Nerve block scheduled-what to expect?

[Nuthatch]

Hi Y'all!

I'm having my first nerve block next Tuesday and have no idea what to expect. I am not thrilled about the prospect but would love to get more than a few days relief from the pain. I've read here that so many of our ic family only experience a few hours relief at a time--please know that my heart goes out to you, dear friends.

I have a wonderful doc with a wonderful staff and they are very helpful to suggest different approaches. I've had 4 rescue instills and will have a second hydro-cystoscopy in late April. Right now we're just trying to get me to April with the least amount of pain.

The PA in the office the other day told me that the doc suspects Pelvic Floor Dysfunction along with the IC and some IBS problems. She reminded me that their protocol with all this is to start with the least invasive and move gradually through the treatment options. She thinks that I should get good relief from the nerve block and so far she's been right on the money!

Could someone please let me know what to expect with the nerve block? I will have a friend go with me to drive me home because I will be "woozie" but what is involved? I guess these procedures are different according to the way the doctor approaches it. I'm scared about this but also want the pain relief!

Thanks for listening and sending positive healing vibes to all!
Nuthatch

[Nuthatch]

Hi, Y'all!

Checking back in to let you know that the nerve block happened last evening and it went ok. I didn't totally freak out and the doctor and PA who were in the room with me were terrific, as usual.

I hope it works! We're just trying to get me to the April 23 date for the hydro cystoscopy.

One thing that the doctor noted immediately was the amount of scar tissue from the hysterectomy I had in Aug of last year. He is concerned about the efficacy of certain treatments because the area is so scarred and he knows there are many adhesions in the area. They now are almost certain of PFD and I'm not sure what that means but I'll read here more about it.

It was a painful experience but they were really kind and told me exactly what to expect and were encouraging and called me by name and stuff.
The doctor even said that I could think of it as a Lenten experience and I could immediately say that I was "offering it up." It put a pretty significant twist on the experience--I mean when you think and pray for all the horrors happening in Haiti, my little nerve block ain't no big deal! I'm not dismissing the difficulties of our disease, they are life-disrupting in so many ways but I could focus and pray for those outside of me who are suffering so much every day.

Thanks, dear IC family for being there for me through this new thingy.
I come here every day for encouragement and information. Everyone here has become a terrific lifeline and support.

Peace,
Nuthatch

[nottoc4]

Hi Nuthatch.I'm glad everything went well for you. Many years ago I had Epidural nerve blocks for my lower back. They worked for about 6 months at a time but I finally had to have surgery to fix my lumbar stenosis.

[Charisse]

Sorry I've never had a nerve block. Where exactly do they put the blocks? Please report back to us and let us know how you are feeling!

[Nuthatch]

Hi!

Well, it's been three days since the trip to the uro for the injections. I am doing ok and feeling like I can wait longer between having to pee. That is a help! The urgency is less and I don't have the sharpness in the pain deep in my belly.

Now we wait and see how long this lasts and I don't go back to the doc until the 11th of March for a follow-up. I made a pretty major mistake yesterday and took two bufferin for a headache. It only took about an hour to find out that Nuthatch will not be taking aspirin anymore for pain!

I had a good conversation on the phone yesterday with a friend who is a doctor. She had called to see how I was and she was the one who had referred me to my urologist. I told her about what the doc had said about the scar tissue and adhesions--how difficult that makes the treatment process for the IC. She is concerned that I'll return to a painful process before the scheduled hydro cystoscopy on the 23rd of April. I think the uro's idea is that between the nerve block(s) and the rescue instills that they can get me there without too many narcotics.

I'm so grateful for this friend who listens and gets it how hard it is to come to grips with this disease. So many others in my life are saying "geez, what's the big deal!? Move on!" and other lovely remarks. I can sure understand why IC can be such a depressing and isolating disease. Who wants to talk about all this stuff anyway in the course of daily living--it's enough to live with it?!

Thanks for asking for an update!
I hope you have a wonderful day!
Nuthatch

[Nuthatch]

Hi, dear IC family!

Well, so far so good with the nerve block! I'm still able to wait longer to pee without as much discomfort. The pain after peeing is still there but not quite as paralyzing.

I'm still having to get up 3 times a night but that's not as bad as 6-7 times before I started real treatment for the disease.

I do have a big black bruise where the injections went in. Not nice at all but there's no danger that I would slip on a bikini or anything (I'm a nun--we don't do bikinis!)

Wishes of all things good to all!
Nuthatch

[Nuthatch]

Hi everyone!

Today I go to the doc for a follow-up and the nerve block seems to be working ok. Within just the last few days I've begun to feel more pain but I guess that I'll just have to tough it out till late April. I haven't exactly been diligent about following the diet and have had a big plate of nachos--ok, ok, I know it's nuts! I don't do spicy food anyway but the salsa was a BIG mistake!!!

Wishing you a terrific day,
Nuthatch

[Nuthatch]

Hi!

Well, I went to the doc's office on Thursday the 11th for what I thought was a follow-up check-up but it turned out I had been scheduled for another nerve block! I hadn't brought anyone with me to drive home so they had to do a rescue instill instead and I will have the next nerve block on Tuesday of this next week.

This doc and his PA and rest of staff are as kind and patient as anyone could dream of. I've never been to a doc's office where so much time is spent and the comfort and care of patients is such a priority!

I come here to ic network at least once a day and always feel so supported here! Thanks to all our family here!

Take gentle care,
Nuthatch

[Nuthatch]

Hi!

Well, I went for my second nerve block today and it was very painful but I at least knew what to expect and the doc and nurse and whole staff were wonderful!

I have to go back in three weeks for the third one but by that time it will only be a few weeks till the hydrodistention. The doc and PA are thinking that I may need hydros every 3 months or so to get me beyond this horrible flare which has lasted over a year and to perhaps get me to remission. I have a huge build-up of scar tissue and adhesions from my hysterectomy and that complicates the pain and its management on top of the IC. The doc told me that it really becomes two separate issues and maybe three if it does turn out I have PFD.

I just wanted to give you an update and thank you for reading this.
Here's hoping for a cure!

All my best,
Nuthatch

[etherealred]

Hey! I'm glad the nerve blocks are helping you. I had my first spinal nerve block today. I am hoping I get some longer term pain relief from this. I also started Elavil and Neurontin tonight. I am already feeling less pain thanks to the nerve block and I hope it continues! I'm at a 6 right now, which is a 2-1/2 point drop from where I was this afternoon when I had the nerve block done.

My pain specialist (first appointment was today and I am pleased to have him as a member of my care team) lidocained me up really well... the initial needle hurt a bit, but once the lidocaine got in and started working (he let it work for a few minutes before putting in the blocking agents and cortisone and such), there was next to no pain for the rest of the procedure. It definitely felt weird, but it didn't hurt much at all! I had expected a really painful procedure and it ended up not being painful thanks to the internal numbing agent. Lidocaine, I love you. I was told to expect some potentially bad pain at the blocking site starting tomorrow, but that it will go away within 2-4 days once the cortisone really kicks in. If I can handle severe and constant pain from IC, I can deal with blocking site pain/irritation from the needle. That's what bags of frozen peas are for!

Best of luck on your treatment journey.

[Snowden1]

Hi ladies,
My NP wants me to see a pain management specialis to inject botox into my abdomen. I am leary and I don't think I'm goign to do it.

Nuthatch, I know that I have the same issues you do. I had a hysterectomy for bad endometriosis and then got a terrible pelivic infection. I know I have adhesions and stuff in there, I just never got better, only worse. I have really bad pain too.

Have the hydros been helpful for you in the past? Let me know how this works out for you. You do have a wonderful attitude. I wish I could be so positive.

I was thinking about nerve blocks, but it seems they are very temprorary.

[Nuthatch]

Hi girls!

Great to meet you and get to know you better! I had a tough day yesterday and needed a percocet last night but am feeling better and more lucid today. So we'll see how long the block lasts--my doc will do another set in 3 weeks regardless.

Teresa, I have only had one hydro so far and that was to diagnose the IC. This new uro is a specialist in IC and does a ton of research and writing along with a busy, almost urgent-care practice. Me thinks he's also able to bi-locate.

I am looking forward to the hydrodistention and hope that I can settle into a routine of a hydro every several months. For one thing I'll be out cold and don't have to endure the pain. One of the nerve block injections goes into the urethra and that's the killer--I'm on the ceiling after that but it helps with the pain in this ultra-sensitive area.

I'm sorry that you're dealing with the scar tissue and adhesions issue. It is a royal pain! Actually, I'm thinking these days that except for finding out that a large ovarian cyst was not cancer, I didn't really need the hysterectomy but more needed to have the IC treated since I'd been having those symptoms in full force for over 6 months.

Ah well! Life goes on!
Keep up the bravery and we'll all get through this,
Look forward to getting to know you better,
Nuthatch

[etherealred]

I was thinking about nerve blocks, but it seems they are very temprorary.

To me, any relief is fabulous, even if it's temporary. I have given up on the idea of some kind of procedure that offers permanent pain reduction for me. I am thrilled at the prospect of having reduced pain for awhile. Weeks, months... I'll take whatever I can get. I woke up this morning at a 5 on the pain scale (out of 10) after my first nerve block which was done yesterday. When I realized that my pain was actually tolerable, I got a huge smile on my face. I'll take a 5 instead of an 8-9 any day, and will do the nerve blocks as often as necessary. I have been dealing with pain and urinary symptoms from the IC for four years, with the last few months definitely being the most painful. I just got diagnosed about three weeks ago (long story).

As for the Botox treatments, I'd recommend you doing some research first about Botox used for IC treatment before coming to a conclusion. Knowledge is power, after all. I was leery about the idea of Botox for my IC, and after doing more research, I am even more leery than I was before. I much prefer a spinal nerve block, which is at least proven to reduce pain, instead of Botox injections.

Best of luck on your journey to wellness.

[Snowden1]

Thank you for the info ladies!

[callie0767]

what is exactly the procedure for a nerve block? is it done in hosp or drs office and who does it? thanks