Pain Management . . . Or Lack Thereof

[smokeyblue]

I come here in utter frustration. I have chronic mild to severe pain in my upper left side of my abdomen due to adhesions from multiple surgeries. Eight years ago I had half my pancreas removed due to a beniegn tumor. I've had lots of boughts with pain since then. In 2008 I had laparoscopic surgery for adhesions. My surgeon/PA found what they called the most prolific cases of adhesions they have ever seen. Within ten months I was back in the OR due to severe intractable pain. My diaphram was adhered to my spleen basically causing me to be in pain every time I take a breath.

Here I am eight months out from surgery again and I feel that I am at square one. Surgery has not worked for me. It is no longer an option in my eyes or in that of my surgeon. I am in moderate pain 2-3 days a week, mild pain 3-4 days a week and intermittiently I have severe pain and some days with relatively no pain. I have been chronically taking OTC Ibuprofen and Tylenol for my pain. My stomach is a mess from it, I take two double doses of Prilosec daily to protect myself. I end up in the ER roughly every 2-3 months with severe intractable pain. I know my surgeon on a personal basis and he agreed with me that it was time to medically manage my pain. I live in a rurual area and primary care is hard to come by; as soon as I have got established with a new physician, it seems like they leave the area. So my surgeon's office got me set up with a family doc.

So, I go for a new patient/physical appointment with this doctor. She has excelent documentation in front of her from the surgeons office and I am a good historian. I tell her my symptoms and my ideas about pain management. My ideas for pain management were 1) pain clinic to see if a celiac block would help my pain, 2) chronic ultram use, 3) as needed Vicodin. I might as said nothing up until the word Vicodin. She shut off immeditely. She told me "I don't prescribe narcotics. I'll try the Ultram, but I'm not giving you narcotics."

From there discussion ensued. I explained to her that I wanted only a very small amount to use very infrequently. I also told her about my upcoming trip to Disney World. This past May I was at Disneyland and after two hours I was in so much pain; my surgeon gave me some Vicodin back then and I sure used it those two days there! I explained this to her; she said she wasn't going to write me a script as an insurance policy for my vacation. I made multiple intelligent arguements for PRN Vicodin including my responsible use of it over the last ten years, that can be backed up by my medical records. She kept refuting them with more nonsense. The last arguement she made was, "maybe it's time to look at another surgery." At that point I was done! The reason I was seeing her was because my surgeon said there was nothing more that can be done and I needed medical management of my pain!!! I told her to just write me a script for the Ultram and that I'd just keep dealing with it the best I can.

I'm sick of the ER, I'm sick of the days that I'm in so much pain at work that I can barely see straight, I'm sick of 3 hours of sleep because I hurt so bad, I'm sick of missing out on events and life in general because I'm hurting. I actually work in the medical field myself and I'm at a total loss. I am so concerned about my upcoming trip being a disaster! We're going for 9 days, 6days in the parks and when we are on vacation we constantly on the go, we aren't much for relaxing. Does anyone have any advice or words of encouragement? I think I'm in for a long, frustrating haul for at least awhile!

 

[Disneylover79]

Hi there I am new to this thread but I say your post title and can relate with you. I am so sorry that you have had to go through all of this, no one should have to suffer with pain. I am a NP and I even though I can't write for narcs in my state I would not be stingy with them since I myself suffer from chronic pain. First off do you need a referral (from the insurance) to go to the pain management doctor? If not find one that your surgeon likes and go there NOW. You should not have to suffer. I can't believe that your, or rather the primary, doctor refused to right it. The only thing I can thing of is because you are a new patient, but still it is not like you are drug seeking your records are right in front of her. As far as your WDW trip I would call your surgeon and tell him/her what transpired and see if they will write you a script for some breakthrough pain for the trip. I so hope you find some relief soon, you don't deserve to suffer. Good Luck and keep me posted...

 

[MEK]

I just happen to be cruising by and read your post. I'm also an NP (Cardiothoracic surgery) and I definately think you need a referral to a pain management center. Alot of patients after thoracic surgery have chronic pain and we always refer, because we are not equipped to prescribe long term narcotics. It's just not something we are trained to do. It's not the best and most inclusive way to treat chronic pain.

I do understand the PCP's reluctance to start prescribing narcotics. It is difficult to have a new patient and immediately start prescribing narcotics. The PCP doesn't know you from Adam and doesn't know whether you are taking your Vicodin or turning around and selling it on the street. I know you have good documentation, but believe me, some of that can be fabricated.

However, that PCP should refer you to someone who deals in chronic pain management. There are adjunctive treatments (medications) that can work with narcotics to best control chronic pain. These include some antidepressants and antiseizure medications.

I hear your frustration. I am also wondering if you have IBS, chronic constipation, or other lower GI complaints. Have you had a CT scan, colonoscopy, or barium enema recently? Are you pre or post menopausal? Is there any cyclic occurence to your pain? I think hormonal imbalances can definately exacerbate chronic pain conditions.

I really wish you a lot of luck in getting a referal to someone who can really help you. In the meantime try as many homeopathic remedies as you can think of - regular exercise, good nutrition, vitamin supplements, calcium with vitamin D, weight loss (if applicable). If you are plaqued by chronic constipation I would recommend trying Miralax on a daily basis, Your colon twists and curves in the region where your pain is. Some people even have a condition known as splenic flexure syndrome where gas and feces gets caught in that area of the colon. This can be a source of chronic pain. I have read about people really being helped by a simple daily dose of Miralax.

Anyway - good luck!

 

[DisneyAndRedSox]

First I just want to give you a big

Have you taked to your Primary Care Physician for the prescription for your trip? Reason why I mention this, I just had back surgery for a herninated L4/L5 disc. I got a script for percocet in the emergeny room (I woke up and couldn't walk one day after a few days of pain) and when I ran out while waiting for surgery my surgeon would not write me a script. Turns out even though my PCP was not treaing me, she had to write all scripts for narcotics. They have this rule to prevent 'doctor shopping'. She is affiliated with the hospital where the surgery was scheduled so she could see I had been in the ER, had a spinal injection and then had surgery scheduled. When I called her nurse for a refill there were no questions asked. The only annoyance, they won't transmit it to the pharmacy, my DH or parents had to go to the office and pick up an actual paper script.

EDIT- sorry I just read this again, I thought you had a new specialist- not PCP

 

[peemagg]

I want to encourage you to hang in there. I too have issues with cronic pain (RSD) and know how it can make life a bear. Don't give up! Keep fighting!

If this Dr is not going to look at everything and treat you from what they see, then get another one. Some doctors think they are the cats meow and know your body better than you. I have one of those now, but I am in a catch 22 and have to go to him for a bit longer because of insurance issues. You have to fight and demand that they listen to you and treat you with the respect and empathy you deserve and need. They just don't understand people in cronic pain. They look at us as drug addicts and that is all. Not that the pain is real! Talk to your surgeon about what happened and see if there is anything he can do to help. Maybe they can talk to your other doctor and set her straight. In the meantime maybe he will write a script for you for some pain killers for your trip.

Hang in there and know that you are not alone!

 

[arminnie]

. She told me "I don't prescribe narcotics. I'll try the Ultram, but I'm not giving you narcotics."

Another thought that crossed my mind - she may have previously been disciplined by the medical board for overprescribing narcotics.

I have friends on our state medical board, and know that some doctors have been disciplined for overprescribing and have had that portion of their license pulled. She may truly not be able to prescribe narcotics.

Still it sounds like this is not the right doctor. Please be careful when you do find a pain management practice. Most are very reliable, but there are some that push really highly addictive drugs like oxycontin when a lessen drug would do.

I live in a rural state. We had a horrific experience here last year. A doctor was disciplined by the state medical board and lost his ability to prescibe narcotics. He was very much into making a LOT of money off of giving large prescriptions to anyone who walked in his door (at least two of his patients died of overdoses from pain meds they took as he had prescribed). He just got arrested for blowing up (bomb) the head of the medical board.

I am not anti-pain meds at all (probably have a couple of vicodin in my travel bag right now) - but some of those "pain management" clinics are run by some really evil guys. Just make sure you end up at one that is legit.

 

[smokeyblue]

Thank you guys, so many different angles to look at, believe it or not, I've thought about pretty much every situation and scenario you've all mentioned. I work on an inpatient surg unit as a unit clerk and I've seen it all when it comes to pain management. It is such a negative topic. It took a lot of courage for me to broach the subject with the doctor, that's why I had such a negative opinion of my appointment, it just made me feel bad for asking.

I do think I have splenic flexure syndrome, however it is exclusive of the pain I'm having and it's something I've been able to control with the type of things you described. I guess I identified my pain as abdominal, but it is actually very deep in my abdomen, more like flank pain. I did have chronic epigastric pain, but I'm happy to say that my last surgery has nearly rid me of that! I do also have endometriosis, but that is well controlled at the moment too!

I have absolutely no experience with pain clinics. Like I said, I'm in a pretty rural area. The pain clinic is run out of the hospital I work at. I just don't know what to expect. I'm very much wondering if a celiac plexus block would help me, the pain is right in that area. I will never take oxycontin, they gave it to me once when I had pancreatitis and I've never been so embarassed in my life I acted like such a lunatic.

Well more to follow. I'll see what each day brings. I'm able to to manage the day to day so far, I just want some better options for the really bad days, no matter how infrequent.

 

[smokeyblue]

I have great news. I got into the "Pain Network" at my hospital and they are wonderful! I hadn't heard from them yet so I gave them a call. The coordinator answered the phone, said yeah I got your referral, it takes awhile to get in, I'll be calling you in the next few weeks. I told him that I understood and I would wait for the call. So I asked him about the program and what they do. He described the components and we discussed them. So then he started asking me about what was going on. He said he was glad to have talked to me because he understood better what was going on because they haven't seen many people with adhesion pain and really no one who had spleen pain.

He must have realized I genuinely wanted to make this work because he called the next day and gave me a next day appointment! So I saw the NP, she was actually my nurse manager for a short time. She's a nice gal and great with patents. She really got it. She explained what they can and can't do and that it was going to be an ongoing process. She decided to start me on Ultram four times a day and a low dose of Neurontin three times a day. OT/biofeedback, PT and health psychology are also part of the "network." She said I woud be referred to all. I sat down with the nurse and they had a PT cancellation and I got in in 45 minutes! When I went to sign in for that appointment they had an OT cancellation called in right then so I got to see them too. How lucky!

The PT guy was really good, and I liked his plan. The OT/biofeed back lady was even better. She is so sharp. I like her plan too. I'll probably start twice a week therapy next week. I'll also be seeing the health psychologist soon too.

I had one of my worst pain days on Monday. I would have never thought that three days later I would have so much hope!

 

[peemagg]

That is great that you are finally getting somewhere! I hope that they are able to get things under control for you.