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Really need support and feedback - doctor is ignoring my pain

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Posted 10/19/2014 2:45 PM (GMT 0)
When I said to talk to your representative I was talking about the insurance thing. Like I said, I wouldn't mention anything specific, just that you're encountering roadblocks at every turn trying to get care for yourself.

I'm kind of grasping at straws but I see you don't have many options.
Posted 10/19/2014 5:04 PM (GMT 0)
Hey Jody...The oncology surgeon at UVA sounds like your best "hope".  IMO and in my personal experience, he/she is best equipped to deal with advanced stages of this disease.  My 3rd and final surgery was performed open ABDOMEN (incision from breast bone to pubic bone).  The cancer surgeon had to "clean up" not only relentless disease thriving post-hyst w/ovary removal, but also try to repair the damage done by the incompetent GYN surgeon. I had 2 botched lap surgeries prior, which should NEVER have been done, and left me forever mutilated (both vaginal and rectal).

Of course it's a personal decision because it's your body.  I can only give my opinion.  I would not allow another lap, nor would I allow my "parts" to be removed vaginally.  I would only allow ONC surgeon ever again.  Hindsight is 20/20...Hopefully you can avoid the pitfalls I've endured.  I am encouraged by your upcoming consult on Tuesday.  Please ALLOW open surgery, so that she can access your entire abdominal cavity to EXCISE (not burn) implants.  I know you've had multiple laparoscopic surgeries already.  A conservative approach is really no longer on the table.  Removal of uterus alone will not stop the endo.  Are you willing to have both ovaries removed, as they will continue to FEED the disease? I'm sure you know that there is NO cure for this disease, just methods for management.  None of my surgeries alleviated pain, but I had to have them in order to live.  I endured multiple series of Lupron, which did nothing but literally assassinate my bone health.  Don't let anyone talk you into Lupron...ever.

As for bedside manner of surgeon...Don't take it personal.  My cancer surgeon was in top 50 in the nation yet seemed cold as a fish.  His nurse told me that it was self-preservation for him to detach.  It was just a façade.  Underneath that white coat, I believe he had angel wings.  He was my saving grace.  I believe your Tuesday appointment will determine your future.  Focus on this meeting, this doctor, making clear and concise notes w/questions.  Take detailed notes, or even better, record the conversation w/her permission.  It will be a LOT to take in at once.

Your surgeon should be able to prescribe a pain med for 6 weeks post-op, then hopefully refer you for continued pain management if necessary.  Oh, and yes, Voltaren would be a great weapon in our arsenal against the massive inflammation, except for that one teeny tiny problem...stomach ulcers=(  I can't tolerate it either.

Again, please don't hesitate to ask questions here.  I don't claim to have all the answers, but I want to help you.

Hugs~~Dixie

Posted 10/22/2014 6:17 PM (GMT 0)
EMERGENCY...This poster (SoTiredofPain) NEEDS HELP NOW!

 

Rocckyd...I'm sending the "bat signal" out of desperation for Jody, who lives in Lynchburg, VA.  She is in crisis, but no doctors will take her in without insurance.  Can YOU help her?

 

I think it's worth a shot to ask.  She's in dire straits "in the floor" suffering with bowel-infiltrated stage 4 endometriosis. I know her desperation, but I'm too far away to "network" for her.

PLEASE HELP if you can.  Thanks all!

~~Dixie

Posted 10/22/2014 7:06 PM (GMT 0)
I'm not sure what I can do. I love my pain management dr and I can pass along his info, but I know he doesn't take medicaid. I don't know of any Drs in her area. She's in central VA so maybe a Dr in Richmond? That's still going to be a few hrs away, but in a city that size, you would think they'd have some sort of practice.

Maybe if she goes thru and ER a hospital might admit her? UVA and VCU are all research hospitals, but again, they are a few miles away.

I don't know what I can do to help. I can't drive long distances and I'm currently inpatient down at Duke. If you have an idea let me know. I'm trying to get sprung from here.

I'm really sorry and feel awful-I just don't know what to do to help.
Posted 10/22/2014 7:45 PM (GMT 0)
Hey Sweet Roccky=)  No worries, darlin'...Take care of YOU.  I realize from your posts that you deal with your own horrid health issues.  I also sense that you have a loving heart of compassion.  I didn't mean to "imply" that you could physically do anything for her.  I just "hoped" that with your self-professed CHEERS relationship with staff at your care facilities, maybe you knew someone who knew someone who could make some calls.  I have found out the hard way that often it IS who you know that makes things happen.

She's in Lynchburg, or there about...I'm in MS, of course, so my hands are tied.  I'm freaking because I know where she is...in crisis with deadly pain...and no hope. 

I CANNOT THANK YOU enough.  I want you to take care of YOU and Nathan first and foremost.  I'm trying to offer support through email, but she needs MORE.  I suggested that she call 911 to be taken by ambulance.  They cannot refuse to see her at the ER.  She's in the floor, projectile vomiting in pain with diarrhea.  She has no one.  She could die without intervention.

You are precious for responding.  Hope you can get "sprung" for now and back home with your little man.

HUGS~~Dixie

Posted 10/22/2014 7:52 PM (GMT 0)
Why won't she call 911? ERs have to treat, regardless of insurance. Especially if her condition has gone downhill. I hate to think of her being in so much pain.
Posted 10/22/2014 8:03 PM (GMT 0)
She needs to call 911 NOW. Dixie, if you're in touch with her, call them for her? Seriously, this has got me quite worried. Praying she will be okay.
Posted 10/22/2014 9:53 PM (GMT 0)
I agree, Rocckyd & BTL.  I've advised her to call 911 and have the ambulance come to pick her up.  I think her mom's there with her now, so that's good.  I too was concerned about her being alone.  Thank y'all for responding.

She desperately needs additional surgery.  I'm hopeful that the oncologist she was scheduled to see at UVA will ultimately be able to help her.  Meanwhile, she's without pain management.  (refer to previous posts)  I'm afraid she's fallen through the proverbial "cracks" of the healthcare system, with no insurance.

Endometriosis is a vile and wicked disease.  It's not a one size fits all diagnosis or treatment.  It's beyond difficult to obtain a diagnosis from "top notch" OB/GYNs.  It is not terminal, but it can without a doubt, end your "life" as you knew it. To say it's complicated would be a gross understatement.  Many doctors won't touch you in today's environment, for fear of litigation. It has become a "boutique industry" of sorts, with treatment available (often times) to only those who can pay large amounts out of pocket. (for travel and hotel expenses)  Insurance often will not "cover" treatments that are deemed "experimental", as with the preventative "films/barriers" to slow reformation of adhesions. I digress. 

Jody needs a doctor who will not only perform the necessary surgery, which is no cure, but follow up with a comprehensive team of specialists to address lifelong aftercare and pain management.  The likelihood of her getting what she needs with excellent insurance coverage is slim to none.  She has no insurance, or patient advocate, so both "slim and none" could use our help...if at all possible.  The last thing that she, or any one of us needs to hear, is that there is "no hope".

~~Dixie

 

Posted 10/23/2014 12:29 AM (GMT 0)
Its unfortunate she is in this situation but there really is nothing anyone here can do for her. I know Roc offered to give the name of her PM dr to her but without insurance or the funds to pay for care its pretty slim picking. An ER will treat her if she has in fact a true blockage that can be verified with a scan. I have been there & know. Hopefully she went to ER to be checked.
Posted 10/23/2014 3:44 AM (GMT 0)
Susie, I think there is something we can do for her - we can think of her, send positive vibes, prayers, whatever you choose to call it. I am! I am not a religious person at all but I believe in the power of the collective human consciousness to create good things in this world.

I really hope she called 911, Dixie can you give us an update?
Posted 10/23/2014 4:28 AM (GMT 0)
I've still been thinking, but can't really think of anything. I'm pretty young for a CP patient so I don't have friends who live in her area to ask. She's about an hour from me but I think her best bet is at UVA. It's a large and well known research hospital. I obviously think highly of Duke and that would be about 2hrs south for her. Either way, she's going to need help getting there and I don't know the insurance options. If she's up to it, maybe a drive down to Durham, NC would be helpful. It would be a totally different hospital system. Obviously the large Nationally ranked Duke is in Durham, but there are clinic throughout NC and up into southern VA. If she went thru that ER she wouldn't have a paper trail following her. Please don't think I want her to use a different hospital system for pain meds-I would never advocate for that. But-fresh eyes and a fresh start might work. I was super nervous when I was referred because I was sure some hot shot specialist would find reasons for everything and nothing wrong. The referral ended up being a life saver-literally. I've been spending much less time in ICUs since hanging out with the cool kids and medical misfits.
Posted 10/23/2014 6:52 AM (GMT 0)
Thank y'all for continued brain-storming for Jody.  I don't have an update.  I wanted her to call for ambulance transport to ER, where they could not refuse care.  Perhaps there would be a doctor with a heart of compassion, rather than a God complex who would actually CARE. A thorough doctor would admit her and do comprehensive testing to confirm the need for extensive surgery.  She (or no one else) should have to beg for help...insurance or not.

I think she's had a bad experience with her local ER.  I can say from my own experience over 20+ years, Endometriosis is not a disease you'll get prompt treatment for ANYWHERE...especially an ER.  The disease is elusive, certainly unlike a severed femoral artery bleeding out.  Therefore, IF you receive anything more than strange looks and whispers, it will rarely be sufficient or timely.  I can understand her fears of her pain being "dismissed" and her being labeled a "drug seeker". 

If you don't LOOK SICK, then you must not BE SICK...really?  What about elevated enzymes indicating liver failure?  Oh, well then...I was rushed by ambulance to Oschners in New Orleans 5 hours away.  There was a lesion of endo blocking my common bile duct, causing my liver to shut down.  It required extensive surgery by ONC surgeon to save my life.

Although I understand what you're saying, Susie, I respectfully disagree. Those who live within driving distance of her may have suggestions of medical centers/doctors in her area.  Roccky has some great thoughts in her post tonight.  Perhaps a "fresh perspective" through a new hospital may be her answer.  There is ALWAYS the power of PRAYER, as proven through threads asking for PRAYER for your husband.   We should not turn our back on our fellow man/woman...EVER.  I believe that we should "pay it forward".

I am very passionate about the state of America's healthcare.  The leading cause of death, I believe, is often "detachment" and "apathy" shown by medical professionals.  I'm just sayin'.

Thanks again, Roccky=)  Get some rest and replenish your strength for next week's festivities!?!  I LOVE HALLOWEEN, even @ 53...and Nathan's birthday on the 30th...explosion of possibilities for cake, party, etc.  My husband and I totally get all into it every year.  We don't dress "the bloody mess" stuff either.  We do scarecrows and hobos, or Raggedy Ann(s) and Andy or "March of the Penguins" or Cat 'n the Hat w/Thing 1 & 2, etc. etc.  This year it's on Friday, so we plan to take our celebration to my mom's nursing home.  I'll bake a HUGE sheet cake with "spider webs" and spiders made of chocolate Do-nettes.  Sorry...I get carried away.  Can you tell?

HUGS~~Dixie

Posted 10/23/2014 4:19 PM (GMT 0)
BTL, I think Jody is aware of the support this forum offers, that is what its all about. She obviously is not feeling well enough to come here at the moment. Hopefully, she will check in & give an update.
Posted 10/23/2014 5:24 PM (GMT 0)
Thanks everyone for your replies. Today is a very hard pain day. The Hippocratic Oath isn't followed or understood by many doctors. If it was actually a law to first do no harm, then maybe they'd listen.
RocckyD - Thanks for your support. I live in the Central Va area but will travel. I would appreciate any feedback you have
Thanks again
Posted 10/23/2014 5:41 PM (GMT 0)
I'm of the opinion that the ER is your only choice for immediate relief. They won't manage your pain long-term, or even more than a few days (and maybe not even that, I don't know what your controlled substance history report looks like), but at least it's something. When I've been in your situation it seems like I would have given anything for just a few MINUTES of relief, let alone a few hours.

Good luck, and my heart goes out to you.
Posted 10/23/2014 6:08 PM (GMT 0)
The time to go to the ER is when your in enough pain that you have objective symptoms, symptoms such as vomiting, sweating, increase in b/p and resps, etc, symptoms the Observer can see.

Subjective symptoms those only the patient see's are the one's ER Dr's usually shrug off and ignore.

Right or wrong it's the way things work these days so going when you have symptoms and signs of distress is clearly a better choice and especially with endo since so many Dr's are males from the old school who can't imagine the pain and can't always see anything clearly noted on scans.

In otherwords the burden of proof falls on the patients.


As for doing no harm? It's interpreted so many ways and refusing narcotics in most of their eyes doesn't count, they look at the risks associated with overdose, addiction, ruined lives so Not treating you is viewed as doing no harm.
Posted 10/23/2014 6:28 PM (GMT 0)
I really wish the ER was an option. This pain is getting worse. Unfortunately, the only ER within an hour of me has treated me worse than trash in the past. The last time I went for pain, it was my 2nd visit to the facility. I was quickly branded as a "drug seeker," despite the fact my pulse & BP were threw the roof. I can honestly say I have never received more degrading treatment. I am a human, so at least treat me with dignity. This hospital is well-known for quickly labeling patients & denying care. But thanks anyway. All I can do is pray I get through this tornado of pain & gut problems & then attempt to find a pain doctor. And, RockkyD, I am a patient at UVA but not in their pain management. I need to find a PM doc before they will do surgery on me, so I am on the look out.
I really appreciate everyone's support.
Posted 10/24/2014 3:04 PM (GMT 0)
Hi, I was just wondering how you are doing. I hope you aren't in agony anymore!
Posted 10/24/2014 5:55 PM (GMT 0)
SoTiredofPain,

I just read through this thread and am sorry about what you are going through! It seems to me that doctors often treat low-income patients with little respect.

Given your financial situation, let me suggest creating an account at:
http://www.gofundme.com

I recently helped someone I know battling breast cancer with a $500 donation. While I don't think you can create an anonymous listing on the site, it may be a way to generate some funds for you and help you get to a better doctor.
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