Surgery with Shobeiri

[Chrisdag]

Thanks, Ali...I will look up more information about Dr. Hibner (he's in Arizona, right??) about decompression surgery. I think I may have Dr. Conway in NH do the mesh reduction surgery (to correct the first surgery I had, which caused my PN) and see if that helps. And then I'll consider the decompression surgery as it's such a scary and unknown thing. I'm curious to know how your consultation with Dr. Hibner goes...please keep me posted. All the best to you! Thanks for your thoughts!

[Karyn]

Update:
I'm keeping my consult appointment with Shobeiri next month but have cancelled the tentative surgery date. The stress was killing me! It's like trying to pull teeth getting information from his office. Originally, I was told I would be the hospital for one day. I then asked if I would be able to go home the day after my release date and the reply I got was "If everything goes well and there are no complications". I actally asked this question twice, while trying to make travel arrangements. Because it's getting down to the wire, I called a third time a couple of weeks ago to confirm that I would be able to go home a couple of days after surgery. The surgical coordinator told me she'd have to ask Dr. Shobeiri and get back to me. Two weeks later, she informs me that Dr. S said he would like me to hang around for a week after the surgery. Which, made more sense, BUT I couldn't have been clued in about that the other 2 times I called?
It's not just that. I don't feel like I have enough information about ANYTHING to see him on a Tuesday, (possibly) have surgery on Thursday and no details in advance. I work and those who are making this trip with me work. I can't tell my employer "oh, well I might be back on Wednesday or I might be back in 12 weeks". Nor do I want any part of scrambling while I'm out there trying to get stuff faxed to my employer, short term disability, etc ... I'd really rather have all those documents filled out in advance. And let's talk about the stress of being informed that Shobeiri doesn't speak with patients over the phone!!!
Is that even legal? Even trying to find out how long my office visit would be was stressful!
So, for you newcomers ... Please learn from my mistake! Do NOT try to consolidate your trip with a surgeon you've never met and is unwilling to speak with you over the phone!
Warm regards,
Karyn

[Griff522]

I think that's probably a good idea. What if you met him and you just didn't like him for some reason. I would want to feel extremely comfortable with the person that was going to do that surgery on me!

[Karyn]

Right you are, Griff! That was the purposed of the consult, but to just go ahead and do everything so quickly afterwards, with nothing in place and no one to answer questions doesn't make sense. I forgot to add in my above update, that I mailed him letter a week or so ago because I have some concerns and questions. Trying to give him the benefit of the doubt, I included a blurb in the letter about how I was informed by his office staff that he doesn't speak with patients over the phone. Maybe he isn't aware this is going on? I hope I do hear back from him, but I'm not holding my breath.

[A's Mommy]

Karyn,

I am hurting for you.

This is unreal. We PNE patients are dying enough in our pain then to have to die waiting for someone to get back to us.

You need relief and you need it fast, woman. I'm praying the right decision comes your way.

With love,

AM

[Celeste]

I'm sure it's a better situation if you're a local patient; satisfaction is surely higher. It doesn't sound like Dr. Shobeiri is truly set up to deal with the TRAVELING patient at this time. The fact that all of the staff told you something different says there's no program in place.

FWIW most workplaces know you can't know your exact dates on short term disablity exactly with a hospital stay, beforehand. With maternity leave, you could end up with a c-section, and with ANY surgery you can end up with complications that require a longer stay than planned. Most HR departments are on board with just taking your information and waiting on you to check in after your hospital stay; you will have paperwork that shows your times which you will have to turn in anyway, as well as whatever paperwork your doctor gives you on when you can return to work (which you get at a post op followup).

Obviously the programs that see the greater number of travelers have this all ironed out by now, so I'm not sure if it does any good to get upset over a program that's still in the single digits of PNE surgery. It's just a natural consequence of being one of the early people to go through there.

[river133]

AFTER 3 YEARS AND 20 DR.S .. PROLOTHERAPY, 6 NERVE BLOCKS, TREATED FOR IC DISEASE I AM ON MY WAY TO SURGERY WITH DR. ANTALOK. JAN 24TH. HE EXPLAINED TO ME THAT I WOULD HAVE INCISIONS ON EACHSIDE.. THAT HE GOES IN AND CUTS THE TENDONS DOWN LIKE A ZIPPER. FINDS THE NERVE AND WRAPS THE NERVE WITH A FILM WITH MEDICATION. iT TOOK 3 MONTHS OF TESTING BEFORE HE AGREED TO DO THE SURGERY.. I AM ALMOST AFRAID TO BE HOPEFUL tHIS GUY IS AMAZING... HE WOULD LOVE TO RETIRE BUT JUST CAN NOT SEEM TO STOP ANSWERING THE PHONE... I TRUST HIM IMPLICITILY . I WILL BE STAYING IN THE HOSP. FOR TWO NIGHTS. HE ALSO SAYS THAT THE AVERAGE OF PATIENT SCORE BECOME NORMAL BETWEEN 18 AND 24 MONTHS. I WILL BE DOING GLIDING EXCERICISES FOR 2 YEARS. I HAVE YET TO FIND OUT WHAT THAT MEANS... WE ARE SO INCREDIBELY GRATEFUL TO HAVE HIM IN MPLS.. WE ARE TWO HOURS AWAY FROM HIM.. I CAN NOT WAIT TO GET OFF OF THIS PAIN MEDICATION... TO FEEL LIKE A NORMAL HUMAN BEING AGAIN... GOD WILLING... ELLIE

[Amanda]

Karyn

I can feel your aprehension about travelling to see a surgeon and the lack of information given to you prior to this event.
As you ahve already written to this doctor, maybe you need to be extra vigilant in trying to get a phone consult or an email through so that you can allay your fears.
Having travelled many times to Nantes and Belgium for medical treatment I know how you feel, I had so many questions and little answers in advance however it was all made clear once I was there.....maybe you need to warn your employers in advance that as soon as you get the info you will let them know.
I think we need to be aware that these doctors are concentrating on making their patients feel better through surgery and that the nitty gritty things are not so important...we need to educate them into advising patients in advance so as to alleviate these fears.
I wish you the best of luck

[Violet M]

Karyn, I can understand this must be extremely frustrating. Bautrant spoke with me by phone from Europe! before I traveled all the way out there and it was very reassuring, but each physician is different. Not all of the PN physicians will talk to you by phone but that does not mean they aren't good at what they do. Ultimately, it's the surgical skill that counts. I wish you all the best and hope that you will be pleasantly surprised after you get there.

River, maybe you would like to make your post about Dr. Antolak in a new thread so that people who are easily confused, like myself , won't be trying to discuss 2 topics at once. I am happy that you have found a physician who you trust and wish you all the best with your surgery.

[Karyn]

Thanks very much for the support! I can't tell you how relieved I feel since cancelling the surgery! It was just too much to go for a consultation with someone I've never met, try to absorb everything and then, BANG! Surgery!!! I'm really hoping to be pleasantly surprised by his knowledge and skills, too. If not, I'll move on.
Warmest regards,
Karyn