Anyone get cure from nerve block?

[davemon1953]

This is my last "card" to play. Has anyone out there been cured with a nerve block? Even for a few months? I had a venogram that showed abnormal pelvic veins, which they called pelvic congestion syndrome. They did coil embolization to shut down those veins a week ago. So far is has not worked. Anyone else have the embolization that worked on these nerves?

[pn_person]

This is my last "card" to play. Has anyone out there been cured with a nerve block? Even for a few months? I had a venogram that showed abnormal pelvic veins, which they called pelvic congestion syndrome. They did coil embolization to shut down those veins a week ago. So far is has not worked. Anyone else have the embolization that worked on these nerves?

davemon,

I am interested in your case as it sounds like we are going through a very similar situation.

I also have congested pelvic veins causing some edema and recently saw an interventional radiologist to determine if embolizing the veins would help my PN issue which is causing me a severe amount of numbness.

The doc said he did not know if the swollen veins were causing the PN damage but he did not think the risk of embolizing the veins was worth it. Said there was at least an equal chance that the edema from poor venous return would get even worse, and possible cause the PN more problems.

Now I am using neurontin (from a pain doc) and increasing the dose until I an taking enough to determine if the numbness can be helped by it I am up to 300mg/day, still a relatively small dose (doc wants me at 600), and no reduction in numbness yet.

If the neurontin does not work, the pain specialist is going to try a cortisone injection (likely in the sacral spine at the S3 level) which is what you are now questioning. If you have pain, your injection will obviously have some anesthetic in it also.

Some questions if you don't mind.
What are your symptoms?
Do you have mostly pain or numbness like me?
Do you have any edema from the venous issues?
Did you get worse, or just no change after the treatment for the swollen veins?

Can't answer your question regarding the block, but I am sure you will get a lot of replies from members here who have already gone through it, some many times.

Thanks in advance for the help.

Rob

[davemon1953]

answers below

Some questions if you don't mind.
What are your symptoms?
6 MONTHS PELVIC PAIN, PERINEUM PAIN, THAT GRAVITATED INTO ANAL PAIN TOO. SITTING PAIN.
Do you have mostly pain or numbness like me?
PAIN ONLY ALTHOUGH ANAL PAIN COMES WITH BURNING/TINGLING
Do you have any edema from the venous issues?
NO MY LEG VEINS ARE WIDE OPEN. WAS MASTER SWIMMER FOR 20 YEARS BEFORE THIS AWFUL THING GRIPPED ME.
Did you get worse, or just no change after the treatment for the swollen veins?
WELL I AM SEEING HIM TOMORROW AFTER 8 DAYS. SO FAR I HAVE NO DRAMATIC IMPROVEMENT IN SYMPTOMS ALTHOUGH HE SAID IT MAY TAKE 14 DAYS. MY PELVIC VEINS WERE A MESS! TWO TANGLED MASSES THE SIZE OF QUARTERS THAT SHOULD HAVE BEEN MICROSCOPIC. THE PROCEDURE WAS EASY. NO DOWNSIDE TO THE PROCEDURE AT ALL.

[pn_person]

answers below

Some questions if you don't mind.
What are your symptoms?
6 MONTHS PELVIC PAIN, PERINEUM PAIN, THAT GRAVITATED INTO ANAL PAIN TOO. SITTING PAIN.
Do you have mostly pain or numbness like me?
PAIN ONLY ALTHOUGH ANAL PAIN COMES WITH BURNING/TINGLING
Do you have any edema from the venous issues?
NO MY LEG VEINS ARE WIDE OPEN. WAS MASTER SWIMMER FOR 20 YEARS BEFORE THIS AWFUL THING GRIPPED ME.
Did you get worse, or just no change after the treatment for the swollen veins?
WELL I AM SEEING HIM TOMORROW AFTER 8 DAYS. SO FAR I HAVE NO DRAMATIC IMPROVEMENT IN SYMPTOMS ALTHOUGH HE SAID IT MAY TAKE 14 DAYS. MY PELVIC VEINS WERE A MESS! TWO TANGLED MASSES THE SIZE OF QUARTERS THAT SHOULD HAVE BEEN MICROSCOPIC. THE PROCEDURE WAS EASY. NO DOWNSIDE TO THE PROCEDURE AT ALL.

thanks for your quick reply!!!

any idea of what caused your PN and vein issues???

most people seem to be able to track it to some injury..as for me, I am clueless..woke up with a small problem that has only progressed for probably 7 months or so now

besidew the numbness, biggest issue I have to deal with is constipation related to the nerve damage..freakin horrible change in quality of life..I hate it

feel better my friend and keep in touch if you are inclined

[davemon1953]

For the veins I have no idea. I did do the breaststroke rigorously for 20 years. Maybe that was too much? I am 58 now. I DID pick up bicycling last year and started off doing about 100 miles a week. I had no issues and stopped for the winter months. Six months after that I woke up one day with pelvic pain. Now my exercise is a walk around the block. I can not sit. The hard thing is fighting the depression and the daily pain. Some days I want to just lie down, for good. I can fight but I have nothing TO fight since I have no diagnosis except the pelvic congestion thing. If that coil embolization does work over the next 10 days I will be sure to post here. I feel your pain............

[christi]

Hi Dave,

I don't have much to offer, except to avoid sitting at all. I know, it's hard to have a life without sitting, but I believe it's really important to not aggravate the PNE nerves further so they have a chance to heal. I'm in so much less pain now, after not sitting for a year...

Also, swimming has helped me a lot. NOT breaststroke, as the frog kick is aggravated those nerves. But doing many laps of the crawl (without kicking), almost daily, has kept me sane and given me some form of doable exercise...

For what it's worth,
Christi

[davemon1953]

Yes I have standing desk and i avoid car rides. I would love to get back into that pool put my pelvis just hurts too much.

[Lernica]

Davemom,

You can totally get back in the pool! Just use a floaty between your legs and do the front crawl using your arms only. I've done this for years, get a good workout, and feel great afterwards.

Best wishes.

[pn_person]

For the veins I have no idea. I did do the breaststroke rigorously for 20 years. Maybe that was too much? I am 58 now. I DID pick up bicycling last year and started off doing about 100 miles a week. I had no issues and stopped for the winter months. Six months after that I woke up one day with pelvic pain. Now my exercise is a walk around the block. I can not sit. The hard thing is fighting the depression and the daily pain. Some days I want to just lie down, for good. I can fight but I have nothing TO fight since I have no diagnosis except the pelvic congestion thing. If that coil embolization does work over the next 10 days I will be sure to post here. I feel your pain............

wow, the bike riding would be a classic reason, but not with that LONG delay, weird, just like me, can't figure it

the congested veins were diagnosed with a venogram, or with some scan prior to the venogram, and the venogram was just done during the treatment of embolizing the veins?

I am a computer programmer and sit all day..getting some standing setup would be a good idea for me too, I will look into that

[davemon1953]

the ergotron device converts a sitting desk into a standing desk. I have one, works well.
http://www.ergotron.com/tabid/71/Default.aspx

the congested veins were found on Mr Neurography at Johns Hopkins. The venogram confirmed it and they did the embolism at same time.