Any experience with DRG stimulator for pudendal neuralgia?

Posted by docmgmatt @docmgmatt, Sat, Feb 8 9:42am

Has anyone tried implanted DRG stimulator for pudendal neuralgia?

No not yet but I’m willing to try anything just waiting on my doctor to tell me the next move! This is the most horrible thing ever! Can u tell me what you have done and what meds u take? I can’t sit down at all and I haven’t been able to find any pillows that will allow me to sit down if I do sit down on it Has to be on ice packs. Two years of this

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@vklittle61

No not yet but I’m willing to try anything just waiting on my doctor to tell me the next move! This is the most horrible thing ever! Can u tell me what you have done and what meds u take? I can’t sit down at all and I haven’t been able to find any pillows that will allow me to sit down if I do sit down on it Has to be on ice packs. Two years of this

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So very sorry for what you are experiencing. (I'm a psych RN and Hypnotist) I know how this affects your very existence..My mom had SI ( sacroiliac) joint pain….so severe that she couldn't lie or sit for 4 months without severe neuro pain. It was also hell to watch. We did ice/ heat/ aromatherapy/ creams/ pain med..Hypnosis helped distract her. ( she also has very good coping) what worked was seeing Eric Helm, a pain med doc in pittaburgh area. Initial injections diagnostic to determine if RFA ( rhizotomy) would help and there was relief. She then had rhizotomy and pain is gone. It burns nerves and I read that can be done for PN. She can have it done again. Read about your condition and tx in Ainsworth Pain Institue New York. My heart goes out to you…you will find relief. I know that anxiety/ depression/ anticipation of pain exacerbates pain. Hypnosis can help us "re-process" the pain. Maybe displace it somewhere (hypnotically) where we can manage it better…I create hypnosis audios and can do a pain audio

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@vklittle61

No not yet but I’m willing to try anything just waiting on my doctor to tell me the next move! This is the most horrible thing ever! Can u tell me what you have done and what meds u take? I can’t sit down at all and I haven’t been able to find any pillows that will allow me to sit down if I do sit down on it Has to be on ice packs. Two years of this

Jump to this post

The Dellon Institute has surgery for pudendal neuralgia but they don't really have any good way to diagnose. I suppose if you already have diagnosis, that would help. Germany has an institute to deal with pelvic problems under Dr. Posson, but it is Germany so may be difficult to try them. Pain management doesn't always treat this, but some pm docs will do injection and maybe RFA. RFA can cause nerve damage so it is not always best step according to peripheral nerve specialists that do the surgical release. However, surgery has a lot of risks unless surgeon has done a lot of these releases. I don't believe pelvic floor therapy makes much difference, but that is another safer option. Using special cushions with the center line where perineum sits cut out of foam is helpful and cheapest treatment.

Liked by lioness

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@vklittle61

No not yet but I’m willing to try anything just waiting on my doctor to tell me the next move! This is the most horrible thing ever! Can u tell me what you have done and what meds u take? I can’t sit down at all and I haven’t been able to find any pillows that will allow me to sit down if I do sit down on it Has to be on ice packs. Two years of this

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@vklittle61 So sorry they haven't found anything to help I don't know if I have this but when I sit-down my pain is in both groin areas is this where your pain is?

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@lioness

@vklittle61 So sorry they haven't found anything to help I don't know if I have this but when I sit-down my pain is in both groin areas is this where your pain is?

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My pain is when I sit down like on the sits bones goes up my behind on each side and in the middle of my behind! Also pain when standing now! It’s like a giant lobster pinching you between the legs

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@mesmerizing1

So very sorry for what you are experiencing. (I'm a psych RN and Hypnotist) I know how this affects your very existence..My mom had SI ( sacroiliac) joint pain….so severe that she couldn't lie or sit for 4 months without severe neuro pain. It was also hell to watch. We did ice/ heat/ aromatherapy/ creams/ pain med..Hypnosis helped distract her. ( she also has very good coping) what worked was seeing Eric Helm, a pain med doc in pittaburgh area. Initial injections diagnostic to determine if RFA ( rhizotomy) would help and there was relief. She then had rhizotomy and pain is gone. It burns nerves and I read that can be done for PN. She can have it done again. Read about your condition and tx in Ainsworth Pain Institue New York. My heart goes out to you…you will find relief. I know that anxiety/ depression/ anticipation of pain exacerbates pain. Hypnosis can help us "re-process" the pain. Maybe displace it somewhere (hypnotically) where we can manage it better…I create hypnosis audios and can do a pain audio

Jump to this post

I have done radio frequency ablation and it did not help. I may be interested in your hypnosis techniques how do I do this?

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@jobby99

The Dellon Institute has surgery for pudendal neuralgia but they don't really have any good way to diagnose. I suppose if you already have diagnosis, that would help. Germany has an institute to deal with pelvic problems under Dr. Posson, but it is Germany so may be difficult to try them. Pain management doesn't always treat this, but some pm docs will do injection and maybe RFA. RFA can cause nerve damage so it is not always best step according to peripheral nerve specialists that do the surgical release. However, surgery has a lot of risks unless surgeon has done a lot of these releases. I don't believe pelvic floor therapy makes much difference, but that is another safer option. Using special cushions with the center line where perineum sits cut out of foam is helpful and cheapest treatment.

Jump to this post

I haven’t found any cushions that are comfortable for me to sit on with a cut out in the middle. If there is a cut out it doesn’t seem to be large enough. The toilet seat is ideal for me but none of my body can be touching the seat when I sit down . Do you know of any cushions? I have looked and looked and looked. Thank you for your help. I have purchased many cushions and none of them can help me

Liked by swift

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@vklittle61

My pain is when I sit down like on the sits bones goes up my behind on each side and in the middle of my behind! Also pain when standing now! It’s like a giant lobster pinching you between the legs

Jump to this post

@vklittle61 Ouch sounds bad. Suggestion have you tried the pillow that is open in middle it's for the tailbone but may work for you

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@lioness

@vklittle61 Ouch sounds bad. Suggestion have you tried the pillow that is open in middle it's for the tailbone but may work for you

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Yes I’ve tried it

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@jobby99

The Dellon Institute has surgery for pudendal neuralgia but they don't really have any good way to diagnose. I suppose if you already have diagnosis, that would help. Germany has an institute to deal with pelvic problems under Dr. Posson, but it is Germany so may be difficult to try them. Pain management doesn't always treat this, but some pm docs will do injection and maybe RFA. RFA can cause nerve damage so it is not always best step according to peripheral nerve specialists that do the surgical release. However, surgery has a lot of risks unless surgeon has done a lot of these releases. I don't believe pelvic floor therapy makes much difference, but that is another safer option. Using special cushions with the center line where perineum sits cut out of foam is helpful and cheapest treatment.

Jump to this post

What cushion do you use? Sorry I may have already asked you this but I talk to so many people and I can’t remember if it with you. I cannot find any commissions to help me please if you know of one let me know and I would like to know the name of it and where you got it

REPLY
@mesmerizing1

So very sorry for what you are experiencing. (I'm a psych RN and Hypnotist) I know how this affects your very existence..My mom had SI ( sacroiliac) joint pain….so severe that she couldn't lie or sit for 4 months without severe neuro pain. It was also hell to watch. We did ice/ heat/ aromatherapy/ creams/ pain med..Hypnosis helped distract her. ( she also has very good coping) what worked was seeing Eric Helm, a pain med doc in pittaburgh area. Initial injections diagnostic to determine if RFA ( rhizotomy) would help and there was relief. She then had rhizotomy and pain is gone. It burns nerves and I read that can be done for PN. She can have it done again. Read about your condition and tx in Ainsworth Pain Institue New York. My heart goes out to you…you will find relief. I know that anxiety/ depression/ anticipation of pain exacerbates pain. Hypnosis can help us "re-process" the pain. Maybe displace it somewhere (hypnotically) where we can manage it better…I create hypnosis audios and can do a pain audio

Jump to this post

Have you had a MRI with contrast to your pelvic area to see if you have Arachnoititis. That is what I did with not the recomendation of my surgeon's and found I have that terrible disease. Look up that condition and see if you have those systoms.

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@donfeld

Have you had a MRI with contrast to your pelvic area to see if you have Arachnoititis. That is what I did with not the recomendation of my surgeon's and found I have that terrible disease. Look up that condition and see if you have those systoms.

Jump to this post

No I will google it

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