Surgery with Dr. Hibner on 11/01/10– Initial Report from RR

[RJR]

Hello all,
Am 22 days post-op, R-side TG Decompression with Dr. Hibner on 1 November ‘10...and below captures my experience, progress, and lessons learned. At the bottom of this post is a summary of my personal work-up and also the factors I considered to make the decision to have surgery. I have posted this in both the Case Updates and Surgery sections, but going forward will update my progress in Case Updates.
RR

Surgery prep - is the Friday before the Monday surgery. I met with Lisa Wadsworth, Dr Hibner’s PA, who covered in detail Dr Hibner’s surgery protocol, risks, and outcomes. Having met with Dr Hibner several times prior, I was familiar with his procedure…so Lisa focused on prep – i.e., stop certain meds (NSAIDS), clear liquid diet on Sunday, nothing to drink or eat the morning of surgery. The next stop was to get pre-surgery blood work done, and to receive additional surgery prep instructions, including a bottle of surgical soap to shower with Saturday and Sunday, and to use 2 Fleets the morning of surgery. Total time on Friday at St Joseph’s = 3 hours.

Surgery (1 November ‘10) – I arrived at 0530 for pre-op, IV, etc. Dr Hibner arrived at 0700 with his chief resident, and also with 3-4 other observing interns. Dr Hibner asked if I had any questions, and then he once again stated TG surgery risks and outcomes – same as when I first him in 2009. He was quite serious about not overstating outcomes, and stuck to the same outcome stats ubiquitous in TIPNA. He then autographed my right thigh, verifying with me the surgical side, shook my hand, and departed to the OR. The anesthesiologist, Dr Lee, and the surgery nurse then arrived to put me under.

Procedure Summary (surgery report is much more detailed) - Right Pudendal neurolysis with transposition of the nerve; use of activated platelet plasma rich matrix graft; repair of the sacrotuberous ligament with gracilis tendon; Botox injection into pelvic floor muscles and O.I.; On-Q pain pump installation; and putting the wound V.A.C on the closed skin incision.

Surgical Findings - Dr Hibner did find that my nerve was clearly compressed/trapped in the scarred and deformed sacrotuberous ligament…he also found some narrowing at the entrance of Alcock’s canal, and noted a dilated vein superior to the nerve. He noted in the surgery report that the entire nerve was freed up from all the remaining adhesions. Talking to me the day after surgery, he was hopeful I likely would benefit from the surgery because the entrapment was “as clear as I’ve seen, and now the nerve is free.” But true to form, he made no guarantees on my recovery and stated typical outcomes we all know too well on the forums. Prior to freeing the nerve, Dr Hibner took electrical measurements using the NIM monitor…he is apparently doing this with his current string of patients as part of a study, comparing readings vs outcomes.

MRI Validated by Surgical Findings - Dr. Hibner's surgical findings were "as-described and predicted" by Dr Potter's Pudendal MRI. He called Dr. Potter after my surgery, and they agreed to do research together…and to include Dr Olga Kalinkin, Dr Hibner’s radiologist at St Joseph's.

Note 1: I asked Dr Hibner if he changed/altered his procedure in light of the MRI. He said No! Although my case it yielded true-positive results, Dr Hibner is concerned about false-negatives. He has no plans in the immediate future to modify based on MRI findings. There is much to learn.

Note 2: Dr Hibner has also queued up Dr Kalinkin to watch several of his upcoming TG surgeries, so that she can better visualize and interpret future pelvic MRI’s, assessing Pudendal nerve issues.

Post-op Experience - My experience post op has been outstanding. Released from the hospital on day 2, I only have positive things to say about the St Joseph’s nurses and the care and comfort they provided me. I chose to stay and recup in Phoenix for 3.5 weeks, departing on the 24th. I’ve seen Dr Hibner 4 times post-op. And have seen his PA, Lisa, 4 times as well for dressing changes, wound V.A.C removal, On-Q pain pump adjustments, Q&A. Dr Hibner’s office manager, Patti, has been very accommodating in arranging these appointments…she is very caring and responsive. Also, Dr Hibner allowed me to burn a DVD copy of the video made during my surgery – it is several hours long, and I don’t think I’ll be winning any Academy Awards…

The wound V.A.C (like wearing a thin Frisbee on your butt) was removed on day 4 by Lisa. She was amazed at how good the incision looked. And she cleared me for showers…yea!

For those that may wonder, it was not until day 6 that I had a movement…just kept taking the prescribed Colace, eating fiber, and drinking lots of water. It turned out to be a non-event. I am a venti-size guy, 6'1", 195lbs.

Am following post-op guidelines to be as pain-free as possible during the first 4 months of recovery to maximize chance of long-term success. Minimizing pain during this time allows the damaged nerve to regenerate and heal. A lot of walking, progressing in distance each day to minimize scar tissue and hasten recovery. Am restarting PF PT in early January.

Like many others on this forum, I find Dr Hibner to be an exceptional surgeon: direct, honest, compassionate, and skilled. I like his open kimono style, providing me the surgery report and DVD video…and that he is a clinical instructor, with a strong desire to innovate and cure. During my last meeting with Dr Hibner, I offered myself as a follow-up patient for his study of surgery outcomes, and he readily accepted.

Why am I still in Phoenix and not back home in Wash DC area? Dr James Campbell, neurologist/neurosurgeon at Johns Hopkins, who has previously done the TG procedure, strongly recommended that I stay to ensure the incision healed, no infections, and for access for any complications. IMHO we patients are too quick to leave after surgery, be it Houston or Phoenix. My experience shows post-op care is there for the asking.

Pain – The On-Q Marcaine pain pump does all but eliminate the nerve pain and came out at day 12, but its delivery to the nerve was reduced from days 7-12 due to a leak out of another tunneling puncture. Lisa did a great job trying to plug the leak and clear out the line at days 5 and 7, but the leak persisted. I did notice a difference in pain sensation as the pump effectiveness diminished (days 7-12), and again once we removed the pump.

By day 7, I weened myself off of Oxycodone...and have not had anything since for pain, not even Advil/Tylenol…I want to get a good sense of my pain unmasked...only taking Lyrica. My pain quality 22 days post-op…the familiar old burning aspect has diminished greatly, and most of what I am feeling are my PF muscles, and also some numbness. The PF muscles tighten up during the course of each day, causing some discomfort mostly in the exact area I experienced before surgery. I walked too much on days 12 and 14, causing flare-ups, but again it seems more muscle than nerve. I pray this trend continues, but the real test will be increasing my sitting in the coming weeks. But it is much too early to know what my outcome will be. That is the ultimate measure of wherever you go. But I am hopeful for now.

Accommodations in Phoenix – Called the hospital concierge (via St Joseph’s website) and received quick and very helpful lodging advice, ie a list of nearby hotels that gave a St Joseph’s discount. Prying the concierge for her personal reco yielded the Holiday Inn on Osborn, about 0.5 mile easy trek from the hospital…just renovated. After staying here for the last 4 weeks, it turned out to be a great choice for me. Reservations offered up a suite for just $79/night: spacious, clean, updated, 2 rooms, 2 HD TVs, free wifi, refrigerator, and microwave. The hand rails around the bathroom, and walk-in shower, were most helpful post-surgery. St Joseph’s offers a free transport service hospital-hotel. And a light rail train stop is 1 block away…it is a 20+ mile metro, linking much of Phoenix at the cost of $3.50/day unlimited.

Summary of Personal Work-up (2008 – Present)
Background - Distance cyclist till pain onset during a specific ride on 6 Apr ’08. Initial pain in mid to lower back, but progressed to include PF spasms upon lengthy sitting. No relief from extensive Lumbar PT and 10 epidurals (May - Dec 2008). Frustrated, I studied dermatomes vs location of my pain and realized it was not lumbar, but from S2,3,4. This led me to the Pudendal nerve, and then to TIPNA (Feb ’09), which firmed my path forward. Formally diagnosed with PN after formal work-up in Houston via their protocol, examined by Dr Ansell, and offered the surgery. My overall experience in Houston was good.

Philosophy Check – After reading everything I could about PNE, including the publications by Robert, Popeney, and others, it was apparent there was no single gold standard diagnostic test…that surgery outcomes were mixed, and that solid peer-reviewed data-rich studies were few, if any. Concerned and new to all this, I sought to find local, well-regarded (i.e., by their peers) physicians to provide second opinions and serve as sounding boards as I moved down the PN diagnostic and treatment path. A trust, but verify, approach…that also borrows from the Greek proverb, ask for advice from experts, but do what you think is best.

After PN diagnosis in Houston (2 trips), and after my consults with Dr Hibner and his PT, I provided each DC physician (below) a copy of my history, symptoms, all test results and work-up, and also a summary of the baseline TG procedure (a ppt briefing from Dr Renney), and also as performed with modifications by Dr Hibner (a ppt briefing from Dr Hibner). Each digested my clinical history, performed a physical exam, and then Q&A. I was grateful that each took their time with me, averaging 1.5 hour each visit. Only one was a PN-savvy physician (Campbell), but that was fine, as I also wanted external viewpoints. I tried to span most of the relevant domains: Neurosurgery, Neurology, Orthopedic Surgery, Pain Management. Missing were Urology/Gynecology.

My local DC team and their main points and opinions:

-Dr James Campbell, retired Neurosurgeon still practicing Neurologist/Pain Management at Johns Hopkins, who previously performed the TG procedure: 1) Stated that TG surgery is not a technically difficult procedure as compared to brain or spine surgeries. The complexity is the location in pelvis and access to the nerve, 2) Two years of pain and conservative path is long enough and you meet the Nantes Criteria…Lyrica is not a lifelong med to take if you need your “mental A game” for work…go for the surgery, 3) Biggest concern was incision healing/infection, so stay until clear. 4) Felt that a surgeon who performs a procedure at least 25 times/year would generally be considered competent and practiced in that procedure. [Note: Dr Campbell trained Dr Richard Marvel (Surgical Gyn) in the TG procedure]

-Dr Perry Richardson, Director of Clinical Neurology at George Washington University Hospital. He is board certified in Neurology, Electrodiagnostic Medicine, Clinical Neurophysiology, Pain Medicine...and with Clinical Interests in Peripheral Neuropathy and Pain Management: 1) Felt surgery was an appropriate next step for me, 2) Thought the surgery modifications by Dr Hibner were logical steps in evolving the procedure and was particularly enthused about pain pump and sensitization.

-Dr Stephen Saddler, Clinical Instructor of the Georgetown University School of Medicine. Board Certified Orthopedic Surgeon. Subspecialty Sports Medicine. Dr Saddler has been my physician for 5 years and knows me well…my advocate: 1) Felt surgery was a logical next step for me, 2) Thought pelvic instability due to cut ligament would be unlikely, but could happen [This seems consistent with TIPNA postings…i.e., most don’t, a few do]. Repair using donor tendon is tried and true method (effective), has no down-side, and would be insurance against instability. 3) Felt that a surgeon who performs a procedure at least 30 times/year would generally be considered competent and practiced in that procedure.

Factors that Influenced My Decision to go for Surgery
-2.5 years of pain is enough…I completed entire conservative path…unable to lower pain floor. Research on the subject, via TIPNA et alia, my gut feel based on pain characteristics, and the thumbs up from my local physician team…all gave me the context to elect surgery.
-Ability to work, commute, and exercise is limited….daily sit time limit < 1.5 hours with special pad
-Compensating for not sitting is negatively affecting other joints (L knee, both hips and arms, neck)
-Quality of Life Deteriorating
-Meet Nantes Criteria for PN (All of the essential and most of the complementary criteria)
-High field MRI of bilateral Pudendal nerve showed compressions at R STL and in R Alcock’s Canal
-PT findings over 12 months that my PF muscles ~ OK, pointing to root cause = Pudendal nerve
-Lyrica and opiate side effects over long term
-Pain generally worsens over time => Central Sensitization => best to fix it now

[Emily B]

Wow! Thanks for that post RJR! It included the organized detail that I appreciate so much. Extremely valuable for those of us who are considering surgery. Thanks so much for taking the time. Looking forward to hearing more as you heal and progress.

Emily B.

[AliPasha1]

Hi RJR,
Excellent Surgical Report!It's very detailed,informative,methodical and very impressive indeed.
I wish you a very speedy and painless recovery and hopefully this PNE nightmare can be a thing of the past.


Warmest Regards,
Ali

[ezer]

Great report RJR. I think the clarity and the precision of your post is also a proof that you are doing very well post op. No pain medication! That is fantastic.

[nyt]

RJR, your detailed report is extremely informative and helpful for making decisions and what to plan on. I will say though my experience at the hospital was not very good. I had a couple of really good nurses but a couple of nurses that if I didn't have the knowledge I have I would have had more problems than what I did. For example, I had an epidural in and one of the night nurses wanted to get me out of bed to walk! I also developed lidocaine toxicity from the OnQ pain pump plus the lidocaine epidural and the residents had no idea that was my problem, I knew that was my problem but I was too sick to fight with them. I expressed my displeasure to Dr. Hibner how I was treated by the residents and how it all played out with what they did, he was also unhappy with the decisions the residents made ie my epidural was pulled and they gave me IV ativan which knocked me out instead of just clamping the pain pumps to my legs and turning down the epidural for a few hours. Shortened my stay by 3 days. Also, no one ever came in when the oxygen saturation machine was beeping because I couldn't keep my O2 sat above 94% nor when the IV machine kept beeping. I had to call them every time. The night nurse wanted to drop the oxygen saturation machine setting down to 88% and I told her not to do that and explained the O2 sat curve to her and told her not to set it below 92%. Come to find out I had developed a small pleural effusion which they found on Xray when I was so sick with the lidocaine toxicity. I know all the other posts individuals have had great experiences at the hospital but mine was not. If it was not for the great care of Dr. Hibner I would not consider going back for the pudendal surgery at a later date. My next time in the hospital I will make sure someone stays with me most of the time. Sorry for being such a downer but I do want individuals on this forum to know that there are many things lacking at St. Joe's Hospital.

[Emily B]

Hi, nyt. So sorry to hear you had such a rough experience at the hospital. Thanks for sharing this. We need to hear everything so we can be prepared.

Emily B.

[merrie]

Yes NYT thanks for sharing. Makes me nervous since I will be at St Joes for 5 - 6 days. I will be sure I have family with me at all times since I will also be having the epidural and will be immobile.

NYT - When you had the epidural did the nurses exercise your legs at all? Im curious / worried about how being bedridden for 5 days after surgery does not increase risk of blood clots. Im going to discuss this with Dr Hibner at my MRI follow up with him in December but was curious in the meantime if you had any insight.

Merrie

[nyt]

Merrie, you will were special compression stockings that are hooked up to a machine that feel like they massage your legs to prevent blood clots. They may or may not give you injections like heparin in your abdomen. Even with the epidural you will probably be able to move your legs some on your own, just takes some effort. As I posted early I did get some relief from the short time I had the epidural and do hope to try the procedure again next year, not sure at what hospital but the relief was enough that I will try the procedure again.

I struggled with posting my experience at the hospital because I don't want to scare anyone. I have been in 3 other hospitals over the last 3 years and can't say they were any better so sadly I don't think this is unique to St. Joseph's in Phoenix. I think I was more aware of it because it wasn't just an overnight stay. Also, my view is very tainted by my background. I worked as a medical secretary on a med/surg floor for years, got my nursing degree, then worked in an ICU for a short time before going to graduate school. While my years at the hospital mornings were a flurry of activity getting patients washed, gowns changed, and bedding changed. Not once while in the hospital did anyone offer me a wash cloth, warm water, nor help with bathing. I was very shocked by the 2nd morning when no one offered such help, while I was a nurse, not all that long ago, we went into a patients room and got them cleaned up in the morning and again washed faces in the evening. I was very thankful for my mother, who was there during the day to help bath me, order my food, help me eat and help rotate me every 2 hours. When we asked for such help they were more than willing to get all the supplies and help change bedding, etc. but you have to ask. The rooms are private and they will bring in a cot for a family member to spend the night and there are private bathrooms with a shower that they can use. Due to my mother's health she really couldn't stay during the day and I was fine at night because I am not shy about asking for things but was problematic when I got really sick in the night and just really couldn't be my own advocate.

[Bekah4321]

NYt,
What surgery did you have that they gave you the epidural for ?

Can you tell me about your decompression surgeries ?
I'm having bilateral decompression with dr hibner on Jan 30th and
Want to be as prepared as I can be .
What do you wish you had known ?

Thanks so much

Rebekah

[wendy7]

Hello everyone,

Just wanted to say that was a great post, for surgery with Dr. Hibner. I think it will help others who are going in for the surgery.

Nyt, I am sorry to hear you had some bad experiences with the staff. Glad you are able to post some of the issues, but happy to hear that you had a good outcome, even after your bad physical reactions. I was wondering if they gave you some reasons for the pleural effusion? Was it something that they think was there prior to surgery or did it happen after surgery? Ninety two percent is very low oxygen level. It should have alerted to the people taking care of you, that something was wrong.

Bekah,

I wish you the best with your upcoming surgery. There was a woman who used to post on here often, who had bilateral surgery with Dr. Hibner, due to living outside the US. She had a good outcome. I hope you do as well!

Take care,
Wendy