Hello to all... and a "new" pain treatment for CP

Pancreatitis
#1

Hi, all!

Gosh, I know I’ve been away for SO long and the group has changed and changed-- and I can’t thank those of you, older members and newer ones, for your ongoing notes and hugs and regular emails ).

I’ve still been VERY, very sick… a few times brushing the “you might die” thing all over again-- topped with all nutritional issues and the pains and nausea and barfing and more pain that comes with CP. It’s a monster of a disease.

I had written a while ago asking if anyone had tried pulse and/or regular radiofrequency blocks when CPB’s had either failed or not lasted. I started having them, sometimes every few weeks, and Tuesday this week will have a “very aggressive” radiofrequency block directly into the ganglia, since mine is so enlarged (like in panc. cancer) and is the pain center. They shoot electrical heat down a large needle (a few of them) and guide to a degree with fluoroscopy and contrast and fry out the pain nerves to reduce the pain. The nerves do grow back, but it can last a long time compared to CPB’s. Look into it if you’re having constant, severe CP pain, but make sure you find a doc with a LOT of experience to minimize any risk.

Here’s some info I found-- there’s not a ton out there, but it’s been the most helpful thing in the last three years and gives me a taste of life back, at least for a little while and until the next one. On top of that-- it’s CP as usual-- horrible pain and lots of meds I hate along with nutritional struggles, Mediport care, and just making the most of each day, no matter how bad it gets.

I’m wishing all the best for everyone here, old or new to the site. We all struggle through this… together.

Hugs and love to all-- I miss you!!!

(PS-- If you had requested a Dream Fairy and I got too sick to make yours, can you please email me at the address above and let me know. If you had wanted to mail a check with a request for more, please go through my website at www.lisabard.com.)

Here’s some of the info I found, and although it references the RF block for cancer, it can be used effectively and safely for regular bad CP pain:

Ganglion block: it may be used to eliminate pain related to pancreas…

Pain can be treated and managed. There are several methods available to treat cancer pain. These methods include pain medications (opioid and non-opioid), radiation, surgery and forms of nerve block, including celiac plexus block (CPB) or celiac plexus neurolysis (CPN). Some individuals choose to supplement these methods with alternative or complimentary therapies such as acupuncture, biofeedback, guided imagery and relaxation techniques.

Celiac plexus block (CPB) or celiac plexus neurolysis (CPN) is sometimes performed for pain control. These procedures block a group of nerves in the abdomen called the celiac plexus, which can deliver sensations of pain from the abdomen to the brain. CPN involves the injection of an agent, usually alcohol, to permanently destruct nerves. CPB involves the injection of medications such as corticosteroids and numbing medications. This approach usually only lasts a few months and is not intended to permanently destroy nerves.

Different approaches are possible for performing celiac plexus block or neurolysis. CPB and CPN can be performed percutaneously using a needle that is inserted through the skin and guided into position by the use of imaging such as computed tomography (CT) or endoscopic ultrasound (EUS) guidance. A needle can be advanced using an endoscope with ultrasound guidance into the region of the celiac plexus, and either alcohol or numbing agents with corticosteroids can be injected.

Radio frequency ablation (RFA) is one of the newest forms or techniques being used for pain control during which radio frequency waves are delivered down the needle to generate just enough heat to destroy the nerves. It is not yet known which is the best way to perform a nerve block. The doctor will discuss with you if this is an appropriate option for the patient and will refer the patient to see one of our pain specialists in this area. It is important to note that these procedures do not provide relief for everyone but most patients will have a reduction in their pain.

#2

Glad to hear from you! I have been wondering how you have been doing. I do hope that some of these procedures and treatments are providing at least a bit of relief for you.
sending loads of hugs!
Dream
Lindia

#3

Sorry that no one was interested in a “new” pain treatment (the RF block is usually used for pancreatic cancer but is working great and for long periods compared to Celiac Plexus Blocks alone). I was hoping the info might help many of you but see that the group seems to have moved on.

I wish you all well-- I feel like an outsider at this point and will be closing things down. Please reach me through my regular email or website if you’d like to stay in touch. My cell number, address, etc. is on several pages on my website (all the info is in the original post I made yesterday here). You’ll all remain in my heart and thoughts and prayers.

I really hope everyone here will get some relief at some point-- and I wish this more than anything for those of us who face this disease daily. For now, I’m moving on and hope to continue to find the life this disease has taken from me in many ways

Take good care and keep smiling…

Hugs,

Lisa

#4

Lisa,

I’m glad to hear that you have found new pain relief. I have wondered how you are doing. I always get sidetracked and never seem to get an email out to you.

I watch the site on a daily basis, but don’t respond very often any more.

Right now I am doing fairly well. I have a pain in my side, but I don’t think it is my pancreas. Too high up. I’m going to a new doc on Wed. and hope he can shed some light on this newest development.

Keep the Faith and God Bless,

Vonnie

#5

Lisa,

Don’t go. All of us come and go- check in and a lot of times don’t email back. Hang in with us!

Jackie

#7

I have been away from careplace and I am so sorry to hear things have changed. I guess that is the nature of these things People come and go, or go away and then come back later. I hope you will be the latter. I know you have really struggled to remain “you” through out all of the pain and sickness. The sickness can make you feel like someone you don’t recognize and then you long for the old you. I feel the same. Even though we may not have communicated much, I’d like to stay in touch. I think we have alot in common. Let me know if this is okay. I will send you a private message with my email.

good luck!!!

#8

Absolutely! Thanks for your thoughts- feel free to email- :slight_smile:

Jackie

#9

Thanks for all the notes–

I’m sure I’ll check back here and there, but for now can’t do more than regular email or calls. Even my own parents have told me it’s “too much” for them to even deal with what I’m going through and THEY don’t have to deal with it at all. How sick.

On CarePlace, I had the honor of answering over 850 private notes in addition to replying to every hug (0ver 1200 and I’m sitting with 274 new ones I sadly don’t have the energy and health to reply to)-- and then I feel guilty as well as honored. I couldn’t have felt more loved and cared about than answering all those notes in addition to posts, etc.-- but it was taking hours of each day that I didn’t have and I didn’t know how to not respond-- it felt like the least I could do in return. Each one of them has given me hope and love and a purpose in dealing with this horrible disease. I did nothing to get it but now have it forever. The pain is crazy and no one can seem to control it since there’s only one med I haven’t tested as allergic to. So, finally, after years of this, it’s feeling like too much and I need to cry and scream (thanks, Durga!) but when I do it alone in the car or when I’m home alone, it just goes nowhere. I went to a counselor a few times but they just seem amazed at how I can deal with so much so well-- so it’s like it falls on deaf ears once again (I have about 40 other confirmed diagnoses and many are also painful and limiting) and I hate having any of them-- I just want to be an active and healthy working person who can still compete athletically and enjoy life rather than just trying to get through each day I face.

Sorry for the catharsis and rambling, but hopefully that better explains why I’m trying to move to regular email and calls. So many of you have become true friends and I hope to never lose touch. As I get sicker with secondary things-- being taken to hospitals by ambulance and then still not getting docs to get it at all-- and then always feeling or being sick and not being able to just eat normally-- it all adds up. I know you guys get that, so no need to repeat it all. At least I’ve stayed away from being admitted for a year now-- but sometimes when I know I should be in the hospital I do all I can to stay home because I can’t make it my whole life any more than it has to be.

I always miss you all and you’re all always in my thoughts, prayers and I’m always sending you great wishes for pain-free lives and all the health that you all deserve.

Even if I’m not checking back here very much, I’m still there. And I’d love to stay in touch with anyone who’s okay with using regular email or calling here and there. I only want the best for everyone here-- and I hope we’ll all struggle all the way through this disease one day and out the other side.

Best wishes, hugs and love to all,

Lisa

(PS-- The blogs on my site should be updated more shortly. I’ve been writing for a few magazines, trying to have a pseudo-career with this disease… but I promise I’ll still get back to the site and blogs and stuff soon!)

#10

Lisa,

I am fine with regular Email- just let me know it’s you on the subject line so I won’t delete it.

I hear you. I really hear you and understand your pain. I sure have cried it through some days… and some days it doesn’t help. Sometimes the doctors get it and sometimes…

My friends really don’t get it though they are kind. My colleagues at work don’t really know too much as I feel it’s best that they don’t. My husband is very supportive but feels helpless. I have no other family now- (they have passed on). Sickness and pain are a lonely business and very isolating.

I’m keeping a good thought for you and keeping you in my prayers. I do found having others with the same illness is helpful and supportive.

I’m here and happy to keep in touch via regular email.

Sending love to you!
Jackie

#11

Hi–

Thanks so much for your notes back. I’m having in some ways the hardest time I’ve had in the past three years with this and don’t know what to do or where to turn. I’m very sad and angry and have lost so much, allegedly forever. My own parents say it’s too much for them to even hear about when I try to tell them what’s going on (at least they don’t have to HAVE it!) and some of my closest friends either break into tears (that part’s okay) or say not to tell them anything because it makes them want to throw up. How nice. Then there’s the docs-- the ones who when I show up with 102.6 fevers and trouble breathing (turned out to be likely bronchitis on top of my asthma which everyone could hear, etc.) and elevated liver enzymes and a SED rate that was 125 (normal is 0-20 and shows the inflammation in your body) and more pain than in a long time after a block that possibly just touched the pancreas wrong… well, he just looked at me and said the whole thing was likely “anxiety.” Yeh, right. That makes me SO angry when docs assume stuff in your body is in your head. I’ve had that accusation for nearly 45 years now since I was also born with a rare condition that took about 29 years to properly diagnose. Guess when they don’t know what to do they just put it on you as the patient and say it’s psychological (keep in mind I also have a master’s degree in clinical social work and DO know the difference better than most of my docs!).

I’m currently having a lot of signs of yet another unrelated diagnosis (Sjogren’s), but am just ignoring it for now. And in a few weeks I’ll likely let the pain doc get radical with trying to sclerose the nerve endings of the celiac plexus and the ganglia-- since mine is still so enlarged. I’m going to have him use full radiofrequency rather than the pulse RF which is less heat and not very lasting. It’s riskier but can also last longer and at this point my long-time GI doc and others think that quality of life needs to take precedence over risk). My fingers are crossed but I need some of my life back so badly that I’d try almost anything that seems endorsed and potentially helpful. I’m on super-high doses of pain meds and it’s still not enough (200 mcg Fentanyl patch and 600 mcg Actiq Fentanyl “lollipops”-- sometime about 15 in a day. My tolerance has gotten so high over the past few years of 23+ admissions and even more procedures and surgeries and way too many ERCPs and sphincterotomies (which every doc other than the one who did it seems to think led to this disease being in me and being chronic) that they can barely get me sedated for stuff anymore. The doc doing the RF blocks on me was the Chief of Pain Mgmt. at Walter Reed Army Medical Center and works with a ton of newly injured vets with amputations, bad burns and worse-- and he’s never had to give any of them the amount it takes to get me sedated. He worries my breathing will stop, but so far, not even close. And sometimes I’m still too awake.

And then I started getting psuedo-gout in my joints every few weeks and then developed hypoparathyroidism on top of my primary hypothyroidism (Hashimotos’s) that I’ve had for over 20 years. So my levels are all off and I’m losing hair like crazy, feel like a female “Michelin Man” because I get so bloated and swollen from my face to feet (about 10 lbs. of water weight and swelling-- also likely thyroid) and I hate all of it. I don’t say that very much, but I do hate it all. I want a piece of my life back and am still determined to do it, stupid docs and lame family and everything else in the way.

So, sorry for the long, long, long ramble-- and I know we’re all going through parts of this.

For those who mentioned staying in email contact, I’d sure appreciate that because it’s much harder to get on here, etc.-- but for a few of you I don’t have your email address and your profile to send you a note is private so I can’t leave you a note. Just leave me one here or email at lisa@lisabard.com.

Please be well, everyone. None of us deserve even a minute of this terrible disease. Be careful in procedures you agree to and research well first. Many can leave you with other issues or in a worse place than you started (even though that’s hard to imagine).

Hugs and love to all–

Take good care!
Lisa

#13

Lisa,

I am so sorry to read you are having such pain and devastation. I hope your relief is soon to come so you may enjoy life. I know you are so strong but even the strongest get torn down sometimes. Please know I think of you all the time and pray for “healing” for you. I try to find “wonderful” in everyday, and enjoy my family. I resolve to have a positive attitude as mush as possible.

So are you still engaged to Mr. (I can’t remember his name)?? I am sorry your parents can’t seem to be there for you. I guess your strength didn’t come from them. Take care and hold on to the hope for pain free days ahead!!

God Bless,
Keri

#14

Keri,

So well said!

Hugs,
Jackie

#15

Lisa,

I am sending you love and prayers. Pray about it- you will have an answer

Love to you,
Jackie

#16

Hi, Friends–

First, thank you all SO very much for your notes and replies and emails and hugs! You’ve all been so great for so many years now. (Sorry ahead of time if this gets long, but I need some help badly and don’t know where to turn-- thanks for reading this note and for any help you may have.)

I have very scary thing to ask about: Since my idiopathic CP appears like it would in pancreatic cancer, but without the cancer, they are now approaching the 24/7/365 horrible pain that I’ve had for years (the docs think at this point I need to put quality of life over fears and risks) like they would in cancer. The problem is that very few non-cancer CP patients do this (because of the risks that sadly those w/cancer wouldn’t have to worry about for too long due to the mortality rate) and so even the doc doesn’t have anyone to consult with, etc. The deal is that on Nov. 4th I’d have a radiofrequency block done just on the left side (w/o the pulse it’s much higher heat) where the worst pain is (he doesn’t want to risk doing both sides this way "just in case) to hopefully reduce the pain-- but the risk is big that he could make things permanently worse just by accidentally touching the wrong thing w/the heat rather than just the right nerves-- and this is on top of the usual risks of paralysis, etc. Then a few months later he’d admit me (at Walter Reed Army Med. Center where he’s the Chief of Pain Mgmt.) and do the alcohol block that they all say they reserve for cancer patients due to the even greater risks of making the pancreas worse-- but if it works, the pain relief would be much longer lasting (he’d use a lower dose of the alcohol to avoid permanently affecting the nerves although it could easily also make other pains from the CP permanently worse).

So, the short version is that he and other docs agree to try these treatments in the hope of reducing at least some of the unbearable, life-changing pain I’ve had every second of every day for years and hopefully increasing my “quality of life.” The bad part is that it’s VERY risky in so many ways and if something-- anything-- even barely goes wrong it will make things worse forever. I can’t imagine living another 50-60+ years like it is now, but I also can’t imagine it being worse for just as long (just when I thought it couldn’t get worse again). I’m scared-- VERY scared, but kind of out of options. Been to Mayo and Hopkins and had 6 ERCPS, a punctured lung, TPN for months at home, etc.-- it’s all been tried. I’m better than years ago, but still barely have a life at all the way it is. Has anyone out there done the alcohol block w/CP and has anyone gotten worse or better or anything? There’s no literature on this that I could find and the docs say they normally just don’t do this but think it’s the best thing to try in me (my panc. tail stayed inflamed, but my ganglia and nodes are very enlarged-- just where all the pain comes from-- and even at Mayo they said they’ve never seen this except in pancreatic cancer. No one knows what else to do but back up at 200 mcg Fentanyl patches and about 15 of the 600 mcg lollipops daily isn’t even touching the pain. It’s partly tolerance (they barely can get me knocked out for procedures and 300 mcg of IV Fentanyl feels like saline to me) and it’s partly outrageous pain levels that don’t stop and keep me from eating and staying hydrated way too often.

Please help with any information you might have. I have about a week to make a decision and I’m scared and trying to be optimistic because this could change my life back at least somewhat. I’d sure appreciate any help at all!!!

Thanks so much to all of you!!!

Hugs and love coming your way,

Lisa

#17

lisa

i will post you a private message so we can talk more, i do not know anything about this procedure, but what is your gut feeling? my doctors say follow your heart and when you do not know what to do, do nothing,it will soon come to you. so for what it is worth follow your heart and God will lead you, remember he has our entire life planned out, so i always say it is what it is and ask him for guidance, strength, wisdom and inner peace and he will answer in his time. i love you so girl talk to you at care place

julie

#18

Lisa,

Hi hon. Again I am so sorry you are having so much pain. I know there is so much risk in your decision. I am actually terrible at making these decisions, heck I still struggle with if I should have my first ERCP (the docs kept advising against it until now, so now I am scared to have one.) I wish I had educated advice but I don’t. I will offer this though- prayers for you and your decision. Like the pp said “follow your heart”. I would have to say, if I was where you are with completely debilitating pain, I would probably go for it.

I will pray for clarity for you. Please feel that comfort. Take care and hugs.
Keri

#19

thanks jackie, i just know if i go against my heart, i am always sorry !!! i hope you are having a beautiful day ! here in kansas it is the perfect fall saturday ! even with all we struggle with soooo much to be thankful for and so much beauty to enjoy ! love ya

julie

#20

Lisa-you are such a survivor. Love you!!!

I have never heard you mention whether the doctors ever considered an
islet cell transplant for you. Have they specifically ruled that out?

Amanda

#21

Julie,

I could not have said it better.

Jackie

#22

Julie

What a wonderful attitude! I love hearing a little happiness. We have to grab it with both hands when we can. It is pretty rainy in South Florida right now…but this morning is was hot and sunny. I did part of a charity walk (and am paying now) but loved it. Laughed with friends and that made it really special. I have always found that when I don’t listen to my “gut” I totally mess up!

Sending you lots of hugs!!!

Love to you,
Jackie