Scared for nerve block, should i do it?

[joeparz]

Hello All,

After reading the horror stories on here, i am terrified to get nerve blocks. I have one scheduled for tomorrow with Dr. Nagda in boston who i was referred to by Dr. Conway. Dr. Conway said it's a 50/50 chance of helping, and that to his knowledge no one has gotten permanently worse. I mentioned this website and he said it's a great website but not to believe everything you read. I will either have no improvement or an improvement that can be anywhere from a few weeks to a few years.

This all sounds like bullshit to me, as everyone on here contradicts everything he said to me. I am so lost and don't know what to do.

I have lots of symptoms and pain, but take no medications just kind of deal with it.

I would hate to get these injections and have not only no improvement, but actually get worse........ My MRI was as follows

I FINDINGS:

No mass or fluid collection is noted along the course of bilateral
pudendal nerves. There is minimal scarring/fibrosis adjacent to the
right pudendal nerve in Alcock's canal. No signal abnormality of the
pudendal nerve is identified. No muscle atrophy is seen within the
pelvis and bilateral piriformis muscles are symmetric. The hamstrings
insertions are normal.

Mild marrow edema involves the right medial inferior pubic ramus.
Bone marrow signal is otherwise normal.

IMPRESSION:

MR neurography focused on the pudendal nerves demonstrates minimal
scarring in the region of the right pudendal nerve.
Bone marrow edema of the right inferior pubic ramus may be
post-traumatic.



My symptoms seem to be getting worse as the years go by..........

Thanks,
Joe

[janetm2]

Joe,
All I can say is my experience and hope the best for you. I had some unguided blocks by Dr Marvel that showed a bit of relief but only a few hours. He sent me for guided blocks that gave full relief (this helped with diagnosis towards PNE) but again only for a few hours. I did not have any bad worsening effects.
Janet

[Patty]

I forget have you had PT yet? I am now going to a vaginal specialist in Burlington. She informed me that a few of her patients have had blocks with dr nagda with good results. I would not expect anything curative or even long lasting. It also may take more then one for any long lasting effects.

[carolynm]

I would recommend nerve blocks just for added info to the puzzle. I believe the dr you mentioned is experienced in this. May I ask where you got the MRN done?

[joeparz]

Hello

I had MRI done at MGH with Miriam Bredella. She works closely with Dr. Conway. He has not called to give me any information on his take on it. Just have what the MRI notes say. Which seem like there is not much scarring. which is probably why i am not in excruciating pain like most people.

Hmm good to know about nagda. Unfortunately i had to cancel because i was told the fellow would be doing my injections and not Nagda, so i said no way to that. Another month now....

I have had PT, sometimes i felt better, others i felt worse. Seemed like it was hurting more than helping. I had biofeedback and she said i had good control over my pelvic floor and that i didn't seem terribly tihgt. On some occasions i was but not always.

[Patty]

Joe I don't blame you for canceling. When I got an injection at the Brigham I specifically made it clear dr valaska was to give the injection not the fellow/resident. The nurse seemed more pissed off then the fellow.

[Patty]

Where did you get biofeedback? There is women in welledley that offers this but my current PT does not.

[Violet M]

Hello All,

Dr. Conway said it's a 50/50 chance of helping, and that to his knowledge no one has gotten permanently worse. I mentioned this website and he said it's a great website but not to believe everything you read.

I agree with Dr. Conway, you can't believe everything you read on this website, especially when it comes to people giving advice on what to do. We aren't doctors here (not that the doctors always get it right) and PNE is not an exact science. However, when people are posting their own experiences, I don't think most of us come here to lie. I know former patients of Dr. Conway who have gotten permanently worse from nerve blocks so I find his comment about him not knowing anyone getting permanently worse form nerve blocks to be troubling. Maybe he has forgotten?

My article in the latest newsletter is an attempt to summarize the information available about pudendal nerve blocks - including what is in the literature. You can read it on the homepage in the most recent newsletter at pudendalhope.org. My take on nerve blocks after moderating the forum 10 years is that very few people get permanently worse. It's pretty rare although it has happened to a few people. But also very few people I know of got permanently better. So I see nerve blocks as a diagnostic tool, and a series of nerve blocks as something you need to try before trying surgery if you think you might be on the path to surgery. Many of the PNE surgeons require a series of 3 of them before surgery, but I would take Prof. Robert's advice seriously that more than 3 is not a good idea.

Violet

[Ray P.]

Hi
I may be the exception, but there is at least one. The doctor told me that a nerve block could not do any damage. I would give anything to be in the shape I was in before that 2nd nerve block I had. That was 12 years ago. This was done in CA.

Ray

[Karyn]

I know former patients of Dr. Conway who have gotten permanently worse from nerve blocks so I find his comment about him not knowing anyone getting permanently worse form nerve blocks to be troubling. Maybe he has forgotten?

I agree, Violet. As one of Dr. Conways current patients, he has openly acknowledged the results of my second set of blocks.

I was told the same thing prior to receiving any blocks:

Dr. Conway said it's a 50/50 chance of helping, and that to his knowledge no one has gotten permanently worse.

He further went on to add that he had a patient who was "cured" from the blocks and only had to get them a couple of times a year for maintenance. Of course I thought:
Oh! This will be ME!

I really don't know why he's still telling patients this. Maybe "permanently worse" is subjective? Maybe he doesn't want to frighten patients away from this particular required diagnostic? Maybe he's relying on the interventional radiologist/PM Doc to explain the risks? Regardless, it would've been helpful to me to know this was even possible, instead of feeling like more of a freak for getting increased and new symptoms.

Additionally; the PM doc reiterated Dr. Conway's statement. The only risk I was informed of was, "You may experience some temporary, highlighted pain".

In the end, I signed on the dotted line, agreeing to the procedure. While I feel that I could've been better informed, I don't believe anyone set out to intentionally hurt me.
As evidenced by others posting their experience; this doesn't happen to everyone. But I do wish it was better communicated by the medical professionals involved of the potential; regardless how small.

Best,
Karyn