Pain control for CP patient after/during surgery?

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Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 2/8/2011 11:59 AM (GMT -6)   
After reading the opiate withdrawal is hell thread and the other one about their current pain medications working on their chronic pain and not their surgical pain, I am very hesitant to have surgery. I have a hernia in my left groin area that is covered by a huge scar that is at least 4 inches by 8 inches. I have been told that because of this scar, they cannot operate laproscopically, that they will actually have to cut my abdominal area open to do this because there is just too much scar tissue for them to go through.

I am now concerned about pain management during this process. I was hospitalized before with this huge abdominal wound and was treated quite poorly by several nurses on the floor. I would be in pain for hours and crying for my pain meds and they would not answer the call button because I couldn't talk loud enough for them to hear me. They also left my catheter bag long enough to grow mold. I was there 17 days and never once got out of bed and was cathetered the entire time. It was quite a horrible experience. Not one that I want to repeat.

What suggestions do you have for me to not experience this issue? If I go forward with the surgery I do not want to be in excrutiating pain afterward. I am very concerned about pain management both in the hospital and afterward. I have an appointment with my pain doc on March 17th and I do plan to discuss this with him, but I believe he will probably leave the pain management for the surgical pain up to the surgeon. Are the surgeons familiar enough with chronic pain patients to prescribe the right amount and type of medication to help?

Thanks for input!
Trudy
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 2/9/2011 12:20 AM (GMT -6)   

 

  Dear Trudy,

     Good evening :-)   It is nice to hear from you again. I hope you have been able to rest today. You have been through a lot recently and I can tell you are exhausted both inside and out. One thing I wanted to say was that it was hard to read about your previous experiences in the hospital. That is inexcusable. No wonder you have anxiety about your up coming surgery. Anyone would be in your shoes too.

     When it comes to pain relief, your surgeon should have knowledge of all the meds you are currently taking and also what those meds are prescribed for. If you have any questions about what will be changed and for how long, be sure to voice those concerns when you see your surgeon next. I am sure many surgeons have had to answer the same questions many times. We do hear of patients having to go through a hard time with regular pain meds and schedules during surgeries, I really hope that is not the case with you.

     Please know you will be in our hearts and prayers for a complication free surgery and comfortable recovery. Try your hardest to not worry about it too much and rest up when ever you have the time. You will need all the strength you can muster to get through surgery and recovery.  

*hugg*
    dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9249
   Posted 2/9/2011 1:42 AM (GMT -6)   
Hi Trudy,

Please don't let the experiences of a just a few people stop you from surgery that you need. The folks who get through surgery and have good pain control don't take the time to come online and share...what's to complain about. That's one of the main reasons all you are finding are negatives.

I had a similar situation ... no pain control which had been ordered by my doctor... and I can assure you that there were nurses who's fannies hit the fan when he found out. I could hear him all the way down the hall. ...lol It's funny now but not when it's happening to you. The conditions you write about are not only unethical but legally criminal. There is no excuse for a cath being left in so long that there is mold growing!! When I've had problems with health care, or other issues, I've always had good luck writing an old fashion letter. Send it to whoever is in charge of that section of the hospital (if you can find out who it was) , the head of the hospital (always) and your state division of the AMA. Plus each state should have a regulatory board who oversees patient care and an liaison who can help you find what you need if you are having problems.

How do you find the right people to send letters to? Easy!! You can try a quick online search, but the fastest way I know to get the ball rolling is to write all of your local and federal legislators. YEP! They will be fighting over who gets to help you first. Let's be honest...they all want your vote and if they can do anything to make you happy and solve a problem they will do it in hopes of you choosing them come election time. (When our neighborhood had a noise problem from some dirt bikes I email our state representative and he and his wife came to the house to visit, even though he didn't really have much of an answer. It was kind of funny since I never did or have voted for the guy but he did make an effort. I happened to solve the problem on my own. )

But don't sit on the problem at this hospital. Think of how many other people go there daily with these kinds of problems, how many may had died because of lack of proper care....and you can make a difference. Give it a try...nothing to loose. And I'm sure you'll be treated like a queen when you have to go again because the ones who were there before probably aren't there any more... smilewinkgrin

Keep in touch...
Warm hugs,
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.

"Gravitation is not responsible for people falling in love." Albert Einstein

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 2/9/2011 2:48 AM (GMT -6)   
Wow, reading this was very hard!!! I had an awful time after my back surgery, but nothing at all like this. Thinking proactively, a written medication list (signed by your Dr) may be appropriate. I kept being told that I had to take 4 x a day meds every 6 hours....even though I have to sleep some times. When you do that with 2 or 3 then wam! When I re-type mine (and I will very, very soon), I'll be making sure to say during waking hours and take of the as needed.) Your PM should know how to make this run smoother for you. A almost called mine, because he works in the same hospital as I was in last week, but I was scared of rocking the boat.

One nurse who helped with my test yesterday said that the Dr could write an order to allow the patient to take his or her on personal medications from his or her own possession. That is what I am going to ask for when I go back for the bladder surgery. I may still ask for a shot of dilaudid and phenergan to knock out pain and nausea on the initial wakeup, but after that I'll be at their mercy and I'm making sure someone is with me the entire time and that I get that order signed in advance!!!! It's at least a suggestion for you and for our other members who are facing a similar situation.

I can't even comment on the horrors you suffered. I do believe in criminal liability for people as incompetent as you described. What was done to you should have been reported to adult protective services, if nobody else. In my state, that is a small part of the Department of Family and Childrens Services. Adult Protective Services could have at least sent someone in to see what was going on.

I wish you much luck!
Failed fusion L5-S1, Pituatary damage, HGH Def, Fibro, Bladder surgery failure, Nissen Failure, GERD, OCPD, GAD, MDD, CTS (Bilateral Surgery completed), CFS, TMJ, Migraines, Vit D, A, Magnesium deficiency, Pre-glaucomic (sp?), HBP, Idiopatic Reactive Hypoglycemia, Edema, too many Drug/Food allergies, sensitivites, and current meds to list.

Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 2/9/2011 7:23 AM (GMT -6)   
Thank you for your input!

I have a dermatology consult on February 24th to find out if I can even have the surgery - due to the pyoderma gangrenosum. We don't want that to return. I have not had an episode since 2004, but I was told then to never have elective surgery as it would probably come back. I am not sure what they will consider this surgery to be.

I am definitely going to talk to my pain doc on March 17th regarding the pain control during and after surgery and find out who will be responsible for writing the orders if I am approved for the surgery. Currently I am wearing an abdominal binder everyday to help with the pain of the hernia. I do not want to wear this thing for the rest of my life as it is not really all that comfortable. It does help with the pain, so I am trying to tough it out until after the dermatology consult, the pain appt, and then the surgical appt.

I never really even thought about writing anyone about my experience at the hospital. I was so sick then that I just wanted out of there as fast as possible. My open wound took 6 months to heal and then 3 months later I was diagnosed with leukemia. So back in the hospital I went, luckily it was to a different part of the hospital - the cancer ward and they were absolutely wonderful about everything. I will discuss this information over with my husband, but it happened so long ago that I doubt writing any letters would help. The most horrible experience happened in 2003. This is now a little over 7 years later. I just will never forget that experience.

Thanks again!
Trudy
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16776
   Posted 2/9/2011 2:50 PM (GMT -6)   
Hi Trudy, wow what an ordeal you went through. No wonder you are scared of hospitals. I have had some bad experiences myself but nothing like what you have described. I did have a problems once with a hospital when my husband was hospitalized for a month in a place. Like you mentioned, cleaning the room was not a top priority with them. But, they soon got real tired of me hounding them and a I ended up paying the hospital administrator a visit. We did not have any more problems after that, lol.

In the event you have surgery, check with the hospital before being admitted and ask information if they have a patient advocate on staff. If they do find out that person's name and phone number and take it with you to the hospital. If you run into any kind of a problem this patient advocate is there to assist patients and their families of any problems with the hospital. That is their job. Discuss this person with your husband too and let him know who to contact if something comes up and you need some help. I had a great experience with one and she was awesome. I had trouble with a dr and fired him only he refused to be fired and then threatened me, lol. She called him on the carpet in my room and it went well is all I can say and she did a full report on him. If one is not available then have someone in your family contact the hospital administrator.

I am like Chutz on the letter writing too, lol. It does help. And like she says don't base any decision on the need for care because of someone else having a problem and writing about it here at the forum. Hospitals are hungry for patients and they are now focusing more on patient care and they all want high marks. If you get good care somewhere or bad care go to their website and let everyone know about it.

Take care.
Moderator Chronic Pain Forum

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 2/9/2011 3:07 PM (GMT -6)   
I recently (the first part of last year) had to go in for knee surgery to take out some scar tissue that the ortho thought was causing my knee pain in my right knee. I was never treated so well in my life! The doctor was in constant contact with my pain doctor to let him know what we were doing and what meds were prescribed during and after surgery. Since I am on a high dose of Morphine for lower back pain I was allowed to take my own medications to the hospital and I took a BT med after surgery. The only thing my ortho was going to give me was tylenol 3 and I knew that was not going to help my pain at all so I was able to take my Percocet 10/325 that I was on at the time. While in recovery they gave me demoral, but apparently I had a real bad side effect to the medication (thought my arm was going to explode) and they flushed out the iv and gave me morphine instead.

I hate to hear that people with CP have bad experiences in the hospital and it really irritates me to hear this! I am sorry that they were horrible to you and I agree with Chutz that writing a letter is a good idea. Also while you are there, if you have a problem with certain nurses, you can always get in touch with the nursing administrator.

Scarred
I live to "Tame My Pain!" 

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 2/9/2011 5:32 PM (GMT -6)   
i know my neurosurgeon had the anesthesiaologist do the post-op pain control if it's a patient on high amounts of pain meds. good luck
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: fentanyl patch 75mcg. , Roxicodone 30mg prn qid,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 2000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, GABA 750mg,

Boxerlover
Regular Member


Date Joined Dec 2006
Total Posts : 275
   Posted 2/9/2011 8:25 PM (GMT -6)   
I can't really add to what everybody has said, just second everything. If possible, first I would research the hospitals that your surgeon has privaleges at. Try to get into the best one. Second like everybody said, have as much as possible planned in advance. Whether your pain doc, surgeon or anesthesiologist will be handling your pain and meds. Talk with your doc about ordering a pain pump. They are the best in that you are in control of your meds, plus most people end up using less meds than if they were getting them every 2-6 hours. Plus the nurses love them since they don't have to be getting pain meds every few hours. I totally agree with having the patient advocates number with you as well as having someone with you as much as possible.
 
I have had a similiar experience to yours as well as good ones and it makes all the difference. Because of what happened to me I have major anxiety about hospitals and sometime here in the future am going to need to go in for surgery. Fortunately I have been with my Uro for almost 20 years so he knows what to do with me!
 
I wish you all the best!
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