New New Person with pudendal nerve disorder
Posted: Thu Jul 09, 2015 5:57 pm
My wife formulated my case, cause she's a physician. And she walks me patiently through this physio and psycho suffering that has been bothering me a year now. Which seems not to be long, from the perspective of so many other sufferers I' ve just discovered here and on Internet as well. Here goes:
"I'm a neonatologist, a Head of 3rd level Nicu in Zagreb, Croatia. I'm writting on behalf of my husband, the sufferer. He is a speech language therapist on the pediatric ward of the one of Croatian rehabilitation hospital, and he has a pudendal neuralgy, according to our specialist team.
It started a year ago, with nubness in the feet and feeling of a lump or foreign body deep in the rectum, with simultaneous pain in the perineum especcialy during sitting. The pain was spreading to left scrotum and testis, particularly the left one. At first, the pain was intermitent, delayed, mostly in the evening, growing into generilased myalgia and he lied down in fetal position with the cushon betwen his legs. He lost 13 kilograms, also, during just a couple of months.
In the first 2 months he could sit on occasion.
Well, we performed all checkings :
• gastroscopy- because he lost so much weight- normal findings
• colonoscopy-some benign polyps, PHD were normal
• urologists - several times- prostatitis chronica- they all stuck so firmly to that diagnosis. No trace of "thinking out of the box".
• cystoscopy- the blader was normal, in the uretra, they found some wrinkles of the mucosa, but that disapeard after instalation of fisiologic solution (0.9% solution of sodium)
• His imunoglobulins ( electrophoresis of IgG, IgA,IgM) were normal – we were afraid of the plasmocytoma
• NMR of lumbosacral spine with contrast -> extrusio of central regia IV disc L5-S1 with narowing of epidural space but without any sign of compression on the dura and neuronal roots. Bulging of L3-L4 discs with sign of anulus lesion.The posterior intercorporal line was normal, as morfology and position of medulla conus. Cauda equina didn't show any compression or patological postcontrast imbibition , like LS plexus. The pelvis with proximal parts of both femur were normal, without any expansive process. The structure of all checked bones of pelvis showed inhomogenicity as the consequences of distribution of the fat and hematopoetic activity, without osteolysis. Expressed angulations from first to second part of the coccigys with inhomogen structure and mild oedema in the first segment of the coccigys points to trauma, wich possibly could be the cause of the problems.?
• Xray of spine, pelvis and femurs – some osteolitic changes
• Scintigraphy noted degenerative symetrical changes intu shoulder, elbow, pelvis, femur- without any neoplastic process
• PET CT (from basis of skull)- showed the prostatolities (chronic prostatitis as trigger?) , other was ok.
• CT of thorax and abdomen-normal findings.
• EMNG of legs- the findings indicated the moderate chronic compensate lesion left L5 and mild lesion left S1, S2 with the lesions right L5- S1.
The colegues were thinking it's the chronic prostatitis at first, and he recivied manny antibiotics ( gentamycin twice through 2-3 weeks, than ertapanem through 6 days- , as he is allergic on kinolon antibiotics and sulfametoxazol and trimetoprim). The pain have been worsering, and my husband couldn't sit and walk. He can sit only on the antidecubital cushion just for 10-20 minutes (from August 2014., and lately only for couple of minutes!).
He fell on his buttocs when he was a child - 40 years ago. He takes the bus while going to work (80 minutes for both directions). The ride is especially traumatic on his way back home, although he sits on his antidecubital cushion. Not possible to stand in the bus.
His neurologist administrated Lyrica (pregabalin) – 3x 150 mg ; baclofen 3x 10 mg; amyzol (amitriptyline hydrochloride) 40 mg at evening. And on daily bases he uses ibuprofen 2 g. He felt better and reduced the use of ibuprofen and tramadolor ( he used tramadolor a 50 mg 1-2 tablets ). But then the worm weather period started, and buses taking him to work started the use the airconditioning, lowering the temperature which caused the return of the stabbing or burning pain in the perineum and scrotum (after couple of hours). The pain is always delayed after a provocation. Dexamethason helps significantly and now he is on the therapy with dexa through 5-6 days.
And I am afraid because he sweatting a lot at night, without pain.
Please help us, because his neurologist contacted other collegues, but in Croatia nobody ever had a similar case. She also contacted collegues at Denmark and US, but they didn't help much.
The next step which his neurologist has in plan is 3 Tesla NMR, but I am very suspicous that we have appropriate software for diagnosis of pudendal damages.
Well, my all hope is aimed at reducing his pain and bringing him his life back.
Sincerely
Snjezana Gveric- Ahmetasevic, PhD, MD
Pediatrician- neonatologist"
My wife vigoroulsy and eagerly went through and through the Internet (and not just there) to help me, although she was discharged from the hospital after the pace maker implantation just a couple of days ago, cause of her own heart problems.
That covers it all, I guess. Loosing almost 90% of my life quality is...well, needless to explain here. How to bring my life back? At the begining of it all I thought that if I'm going to have to stand and not be able to sit for the rest of my life...well, so let it be! Knew it'll not be easy. So far so...not good but tolerable.
Living in the country like this, where there are literaly hundreds of good doctors, but all went abroad from this ...system that value soccer and it's "problems and needs" more than elementary human needs like medicine....
My eager wife and my (still, but don't know for how much long) neurologist are all I have now. We'll se. At least, after reading some excellent articles on Health Organization For Pudendal Education blog, I could feel lucky at least being diagnosed properly "so quickly". Early diagnosis but none to help. Great!
It's not nice, maybe, to say it...but...I'm glad I'm not alone.
But I do, really, and from the bottom of my heart, wish that every and each one of you PN sufferers here find your way out of this pain, and bring your life back!
Very, very best wishes
amer Ahmetasevic
Zagreb
Croatia
Europe
"I'm a neonatologist, a Head of 3rd level Nicu in Zagreb, Croatia. I'm writting on behalf of my husband, the sufferer. He is a speech language therapist on the pediatric ward of the one of Croatian rehabilitation hospital, and he has a pudendal neuralgy, according to our specialist team.
It started a year ago, with nubness in the feet and feeling of a lump or foreign body deep in the rectum, with simultaneous pain in the perineum especcialy during sitting. The pain was spreading to left scrotum and testis, particularly the left one. At first, the pain was intermitent, delayed, mostly in the evening, growing into generilased myalgia and he lied down in fetal position with the cushon betwen his legs. He lost 13 kilograms, also, during just a couple of months.
In the first 2 months he could sit on occasion.
Well, we performed all checkings :
• gastroscopy- because he lost so much weight- normal findings
• colonoscopy-some benign polyps, PHD were normal
• urologists - several times- prostatitis chronica- they all stuck so firmly to that diagnosis. No trace of "thinking out of the box".
• cystoscopy- the blader was normal, in the uretra, they found some wrinkles of the mucosa, but that disapeard after instalation of fisiologic solution (0.9% solution of sodium)
• His imunoglobulins ( electrophoresis of IgG, IgA,IgM) were normal – we were afraid of the plasmocytoma
• NMR of lumbosacral spine with contrast -> extrusio of central regia IV disc L5-S1 with narowing of epidural space but without any sign of compression on the dura and neuronal roots. Bulging of L3-L4 discs with sign of anulus lesion.The posterior intercorporal line was normal, as morfology and position of medulla conus. Cauda equina didn't show any compression or patological postcontrast imbibition , like LS plexus. The pelvis with proximal parts of both femur were normal, without any expansive process. The structure of all checked bones of pelvis showed inhomogenicity as the consequences of distribution of the fat and hematopoetic activity, without osteolysis. Expressed angulations from first to second part of the coccigys with inhomogen structure and mild oedema in the first segment of the coccigys points to trauma, wich possibly could be the cause of the problems.?
• Xray of spine, pelvis and femurs – some osteolitic changes
• Scintigraphy noted degenerative symetrical changes intu shoulder, elbow, pelvis, femur- without any neoplastic process
• PET CT (from basis of skull)- showed the prostatolities (chronic prostatitis as trigger?) , other was ok.
• CT of thorax and abdomen-normal findings.
• EMNG of legs- the findings indicated the moderate chronic compensate lesion left L5 and mild lesion left S1, S2 with the lesions right L5- S1.
The colegues were thinking it's the chronic prostatitis at first, and he recivied manny antibiotics ( gentamycin twice through 2-3 weeks, than ertapanem through 6 days- , as he is allergic on kinolon antibiotics and sulfametoxazol and trimetoprim). The pain have been worsering, and my husband couldn't sit and walk. He can sit only on the antidecubital cushion just for 10-20 minutes (from August 2014., and lately only for couple of minutes!).
He fell on his buttocs when he was a child - 40 years ago. He takes the bus while going to work (80 minutes for both directions). The ride is especially traumatic on his way back home, although he sits on his antidecubital cushion. Not possible to stand in the bus.
His neurologist administrated Lyrica (pregabalin) – 3x 150 mg ; baclofen 3x 10 mg; amyzol (amitriptyline hydrochloride) 40 mg at evening. And on daily bases he uses ibuprofen 2 g. He felt better and reduced the use of ibuprofen and tramadolor ( he used tramadolor a 50 mg 1-2 tablets ). But then the worm weather period started, and buses taking him to work started the use the airconditioning, lowering the temperature which caused the return of the stabbing or burning pain in the perineum and scrotum (after couple of hours). The pain is always delayed after a provocation. Dexamethason helps significantly and now he is on the therapy with dexa through 5-6 days.
And I am afraid because he sweatting a lot at night, without pain.
Please help us, because his neurologist contacted other collegues, but in Croatia nobody ever had a similar case. She also contacted collegues at Denmark and US, but they didn't help much.
The next step which his neurologist has in plan is 3 Tesla NMR, but I am very suspicous that we have appropriate software for diagnosis of pudendal damages.
Well, my all hope is aimed at reducing his pain and bringing him his life back.
Sincerely
Snjezana Gveric- Ahmetasevic, PhD, MD
Pediatrician- neonatologist"
My wife vigoroulsy and eagerly went through and through the Internet (and not just there) to help me, although she was discharged from the hospital after the pace maker implantation just a couple of days ago, cause of her own heart problems.
That covers it all, I guess. Loosing almost 90% of my life quality is...well, needless to explain here. How to bring my life back? At the begining of it all I thought that if I'm going to have to stand and not be able to sit for the rest of my life...well, so let it be! Knew it'll not be easy. So far so...not good but tolerable.
Living in the country like this, where there are literaly hundreds of good doctors, but all went abroad from this ...system that value soccer and it's "problems and needs" more than elementary human needs like medicine....
My eager wife and my (still, but don't know for how much long) neurologist are all I have now. We'll se. At least, after reading some excellent articles on Health Organization For Pudendal Education blog, I could feel lucky at least being diagnosed properly "so quickly". Early diagnosis but none to help. Great!
It's not nice, maybe, to say it...but...I'm glad I'm not alone.
But I do, really, and from the bottom of my heart, wish that every and each one of you PN sufferers here find your way out of this pain, and bring your life back!
Very, very best wishes
amer Ahmetasevic
Zagreb
Croatia
Europe