Can anyone give me medical proof of negative side effects?

[velmartd]

Hi Karyn/Hermajesty,

Thank you for all your input, it at least give me a prospective, what my next step will be on this difficult journey of PN/PNE.

There all very difficult decisions to make, without knowing what your outcome will be, very frustrating...

Yes, I have reached a point where I think, it's almost 1 year, that PT, will not be resolving my issue, so I will discuss with my
husband our next step,

I want to thank you very much for responding to my questions, and how informative this Hope/PN/PNE board is, to all patients
who suffer with PN/PNE. Actually, if it wasn't for the internet, there would be no where to turn to, except at the mercy of
all the medical staff, without knowing how we are truly living. It must have been hard for you, with there was no internet to
diagnose your illness... I will keep you updated on my next step - Velma

[Karyn]

You're welcome, Velma! That's what we're here for.
Wishing you the best and hope you continue to keep us updated about your case.
Kind regards,
Karyn

[Bill W]

Speaking for myself, I had a horrible experience with nerve blocks. I had been scheduled to have a series of five blocks in Maryland. The first two were non events. Minor temporary relief. The third........AND Last was devastating. Where my pain once had at least some "flare cycles," it became permanent with no breaks.

If I could have just one "do over" in all of the treatments I tried, it would be this. I can't say it made the pain worse, but I can promise you, that it made it always.

Again, if I could have just one "do over" it was this. I really didn't think my situation could get worse, but this was the final nail.

[velmartd]

Sorry Bill about the Nerve Blocks. I have had two, one at the PN area, and one at the S1 Nerve Root.

I do have a question for anyone out there, that knows anything about the femoral nerve.

I started reading over my Pelvis MRI without contrast, that I did back in 2/22/2013. I noticed that under
the Summary Area there was an Item that the doctor's never addressed. It has to do with my left hip,
which that is where my PN is on the left. It stated that there are a few cysts next to the neurovascular
bundle containing the femoral nerve. Then goes on to say with the patient's symptoms, there could be
nerve irritation and not be excluded, with left sided femoral Neuropathy is recommended.

Do you think, I should pursue this as maybe a potential reason for the PN Issue on the left, where I am
have pain, and numbness ? Why would the doctors need recommend any testing for this ? What type
of doctor, would I see for this an ortho / neurologist ? I have been to both did not pursue this as maybe,
being the numbness, PN Issue I'm feeling. I'm shocked knowing it was one of the items in the summary.

If anyone has experienced this first hand, please let me know what type of doctor to see, or nerve tests?

I guess we are own best's adovacates, for our illness, taking it a step further, when actual recommendations
are dismissed. Thanks Velma

[Karyn]

Hi Bill,
Yes, I can certainly relate to your nerve block experience. I had a very similar reaction.

Velma - It appears you've got more than one neuropathy going on. There's a reason for this. Could have to do with your surgeries, musculoskeletal disorders, a combination of both ... I don't know what the answer is. Do you happen to know which femoral nerve is affected? Where exactly is your pain and numbness? If it's the back of the thighs, that would be indicative of PFCN. If it's the side of your thighs, it would be LFCN.
If it were me, I'd ask for a detailed explanation for this:

It stated that there are a few cysts next to the neurovascular
bundle containing the femoral nerve. Then goes on to say with the patient's symptoms, there could be
nerve irritation and not be excluded, with left sided femoral Neuropathy is recommended.

[velmartd]

Hi Karyn,

Thanks, for all your input on this matter. I actually have more problem, with picking up my left hip. When I walk it swings around, instead of the normal way like my right one. My PT therapist, is working with me on that, and my SI Joint Issue, which is probably related also. I see my Neurologist on Friday, I will
ask him to look into the femoral nerve compression issue. Thanks Again Velma

[Violet M]

Velma,

Femoral nerve block might help diagnose whether it's the PN or the femoral nerve. Definitely something to consider before deciding on any type of surgery.

Just wanted to add something about Dr. Hibner. I know a patient who saw Dr. Hibner recently and he decided during her first visit that she was a candidate for PNE surgery. She had surgery a couple of weeks later and only made one trip. So she had to stay in Phoenix for a couple of weeks but the point of what I am saying is that Dr. Hibner does sometimes recommend surgery rather than conservative therapies on the first visit. The fact that you have tried endless PT already and have MRN results in hand showing a likely entrapment could possibly point in the direction of nerve release surgery. Since Dr. Hibner works for the hospital, he is not necessarily in charge of the staff or the scheduling. From what I have heard, both Dr. Conway and Dr. Hibner are very compassionate.

My top priorities in making a decision on a surgeon would be the surgeon's experience and track record on surgery results. Two years down the road all you are going to care about is whether you got well.

Regarding whether to have SIJD or PN entrapment fixed first is a personal decision. I had both SIJD and PN entrapment so I understand how complex and difficult the decision can be. Before my PNE surgery I had a chiropractic adjustment that took away most of my PN symptoms for about a day so I knew there were mechanical issues contributing toward my PN entrapment. The problem was I knew of no good way to get the adjustment/pelvic alignment to last. I tried several different conservative modalities to try to get it fixed but none of them worked. Personally, I decided I did not want to live with the PN pain any longer so I went for surgery and as it turns out, surgery was right for me. Over the 9 years following PNE surgery, the pelvic instability/misalignment issues have improved but I don't think to the point where it would have fixed the nerve entrapment. My ligaments are too hardened and sclerosed to ever heal completely. I don't know enough about your symptoms and history to know what is the right decision for you. I'm just telling you my own experience.

I wish you all the best in your decision.

Take care,

Violet

[sadie]

Yes i am disabled and have been for four years from a pudendal nerve block ...yes there is medical proof and on top of that the doctor was honest enough to admit that he had caused the problem and that I had a one percent chance of it happening (and he said that is why he never told me..) and that he had done 300 blocks and i was the third woman that got persistent genital arousal disorder from the block. He said the one woman got better and the other he never heard from again or something to that fact ...and I never got better and it is HELL on earth. Before i got the block ... I asked both the nurse that worked with him and the dr that sent me to this radiologist what could go wrong ...and the dr told me "nothing, we do these all the time.." and the nurse said " there can be an infection at the site of the needle " to which i replied " and i can take antibiotics and it will be ok?..." and was told yes. I am sorry I did not see this sooner but going to the computer with pgad is difficult. I hope this helps someone else and i hope "dancerneedshelp" that you are 100 percent well by the time you ever read this . God bless you every day

[hopeman]

Sadie

Did Dr Conway cutting your SSL and repaired it.

Did you develop pelvis instability after cutting SSL

Hopeman