Hi everyone still out there suffering with pelvic pain. Let me start by saying "I'm so sorry your hurting". I cannot actually feel your pain but, unfortunately, I can feel my own. I just returned from Phoenix, AZ from my consultation with Dr. Michael Hibner. I met with him and his staff at St. Joseph's Dignity Health. I was so excited and nervous to finally make this journey. I have been dealing with chronic left sided pelvic pain for years and had way too many surgeries, and therapies, and injections to try and relieve my pain only to end up with more pain. I have been previously Diagnosed with Pudendal Neuralgia, Piriformis Syndrome, and Genito-Femoral Neuralgia. As most of you have probably experienced, It has been a "You can't make this Sh** Up" Medical and Emotional Roller Coaster for me and my family. I could write a book and maybe I will...lol.
We got a decent package deal for our flight and hotel and used Uber to get around town.The drivers were there within minutes to pick us up, and being dropped off at the door everywhere was very helpful. I'm so glad we didn't decide to rent a car because we are not experienced in driving in 8 lane heavy traffic and had never been to Phoenix. We stayed at the Embassy Suite Hilton which was an absolutely beautiful atrium building with a superb complimentary breakfast. It was a few blocks down the road from the hospital in a business district and we felt very safe there. The mountain views from everywhere in Phoenix were a site to see.
Anyway, it is a small, but nice, hospital that was fairly easy to navigate. My first appointment was for an MRI. From the very beginning i was treated by a kind and helpful staff. The radiology tech was kind and knowledgeable and made me feel at ease (even though he was a man, i'm sure you ladies know what i mean as it is a very private area of your body and can be somewhat embarrassing and uncomfortable). He clearly explained he was performing a special MRI for Dr. Hibner and instructed me on how to do the valsalva and keigel pelvic techniques and made sure i understood which muscles to activate when i was prompted to due so during the scan. The next day, I had 3 appts. scheduled at Dr. Hibners office. I was greeted by the kindest office clerk I've ever met named Krista. She was very helpful and set me up with a patient portal account so i could access all my records online. I was promptly directed to my first appointment with Lauren Hill, Pelvic Physical Therapist. She thoroughly reviewed all of my medical records with me as i was able to have all my records and patient package questionnaire information completed and sent in ahead of time. She actually listened as i described all of my symptoms. I never felt rushed and actually felt bad taking up so much of her time. I don't even know how long i was in there as time almost stood still. She made me feel so comfortable as she guided me through details of very private pain that is embarrassing to discuss. There was absolutely no question in my mind that she actually completely reviewed all of my medical history. She constantly reassured me as i became tearful many times as we talked throughout our meeting. She never made me feel like i was just a complaining hypochondriac and she had one hand on the door (I'm sure you all know what i mean...after so many appointments being treated like that) Some tears were from embarrassment but most were from feeling like i was finally understood and listened to by someone who was clearly experienced with my condition and she assured me there was, unfortunately, many other patients that experience my exact symptoms. Even i was surprised that i was crying i was just so happy to be treated like somebody understood and knew what i was talking about. Anyway, She examined my pelvic muscles externally and internally and explained everything as she was doing it. She was very gentle. Afterward she explained to me (with a detailed model of the pelvis i could actually hold in my hand) every area where i feel pain the names of the muscles and nerves involved and could actually feel the area where i had scarring from mesh placement. She explained to me exactly what her treatment recommendations would be for me and that she would be updating the next two doctors i would see with my information. I learned more about my own body and issues at this appointment than i had ever learned before. After years of doctors, specialists, surgeries, pelvic floor and vaginal therapies, Someone is finally explaining to me, in a way i can understand, what is going on with my body. I knew i was finally in the right place and actually felt a deep sense of hope i had not felt in years.
My second appt. was with Dr. Banks, a fellowship doctor working with Dr. Hibner. Again, I was astonished that she too had actually thoroughly reviewed my records and discussed many things about my surgeries and pain issues and was updated on all the information from my first appointment with the pelvic therapist. I can't believe how comfortable i was while discussing this, like i was talking about it with my sister. She prescribed me a compounded medication suppository to help relax me, and my pelvic floor muscles, and help with pain and told me it was being sent downstairs to the hospital pharmacy and i could pick it up there when i was finished. I was not treated like i was just having "drug seeking behavior" and I must have mental issues at all. I haven't been using anything to relieve my symptoms in a long time because i was always made to feel degraded like some kind of heroin addict because i was begging for any help at all. The Pain management doctors i was pushed off on at Cleveland Clinic were unwilling to help me with pain unless i was terminal and actually told me so. Fortunately, I'm not, but i was still in chronic pain. My shout out to doctors everywhere (not that they will be reading this)...Every patient is not a drug addict. I have never even seen heroin in my life and i'm 50 years old and have had multiple surgeries and i live in chronic pain and have never went out in the streets to get heroin and crack or whatever they think...people are actually suffering with pain (and I know many are way worse than me) and we all deserve to be treated with kindness, dignity, and compassion. I once lived a fully functional life and worked full time for 25 years and raised children and ran a household and i very much enjoyed singing as a hobby. This could happen to anyone...including them. Just because you are complaining of chronic pain doesn't mean it's all in your head. If that were true, all the people who unfortunately suffer from mental health issues would be complaining about pain in there a** and pelvic area wouldn't they! Sorry, I just needed to get that off my chest. Anyway, Dr. Banks gave me a starting plan to perform another pudendal nerve block in conjunction with 10 botox injections to my left vaginal wall (as just thinking of that made me want to run for the hills she assured me i would be sedated...thank God) and i should start pelvic floor therapy with a reputable pelvic therapist in my area. I wish i could stay in phoenix and get therapy from Lauren but i surely cant afford to do that and i have children at home. When i find one they will send instructions on exactly what treatment they recommend. She was very knowledgeable and explained things to me in a way i could understand, what her recommendations were, and that she would share this information with Dr. Hibner. She sincerely actually hugged me and assured me they were going to try and help me. At this point I had a plan i actually believed may help me get relief from chronic pain.
My third and final appointment was with Dr. Hibner. He was very personable and kind. We discussed the beautiful mountain views from his office and he has a way, as they all did, of making you feel at ease. He informed me he was completely updated on my medical history and information from my prior appointments. We briefly discussed my condition, and my treatment plan (yes, i now actually had a plan) and i was to see him tomorrow for my first vaginal botox treatment along with a pudendal nerve block and he and Dr. Banks would both be there. He also hugged me and assured me they were going to try to help me.
I felt like i was dropped down in another planet. I cannot believe what a relief it was to finally have knowledgeable people explaining things to me and listening to me and be treated with kindness, dignity and respect. I was still in pain but i felt better already (at least mentally). Like a weight was lifted off my shoulders and i was actually where i needed to be for the first time since this pain journey began...I had hope...the kind you can't fake.
Unfortunately, when the scheduler came in the room i was informed that they were unable to get me in the next day and i would now have to return home and come back to Phoenix when my treatment was able to be scheduled. I was very disappointed by that and asked to see Dr. Hibner again. I was upset and disappointed. They told me he was with patients. I told them i would wait. A few minutes later Dr. Hibner came back into the room and explained things to me and answered more questions for me.
My only complaint, which is major but no fault of theirs, is that I have two insurance plans and it looks look my treatments wont be covered by either. And neither cover compounded medicine either (of course). Anthem is my primary and medicare is now my secondary. I have already drained my savings and 401k due to medical bills to get to this point and i still have many unpaid medical bills. We pay high insurance premiums, with high co-pays and deductibles and i pay for medicare plan. I was afraid to drop Anthem because I need my treatment to be covered. I don't know how I will afford going back to Phoenix, not to mention paying for my treatments. If anyone is still reading this and has any advise on getting insurance to cover this I would appreciate hearing from you.
It looks like i have written a book..lol. I finally had good news to share and I finally have a plan and Hope. I don't know how i'm going to pay for anything but i have hope and i want to share it with everyone. I want to shout it from the rooftop. I want to give a shout out to Violet, who is a sight moderator, who probably doesn't remember me (and thats ok) but she talked to me a long time ago about my condition and recommended Dr. Hibner. I can't thank you enough. I pray we will all get some relief from chronic pain. If you made it to the end of my story, thank you for reading. Writing it was very therapeutic for me. If i can bring even one person a shred of hope, it was worth it. I'm just a regular gal from small town Niles, Ohio, but today i feel like a Queen. Any advice on the therapist recommendation in my area, or financial advise to make this dream a reality would be appreciated. If...i mean when...i find a way to finally address this pain in my *** i will be sure to pass it on in hopes of helping all of you.Thank you for allowing me to share my journey.
My recent evaluation with Dr. Hibner
Re: My recent evaluation with Dr. Hibner
Hi Aunt Netty,
Wow, that was a very informative post about your trip to Phoenix. Thanks for sharing that.
My suggestion for finding a PT would be to call some of the other PT's in Ohio and see if they know anyone in your area. You can see the list at the following link: http://www.pudendalhope.info/node/63#OH
Or you could check with some of the well-known PT's on that list who train other PT's, like Stephanie Prendergast, Tracy Sher, or Hollis Herman, to see if they know anyone in your area who has taken their seminar on treating PN patients.
That is hugely disappointing that the treatments are not covered by your insurance. You could try going through the appeals process but that could be a lot of work. Also, check with nyt on this forum because she has gotten treatments from Dr. Hibner and she might be able to give you some advice on getting insurance to cover the treatments.
Violet
Wow, that was a very informative post about your trip to Phoenix. Thanks for sharing that.
My suggestion for finding a PT would be to call some of the other PT's in Ohio and see if they know anyone in your area. You can see the list at the following link: http://www.pudendalhope.info/node/63#OH
Or you could check with some of the well-known PT's on that list who train other PT's, like Stephanie Prendergast, Tracy Sher, or Hollis Herman, to see if they know anyone in your area who has taken their seminar on treating PN patients.
That is hugely disappointing that the treatments are not covered by your insurance. You could try going through the appeals process but that could be a lot of work. Also, check with nyt on this forum because she has gotten treatments from Dr. Hibner and she might be able to give you some advice on getting insurance to cover the treatments.
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.
Re: My recent evaluation with Dr. Hibner
Hi Violet,
Thanks for your reply. It was very informative. I was on a role. Thank you for recommending Dr. Hibner. I know my post was long but i was inspired by Hope. I am so greatful. For the first time i have good news and I have a plan. I have Hope. I still cannot believe how kind and knowledgeable the entire staff was at Dr. Hibner. Just having them explain things to me in a way i could understand makes me feel better. Violet, I wish i could hug you. I wish i had taken your advise a long time ago. I guess i just couldn't see how going all the way across the country would do anything but bring me more bills. Looks like i have some homework to do. Thanks for the tips.
Thanks for your reply. It was very informative. I was on a role. Thank you for recommending Dr. Hibner. I know my post was long but i was inspired by Hope. I am so greatful. For the first time i have good news and I have a plan. I have Hope. I still cannot believe how kind and knowledgeable the entire staff was at Dr. Hibner. Just having them explain things to me in a way i could understand makes me feel better. Violet, I wish i could hug you. I wish i had taken your advise a long time ago. I guess i just couldn't see how going all the way across the country would do anything but bring me more bills. Looks like i have some homework to do. Thanks for the tips.
Re: My recent evaluation with Dr. Hibner
HI AuntNetty,
What a lovely post. I'm feeling joyful and hopeful for you! And I'm so sorry that you've had such terrible treatment in the past. I had surgery with Hibner in December (and stayed at the same hotel---we stayed there in 2016 too---love it), and I think it was successful. My pain is already lower than pre-surgery levels. So, I agree with you that he and his team know what they're doing.
I'm not sure what to suggest with the insurance issue. It's awful that's not covered! I ran into problems getting a lumbar MRI covered (with cigna) and did get them to cover it eventually, but that is something they will cover if you fulfill certain criteria (I just had to have my pcp send them more info). I think the insurance companies consider botox experimental so they won't cover it. If you do appeal it, be sure to ask them what they need to see to change their mind so you know what you need to include.
April
What a lovely post. I'm feeling joyful and hopeful for you! And I'm so sorry that you've had such terrible treatment in the past. I had surgery with Hibner in December (and stayed at the same hotel---we stayed there in 2016 too---love it), and I think it was successful. My pain is already lower than pre-surgery levels. So, I agree with you that he and his team know what they're doing.
I'm not sure what to suggest with the insurance issue. It's awful that's not covered! I ran into problems getting a lumbar MRI covered (with cigna) and did get them to cover it eventually, but that is something they will cover if you fulfill certain criteria (I just had to have my pcp send them more info). I think the insurance companies consider botox experimental so they won't cover it. If you do appeal it, be sure to ask them what they need to see to change their mind so you know what you need to include.
April
Re: My recent evaluation with Dr. Hibner
Hi April,
Thank you for sharing a success story about Dr. Hibner with me. It is exactly what i needed to hear. I know my post was long, so thanks for reading it. Trying to remain hopeful and see if insurance denies it again.
Thank you for sharing a success story about Dr. Hibner with me. It is exactly what i needed to hear. I know my post was long, so thanks for reading it. Trying to remain hopeful and see if insurance denies it again.
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Still fullofhope
- Posts: 11
- Joined: Sat Jun 09, 2018 1:47 pm
Re: My recent evaluation with Dr. Hibner
Hi Aunt Netty.
I feel so happy you finally see hope in the battle against this chronic pain and sorry for the insurance problem. Hope it could be sorted out and you can start the treatments soon. I am thinking of booking an appointment with dr. Hibner and your post gives me so much hope! I have a question, you mentioned you did a special MRI there. Was it possible to reveal which nerves are involved with the pain in the pelvic area? Thanks!
Yvonne
I feel so happy you finally see hope in the battle against this chronic pain and sorry for the insurance problem. Hope it could be sorted out and you can start the treatments soon. I am thinking of booking an appointment with dr. Hibner and your post gives me so much hope! I have a question, you mentioned you did a special MRI there. Was it possible to reveal which nerves are involved with the pain in the pelvic area? Thanks!
Yvonne
Re: My recent evaluation with Dr. Hibner
Hi Yvonne,Still fullofhope wrote:Hi Aunt Netty.
I feel so happy you finally see hope in the battle against this chronic pain and sorry for the insurance problem. Hope it could be sorted out and you can start the treatments soon. I am thinking of booking an appointment with dr. Hibner and your post gives me so much hope! I have a question, you mentioned you did a special MRI there. Was it possible to reveal which nerves are involved with the pain in the pelvic area? Thanks!
Yvonne
The special MRI was scanned also when doing keigel tightening and baring down (valsalva). They are not really able to identify the nerves but rule out other causes they can see or enlarged vessels near pudendal area. Hibner told me the MRI does not confirm or rule out pudendal entrapment/neuralgia. To my knowledge, Dr. Fillers MRN doesn't either. I'm certainly no medical expert though.
Re: My recent evaluation with Dr. Hibner
Hello,
Just wanted to update my journey...this time i'll try to keep it short...lol
Scheduled for surgery with Dr. Hibner April 15th. Looks like they are going to address as much as they can in one visit. Thankful for that as i can't afford to keep flying across the country. My pain may be cured soon. Scared but hopeful. They do agree pain is in pudendal area and possibly pne, but i only have left sided pain (left leg, left vaginal wall, left rectum, left lower abdominal/left groin/left sit bone area/increased pain with sitting and too much walking) Don't understand why some of these things are bilateral as i have no right pain??? Plan is as follows:
Started baclo/diaz/ketamine suppositories(which help more than anything has so far..yeah)
Starting local Pelvic Therapy (again, with new therapist this time) for pudendal pain and spasms in alcocks canal, obturator internus, psoas muscle)
Scheduled surgery on 15th for the following:
1)Robotic assisted laparoscopic adhesiolysis (had several prior surgeries removing adhesions from sigmoid and distending colon and mesh placed there)
2)Bilateral salpingo-oophorectomy (had vag hysterectomy years ago with cytocele/rectocele repair) guess they are taking those just in case and due to my age,
but kind confused..could this be causing pain? remember i only have left pain so why mess with right..but I'm no doctor
3)Left ilioinguinal neurectomy (had inguinal neuroma's removed before, as i have mesh from inguinal hernia and mesh from femoral hernia. This is what scares me the most, because last time (with local general surgeon) "they cut two nerves they could not identify in hopes to alleviate my pain" I awoke with same old symptoms and new lower abdominal symptoms like i have to pee 24/7 only on left side and cliteral numbness and deep centered pressure with peeing (not burning...as i can't actually feel myself pee now.. and zapping pain in left sit bone area and more issues walking
4) Botox injections into pelvic floor muscles (into left vaginal wall, left obturator internus, left psoas) haven't tried this yet.
5)Bilateral pudendal nerve block (only have pain on left side?? have had 2 pudendal blocks before along with many others with no relief yet)
6)Bladder hydrodistention x6min (don't know what this means...maybe because i have urinary urgency, incomplete emptying, occasional accidents...ps I also have occasional bowel accidents
Ironically, my MRI shows i have a moderate cystocele/mild rectocele/mild peritoneocele. I had cystocele rectocele repair with my hysterectomy...which more than likely started this pudendal nightmare...so how could i still have cysto/recto and now a new cele? Did it not hold?? was it never really fixed??
Well, this is my plan. Any thoughts?? Any warnings as to what kind of pain to expect or things to watch for?? I don't know what I'm doing...as you may have figured out I'm not medically educated..but I do know i want to get rid of this pain. Bring it on Dr. Hibner...lets do this!
Please advise if you can and pray for me as i will be praying for all of us too.
Aunt Netty
Just wanted to update my journey...this time i'll try to keep it short...lol
Scheduled for surgery with Dr. Hibner April 15th. Looks like they are going to address as much as they can in one visit. Thankful for that as i can't afford to keep flying across the country. My pain may be cured soon. Scared but hopeful. They do agree pain is in pudendal area and possibly pne, but i only have left sided pain (left leg, left vaginal wall, left rectum, left lower abdominal/left groin/left sit bone area/increased pain with sitting and too much walking) Don't understand why some of these things are bilateral as i have no right pain??? Plan is as follows:
Started baclo/diaz/ketamine suppositories(which help more than anything has so far..yeah)
Starting local Pelvic Therapy (again, with new therapist this time) for pudendal pain and spasms in alcocks canal, obturator internus, psoas muscle)
Scheduled surgery on 15th for the following:
1)Robotic assisted laparoscopic adhesiolysis (had several prior surgeries removing adhesions from sigmoid and distending colon and mesh placed there)
2)Bilateral salpingo-oophorectomy (had vag hysterectomy years ago with cytocele/rectocele repair) guess they are taking those just in case and due to my age,
but kind confused..could this be causing pain? remember i only have left pain so why mess with right..but I'm no doctor
3)Left ilioinguinal neurectomy (had inguinal neuroma's removed before, as i have mesh from inguinal hernia and mesh from femoral hernia. This is what scares me the most, because last time (with local general surgeon) "they cut two nerves they could not identify in hopes to alleviate my pain" I awoke with same old symptoms and new lower abdominal symptoms like i have to pee 24/7 only on left side and cliteral numbness and deep centered pressure with peeing (not burning...as i can't actually feel myself pee now.. and zapping pain in left sit bone area and more issues walking
4) Botox injections into pelvic floor muscles (into left vaginal wall, left obturator internus, left psoas) haven't tried this yet.
5)Bilateral pudendal nerve block (only have pain on left side?? have had 2 pudendal blocks before along with many others with no relief yet)
6)Bladder hydrodistention x6min (don't know what this means...maybe because i have urinary urgency, incomplete emptying, occasional accidents...ps I also have occasional bowel accidents
Ironically, my MRI shows i have a moderate cystocele/mild rectocele/mild peritoneocele. I had cystocele rectocele repair with my hysterectomy...which more than likely started this pudendal nightmare...so how could i still have cysto/recto and now a new cele? Did it not hold?? was it never really fixed??
Well, this is my plan. Any thoughts?? Any warnings as to what kind of pain to expect or things to watch for?? I don't know what I'm doing...as you may have figured out I'm not medically educated..but I do know i want to get rid of this pain. Bring it on Dr. Hibner...lets do this!
Please advise if you can and pray for me as i will be praying for all of us too.
Aunt Netty
Re: My recent evaluation with Dr. Hibner
I have vaginal and rectal Prolaspe and he said to leave it alone or I would be worse
Good luck
I had 2 decompression surgeries and NO relief and re entrapped with scar tissue. Very upsetting.
Good luck
I had 2 decompression surgeries and NO relief and re entrapped with scar tissue. Very upsetting.
Re: My recent evaluation with Dr. Hibner
Dear Jaxi,
OMG. That sucks. I am so sorry to hear that. As my surgery date gets closer, I'm getting scared. My husband doesn't understand that...of course.
Every surgery i had to fix original problem made me worse, so of course i'm scared of ending up worse. Uggh. Glad to know someone understands that.
Not updated on your story, sorry, but i will look into it. So what are you doing to control pain and symptoms now?? Do you even have a new plan? Or are you back to just try to accept it i guess?? Honestly, I wish we would all get better.
OMG. That sucks. I am so sorry to hear that. As my surgery date gets closer, I'm getting scared. My husband doesn't understand that...of course.
Every surgery i had to fix original problem made me worse, so of course i'm scared of ending up worse. Uggh. Glad to know someone understands that.
Not updated on your story, sorry, but i will look into it. So what are you doing to control pain and symptoms now?? Do you even have a new plan? Or are you back to just try to accept it i guess?? Honestly, I wish we would all get better.