Can anyone give me medical proof of negative side effects?

[beverley]

I just had the injection on tuesday after going to PT for the past four months, having my hip injected two months ago (with no success), doing acupuncture, massage etc -- with no success. Out of total frustration -- i tried the intra vaginal pudendal nerve injection at alcocks canal with the assurance that it wouldnt make me worse -- i want to trust my health care providers! I honestly dont know who else to go to -- these are the best new york has to offer. Other than back surgeons -- i havent heard of anyone else that actually knows what they are doing-- anywhere in the country.

Obviously, im a having a 48 hour post injection steroid flare. The injection did'nt even make my biggest pain area (the clitoris) go numb, it just made it worse. I don't know what caused the flare five months ago, but i am pretty sure my pain is coming from the ilioinguinal or genitofemoral nerve -- which she was going to inject in two weeks. I dont think i am going to do this. Not sure what my next steps are but i am getting nowhere!!

[Violet M]

Beverly, it's common to have a flare-up from the steroid for several weeks after the injection. So hang in there and use lots of ice and extra pain meds if you can. I had a horrible flare-up from one of my nerve blocks but it subsided eventually. Maybe you could try the other nerve blocks without steroids just for diagnostic purposes. Something to consider anyway.

Best,

Violet

[beverley]

Thanks violet. I guess im not sure the benefit of the nerve injections. Diagnostically, they are definitive are they?

[HerMajesty]

Diagnostically, they are definitive are they?

I wouldn't call them diagnostically definitive. Here are a couple of issues: 1st is something I know to be true, and 2nd is just possible issues I would assume in theory:
1. Depends on what you are trying to diagnose: PN or PNE or pudendal nerve damage. Of these three, the block can ONLY diagnose PN. A person can have PN without any pathology of the pudendal nerve, if there is neural pathology above the level of the pudendal nerve. My nerve block was positive for PN, but I had no problems with my pudendal nerves: I had a problem at the S2 nerve roots, which give rise to various nerve branches including pudendal. So while my positive block was indicative of PN, it was not indicative of PNE or pudendal nerve damage.
2. The diagnostic value is that the anesthetic should temporarily relieve your pain. Not everyone gets expected pain relief from local anesthetic: Atypical reaction = false negative. Conversely, not all injecting physicians have equal skill, and some anesthetic could infiltrate surrounding tissues, causing general pelvic numness and hence a false positive when the real problem is in another pelvic structure, and / or another group of nerves such as those in the inguinal canal.

[beverley]

How did you know that the problem originated at the S2 nerve root? Thank you for your helpful explanation.

[HerMajesty]

How did you know that the problem originated at the S2 nerve root? Thank you for your helpful explanation.

I had a pelvic MRI which incidentally showed the sacrum, and it showed tarlov cysts of the sacral the nerve roots causing compression at S2. Always good to rule out spinal pathology for any neuropathy.

[beverley]

I have had a potter pelvic MRI and a lumbar MRI. Other than the Pelvic MRI -- would a lumbar MRI show nerve compression from the sacrum or lumbar spine? I have been wondering how I would get that diagnosed? None of the MRI reports commented on the sacrum other than saying my tailbone is deviated. -- which i thought might be significant. Thanks again for your response.

[HerMajesty]

a lumbar and pelvic MRI should be enough to get a look at the sacrum. Some radiologists do not mention tarlov / perineural / meningeal cysts because they consider them to be "artifact", but I believe Doctor Potter has mentioned them, using the term "perineural cysts", on her reports - but with little emphasis. Still, if you see no such mention on your potter MRI report, I doubt you have spinal / nerve root pathology.
The deviated tailbone could be very significant. Joint dysfunction in the pelvis (commonly termed SIJD - sacroiliac joint dysfunction - but really other pelvic structures aside from the sacroiliac joint can be involved) rarely will show up at all on imaging studies; but a major hint that the problem is present would be a slightly deviated coccyx (tailbone) or a widening of the pubic symphysis. Otherwise pelvic joint dysfunction is a hands-on diagnosis done by a Physical Therapist - specialties to look for are PT Manual Therapy, some Sports PT's, and some Pelvic Floor PT's. If you have not had it ruled out, you need to find out how badly your pelvis is misaligned. You know something - your coccyx - is definitely misaligned, and you can see if you get any results having that corrected; but usually that is just a prominent sign of a more complex joint dysfunction pattern in the lower pelvis. If that is the case, you can have your deviated coccyx corrected and by your next visit it will be out of alignment again. A few PT's put much more emphasis on pelvic alignment than the majority, and often they are outside of the realm of "female pelvic pain" - Sports PT's often being more knowledgeable but more reticent to touch pelvic pain patients. The key is to find one in your area whose website indicated specialized pelvic Manual Therapy training, and then DO NOT say you want to be seen for PN, say you want to be seen for a deviated coccyx and screened for SIJD. Otherwise they will likely refer you back to a pelvic floor PT even if the pelvic floor PT does exclusively soft tissue / muscle work and does not know much about pelvic alignment. But for sure, look into this possibility. I had both SIJD and tarlov cysts, and while I eventually needed tarlov cyst surgery, SIJD correction gave me a lot of relief and a couple of years' remission from my worst symptoms.

[beverley]

Thank you for all your knowledge. My pelvic PT has ignored my misaligned pelvis and tailbone -- all she does is tape my SI joints and do internal work. She is considered to be one of the best pelvic PTs in NYC. My pelvis is misaligned -- the right side has a much bigger anterior tilt than the left. When i lie down the right side of my sacrum/pelvis is lifted off the floor (due to the anterior tilt). I have tried to correct this myself with exercises that realigned the SI - but they dont really work. I have gone to 5 PTs-- but will search for one who is more knowledgeable about SIJD. Thanks again for your advise.

[HerMajesty]

If you're in NY see Robert Shapiro at Gold Coast PT in Huntington: http://goldcoastpt.net/staff/huntington/ . Sports PT, unsurprisingly, but he can align a pelvis. There are several big names in NYC pelvic floor PT, but I don't have any knowledge of one who is particularly skilled at the SI.