Nerve Block Experiences

[KC17]

I had my phone consult a couple of days ago and since then I've been laying low trying to take in everything that we discussed. As it stands Dr. Renney feels like I should make a visit to Houston. Of course that means getting the dreaded nerve block. I asked him about flares and he said and I quote "they are really rare." I was baffled because it seems like every post I ever read people flared horrendously for weeks and often got permanently worse or acquired new pain. At a daily level of about a 4 I'm already not dealing with the pain well and the thought of making it worse is nerve wracking--literally.

So I was hoping that everyone could comment about their experiences with nerve blocks. I know it's been said a 1000 times, but I feel an area where people say how many they have gotten, where they received them, what it was like, whether they flared, how long it lasted etc. would be helpful not only to me but to others in the consideration stage.

Wishing everyone a great day,
Krista

[A's Mommy]

Krista,

You maybe have already said this in another post, but where do you live? Do you think you could get a nerve block done by a qualified physician closer to your home or do you live in Texas/? (My delete key is broken if I make typos... sorry1 )

I will tell you that I did flare from my nerbe block (there ya go, typo again). I had two needle sticks: one at the ischial spine and one at the alcock's canal. I had this done in Pennsylvania where I live. The doctor doing it was a neuroradiologist. The first block, at the ischil spine, I felt all the anesthetic burning in the area of the pudendal nerve distribution (this was left side only so it was so weird, it was like my left vulva was electrified or completely filled with burning acid). Then, wen he did the next injection at the aldock's canal, I did not feel anything. The liquid (anesthetic) had already seeped down the course of my nerve to numb that area. He did use a steriod though, and I believe that's what flared me, although it's hard to tell. I have read elsewhere that some of the compounds or crystals in a steriod can cause flares, for example, my mom used to have nerve blocks done before she had her carpal tunnel surgery and she would say she wanted to cut her hand off but then the flare (and the pain) would go away. For me, I had about 2 hours of bliss and then flared tremendously. I was burning bilaterally even though they only did the left side. My flare lasted about 4 days or so, then I returned to my baseline pain.

I hope others will post their nerve block experiences too. I honestly did not have high hopes for the nerve blocks (in my case) because i always "felt" that i was entrapped. I hope for your case, you are not, and nerve blocks, botox, or more conservative therapies will work for you.

take care
AM

[Violet M]

Krista, I had my blocks from Dr. Antolak and his team. Compared to the PN pain the blocks themselves were not all that bad. They numbed the skin with lidocaine before inserting the large needle. The medication at the ischial spine numbed things up a bit but did not completely take the pain away. The flare up afterward was sort of a bruised feeling that lasted for several weeks. The alcock's canal block done with CT guidance was worse than the blocks at the ischial spine done with fluoroscopy.

[HerMajesty]

I had very minor flares for maybe 2-4 days after, but it was just like any other "bad day" of mine, like the "OK, I know it's going to rain" kind of flare, not the "kill me now" kind of flare. I considered my 2 nerve blocks to be easy experiences.

[patti]

Hi Krista,
Thank you for your post! The responses from everyone will help me out right now too. The pain in my rectum is pretty much under control from the high amounts of lyrica I take everyday. However, my goal is to NOT take this medication anymore, or at least decrease the amount I take each day. So, since I've had my MRI with Dr. Potter, it's been suggested I have a pudendal nerve block. I'm not sure if I will know whether the pain has decreased, due to the lyrica. Will the lyrica take care of the pain from a flare I may experience.? If not, is there another medication that will? What do people do while experiencing these flares? Ice? Narcotics? Am I better off continuing the lyrica, not getting the nerve block and leaving well enough alone. My brain is fried from the lyrica, sex is not happening, but from what I read on this site I should count my blessings. I'm not sure where to go from here?

Any thoughts?

Patti

[Karyn]

Krista,
I had 2 rounds of bilateral blocks by Dr. Quesada in NH, who told me I might experience "some highlighted pain". For me, each flare from the blocks was worse than the one before it. I wasn't sedated for the first round of bilaterals and because they were so excrutiatingly painful, I was sedated for the second round. While this made the procedure itself more tolerable, the flares were worse. "Highlighted" pain was an understatement. It was more like a FLOOD LIGHT! The irritation I normally felt up my vagina and poop shoot turned into feeling scraped raw. The usual pinching/pulling/stabbing pain was was exasberated to unspeakable levels. This lasted for weeks and I couldn't wait for the blocks to wear off, so I could resume my normal, debilitating pain level. I also developed sit bone pain that I didn't have before, after my second round of blocks. The sit bone pain never went away. Oh, and something shut down in my bowel system whereas I couldn't move them or even pass gas for 3 days. Not constipatation - just not working. Unfortunately, this is what the current protocol is for diagnosing PN. I'm sincerely hoping they come up with a different diagnostic in the very near future so nobody has to endure these procedures.
Warm regards,
Karyn

[KC17]

Karyn- My goodness! I'm so sorry the nerve blocks were so painful for you and I must agree with you that I hope in the future there is a better diagnostic tool than one that is so hit-or-miss

Patti-I understand your desire to come off of Lyrica, it is a real doozy when it comes to my mind. I've actually been weaning myself off of it for a few weeks and as a result have been experiencing some dreadful withdraw symptoms despite the slow pace I am taking! I hope others answer your questions, because I think its critical to be well informed before having a procedure that could potentially make you worse.

A's Mommy, Violet, Hermajesty- Thank you for responding, it is allowing me to make an informed decision and I truly appreciate your input


Krista

[Amanda]

Krista

Everyone has different experiences of nerve blocks, the main thing about nerve blocks is the way they are administered. If they are done via CT Guidance then the accuracy is much better. I had mine done in Nantes via CT Guidance, I did get about ten hours from each one which was wonderful, I remember crying from sheer joy at having little pain...I enjoyed sitting to eat my dinner and enjoying the feeling of being normal and without too much pain. However once they began to wear off which was in all times during the middle of the night the pain raged like never before and this sensation continued for several weeks.
In all I counted up to 30 hours of being free of this pain......I can still remember years later how that felt. Friends and family members commented that when i phoned them up in those pain free moments that I was totally different person.....I was alone on each of those occasions and would have rathered to have my friends around me to share the actual moments of sheer joy.

Many medications can almost replicate the same sensations however they also rendered me absolutely in a state of total fog....a choice I dont want to have to experience again.

[catherine a]

Krista,

I responded differently to nerve blocks. I was left numb around the buttocks and genital area and was free of pain for about 6 hours until it all wore off.
On another occasion I was given cortisone along with the nerve block and this made the pain soar to the highest point in my life for about 3 weeks. I never had cortisone again.
I was also admitted overnight on one occasion because my legs were completely numb. I couldn't move them until the next morning. (The best bit about that was I had no pain all night.) I think those of us who've had experience of nerve blocks would say that
cortisone definitely causes the pain to flare dramatically. Nerve blocks can be given without the steroid.

Unfortunately we have to go through this as part of our treatment plan. It's used a diagnostic tool to determine if the pudendal nerve area is in fact involved. Hang in there, it's difficult and we understand your pain. it will pass. I remember those days very well. How can we ever forget!!! Try and rest and sleep as much as you can when the pain is so intense. Crushed ice in a handkerchief helps. Don't apply it directly as it might cause freeze burn. Ice on the genitals and heat pack on the butt.

Catherine.

[Celeste]

Maybe it was a little misunderstanding; flares are common as dirt, but any kind of harm from a block is quite rare. A flare won't usually go longer than 10 days. I had lots of blocks before going to Houston and most of them did not flare me; I don't think they touched the PN, either. My first one in Texas flared me for a few days, then my second one was a lot bigger flare for longer, complete with no appetite and no ability to get much sleep. But like magic, at 10 days, I was back to normal.

See if you can get a Valium prescription to deal with any pain from a flare. I never tried it, but I hear it can help a lot.