MRI Results & Canada doctor

[twistedto]

Seems my MRI confirms pudendal nerve entrapment. Already on pregabalin 300mg per day with a little help originally but flare up just happened and its unbelievable pain that ER thought I had testicular torsion as I had left testicular pain and swelling. Give me some Percocet till I can get back to my doctor. Going on day 5 of the flare up and want to breakdown and cry. Any recommendations on what to try next for meds? Or do I ask the doctor for meds for flare ups?

Been referred to a Scrotal Pain Clinic and Urology at Mt Sinai with Dr. Keith Jarvi, but have to wait till June 2024 for that.

Any recommendations for a doctor in Canada for males for pudendal nerve entrapment? Just want to ensure I'm heading the right direction to get some relief.

Thanks for any help given.

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CLINICAL INDICATION: Intermittent left testicular and proximal thigh pain/numbness. Worsens with sitting/bicycle seats. Concern for predental neuropathy, please rule out any nerve abnormalities (if visible) or space-occupying lesions.

TECHNIQUE: Multiplanar, multisequence MR images through the lumbar plexus were obtained.

FINDINGS:
On the axial T1, there is a prominent vascular loop around the left pudendal nerve. There is asymmetric thickening of the left sacrospinous/sacrotuberous ligaments and adjacent sacrococcygeal muscle. There is a thickened left pudendal neurovascular bundle posterior to the sacrospinous/sacrotuberous ligaments with additional thickening within Alcock's canal.
On the T2 axial SPAIR sequence, there is corresponding hyperintensity of the left pudendal nerve which may represent mechanical irritation/impingement. There may be scarring in the leftsacrospinous/sacrotuberous ligament area.
Muscle bulk is maintained about the pelvis. Mild edema at the lateral greater trochanters may reflect trochanteric pain syndrome. Clinical correlation regarding tenderness in this region is suggested.
Iliopsoas and hamstrings tendons are intact. No significant joint effusions at the hips. Small amount of high T2 signal at the lateral aspect of the right labrum suggesting compatible with a nondisplaced labral tear with a small amount apparentlylabral cyst extending along the anterior inferior labrum/acetabulum.

OPINION:
1. The findings of a prominent vascular loop around the left pudendal nerve with asymmetric thickening of the left sacrospinous/sacrotuberous ligaments and adjacent sacrococcygeal muscle together with a thickened left pudendal neurovascularbundle suggests the possibility of pudendal nerve entrapment/mechanical irritation and possibly a degree of scarring.
2. Mild edema along the lateral greater trochanters may reflect trochanteric pain syndrome. Correlation to the site of patient's tenderness is suggested.
3. Nondisplaced tear of the right superior labrum with small paralabral cyst.

[Violet M]

Hi,

The only PNE surgeon I know of in Canada right now is Dr. Nucelio Lemos but I don't know if he treats men. If not, he might be able to direct you to someone who does. https://obgyn.utoronto.ca/faculty/nucelio-lemos

Dr. Peng is a pain management doctor in Toronto. https://anesthesia.utoronto.ca/faculty/philip-peng

I have not heard of Dr. Jarvi before. Do you know if he does pudendal nerve release surgery?

In the past, there have been patients who were able to get their surgery in the US paid for by the Canadian health service. That might be another option to research.

If you send me your email via private message I can send you an updated list of physical therapists in Canada so that you could see if there is one near you -- not for treatment, but sometimes the PT's work with physicians in the area and they might be able to direct you to a doctor who can help. It sounds like your entrapment is likely beyond anything a PT can do for you at this point, but they might be able to direct you to a good pain management doctor or even a surgeon.

Before my PNE surgery, I used oxycodone just at evening and nighttime so I wouldn't develop a tolerance to the narcotics. Some people have good results with buprenorphine but it can be difficult finding a doctor who will prescribe it. It is considered to be less likely to cause you to develop a tolerance like other narcotics do.

You could try heat or ice for pain management if they aren't contraindicated in your case. I also found warm sitz baths helpful when I thought I was going to go crazy.

Violet

[twistedto]

Thanks. Don’t believe he does pudendal nerve release surgery. That’s is what I’m worried about.

I will look into the other options as well.

[Violet M]

If Dr. Jarvi isn't a surgeon, June is a long time to wait to see someone who isn't a surgeon, especially when your MRI shows a likely entrapment that could possibly be an indication for surgery. When you have PNE, waiting 6 months can seem like forever. I hope you can find another provider who can help you sooner.

Violet

[twistedto]

Quick update. Doctor agrees and has continued Percocet (oxycodone/acetaminophen) along with pregabalin for pain management going forward. Will limit oxycodone to evenings.

Now looking into if Dr. Nucelio Lemos treats men. Otherwise will work on out of country surgeons. My doctor agrees that it will be approved to be paid by our health system here. Just need to be pre-approved by Ministry of health.

[Violet M]

That's great that the doctor will prescribe Percocet for you. It really helps if you can get the pain calmed down for at least part of the day and sleep at night.

I would be interested to hear if Dr. Lemos treats men. I can't remember for sure, but I think he may have trained under Dr. Possover in Switzerland and I believe he does a laparoscopic approach. I'm not sure if the approach he uses can reach all of the problem areas mentioned in your MRI, so that is something you would want to ask.

I hope you can get in soon with a good surgeon, but whoever you see, it's probably important to have them look at your MRI results prior to traveling a long distance, to see if they would be able to deal with the type of entrapment described in your MRI. Some of them will do phone consultations. You may also want to ask them, if they were to recommend surgery, what they can do to help prevent scar tissue from forming after surgery.

If you are going out of the country, I have heard some good things about Dr. Lakhiani (in New Jersey) who is specially trained in microsurgery. https://www.pudendalhope.info/united-st ... icians/#NJ
Given the vascular loop seen in your MRI, he may be one of the physicians you could consider having a consultation with. I cannot endorse or recommend any particular surgeon. I am just telling you what I have heard. Wishing you all the best in finding the treatment you need.

Violet

[Tullson48]

Dr. Lemos does treat men, I had pudendal decompression surgery 5 months ago

[twistedto]

Great to know. Both of you are very helpful.

I see my doctor again soon and will follow up on the referral. I’m sure it will be a long wait time.

[Tullson48]

Yes, unfortunately it may be 9-12months wait for a consult. My procedure was laparoscopic approach. If you have funds you may want to consider outside Canada. My issue is numbness more difficult to treat then pain. You can private msg me if you want to be updated on my progress.

[twistedto]

I have pain, shocks, burning/coldness & numbness in left testicle, penis & buttock. Along with tailbone, back pain, hip pain. Ranges widely depending on the day, time of day or what I’m doing (ie washroom, driving, standing, etc)

I will message you privately, thanks!