr. Conway. I got several replies, but not ONE of them was a success story. I gave it a little more thought and posted another inquiry:
Could it be Dr. Conways skills as a surgeon or maybe it's the TIR approach, itself? Because now I'm becoming increasingly aware that it's not just Dr. Conways patients that are having redo's, but a lot (not all!!) of other TIR patients who went with other surgeons aren't doing so well, either. Other information that was important to me with helping me with my impression:
1. Dr. Conway is one of two doctors (unless Marvel has changed) who performs the TIR approach. Other US doctors do the modified TG approach. Please feel free to correct me if this isn't accurate!
2. People who are having redo's are having TG surgery to correct the TIR surgery. I'm not implying ALL and/or EVERYONE.
3. Dr. Conway has been to Arizona to observe Dr. Hibners technique.
4. During my last appointment with Dr. Conway, he informed me of his intention to train under Dr. Antolak in the near future.
5. This was the cincher: Also during my last visit with Dr. C, my mom asked him what his success rate was. He very comfortably replied that he didn't have
one. Something tells me that he realizes the approach may be "less invasive", but that doesn't mean equally effective.
That being said, the decision of surgery and it's approach is a very personal one. A huge benefit of this group is the ability to communicate with patients of these doctors. Based on the information I interpreted from the group, and the seriousness of the surgery, I decided I didn't want to chance a redo. I realize there are no guarentees with the TG, but the odds seemed better with that approach, to me.
I sincerely wish you the best, chris and hope you let us know how you're doing!
Warm regards,
Karyn

[Karyn]

Barging in to say, I don't think it's about going to Hibner to get a surgery corrected...it's about going have a TG surgery to completely decompress the nerve because the TIR does not completely decompress it. I think it may help some to some degree if the ligaments were not the problem...but if they are, then the TG can take them away and let the nerve heal.

Thank you for barging in, Celeste! Yes, I had meant to add that crucial piece of information. What I really should've said is, I'm uncomfortable with the TIR approach because of the lack of visualization of the nerve and limited access.

I'll also go out on a limb here and say that Dr. Shobeiri is new to dealing with PNE patients who have to travel. I think what would have been best is if he had put off setting a date until he could go over the records, talk to Conway, whatever it takes to give a good feeling that surgery is called for. Either that, or set up a consult visit for everybody's peace of mind. That way nobody has to be on edge that the visit will happen but surgery will not.

I agree 100%. I was informed that he has reviewed my records and he does have Dr. Conways info. So, I'm not sure why they would go through the surgery scheduling and then throw that out there. They could've been upfront by saying something like, "well, we'll do a consult but can't commit to booking surgery at this time" but that's not how it went down. I have to give them another call anyhow to find out about that 2 week follow-up. I'll bring this up. Thank you!
Warm regards,
Karyn

[A's Mommy]

Karyn,
What great news about finally hearing backfrom Shobeiri. I also applaud Dr. Conway for agreeing to your follow up care and considering that he has knowledge of PNE, I would say that it'd be probably in your best interest to not have to stay the extra three weeks or whatever in OK and instead go for the follow up with Conway. I think all they would do at your follow up is check your incision for infection, assess your symptoms, and monitor your pain and/or activity. Surely Dr. Conway could do all that. I think it is very gracious of him.

I also first considered the TIR as I believe I'm entrapped at Alcocks. However, I would hate to have had the TIR then realize I was entrapped higher up as well. When I had my phone consult with Dr Conway, he was kind, informative an optimistic that he could help me. However, I wasn't comfortable with his one stop shop offer for me. I know that ge offered it most likely to minimize costs for travel, etc., but I just didn't want to run up there, have EMGs or PNMLTs done, have nerve blocks, and then surgery all in one week.

Although some may disagree with what protocol my doctor, Dr Hibner, used for me (consult, fly back for Botox, now the need to fly back a third time for the surgery), at least this way I know that it wasn't just the muscle spasm creating the sx of PN and I clearly need surgery. It was rough, as you an read from my posts on going out there, the Botox flare period, etc., but I'm ok with it. Let me say this: Dr Hibner does not follow a strict regime of protocol for all patients. I know he treats each one individually based on their case history.

I want the TG approach because of the ability it gives the surgeon to decompress the entire nerve. I chose Dr Hibner because of the innovations he has made to the approach including the nerve wrap, On Q pump, platelet graft, and most importantly, the cadaveric gracillis tendon graft for pelvic stability. I have not yet met one PT or doctor for that matter that doesn't believe in the importance of the ST ligament for pelvic stability. I admire Shobeiri and Antolaks approach of going through the ST ligament and not severing it. I would say that would be my second choice if Phoenix wasn't an option for me.

I think I would want to know ahead of time if I were to fly out to OK that I was going to have the surgery. Karyn, you've done a lot. You most likely need the surgery. The only thing I could think of that would even make an iota of sense is that he may want to try Botox with you first but I don't know if he or Antolak use that in their practices. I do believe that he should be able to deduce from your records and history if you need the surgery before you go there. Unless he has some magic test that none of us know about, you should be at least given the peace that you will be operated on when you go out there.

Karyn, you are admirable, courageous, an encouragement and a gem on this forum. You deserve healing so much... We all do. We will get there.

To all... Keep the faith, do your research, ask questions even if they're the same ones over and over, and BELIEVE.

Sincerely with love,
A's Mommy

[pomegranate]

Karyn,

I wish you the best of luck! I'm a patient of Shobeiri's, and can tell you he is a compassionate man and and respected urogynecologist. He is new to PNE surgery, which I'm sure you know, so his staff isn't very accustomed yet to out of town patients. I unfortunately cannot give you much info regarding his surgery, as I am not currently pursuing that route.

Feel free to PM me and I'd be happy to help you with anything related to Oklahoma City and OU Medical Center, as I know both well.

Lauren

[Karyn]

Hi A's Mommy and Pomegranate!
Thank you so, so much for your support and well wishes! Jessica from Dr. Shobeiri's office left a message on my answering machine yesterday saying it was no problem for me to have the 2 week follow up with Dr. Conway. Whew! So, that's one down. I'm going to call both docs this morning. I'm going to ask if Dr. Conway can contact Dr. Shobeiri either by phone or email to discuss my case. I'd also like to find out if it's possible to have a phone consult with Dr. Shobeiri before January rolls around. Hopefully, this will increase my chances of the scheduled surgery!
Lauren - I will definitely take you up on your offer to educate me about OK and OU Medical Center. What's the weather like there in January???
Warm regards,
Karyn

ps - Chrisdag: I hope I didn't scare you off with my episode of diarrhea of the mouth yesterday!!!