WE NEED TO KNOW WHY

[Missingmylife42]

Befor I went to dr A i had three pn blocks never goit numb at all. I could sit had no rectal burning no buttock burning. Anyways went to dr a gave me pn blocks but when he did it he put needle in and kept moving it around and pulling it oit a little like my butt was a piece of bread and he was poking it with a needle. He kept sayng do u feel it here here herre. I said no no no no. I felt nothing unlike I had with dr q I could feel when he touched something and that's when he injected it. But dr a just injected where he wanted I guess. So here I am still now sinjce his injection b urning rectum burning buttoks hot buttocks can't sit. Vagina burns thighs can't lay only relief walking and standing. Lower back b urns. Above pubic area burns. He gave me three needles and belly too cause I told him I was having vibration feelings on my low right side. The burning I have now is unexplainable. Me and my husband now its from the last injectuon. How does thbis bhappen. I never got numb with any iof the in jections. Can't have sex before dr a had sex but major pulasting feeling way up in vagina after...not sure if it was from the intercurse or orgasms but the fact was we could have sex. No nothing sex dr a. So he hurt me. How do I fix this. I see that people get worse from the last injection. What does that mean that u need surgery cause the injection made the nerve worse. Can someone explain this. And how do I help myself with this intense burning. Meds what are you all on... this has gotten so out of control. All started from a hyterctomy then yreast infections than a burning clitoris than a feeling in the vagina. God help me. Sorry for the jumping around.

[AliPasha1]

Dr. A is definitely responsible for what happened to you and made your symptoms worse.His poking of the Pudendal Nerve as well as other nerves flared the set of nerves and left you in such a miserable position.

In my case,Dr. Q did the most damage especially on my right side.In 2007,all my issues were on the left side and my right side was perfectly normal.It must be noted that I had no sitting pain on either side at that time,just rectal burning on the left side which would radiate all the way to the left side of my Penis in additon to Urinary Frequency,Urinary burning and Post Ejaculation burning.Dr. Mark Conway specifically wrote in his notes to Dr. Q to do
the PN block on the left side.My EMG testing was quite high on the left side which correlated with my symptoms ans slightly higher on the right side which had no issues at all. Dr. Q took the decision in his own hands and injected both sides just based on EMG testing results.

After the bilateral Nerve blocks I developed bilateral sitting pain which I still this day and I developed electirc shocks,bladder issues,bowel problems on my right side which was perfectly normal before the PN block.I endured these new symptoms on the right side for almost 1.5 years constantly.The sitting pain on either side never went away.

The French doctors Professoor Robert of Nantes,France and Dr. Eric Bautrant of Aix En Provence who were the poineers of EMG/PNMLT testing and used them for diagnostic purposes have totally disgarded the EMG/PNMLT testing alltogether in the last two years.Their reasoning being that it is an unreliable tool for diagnostic purposes.

Just based on sightly higher EMG testing, he wrote that the new Pain on the right side was due to myofascial reaction.
I would say that Dr. Michael Hibner is really intelligent.When I saw him in late 2008,he told me straight away that EMG/PNMLT testing has no diagnostic value.

I had my surgery with Dr. Bautrant in the beginning of last year which made my sitting pain worse and I lost my job in the process.It has been 11 months since my surgery and I am still waiting for anything positive from my surgery in France so far.

My next step is to have Dorsal nerve Decompression surgery and then proceed with the left sided Pudendal Nerve surgery with Dr. Hibner on 25th ,April,2011.

Who is to be blamed in my case?Is it the French doctors who are the pioneers in this field or Dr. Q who did the Pudendal nerve block on my right side just based on EMG testing.I will leave the decision to the forum members to decide.


I am a 36 year old male and my symptoms started in 2004 when I was 30.This is my sad story.

Coclusion:All doctors should be held accountable when the result of a surgery isn't satisfactory or the symptoms become worse after the surgery.The same rule should be applied to any Pudendal nerve blocks or any block which makes the patients' symptoms worse than before on a permenant basisThe patients aren't some lab animals that should be used for experimental purposes.
Regards,
Ali

[Missingmylife42]

So Dr A did this to me, will the nerve heal on the own or does it need surgery, i am in so much pain he has destroyed my life why would he have given me blocks if he knew the others didnt make me numb i hate these doctors :,( we are so sad.... i am so scared, my vagiina feels so weird too, now the constpation is starting, never did i have that, and the burning is starting with bowel bovements... did he cut my nerve, did he nick my nerve are there other nerves he could have nicked.. i feel like writing him a letter, i cant sue him, this is so bad.. this is inhumane to suffer this way, i cand bend i cant squat i cant sit i cant lay i cant lay on my side nothing, medications have to help me!!!! the nerve has to heal ... how can an injection make you worse, if i didnt have any of these symptoms before, :,( i cant stop crying today.

[sgrandy]

Go see Dr. Hibner to get proper treatment...that is what you need to do.

Ali,

Nerve blocks are not really experimental and all procedures come with a certain degree of risk. I think most of the doctors' intent is to help...not hurt...but unfortunately it seems that some people have bad reactions that may, in fact, be permanent which is why patients have to weigh their options and then decide to take the risk or not take it. It is the same with surgery....patients have to decide to take the risk of having it and getting well or having it and staying the same OR having it and possibly getting worse. The burden of responsibility should not fall soley on the surgeon's shoulders unless that person is grossly negligent in some way.

[Missingmylife42]

The sad thing is no doctor told me it could make me worse. Only flares That will go away

[sgrandy]

Well, getting permanently worse is not the typical result although it definitely can happen. I would think the more blocks you have the more likely it is to have a more extreme result. It might be a bit like tempting fate...

[AliPasha1]

Sgrandy,
Since,I had no issues on the rightside,I told Dr. Q whether it was a good idea to have it done on the right side.His answer was that is a pretty safe procedure and there would be no complications or risks involved.I can just state that how wrong he was.I didn't even know what PNE was at that time.I completely placed my trust in Dr. Q
Physically,my life wasn't limitedland I was running 5 miles fout times a day,playing soccer at least once and I never had any sitting Pain.
I would agree that I had rectal burning which was radiate all the way to my Penis on the left side accompanied with Urethera burning,Urinary frquency,Urgency ,Post ejaculation burning but no sitting Pain.

Missing mylife42,
I am hopeful that the flare would settle down ,but it will take a few months.On the other hand,please proceed with your plans with Dr. Hibner and hopefully all this would a be a thing of the past.

Regards,
Ali

[donstore]

Ali,
Did you get blocks from Dr. Weiss ? Was there any effect (diagnostic or otherwise) ? I got a finger guided block from him and the sciatica in my left leg is just starting to fade 4 months later. Had PNMLT on last Friday at UCSF and they told me when I asked that it was 2.0 on both sides. Does this make sense ? I have most of Nantes Criteria but pain is not disabling with medication. Did Dr. Quesada use CT guidance ? Does Dr. Antolak ? Does it matter ? Do you have an opinion on Dr. Jordan ? Didn't realize you were so young. This problem is bad for anyone but doubly unfair for someone your age. Hope it all works out. Thanks for your posts.

Best Wishes,
Don

[pianogal]

I will attest to the fact that I got a huge 2-4 month flare from my Pudendal Block by Dr. Antolak (even though it was CT guided) but I have had pudendal blocks before and after Dr. Antolak's which did NOT flare me ever. I am convinced Dr. Antolak's poking and prodding caused the flare. He gets right on the nerve, moves around... it is excruciating during, it didn't numb me after hardly at all, and I was quite flared after. I still have more urinary issues since that block. He wanted me to come for more. I was too afraid to... I'm glad I didn't.

Docs that did not flare me when doing the nerve block as follows: Dr. Renney - ct guided, Dr. Filler - ct guided, Dr. Noblett (at Julie Sarton's office @ UCI) -finger guided, Dr. Hibner - finger guided.

Your flare should settle down some I hope. I am so sorry you have to be experiencing this. PNE sucks.

I think writing him a letter politely to let him know what happened would be wise. At least he can know this for future reference. I should write him too. How many more people have to be damaged by this poking and prodding to try to get the right spot. That's just not wise... and it's a brutal procedure to go through.

[AliPasha1]

Hi Don,
I was diagnosed by Dr. Jerome Weiss in June of 2007 for PNE in SF.The Heparin unguided injection by Dr. Weiss was far better than Dr. Quesada's Fluouroscopic Guided Injection.It gave me a slight flare ,but everything returned to normal in two weeks.Since,I was living on the East coast at that time and my trips to SF were getting expensive since Dr. Weiss doesn't take insurance and the hotel costs as well flight fares were adding up I had to see somebody on the East Coast.
.Since Dr. Weiss was so much against surgery at that time,he told me to get another PN block and hence I made an appointment with Dr. Mark Conway/Dr. Quesada.
My EMG scores were abnormal on both sides. MY left side was 7.0 ms and right 3.8 ms which was slightly higher.

Both the EMG testing and PNMLT testing have been discarded by the French pioneers now i.e Eric Bautrant along with Dr. De Bishop who developed the EMG testing for surgery and diagnostic purposes as well as the Nantes team headed by Professor Robert. It is only being used by the Houston team at the moment or by Dr. Jordan for diagnostic purposes.

My sincere advise would be to go Dr. Potter for an MRI analysis and then head to Dr. Hibner.It is quite possible that the dorsal branch instead of the main Pudendal branch could be the culprit.



Did you find any relief from your block from Dr Weiss by any chance?

I am an unlucky young man,but I am confident and hopeful that Dr. Hibner 's redo surgery would be helpful.

All the best.
Regards,
Ali