My Visit With Dr. Dellon

[nyt]

I have broken down my appointment with Dr. Dellon on 2/22/2011 into six caterogies: The Exam, Dr. Dellon’s Recommendations, Pudendal Nerve, Insurance, My Impressions of Dr. Dellon, and What Are My Plans. Sorry for such a lengthy post but wanted to be detailed for anyone considering a visit.

The Exam: Before I saw Dr. Dellon the technician performed a 1 point static and 2 point static Pressure-Specified Sensory Device (PSSD) test on the lateral femoral cutaneous nerve and the obturator nerve on both of my legs. I sat in a chair and the technician handed me a buzzy, just like I was a contestant in Jeopardy. She held a small 2 prong PSSD device in her hand and she asked me to close my eyes. She then told me she was going to do the 1 point touch test and as soon as I felt a sensation to press the button. She started with the left lateral femoral cutaneous nerve first and as soon as I felt a sensation I pushed the button. She repeated the test five times. Then she told me to press the button when I could feel 2 prongs. Never felt the two prongs! All I ever felt was the sensation of pressure that kept getting more and more but it always felt like 1 prong. This same procedure was repeated on the right lateral femoral cutaneous nerve and both obturator nerves. The test was not painful but I am so sensitive in the obturator nerve distribution area that it made me cringe. She was very gently and the test took less than 10 minutes.

I knew during the PSSD testing that I had no 2 point static discrimination of the areas innervated by the lateral femoral cutaneous nerve and the obturator nerves on either of my legs. When Dr. Dellon came into the exam room he looked at the results but never discussed the results with me and just started the questions. I really can’t say why he didn’t say to me “Let’s look at these results and this is what it means” because everything else we discussed he was quite detailed. Not that I’m trying to make excuses for him or any physician I think it was because he was running 2 hours behind because of really bad weather the night before and the roads were bad so he was late getting into the office. I never asked him to go over the results of the test because I already knew what the results meant ie that I have loss of neuronal innervation in these areas, that the nerves that carrier these signals to the central nervous system are the slow adapting fibers, and that these results indicate I have an entrapment of these nerves. In hindsight, I wish I had questioned him but I didn’t.

Dr. Dellon thoroughly went through my history of when the pain started, what kind of exercise routine/program I had, if I had any type of trauma’s in the past, type of surgeries I had undergone, number of children I had given birth to, and if I any complications during these deliveries. During this questioning I discussed the type of pain I had and where it was located. On several occasions he asked me to point to the human body nerve diagram on the wall to indicate where I hurt. He also asked me what order I wanted my problems fixed. I told him my legs, my groins, my sitting, my feet, and my piriformis. He focused on the first three.
He had me lay down face up on the table and asked me to point on myself where the worst groin pain was. With a pen he drew on my lower abdomen where the scars were from the hysterectomy surgery. Then he gently pressed along the pubic bone and when I told him it was extremely tender he marked an “X” and told me that was my ilioinguinal nerve and that it was entrapped, most likely in scar tissue. He continued this process for the iliohypogastric, genitofemoral and lateral femoral cutaneous nerves on both sides. I was extremely tender in all of the spots where these nerves can become entrapped. He then had me bend my leg out like for a gyn exam. I have these lumps of muscle located medial anterior on both of my legs that are up towards the groin but not that high. He had my mother come look at my legs and said “Your daughter has torn some of her adductor muscles in her legs most likely from the lithotomy position during the hysterectomy.” He then drew around the adductor muscles that were bulging. Because my legs are so tender to touch he had me find the most tender spot on the inside of my legs which is in the middle of the leg quite high up and when I found it he put an “X” and said that is your obturator nerve and you still have an entrapment somewhere. He then pressed on my saphenous nerve and the pain went down the inside of my leg and he marked on “X” and drew an arrow down my leg. Side note: When I take showers and the water gets even a little bit too hot the inside of my legs turns red with a heat rash and then the muscles spasm. I had brought these pictures of my legs for him to see and he said that is your saphenous nerve that is causing the heat rash. He said he was quite impressed how my picture of my legs matched the anatomy perfectly. Now that I have all these drawings on me he took some pictures and told me he thought he would present my case at a future meeting.

Dr. Dellon then had me lay face down with my butt up in the air. He again had me point to the areas that were painful or tell him where they were. He told me that the perineum is innervated not only by the pudendal nerve but by the cluneal nerve and he thinks some individuals that have been diagnosed with pudendal symptoms the problem is really the cluneal nerve. He first pressed up into Alcock’s canal, ouchy, then he pressed just a little lower on the area he told me was the cluneal nerve. No pain there, I think the only place. I will need to get out the anatomy book to look at exactly where he pressed for the cluneal nerve and the post again.

Dr. Dellon’s Recommendations: Now that I am all marked up with pen he pulls up a chair with the anatomy book and goes through the surgery he is recommending to start with. He is recommending ilioinguinal, iliohypogastric and genitofemoral neurectomies. Those three nerves will be cut then buried into muscle up by the iliac crest to eliminate any problems with then getting entrapped into scar tissue or neuroma formation. Since these are sensory nerves it will leave me with diminished sensation which I already have so no big deal. He will then do a decompression of the lateral femoral cutenous nerve where it goes through the round ligament. Next he will move down to the legs and cut the adductor muscle on both sides that is torn. He will look for the obturator nerve and decompress as much as he can and one of the posterior branches. He did not think he could get high enough up the obturator nerve to find the rest of the bladder sling to remove it. He will then decompress the small area of entrapment of the saphenous nerve. Surgery time to do all of this would be about 3 hours with one of his colleagues assisting because there is at least 1 hour of suture time.

The surgery would be done in the morning and I would go to the hotel next store by that evening. The next day I would either go to Dr. Dellon’s office for an exam or he would come to the hotel. I would need to be seen post-op by someone local and then follow-up at a future date for another exam. He was hopeful that this surgery would give me about 80% improvement in the pain related to these specific nerves.
Just before he was done he says to me, “I know you are pretty bad but believe it or not I am treating another woman worse off than you.” I think he was attempting to make me feel better but just made me feel real bad for the other woman.

Pudendal Nerve: After Dr. Dellon aggregravated my pudendal nerve by pressing on it he asked me if I had yet had any pudendal nerve blocks. I told him yes and all had decreased my perineal pain. He felt I also had pudendal neuralgia but felt that with the surgery he is recommending that if I get these other problems under control that I might be able to go without the pudendal surgery. I asked him how he did his pudendal surgery and he said he did not want to discuss the pudendal surgery at this time as he felt what we had just covered was complicated and extensive enough that right now was not the time to talk about pudendal surgery. Since he made it very clear that during this appointment the pudendal surgery would be a discussion for a future date I did not ask any of my pudendal surgery questions. Sorry to all of you on the forum who are interested primarily in this topic.

He told me he was glad that I had chosen not to have the pudendal surgery yet as he is not happy with the outcomes the surgeons are getting. In his opinion physicians like Dr. Conway and Dr. Hibner have the best interest in mind for their patients but they are not trained to work on nerves but are gyn surgeons that really should have more extensive training in nerve surgeries. I did not take this as a criticism of Dr. Conway, Dr. Hibner or for that matter any of the other pudendal surgeons but just Dr. Dellon’s opinion and general concern for patients.

Insurance: Since he does not participate in insurance he said he will write up everything I need to submit to the insurance company to see if I can get them to pay it as an in-network benefit hopefully, leaving me with a smaller out-of-pocket payment. He recommended I ask to work with the medical director for the approval. He said he didn’t think there were any physicians who can do the extensive surgery that I need done. I will not know the cost of the surgery for at least 1 week. I am NOT going to post the itemized cost just in case someone else goes to see him and his charge is slightly different. For example, because he will already be in the abdomen to do the ilioinguinal neurectomy the cost of the iliohypogastric will be cheaper than if you just needed the iliohypogastric done.

Payment plan options are minimal at best. At least 50% down and the remainder due within 90 days of surgery. I was wishing for something like $100.00/month the rest of my life. The billing individual is Dr. Dellon's wife. I was unable to speak with her personally but will do so once a decision is made regarding surgery.

My Impressions of Dr. Dellon: Dr. Dellon is a physician who has given considerable study and time to understanding the innervation of the pelvis. He has dissected about 100 cadavers and has the best understanding of pelvic neuroanatomy, including variations, of anyone I have seen thus far and probably in the world. He has won numerous awards and has published prolifically on nerve surgeries throughout the body. He has many patients that have been able to have spinal cord stimulators removed and reversal of Complex Regional Pain Syndrome after his surgical interventions. When he started the physical exam I thought to myself “Finally, after 4 years I have found a physician that knows exactly how to figure out all my pelvic neuropathies. Thank you God!”

What Are My Plans: 1) Have my 3T MRI with Dr. Potter on Friday 2/25/2011, 2) See about cost of this surgery with Dr. Dellon as I know it will not be cheap, 3) Talk with Dr. Howard and Dr. Hibner regarding Dr. Dellon’s recommendations, and 4) Send an email to Dr. Dellon with additional questions.

[Pelvis Stressly]

Great report nyt, thanks a lot for posting in such detail!

[A's Mommy]

Wow, NYT. Thanks for the play by play. Sounds like Dellon has done some homework. However, I was interested in hearing how he did his pudendal surgery, as this is the pudendal forum... tee hee hee. I know it's not your fault.

Interested to see what Dr. Hibner thinks about all this.... keep us posted.

[RJR]

Thanks, nyt, for the exceptional detail...almost like being there. I am glad you have found someone who can address your issues.

[roxy1]

Hi There,

That is a very informative post, Thanks. Is the Dr Howard you mention Dr Howard Richard at Uof Md Medical Center in Baltimore?

Roxy1

[nyt]

Roxy1, it is Dr. Fred Howard in Rochester, NY.

[roxy1]

Hi nyt,

Thanks for that answer...If he is with Dr Foster I am sure he is great. Did they recommend Dr Dellon?

Thanks,
Roxy1

[nyt]

Yes, he is in the same group as Dr. Foster. When Dr. Dellon's name came up on this forum I did some reading about him and then talked with Dr. Howard about going to see him. I told Dr. Howard that if he thought the whole PSSD was snake oil to tell me, I did not want to waste any more money on physicians that couldn't help figure out what was wrong with me. Dr. Howard said Dr. Dellon was sound scientifically and was highly regarded in the medical community. He felt it was a great idea for me to go and was hopeful Dr. Dellon would be able to figure out my additional neuropathies and give me some direction where to go next. He certainly did and I am thankful. Dr. Dellon will send a report to Dr. Howard.

[roxy1]

It sounds like you may have a plan...I wish you all the best, Thanks for sharing your info

[Karyn]

Hi Nyt,
Thank you very much for sharing your appointment with us. You did a great job communicating the event. Whew - so how are you doing with trying to digest all of this? Are you OK? It sure does sound like you've found just what we all need for pelvic nerve problems. I wish you the very best with your MRI tomorrow and future treatments. Please keep us updated!
Hugs,
Karyn