Spinal neuromodulation : My nyc pelvic... - Pelvic Pain Suppo...

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Spinal neuromodulation

Rxmom
Rxmom

My nyc pelvic floor specialist reco’d neuromodulatuin to interrupt the pain signals. Have tried all injections, Pt, meds, Botox, impar blocks, etc. would be interested in hearing of others’ experiences w drg implant - pros & cons etc.

my condition is completely confined to cozxyx and rectal pain - 5 years now post fall on tailbone

Thank you in advance

13 Replies
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I have not but would love to also know if it helps! I hope you feel better! Btw could you share who your Nyc Pt is?

Not sure if replied - shrikhande in nyc. Love her & partners. One of them has PN or some kind of pelvic floor issue. They “get it” like no other doc & ive seen docs from mayo, Hopkins, univ of Rochester, Cornell, on & on. Can’t travel to AZ to see that gang. The others were not bad in any way - all knowledgeable & all fairly consistent w therapies. - I needed someone close to north west nj. Can’t sit for more than 2 hrs ... until recently.

Pinky2233
Pinky2233
in reply to Rxmom

Thanks for this! They sound great!

If it’s at all helpful, I have found improvement with pelvic Dry Needling. I also can’t sit much at all (stabbing pain) and I make myself travel to Bethesda Maryland To See the guy that wrote the book on it. He is very knowledgeable with pelvic and dry needling is legal in Maryland. Creating space by releasing all the tissue section by section is helping. Once the area is open a PT can find there trigger point muscle adhesions that cause the feeling of very sharp glass . (Small rice size and shape that even feels sharp to the PT). Do you know if any of the practitioners at Shrikande’s office are IPA trained or anyone specific? Or someone specific? I’ll look into them.

It took awhile to find this combination to help the tissue to release and start to heal.

For what it’s worth,

I also see an herbalist who has me on some magic potion that even in seriously high pain it helps me to sleep so I got off of Klonopin for that. I use the quell and it just takes the edge off

Thanks again keep me posted how you’re doing

Best of luck

Jdobson1128
Jdobson1128
in reply to Rxmom

Stacey futterman Tauriello at five point PT in Manhattan and Millburn NJ is great. She got to the source of my problem after seeing four other PT. My pain was so bad, I left my job and couldn’t sit or stand at all without pain.

Have you tried Quell?

Rxmom
Rxmom
in reply to Pinky2233

Yes didn’t do much

I have been in PT fire 18 months and it helps. Iniatly my therapist could only do external work any internal work would cause very bad pain flairs. After taking CBD oil and using a Quell device my therapist could do internal work. PT helps but anything that activates the pelvic floor causes a pain flair. I can fast walk on a tread mill

I’m in the process of doing one. At first my dr suggested Nevro & I got insurance approval. A few days prior to my trial this week he cancelled my trial & suggested I try DRG pain simulator instead. This one seems to be for more specific pain areas. I need to go through the insurance process now for this one. Good luck.

anne77
anne77
in reply to JLC1

I was just reading about the DRG. Can you please tell me what state you live in?

Rxmom
Rxmom
in reply to JLC1

My doc is recommending drg as well - going thru appeal process now

Ugh

Lmk how u do

Rocky68
Rocky68
in reply to JLC1

Please read my reply to RXMom and previous posts. Rocky68

I had DRG implant six months ago. All pain centered around rectum and perineum. The Stimulator has helped with reduction in spasms, tightening in buttocks and burning. I am having a difficult time getting the correct settings for optimum relief. I will say I am 50% better however I cannot sit very long and when lying down I still have the pressure and some spasms in middle of each buttock. I also have low back/sacrum pain when sitting. I'm not sure at this point if more relief will be obtained but I take two Tramadol 50/day and 10mg of Baclofen. I did cut all off the stimulator at one point to see if I was really being helped. I definitely could tell I was getting some relief once I cut the equipment off as I had four days of unbearable discomfort. Please read previous posts if you'd like more info. Rocky68

Hi I have got a Boston Neuromodulor for pelvic pain especially in my rectum but I find it hard to get the settings just right for full benefit it is quite a complicated stim with 4 wires going to different areas of the pelvis and along each wire it has many electrodes which can be increased or decreased depending on how I feel. I also previous to that stim I had a Medtronic modulator which had only 2 wires and nothing along them to change and it was a waste of a lot of money. I think its wise to try it for yourself because what works in one doesn't necessarily work for another. Ive just had a Ketamine Infusion done over a 10 day period in hospital which is supposed to be a wonderful pain killer but unfortunately for me it hasn't done a thing. So Ive got the attitude that its worth trying anything offered to you as it just maybe the answer. Good luck

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