Bad news for the nerve block I just went for and I feel like an idiot. Like I let you all down😔

[Debra13]

Hey everyone,

Well, my doctor had read the article and my letter to him prior to this nerve block. I must let you all know this is my 13 nerve block and I'm scheduled for another one in 2 more weeks. The good news is that he hasn't used steroids with every injection. The bad news is he didn't use the clonodine, fentanyl and marcaine on this one. Just a lot of anesthetic. He gave his reasons and said I should have known the reason even before I went to him with this from working in the medical field before I became truly disabled. This is the reason. Our pain receptors are in our brain so just adding a pain medication to a nerve block wouldn't work. That's the reason. It's that simple. But I felt like an idiot. Now I feel like an idiot to all of you. I guess when your that desperate and in that much pain daily, you just search daily for answers. He does believe that cryoablation is the way to go with this but not now. He wants to wait for technology to catch up. He wants it researched and done more and not done only by one doctor. He would like to see it be practiced more routinely before I even get it done. Another tip he has always told me. If a doctor doesn't take insurance and charges astronomical amount that doctor is in it for the wrong reasons. That doctor may be the greatest doctor in the world at a procedure but do you think that he will care if you are the one that got messed up during the procedure. Run. This is my only doctor I trust and I run all my procedures I'm going to do by him. He doesn't want to see me any worse than I already am. I can only pray that you all have a doctor like I do. He truly cares about my every move. I'm so sorry if I let any of you down. All my best that I could be and lots and lots of prayers. Deb😿

[Hidden]

You haven't let anyone down, don't be hard on yourself. We only learn by asking questions and doing our own research. There seems to be a general lack of research in this area. I'm glad you have a dr you trust, that is vital. And glad that you had a successful nerve block. Your doctor sounds very sensible.

[anne77 in reply to Hidden]

I agree with Sueboooo! We are all here to help each other

[Debra13 in reply to anne77]

Thank you Ann and Sue. I've really been hard on myself about it to the point where I got sick from the anesthesia and that has never happened to me. Thank you guys. 😔 Deb.

[Lexigrace2017 in reply to Debra13]

Stop blaming urself nothing wrong wanting answers its your health and ur in pain so research and as questions all u need thats what we have doctors for they need to help us and listen to how hard this is for u i feel ur pain im going through it also im hear to chat anytime hun hopefully u get merical u diserve xx

[Brandi16]

Deb stop apologizing!! You said it yourself. We are in such evil pain and I know I am very disparate. If my next procedure, the pelvic interstim, doesn't help me the way it should. I'll be looking for a doctor that would be willing to do repeat surgery on me perhaps. I would probably try cryoblation first, because I've never tried that. I don't think your going to get a whole lot of relief from it because you've had it done so many times. I'm not being negative. In my experience I had 3 bilateral sessions with the injections. I even did Botox injections. Everything madeworse. So in Boston they move on to the next thing. I wish you so much luck with your injections. I'll definitely be praying for you 🙏🏻💜. Also I have a team of doctors that I love and trust very much. You're very fortunate to have that.

[rozamond in reply to Brandi16]

Where in Boston do u go to l am origanly from Boston have had all the same treatments here in fl to no avail what is crylobation? Roz

[Debra13 in reply to rozamond]

Hey Roz,

I live in New York. I'm sorry if I gave any of you the impression that I live in Boston Cryoablation is when they freeze the Pudendal nerve. It's almost the opposite of radio frequency. I hope that helps. Deb

[Brandi16 in reply to rozamond]

Roz. I have Dr. Yong and Dr. Ross and Brigham's and Woman's in Boston the Chestnutt Hill Pain Center

[rozamond in reply to Brandi16]

Thank u so much. Dr wants to try ganglion method I cacellrd appt I heard it doesn't work and is very painful . I am very discouraged and in constant pain

[rozamond in reply to rozamond]

I rely on ice packs on and off all day gives me some relief especially in the car and 30mg of. Oxicodone a day

[Brandi16 in reply to rozamond]

Brigham's and Woman's Pain Management

850 Boylston St

Chestnut Hill

[Debra13 in reply to Brandi16]

Brandi,

Thank you so much. I actually thought about traveling to that pain clinic in Boston. Now my insurance does not cover out of state like they use to. 😔 Deb.

[marybeex4]

Pain is so overwhelming that sometimes we just have to trust and go with advice because we have no other way to go. You are doing just that. Well done for keeping your chin up and for finding someone to trust. Good luck on your journey.through it all.

[Debra13 in reply to marybeex4]

Thank you. 😹

[ttoney63]

Where is the Doctor located that you are talking about. I was to have cryoablation but my insurance company denied my coverage. They said cryo was experimental. The Doctor I saw does accept insurance. I just started taking gabapentin and cymbalta. I have already discontinued the cymbalta, because I didn't like the side effects. As of yet, the gabapentin is not helping at all. Do you know something else I can try? I have had one nerve block and it only lasted about 4 hours. Any help you could give me would be greatly appreciated.

[Debra13 in reply to ttoney63]

Where are you located? That is the first thing I need to know. It's funny how we are all different with the same diagnosis and what works for some doesn't work for others. So, I've had so many procedures done. First, I'll tell you this. If you feel heat works for you. I wouldn't hesitate on trying pulsed radio frequency on the Pudendal nerve itself. Not at the disk space of L4-L5. I had it done to both sides and had improvement on my right side but when the doctor did my left and did more spots on the nerve it made me a little worse. If that doesn't work you may want to try a ganglion impar block. That will help more of your rectal pain. Then you can look into a DRG STIMULATER. Please let me if that helps. Also I use organic virgin coconut oil all over the place in the areas that burn. ( the solid) nutiva makes a good brand. It takes the edge off. I'm in gabapentin. What dose are you taking. I take 400 mg 3x a day. I've gotten fat because of it. There is also lyrica that you can try also. I hope this helps some. Deb 😹🦋🙋🏻

[ttoney63 in reply to Debra13]

I take 300 mg 3 times a day and it's not working yet, but if I start gaining weight I won't take it. I can't get anyone to see me for a ganglion impar block. I live in the Nashville TN area.

[Debra13 in reply to ttoney63]

Who did your nerve block? They should be able to do the ganglion impar block as well. I'm surprised they won't do it for you. Also, who was the doctor that was going to do the cryoablation for you? Can you PM me that information because I know we are not supposed to advertise doctors names on the site. I will also give you the name of my doctor in New York who would be more than happy to do that kind of block on you and I know he doesn't charge astronomical prices if you have to pay out of pocket. If that is helpful to you. Let me know. Deb

[ttoney63 in reply to Debra13]

The Doctor I saw was in Atlanta. He did my nerve PN Nerve Block. I was hoping to find a pain doctor in Nashville but when you tell them you have PN they say we don't treat that. I have insurance, they did pay for most of my PN nerve block.

[Debra13 in reply to ttoney63]

I know who you saw in Atlanta. I was scheduled for a consultation with him followed by the nerve block to proceed with the cryoablation. However, my insurance wouldn't cover it and his office wanted full payment up front for everything. It was truly sad what I went through especially when my trip was booked and I was given false information from that office before I booked the trip. 😢Deb. Wish you could get the ganglion impar block or another Pudendal block. For if I'm correct this doctor just does one side and not both. My doctor does both sides of the nerve but you have a difficult time walking after it but it's worth it the next day. 👍🙋🏻🌹Deb

[ttoney63 in reply to Debra13]

I only have issues on the left side. My insurance would not cover the cryo either. It did cover the nerve block. I talked to his office this week and he was having a meeting today to try and get the cost of cryoablation reduced since people were having so much trouble getting insurance to pay for it. They are supposed to let me know. Do you have any ideas how I can get into see a pain specialist for a ganglion? I want to try that.

[Debra13 in reply to ttoney63]

The only thing I can tell you is that google has become my best friend. I will try to help you out with that and see what I can find. If that office lowers the price I think you may want to google and try to find ppl he has done this on. My friend and I did and are not so sure we are willing to go that way anymore. Which is why my doctor states the comments about technology has to catch up. It needs to be done more routinely and by more than one doctor. Please google and always get other opinions before you jump right into things like this. I know the cryoablation would work for me but now I'm too nervous to get it. Like I said I'll google for you in your area. Nashville is a big place. There has to be someone. I'll look for you ok. Deb.

[ttoney63 in reply to Debra13]

I appreciate that very much. My PCP wanted to know if I had the cryo would it cause incontinence. I asked them, in Atlanta, about that and they said out of the people they had performed the procedure on it had not been a problem. I don't know what to do? I'm just tired of dealing with this.

[Alive379 in reply to ttoney63]

I live in Alabama but travel here. (Appointment today.) Dr. Barry Jarnigan. He's off exit 65 on 65i in front of hospital. He has great knowledge of Pelvic Floor- Gyno urologist .

[Debra13 in reply to Alive379]

I'm guessing he is in Alabama. I'm not sure. But I actually need a urogynacologist. I live in New York and been finding that I've been having problems with insurance out of state like many others on the site. Thank you for the information. Deb👍

[Brandi16 in reply to ttoney63]

Gabapentin takes months before you get the full effect. Don't give up on it too soon.

[ttoney63 in reply to Brandi16]

It takes months? Did you gain weight on it?

[Brandi16 in reply to ttoney63]

No I did not. I'm also on cymbalta which helps me with some underlying depression of course.

[ttoney63 in reply to Brandi16]

I was on cymbalta for a few weeks but I couldn't handle the side effects

[Wonderer]

Yes! It sounds like you have a great Dr.! I think he is spot on about Dr.'s that don't accept insurance as being in it for the wrong reasons. We are all in a nasty fight with this nightmare of a problem. Would love to hear your progress as you go along! I hope we all get answers soon.

[Debra13 in reply to Wonderer]

I will keep you all posted on everything I do and if there is any improvement or changes. Thank you for all your support. We are in this fight together and if we don't do it and keep on top of our doctors than who else will advocate for us all. GOD BLESS US ALL! Deb🤗🙏🙋🏻

[Alaine1 Administrator]

Hi Debra13

I just want to echo what everyone else has said - you have not let anyone down. Sometimes it can be hard to see that something might not work but without enthusiasm for getting better/ our pain under better control we wouldn't get anywhere. It's great to research and come up with questions to ask at doctors appts. Not everyone with chronic conditions wants to play a part in their health care and perhaps it's something those with good health take for granted but for those that do should be treated with respect. Medicine and any care from a healthcare professional is a partnership where both are equal. We both bring something to the table - doctors knowledge through their education and clinical experience and us the patient experience and knowledge through living with the condition , and in some cases knowledge through research. Your doctor was wrong to be rude and speak to you like that - a simple explanation would have done about the role of central sensitisation in chronic pain. Someone in a Facebook group on chronic pain put this YouTube link up explaining what your doctor was talking about Debra13. It's pretty long at about an hour but it's very interesting and the doctor who presents is very genuine in wanting to educate and help his patients. I have posted the link below in case anyone wants to watch. There are similar talks on TED. I hope this helps anyone watching it

m.youtube.com/watch?sns=fb&...

Ignore the title of the presentation - it's not in the disrespectful sense

[Debra13]

Thank you so much. I don't think he was trying to be rude but trying to make me face reality a little bit more. I'm becoming very desperate now a days as I'm sure a lot of us are. I'm gonna go to the site you posted though. But thank you again. Deb

[Lexigrace2017]

I had pain block done in my back in febuary this year still crippled in pain waiting on scan in july as i suffer with chronic pid its severe pain every single day never eases at all not even with pain relieve and tylex and tramadol and lyrica pain relief is exstreamly strong but not doing nothing for me please someone tell me what to do nexted please 😢😢

[Pattimoe]

I’m so sad to read all your posts. I’ve been doing this circus for over nine years! Please hang in there, all of you. Sometimes it’s lonely and you feel like just giving up. I don’t have half the pain I used to but it still affects my every day life. I’ve gotten two or three trigger point injections a year for the past couple of years from a urogyno and they are the only treatments that have helped me. I’m literally crying for all of you 💞 Peace to you all.