Hi April,
I have been checking ur post for a while, I am really wish you will be 100% cured from the decompression surgery.
I am still debating on decompression surgery vs DRG.
I make a lot sense to do decompression first, if failed then DRG.
But since decompression needs a lot of time to recover( one year plus), I probably will lose the new job again.
just FYI, I still own Dr Coleman 18K, because I had Aetna at the time of surgery, and he only take BCBS. So even thought i already meet my out of network out of pocket maximum, the insurance only agreed to pay him 17.5K + my 2500 deposit. he charged me total of 38K(just surgeon fee). tripled what HSS charged my insurance.
So i really need to save some money to pay out my debt and also 1 - 2 year of living spend if i decide to do the decompression surgery.
Best regards,
Josh
Question about my MRN
Re: Question about my MRN
Wow, that's tough to be saddled with all of that debt, Joshua. I think the plan Dr. Hunter has presented makes a lot of sense from the standpoint of pain management.
My understanding is that a good MRN is comparable to a good 3T MRI. I did not have a pelvic MRI or MRN before my surgery because most everything else was pointing toward nerve entrapment. If you have a good MRN report, I'm not sure it would be worth it to pay any extra for the MRI. If your insurance covers it at 100% that's one thing, but paying a lot out of pocket is another.
If you decide you want to try for surgery you need to be sure that everything is pointing toward nerve entrapment -- your PN blocks, history, and symptoms, etc.
Violet
My understanding is that a good MRN is comparable to a good 3T MRI. I did not have a pelvic MRI or MRN before my surgery because most everything else was pointing toward nerve entrapment. If you have a good MRN report, I'm not sure it would be worth it to pay any extra for the MRI. If your insurance covers it at 100% that's one thing, but paying a lot out of pocket is another.
If you decide you want to try for surgery you need to be sure that everything is pointing toward nerve entrapment -- your PN blocks, history, and symptoms, etc.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Question about my MRN
Thank you Violet for the heads up. I have a punch of trigger point injections which help me by reduce the pain by 40 -50%.
And i had a pudendal nerve block done by Dr. Jason Siefferman, and I didn't feel any sign of pain reduction.
I hope Dr. Hunter can make some different. have my finger crossed.
I just recently research on obturator internus muscle, and i come across this video:
https://www.youtube.com/watch?v=00Yc0vw4_KU
And i did the test myself at home. At first, i didn't feel the pain right away, but after 1 - 2 mins, the pain on my left sit bone and perineum started.
could all those pain caused by obturator internus muscle? But some of my daily daily covers that muscle.
I think i may ask Dr Hunter for a shot of the muscle on my next appointment.
best,
Josh
And i had a pudendal nerve block done by Dr. Jason Siefferman, and I didn't feel any sign of pain reduction.
I hope Dr. Hunter can make some different. have my finger crossed.
I just recently research on obturator internus muscle, and i come across this video:
https://www.youtube.com/watch?v=00Yc0vw4_KU
And i did the test myself at home. At first, i didn't feel the pain right away, but after 1 - 2 mins, the pain on my left sit bone and perineum started.
could all those pain caused by obturator internus muscle? But some of my daily daily covers that muscle.
I think i may ask Dr Hunter for a shot of the muscle on my next appointment.
best,
Josh
Re: Question about my MRN
Josh, it can be difficult to determine if the muscle is the primary source of the problem and then it goes into spam and impinges on the pudendal nerve causing PN irritation, or if it's the other way around with the pudendal nerve being irritated for some other reason, possibly due to ligament impingement, and with the PN irritated it causes the obturator internus muscle spasm to go into spasm.
Often the pain from PN refers to other parts of the pelvis so I think it could cause pain in the area of the sit bone and perineum.
Violet
Often the pain from PN refers to other parts of the pelvis so I think it could cause pain in the area of the sit bone and perineum.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Question about my MRN
Hi,
Online and reading your story. I don't have any medical advise for you but just wanted you to know my leg is involved somehow too. I normally stay home these days and do things here or there. Just when i think im having a better day (no days are pain free as it is chronic) I venture to the store (never Cosco..too much walking) my left leg starts acting up and i can't follow through with it. I have read other posts and people are not mentioning the leg involvement. I have left vaginal, rectal, sit bone, and lower abdominal hip pain and was diagnosed with PN, Piriformis, and GenitoFemoral neuralgia. I can walk thankfully, and it doesn't give out, but it definately acts up and hurts and left me with a limp. I have got stuck in the middle of the store, had to leave my items, and wobble back to my car. I recently had an evaluation with Dr. Hibner in Arizona. They definitely agree i have pudendal nerve issues and think the leg involvement is possibly from my obturator muscle and my psoas muscle. They plan on injecting these muscles with botox along with other spots and a pudendal nerve block when i return. There advise is all these procedures need to be done simultaneously along with medication to relax pelvic muscles and pelvic therapy for best results. I learned more from this appointment than i have after years of multiple appts, surgeries, and scheduling. I left with a renewed sense of hope. Just want you to know your not the only one with the leg symptom. Hope you find some help.
Online and reading your story. I don't have any medical advise for you but just wanted you to know my leg is involved somehow too. I normally stay home these days and do things here or there. Just when i think im having a better day (no days are pain free as it is chronic) I venture to the store (never Cosco..too much walking) my left leg starts acting up and i can't follow through with it. I have read other posts and people are not mentioning the leg involvement. I have left vaginal, rectal, sit bone, and lower abdominal hip pain and was diagnosed with PN, Piriformis, and GenitoFemoral neuralgia. I can walk thankfully, and it doesn't give out, but it definately acts up and hurts and left me with a limp. I have got stuck in the middle of the store, had to leave my items, and wobble back to my car. I recently had an evaluation with Dr. Hibner in Arizona. They definitely agree i have pudendal nerve issues and think the leg involvement is possibly from my obturator muscle and my psoas muscle. They plan on injecting these muscles with botox along with other spots and a pudendal nerve block when i return. There advise is all these procedures need to be done simultaneously along with medication to relax pelvic muscles and pelvic therapy for best results. I learned more from this appointment than i have after years of multiple appts, surgeries, and scheduling. I left with a renewed sense of hope. Just want you to know your not the only one with the leg symptom. Hope you find some help.
Re: Question about my MRN
Thank you for the information AuntNetty.
there are some quick update to my injections.
Injection #1 => Pudendal nerve block with just numbing agent(high dosage)
(I should have the Injection on Feb-21-2019, but got pushed back by Dr. Hunter. So I have to reschedule it to Feb-25-2019 ==> hate this)
--> It worked right away, left side of my butt crack, left perineum, left Testicle and genital are fully numb.
--> Be able to walk without any pain.
--> Be able to sit for 30 mins. (I am scared of sitting now, so this is why i did not try for sitting whole day)
--> Feeling weak and some strange discomfort, But over all 80% - 90% pain reduction.
--> Next day, Ugh, everything back to normal.
Injection #2 => Pudendal nerve block with Cortisone
(On March-04-2019)
--> I believe he reduced dosage of numbing agent, because i don't feel the numbness as before.
--> everything feels the same prior the second injection. same walking pain, same sitting pain.
--> today 03/05/2019, i dont feel little better, not sure it's just my mind(wishful thinking). or the Cortisone is working? i dont know.
My next injection will be 03/14/2019, hopefully not get pushed back again. it will be Radiofrequency Ablation (RFA).
He told me that if i get luck, it may provide a average of 6 month pain reduction or relief. if i am unlucky, it won't work at all. ==> ugh, kill me now.
best,
Josh
there are some quick update to my injections.
Injection #1 => Pudendal nerve block with just numbing agent(high dosage)
(I should have the Injection on Feb-21-2019, but got pushed back by Dr. Hunter. So I have to reschedule it to Feb-25-2019 ==> hate this)
--> It worked right away, left side of my butt crack, left perineum, left Testicle and genital are fully numb.
--> Be able to walk without any pain.
--> Be able to sit for 30 mins. (I am scared of sitting now, so this is why i did not try for sitting whole day)
--> Feeling weak and some strange discomfort, But over all 80% - 90% pain reduction.
--> Next day, Ugh, everything back to normal.
Injection #2 => Pudendal nerve block with Cortisone
(On March-04-2019)
--> I believe he reduced dosage of numbing agent, because i don't feel the numbness as before.
--> everything feels the same prior the second injection. same walking pain, same sitting pain.
--> today 03/05/2019, i dont feel little better, not sure it's just my mind(wishful thinking). or the Cortisone is working? i dont know.
My next injection will be 03/14/2019, hopefully not get pushed back again. it will be Radiofrequency Ablation (RFA).
He told me that if i get luck, it may provide a average of 6 month pain reduction or relief. if i am unlucky, it won't work at all. ==> ugh, kill me now.
best,
Josh
Re: Question about my MRN
Wow,
I hope it works for you. I never had any help with the injections, but i've heard of RFA..don't know much about it. Not to be a negative Nancy, but seems like we just keep trying and trying, and in my cases made worse by trying to treat the pain. Have an upcoming surgery scheduled on April 15th. Lot's of stuff. I will post update. Good Luck...i know it is life changing having this pain in the ***.
I hope it works for you. I never had any help with the injections, but i've heard of RFA..don't know much about it. Not to be a negative Nancy, but seems like we just keep trying and trying, and in my cases made worse by trying to treat the pain. Have an upcoming surgery scheduled on April 15th. Lot's of stuff. I will post update. Good Luck...i know it is life changing having this pain in the ***.
Re: Question about my MRN
Thank you AuntNetty, best of luck to your upcoming surgery. you will be live in pain free within no time 
Re: Question about my MRN
Hi Aunt Netty, so you have surgery scheduled for April 15? That's great! Is it decompression surgery with Hibner? It sounds like you decided to skip the botox since you didn't have insurance coverage for it?
April
April
Re: Question about my MRN
Hi Josh,
It sounds like the injections served their diagnostic purpose given that they reduced you pain. Did the doctor see this as indicating pn? Like Aunt Netty (and many others) I did not have any relief from a block beyond the first few hours, so your experience of being back to normal is common. You may want to think about stopping after two blocks if you don't have any extended relief. They increased my pain somewhat so I stopped after two.
April
It sounds like the injections served their diagnostic purpose given that they reduced you pain. Did the doctor see this as indicating pn? Like Aunt Netty (and many others) I did not have any relief from a block beyond the first few hours, so your experience of being back to normal is common. You may want to think about stopping after two blocks if you don't have any extended relief. They increased my pain somewhat so I stopped after two.
April