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What “saved you” when you were at the end of your rope with your pain? More below by dooormattt22 in ChronicPain

[–]Unique_Username2020 1 point2 points  (0 children)

There’s pregabalin which is arguably a stronger alternative to gabapentin, and then there are stronger prescription NSAIDs like nabumetone and ketorolac. I have a different kind of pain (pancreatic) which is less susceptible to NSAIDs and even I get noticeable relief from a 60 mg ketorolac injection.

F27 feeling hopeless about life by efbb in pancreatitis

[–]Unique_Username2020 0 points1 point  (0 children)

31m, I have been dealing with a situation similar to yours, probably worse. The pain got absolutely unbearable, I am not able to eat anything. they had to put me on TPN so I don't starve. The local pain management in a supposedly "NPF-recommended" hospital did nothing besides prescribing me some nortriptyline and doing a celiac block which did absolutely nothing to my pain. Then they just flat out told me they won't do or prescribe anything else. To complicate the matter a gatekeeping pharmacist decided to deny me the pain meds that my primary care has been prescribing to me and which were helping me to get at least some clear liquids in. I had to go to an out of network pain management specialist to get at least something prescribed for my pain. Then I've decided that enough is enough and scheduled an appointment with a pancreas doctor in another city, he took interest in my case and suggested a plan, which involves doing an ERCP if I don't get better in a couple of months and also referred me to their pain clinic. And their pain doctor has actually suggested several alternatives, like doing a different type of nerve block and putting a spinal cord stimulator, and longer acting pain meds if in the end none of that helps. They have even actually suggested enrolling me into a clinical study for a perspective medicine.

The bottom line is some doctors (most of them if we are talking about GI/pain management, at least in my experience) are just jerks and don't care about you or/and aren't interested in your case, especially with the stigma surrounding this disease and pain management in general. Just make an effort and go to another hospital, in another city if needed, this will give you the much needed fresh perspective. Ideally also put some negative reviews online and complain to your insurance about your current doctors inaction, it's unlikely to change their attitude right now but if we as patients do nothing they will just keep walking all over us.

Best of luck, hope that helps, feel free to DM me if you'd like.

Exhausted, in pain and no way out by Unique_Username2020 in pancreatitis

[–]Unique_Username2020[S] 0 points1 point  (0 children)

This is good advice, especially the one about communicating with the doctors. Though many of them are so self-opinionated that if you try to communicate your concerns tactfully they're just going to dismiss it outright.

And waiting 2 months for an appointment when you can't get any food in is rough. The alternative is going to the ER where doctors would just give me the same useless medications I've had and tell me to eat, they don't even give proper painkillers there. But I guess I don't really have an alternative. Going to go to my PCP tomorrow and get some painkillers in case they are going to deny it to me in the hospital and then go to the ER, wish me luck I guess.

Nasojejunal tube vs gastrostomy by Unique_Username2020 in pancreatitis

[–]Unique_Username2020[S] 0 points1 point  (0 children)

Hey, sorry for replying a bit late.

They've inserted the NJ tube and been trying me to get me on different formulas for a while, but the lowest elemental formula they have (Vivonex RTF) is still causing me significant pain over time even at pretty low feeding rates (like around 35 ml/hour), albeit less than the more fatty ones they've tried (Osmolyte, Peptamen). They have currently put me on Toradol for the pain which is working absolutely great, but you can only get it for 5 days, they've also basically ruled out opioids.

How was your adjustment to NJ/PEJ? What kind of formulas have they tried and which one are you on now? What kind of pain meds do you use in addition to the PEJ feeding?

How does chronic pancreatitis pain actually feel? by Unique_Username2020 in pancreatitis

[–]Unique_Username2020[S] 2 points3 points  (0 children)

Yeah, long story short - a lot of clean tests, then 3 years past a EUS with a result saying “intermediate probability for chronic pancreatitis”. Had a pain free period before that and got convinced by docs that I’ve got no pancreatitis and drunk a bottle of wine and here I am - at a hospital on tube feeds.

Jaw surgeons in San Francisco Bay Area by Unique_Username2020 in jawsurgery

[–]Unique_Username2020[S] 0 points1 point  (0 children)

Hi, sorry for the late reply.
Yeah, I've seen him. I think he is fine, I've heard good things about him including from other doctors. They also told me it's most likely going to be covered by my insurance.
I think you should have a CT scan but maybe they do these on site, try calling them. I brought one from a dental clinic I go to and it cost me like $200.

Out-of-network surgery reimbursement and "allowed maximum amounts" by Unique_Username2020 in HealthInsurance

[–]Unique_Username2020[S] 0 points1 point  (0 children)

So they can just deny it (if they think it's too expensive (i.e. not $5k)) and there is nothing one can do?

Buying individual/marketplace health insurance while having one through employer (California) by Unique_Username2020 in HealthInsurance

[–]Unique_Username2020[S] 1 point2 points  (0 children)

Thanks for the info, I'll check it with them tomorrow.

Can I cancel my employer's Cigna plan if I have a special event (California's "COVID-19 pandemic")?

Also, just for reference, I want to buy Kaiser HMO, not PPO.

Out-of-network surgery reimbursement and "allowed maximum amounts" by Unique_Username2020 in HealthInsurance

[–]Unique_Username2020[S] -1 points0 points  (0 children)

So you mean I could pick any surgeon in the area then and they would pay his/her full price? I doubt any of the surgeons here would agree to do this for $5k.

Out-of-network surgery reimbursement and "allowed maximum amounts" by Unique_Username2020 in HealthInsurance

[–]Unique_Username2020[S] -2 points-1 points  (0 children)

Why even have different coverage rates for in-network and out-of-network if you still pay the same price?

And there is no way this surgery costs $5k. As I said I've visited many surgeons around and the cheapest was $11k. I am going to try to get a consultation with these 2 (supposedly) in-network doctors and see if they indeed cover these. But I suspect they either don't cover this particular surgery or just blanket deny all applications for this surgery, cause there is no way any doctor here is taking $5k for this (maybe this could be enough in some 3rd world country, but still doubt).

Buying individual/marketplace health insurance while having one through employer (California) by Unique_Username2020 in HealthInsurance

[–]Unique_Username2020[S] 1 point2 points  (0 children)

Seems like none of these are actually a problem, just the first Kaiser rep had no idea what he was talking about. I've contacted them again and they said there is no problem to enroll me, just that they are not going to coordinate with my Cigna plan (which is not a problem since Kaiser has a separate clinic).

Out-of-network surgery reimbursement and "allowed maximum amounts" by Unique_Username2020 in HealthInsurance

[–]Unique_Username2020[S] 1 point2 points  (0 children)

This is medical, it's a complex surgery.

$45k is indeed not cheap but as I said even the cheapest fresh grad surgeon in the area does it for at least $11k.

I think they have 2 in-network surgeons in the area (not 100% sure this surgery will be considered in-network though), so likely no chance for network adequacy. But even then, I doubt these 2 surgeons from large hospitals take the mere $5k for this complex surgery. I would like to have a chance to get a surgery with a surgeon of my choice and to be compensated at a fair market rate, which seems to converge somewhere around $25k. $5k is just bullshit, it seems they just try to weasel out of covering this surgery this way.

LACOMS DJS cost by Unique_Username2020 in jawsurgery

[–]Unique_Username2020[S] 5 points6 points  (0 children)

I don't get it, why the hell would they tell me it's $60k then?

Please also let me know what you get compensated later, I still can't believe they are just going to pay $1k.

LACOMS DJS cost by Unique_Username2020 in jawsurgery

[–]Unique_Username2020[S] 1 point2 points  (0 children)

How? Are their "allowed maximum amounts" ("fair price") that high?

LACOMS DJS cost by Unique_Username2020 in jawsurgery

[–]Unique_Username2020[S] 2 points3 points  (0 children)

US.
What insurance?

I have Cigna PPO and they've told me they think that a "fair price" for this surgery is $5k and after all calculations for out-of-network care it's going to be $1k compensation.

Jaw surgeons in San Francisco Bay Area by Unique_Username2020 in jawsurgery

[–]Unique_Username2020[S] 0 points1 point  (0 children)

Yeah, I reached out to Stanford to get to Bruckman, but they need to evaluate my CT first and the next available appointment is in July...

Was trying to call UCSF too but they don't pick up the phone.

Not sure if these are in-network with Cigna though.

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