Health Organization for Pudendal Education

This is more of a technical question and maybe not the best place to ask it, but can you not get a 3T MRI done some place else (since they are used in many cities) and just have it sent to Dr. Potter to have it read by her (so that you don't have to travel to NY yourself)?

I don't know that I want an MRN after reading this thread, but if I did I saw someone say that you don't have to be seen by Dr. Filler you can go to any of the scan centers. So who orders the MRN? Any doctor can order one?

Faith,

If I were you, I would do whatever it takes to get the MRI done by Dr Potter in NY. And I know it probably sounds pretty overwhelming right now but I am right where you are. I still don't know if I'm entrapped or not because I had my 3T MRI done locally and the radiologist didn't see anything. When I called Dr Potter's office to ask if she could read my scan, I was told that she doesn't have time to read outside scans.

Dr Potter's MRI is on my Christmas list.

Oh wow, thanks for letting me know that Griff! Do you know how much her 3T MRI's are? It is overwhelming...I have to fly to see a PN doc and fly to get an 3T MRI? I'm always researching hoping I can find a doc who can do an EMG or PNMLT and block closer to me to help "diagnose" if I might have an entrapment.

Hi Faith,
It is like a normal MRI os the Pelvis.It costs about US $ 2,800 and your insurance will cover it.
The following should be helpful in getting the appointments as well as what your doctor needs to write on the MRI prescription.

Hollis G. Potter, MD Chief, Magnetic Resonance Imaging Hospital for Special Surgery Professor of Radiology Weill Medical College of Cornell University

The address is as follows.
Hospital for Special Surgery
Magnetic Resonance Imaging
535 East 70th Street, New York NY 10021
Basement level

Appointment Desk
Tel 212-774-7296
Fax 212-774-7295

The script should be as follows.
MRI of the Pelvis
Bilateral Pudendal nerve
1) From ischial spine to Sacro Spinal ligament beneath Sacrotuberous ligament and to the Alcock's canal.
2) Dorsal Nerve of the Clitoris or Penis especially passing through the Pubic bone.

To be reviewed by Dr. Hollis Potter:

Please have it faxed to 212-774-7295 by your doctor.
and then call MRI department at 212-774-7296 to schedule an appointment

Does the MRI look at your *entire* pelvis or just the pudendal nerve area??

Thanks.
Stephanie

sgrandy,
The MRN looks at the entire pelvis - it diagnosed my S2 tarlov cysts, and S2 is far up into the sacral area. It also described the state of all my pelvic floor musculature. I assume the 3T does the same, just from the standpoint that otherwise it would not be a very good test. But several people have posted their 3T results on this site so if you read them, this should tell you for sure...I haven't read them yet myself.

Hi Griff55, I was wondering how your MRI 3T went with Dr. Potter. What were the results? Anything useful to explain your symptoms? I'm planning to have a scan in January. Any helpful coordination and information would be appreciated!

frickla, I posted my results under the MRI topic. It mostly showed scarring in the pelvic floor near the Alcock's canal. I'm not really sure yet what my future plans.

I'm not sure what information you need. I just made sure to tell Dr Potter's assistant that I wanted a brief consultation with her after the scan and she did make time to see me and my husband. She went through the images with us and pointed out the nerve and the scar tissue. I also have a deviated coccyx and she told me not to let some dr tell me that it needs to be removed!

I made my appt for noon and my husband and I just flew out that morning and arrived at LaGuardia around 9:00 a.m. We took a taxi to the hospital and made sure we knew where to go and then we found a Starbucks on 1st Street and just hung out there with my iPad until it was time for my appt. The Starbucks is a little walk though and it was quite cold and windy the day we were there so I wore my long coat. I would suggest taking your warmest coat! Then our flight back was 4:45 p.m. so we just headed back to the airport after our meeting with Dr Potter.

I had my scan done by Dr. Potter. My husband and I drove from VA. We stopped at a hotel near the NJ airport and spent the night there. We then proceeded into NYC the next day. I had the scan done at noon and was completed in a little over an hour. I was very impressed with the staff and I also provided Dr. Potter with a short written history of my pain. The radiologist said that was helpful.

My husband and I met with Dr. Potter after the scan and she pointed out my PN entrapment was in the distal nerves and not in the ligaments. She indicated that traditional pudendal nerve surgery would not be necessary or provide pain relief. Dr. Potter said I had scar tissue in the perineum and around the dorsal nerves. She pointed out a few other issues, not related to PN and I asked her about my hip pain because another person had mentioned labral hip tears. It turns out I have scaring and severe bursitis! She could not rule out other labral tears or other issues without another scan just for the hips. She said this is a different set up with the machine. In all I was very pleased with the information the scan provided.

I had Dr. Filler's MRI also. Dr. Filler's report concentrated on the sciatic and a little on the pudendal nerves. His report indicated sciatic nerve entrapment, greater on the right than the left. He indicated some hyperintensity of the pudendal nerve on the left, but in his impressions there was no mention of pudendal nerves. Dr. Potter's report did not mention sciatic nerve entrapment. Not sure what to make of this because my script asked Dr. Potter to review the pudendal and sciatic nerves. I do have symptoms of sciatic nerve entrapment on the right side and fair amount of bursitis on the right too.

Dr. Potter suggested injections to the hip area reduce inflammation and injections in the perineum to help break up scar tissue. She said that having a standard pudendal nerve block would not provide relief and explained why. I have been working with Dr. Marvel in Baltimore, MD and with Dr. John Carrino at John Hopkins. Dr. Marvel indicated he would email Dr. Hibner and ask about the injections to the perineum. I am scheduled for a 3T MRI at Hopkins for the hips this week. After this I am told the doctors will decide what to suggest next.

As far as my thoughts on Dr. Filler's scans, Filler's charge is inflated and insurance does not reimburse more than for a standard MRI. I have looked at the imaging on both CD's and the clarity of of the 3T stands out over Dr. Filler's imaging. If I were to make the choice Dr. Potter vs. Dr Filler again with what I know now, I would make the trip to NY and have a series of MRIs with the focus on the pelvis and the hip if one has hip pain.

Hi

I have read all of your posts re 3Tesla and 1.5 Tesla MRN.... I went to see Dr. Filler for anumber of reasons, namely that I knew in advance that I needed to see a Peripheral Nerve Neurosurgeon who treated Pudendal problems as I suspected that I had a pudendal and genito-femoral/ ilioinguinal nerve entrapments along with right leg numbness and brachial plexus nerve pain and weakness along with facial nerve pain and a vestibular problem. I also had an anaphylactic allergic reaction to CT contrast dye last July. So for me I felt that in seeing Dr. Filler, who was recommended by Dr. Belzeburg and Dr. Robert Spinner, I could have all of my problems dealt with at once and have the MRN interpreted by Dr. Filler, the co-inventor of MRN. For me, the alaternative of going to see Dr. Hillis Potter, a radiologist, would mean that she would only be qualified to interpret the scan and not provide clinical diagnosis of a problem that would not come up on the scan and I also couldn't risk having contrast dye injected again owing to the anaphylactic reaction last year. There is only PRofessor Robert who is a Neurosurgeon in Europe. Dr. Calstedt in the UK is an orthopaedic surgeon and as such is not qualified to determine other nerve problems or a problem such as a Tarlov Cyst..... The best surgeon to evaluate a peripheral nerve problem is 1. A Neurosurgeon; 2. A Plastic Surgeon and 3. an Orthopaedic Surgeon depending on their specialty and geographical location/ experience.

I am not belonging to Dr. Filler's office at all nor am I asscoiated with Dr. Filler, other than I saw him for my problem. Yes he is expensive but when I enquired re my problem with a plastic surgeon, his prices were comparable.... On my visit to Dr. Filler, I had a little fall and ended up in the ER of Cedar Sinai for which the bill was in excess of €4,000. In the US you pay dearly for medical services. Also I understand that Dr. Hillis Potter charges $2,800 and I paid $3,000 for my MRN, so the costs are comparable and you have a Neurosurgeon evaluate your spine for other neurological problems. I just hate to see biased and uneven analysis of Doctors when the comparison is not the same. Insurance coverage would appear to be the issue with Dr. Filler's office... he has written extensively about this in his newsletters and in his book, "Do you really need back surgery", which I found excellent. My pain physician also praised it.

I will keep you apprised of how I get on with Dr. Filler's office. Some of his frontline staff can be abrupt, rude and a little offputting but if you have a firm resolve you will find that their manner may be in part because they don't have the training to deal with patients who at times are cranky and not able to fulfill their demands for paperwork etc.. there are only two frontline staff which I dread but the rest are vey soothing especially his nurse, Michelle Fang, who does try to do anything she can for you. Once you keep your temper and reply in a calm assertive way you will get there.... this is the irony that you need to be in the whole of your health in dealing with most medics in order to express the problem (if you can accurately pin it!!) and then let them know that you have done as much as possible to figure out what aggravates the problem (with the healp of a diary). Some Doctors love a well informed patient others hate them!

Good luck to you all as I have found myself to have been on a personal Odyssey the last 8 years and for which I feel that for every patient who gets help there are at least the same amount who don't because they may not have the energy or the health to research themselves or a Dr. who will listen to them and help them figure it out......

Ms. Wise