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Re: Need help and advice please
Posted: Sun Mar 04, 2018 6:52 am
by Violet M
Before having a resection of the ilioinguinal or iliohypogastric nerves can you try nerve blocks to those nerves to see if that relieves your pubic/bladder pain first -- before going for an all-out resection? If the nerve blocks are successful, you could try a phenol injection or cryoablation instead of resection. These are both sensory nerves so it seems like you could safely have cryoablation without any loss of function. Anyway, you can do a search under "advanced search" in the upper right and put in username "acw" as the author. I believe she had cryoablation of the ilioinguinal nerve that was very successful. You can read through her posts to find out more about it.
I don't know....it might be too soon to accept painful bladder syndrome as a diagnosis because it doesn't tell you what is causing your painful bladder. There has to be a root cause. You may never be able to pinpoint the cause but maybe it's too soon to say that for sure. I hope you will be able to figure this out. You may want to give yourself more time to heal from the PN surgery before trying anything too drastic that might possibly have risks associated with it. You are still quite early in the recovery phase.
Take care,
Violet
Re: Need help and advice please
Posted: Tue Dec 18, 2018 7:57 pm
by Okiegirl
Just an update, pain is no better almost a year later. I did not realize I was not getting a nerve decompression and instead a perineal resection. Had I have understood I would not have done it. I have since suffered a massive blood clot and had 4 surgeries for that. I don’t understand why anyone would cut the nerve and I m so concerned damage has been done that can’t be fixed now. I’m still immobile for the most part. Does anyone have any advice?
Re: Need help and advice please
Posted: Sat Dec 22, 2018 2:48 am
by Violet M
That is so unfortunate that you were not given enough information prior to surgery. I'm assuming the perineal nerve is the branch that was cut in your surgery? Since it is a peripheral nerve there may be some regeneration over time. Also, if it was just on one side, the branch on the other side may compensate for any necessary motor function. Not knowing your exact symptoms or knowing what exactly they did in the surgery it's hard to say what is the best course of action at this point but if pain is the primary symptom then possibly finding ways to manage the pain is the important thing right now. For me, the things that helped to calm down the pain were alternating hot/cold sitz baths, ice, slowly resuming some gentle PT with mysofasical release, and TEN unit to calm down the tense muscles. I also did some hyperbaric oxygen treatments post-op but I can't say for sure if they helped. My insruance covered half of the cost. Some people have found water therapy to be helpful and starting slowly to do water walking. I also used a lot of topical pain relievers such as extra strength vagisil. These are just simple remedies compared to what many people try such as neurostimulation and intrathecal pain pumps which are always an option but pose risks of their own.
If you feel like your nerve is entrapped by a ligament you could consider getting an opinion from a second PN doctor and see what they recommend. But that might require traveling which it sounds like might be a real challenge for you right now. Praying for you to have wisdom to know what to do next. Sending you a PM.
Violet
Re: Need help and advice please
Posted: Sun Jan 06, 2019 9:04 pm
by Okiegirl
My PM not working violet. Wondering if I might speak with you.
Thank you so much!
Re: Need help and advice please
Posted: Mon Jan 07, 2019 12:20 am
by Okiegirl
So sorry for repeating messages. Internet weird here
Re: Need help and advice please
Posted: Sun Jan 12, 2020 9:10 pm
by saint
April wrote:Okiegirl,
I'm so sorry. This sounds really difficult. Before I started medications, I had the constant urge to urinate---maybe not as extreme as you describe it, but it was interfering with my life (I was waking up repeatedly through the night even when my pain was under control). I was initially give samples of Vesicare, and it worked great. But, my insurance forced me to try cheaper options before they would cover Versicare. One of those cheaper options (tolterodine) was just about as good, so I stayed with that because it was cheaper for me. (The one that did not work was oxybutynin.) I realize your problems are bigger than just your bladder, but while you're trying to get this all figured out, you could ask to be prescribed one of those. My other medications are gralise, tramadol, and nortriptyline, and they are all working together pretty well. Given the severity of your pain, though, I think you could request something stronger.
Was the surgeon you contacted Dr. Hibner? His team will do one of the specialized MRIs to see if any problems can be identified that way, and he can review your options---what you might want to try before surgery. Amniotic fluid injections have been getting a lot of attention on the forum lately, and one person reported success with cryoablation (but others reported otherwise.). Hibner (or one of the other pne surgeons) might be able to review these and other options. Have you tried suppositories? There's a recent thread about that that might be useful if you want to get ideas for that. The thread heading is: Suppository & topical ointment options.
Keep us posted.
April
How are you doing Okie girl? I have the full bladder/ urinary urgency/ inability to empty/ severe vaginal/ rectal/ thigh/ pubic pain/ and I feel like I'm losing it too. This is hellish.
How are you doing?
Re: Need help and advice please
Posted: Wed Jan 15, 2020 1:12 pm
by saint
There are a lot of truly suffering individuals. I urge all to read Pain News Network.
Re: Need help and advice please
Posted: Mon Jan 20, 2020 5:28 am
by April
Hi, saint. Is that a blog?
April
Re: Need help and advice please
Posted: Mon Jan 20, 2020 10:57 am
by saint
Violet M wrote:Well, I certainly can see why you would make the choice for surgery and I wish you all the best with it. I hate to think where I would be if I hadn't tried surgery.
BTW, it's my understanding that Dr. Dellon does surgery in Nevada too -- just fyi for those who are following this thread.
Violet
Violet do you have a success rate for each doctor who treats this?
Re: Need help and advice please
Posted: Mon Jan 20, 2020 10:58 am
by saint
April wrote:Hi, saint. Is that a blog?
April
Yes you can find it online.