Positive CT Guided? Do I have to go to California??

[Grace]

In West Michigan I've not found a doctor who has experience with a CT guided nerve block. I don't want to be their first. Or can anyone do it?

Anyone have a positive experience? I'm willing to travel to get it right, but can't go too far for obvious reasons.

Desperate with pain. If you have any recommendations, please let me know.

Thx!!

[HerMajesty]

I did in fact get it done locally as somebody's "first". The specialist who does this kind of thing is an Interventional Anesthesiologist, and they usually work out of pain clinics. They do nerve blocks of all kinds...So I went to one who had a rep of being very talented with a needle, and he read up on the best approach and said he wanted to do it: He saw it as an opportunity to offer a different kind of block in his practice.
Maybe I am wrong about this, but to me if a doctor is very good at nerve blocks in general, I don't think it's such a stretch to do a 1st pudendal block. I have seen a fair number of people who have had negative effects from nerve blocks done by PN specialists; whereas I had no problems with the two blocks I got done by my inexperienced local guy. Both gave me a mild initial flare, 1st one gave me about a month of improvement, 2nd one not so much, no long term benefit. But that is actually better than a lot of nerve block experiences I see written up on this site.

[Grace]

That is really reassuring. The anaesthesiologist I saw likewise has a good reputation and did his homework. He seemed confident, but I was a nervous wreck and chickened out. That was back in May. I'm at the end of my rope now. It is hard to imagine any worsening of pain. But my imagination is sometimes limited.

Now, I'll have to see if he can get me on the schedule before I come undone.

[HerMajesty]

I guess the bigger picture question is the purpose of getting a nerve block at all. I have seen a lot of posts on this site about nerve blocks and what I see is many people, like me, have a transient flare followed by transient relief; but a few people get permanently worse - I think on another thread I read that this is because steroid has potential to crystallize in the nerve (?) I'm not sure anybody has had permanent improvement. So it seems like a bit of a risky way to get what usually amounts to temporary pallative care. That's the trend I have observed here: For more objective data look for articles on PubMed. I'm just not sure it's the best choice whether it is your doctor's 1st pudendal block or his 500th.

[Grace]

Yeah. I've been resistant to the idea. But I'm in such terrible pain that I don't know what to do and this is the only thing my docs can come up with. The only other suggestion has been a neurostimulator.

I have no idea of the underlying cause and I don't know if I will find out.

I don't know why my pain has gotten so bad. I used to be able to walk (around the house and yard) a total of about 140 minutes a day. Now I'm near tears after 20!! The pain and burning (entire pelvis and radiating down inner thighs all the way to big toes) is constant and the neurontin did notwork for me. I'm starting keppra now. I'm just a mess.

It really seems hopeless unless you get lucky to live near or you can afford to travel to the few experienced doctors.

[nyt]

I agree with HerMajesty that if the local doctor is willing to do his homework than you will be ok. If he has any questions you can always give him the name of Dr. Westesson out of Rochester, NY to contact. His contact information should be in the doctor list. He has done 100's of CT guided pudendal blocks. He has done about 7 or 8 on me and takes him less than 10 minutes to do both sides (I need both sides done).

I did flare after them but things always settled down and I did see temporary improvement. I did have one thing that totally went away. I had a bladder sling and when they did a partial removal I woke totally numb across my rectum from the right sit bone to the left sit bone. Plus rectal spasms and pain that was worse on the left side. The pudendal blocks totally cured the numbness. I still have rectal pain and spasms, didn't cure that because I have scarring of the rectal branches. My pelvic floor PT had one individual cured by a series of 3 pudendal blocks so obviously they weren't entrapped. I think cure is very rare. The usually goal is diagnostic and see if they can decrease the pain for a better quality of life.

Good luck with whatever you decide to do.

[HerMajesty]

I had to be quite stubborn in focusing on underlying cause and it took a few years, but very worth it. Without it, you can do nothing but take shots in the dark. Pain from pelvis to toes suggests either spinal pathology in the sacral or lower lumbar, and/ or involvement of the piriformis muscle which can entrap elements of both the pudendal and sciatic nerves simultaneously.

[Violet M]

Grace, I can really relate to the inner thigh burning. That was a huge problem for me before PNE surgery to the point of where I had trouble walking. Sounds like you were quite the exerciser before PNE hit? I can definitely relate to that too. Please have hope because now I can walk briskly 3 miles a day -- no problem.

My thoughts on nerve blocks are that if you are ever going to consider going the surgery route you are going to have to have some nerve blocks -- for diagnostic purposes and to see if you can possibly avoid surgery. When I went for nerve blocks I had very low expectations as far as significant pain relief. I am not a fan of endless nerve blocks. If a doc tells you to get more than 3 I would have serious questions.

The thing to remember about CT guidance is high radiation so it may not actually be your 1st choice. If you can have any blocks done via ultrasound that would be nice. If you are having one done at the ischial spine, fluoroscopy is just as good as CT scan with less radiation. For alcock's canal, fluoroscopy won't work and you may have to settle for CT guidance.

I agree with the other two on the choice of doctors -- if they are good with a needle that's what matters. Check with interventional radiologists in your area too.

Violet

[Grace]

OK, great. HM, nyt, Violet: Your comments are a huge help! HM wrote:

Pain from pelvis to toes suggests either spinal pathology in the sacral or lower lumbar, and/ or involvement of the piriformis muscle which can entrap elements of both the pudendal and sciatic nerves simultaneously.

I'm seriously trying to find a doctor who is interested in my case. Until then, what tests can I ask for that might shed light on the source?

[HerMajesty]

I should know if you have an MRI or not, but I don't. You should have views of the pelvis and lumbar and sacral spine, (if you had a pelvic MRI and a lumber MRI, the entire sacrum is already visible). Sometimes either the Radiologist's report or your physician's interpretation of the Radiologist's report are inadequate. Have your lumbar and sacral IMAGES, not the report, reviewed with an eye to ANY possible abnormality: ask specifically to have any variation noted even if the physician does not believe it is symptomatic. A couple of examples, 1. my source of PN was tarlov cysts aka perineural cysts aka meningeal cysts of the sacral nerve roots, which Radiologists often consider "artifact" and might keep off the report entirely; or if on the report doctors might not mention to the patient because of the mistaken belief that they never cause pain. 2. generally any lumbar disc abnormality will be on the radiology report, but two doctors might disagree on whether such an abnormality might be causing pain. For example some doctors might discount a herniated disc if there is still a wide enough foramen beteen the vertebrae to prevent nerve root compression; but get a 2nd opinion from the same MRI, and another doctor might be concerned about an annular tear (disc leakage) with resulting chemical radiculopathy of the nerve root. This will cause symptoms even without compression.
If the piriformis is in spasm, you should have found out in PT. If you haven't been told, you might want to check back with your former PT or look on your PT records if you have a copy ( and always do make a habit to get copies of all your records). I had the pelvic MRN and it visualized the piriformis - I think but am not sure that the piriformis is also visible on a regular pelvic MRI. You will want to know if you are one of the 20% of people whose piriformis is bipartite (split), which makes it more likely to entrap nerves if it is in spasm. The insertion point of the piriformis can actually be felt on the upper buttock slightly lateral of center, and if it is in spasm you will be able to palpate a distinct, roughly round, depressed spot of marked soreness / tenderness in that area. If your piriformis is problematic, it might be more useful and less risky to have that injected rather than the nerve.