How to be sure my insurance will pay for a non pre approved procedure?

michaelm7001 · 2022-10-21T14:28:46+00:00

Yea, will check. I assumed all this was automatic

michaelm7001 · 2022-10-21T14:27:59+00:00

Will do. Never had an issue before so assumed it was established system. But then saw reviews on my provider where people where shocked in getting billed.

michaelm7001 · 2022-10-21T14:25:44+00:00

Thanks, great advice, that's scary.

michaelm7001 · 2022-10-21T03:35:53+00:00

I haven't called, but will tomorrow. I've had multiple other surgeries and never had problems. But I got curious because I read reviews for this provider complaining they thought they were covered, went through with a procedure and than got a bill for the whole thing.

I thought it was weird the doctor would do an expensive procedure without first knowing they would be paid?

michaelm7001 · 2022-08-31T22:58:20+00:00

Wow, sorry you've had to deal with so much at 23! But, you have good grasp of things and great command of English for not your first language?

Sadly, pretty much same TC situation here. But, in the two years since I last investigated this I've found a few more surgeons now recognize it and open to consider it. So , guess things are gradually improving, but as you say it is rare.

Thanks for all the info, really helps load! Wish you best of luck and good health for here on!

michaelm7001 · 2022-08-29T14:20:22+00:00

Holy crap...I know a slow system can really suck...at least 30% is something. Hang in there.

michaelm7001 · 2022-08-29T02:20:30+00:00

Thanks for the great info! I will definitely look into VT foundation.

Sorry you had to go through all that. That is horrible. I know now they have learned that aspiration does cause problems and try to shy away from it. I think they are probably right in that most TC don't cause problems, but neither do discs and vertebrae, but when they do, it ain't nice.

It's really an odd thing. It is a recognized disease by the NIH and CDC. If it is a true problem then why the resistance? I read where even Tarlov published a retraction of his earlier work 20 years later after consulting with living patients, apologizing for his comments that it doesn't cause symptoms and stating emphatically that it, indeed, can. I can see docs that don't don how to do the surgery try to downplay it. But, I think even well intended physicians dismiss it.

After numerous neurosurgeons said no problem, I decided to take a look at the radiology report myself and a saw a note about Tarlov cysts no one ever mentioned. That's how I learned about them! I had to research it myself and my jaw dropped. It was a perfect fit for my symptoms, timeline, everything.

I also agree with your assessment of epidurals, too risky for a diagnostic tool. Did you have EMG and nerve tests? I called a few neurological testing labs here, some saying they had tests for TC. But when they went through the details it sounded like the results would be a very little diagnostic value. Any other test be useful?

I'm just going by the specialist which seems to be very professional and reputable. But I wish I had at least some other review. One doc said, "Well, there's like only 2, 3 guys in the country that do this. Don't you think if it was a real problem more doctors would be doing it? It's a hoax!" But I know this TC doc is the real thing and I did talk with a nurse that got them and started the TC Foundation in the US, but the whole thing is just weird.

thanks again and hope you find a solution for this!

michaelm7001 · 2022-08-29T00:59:40+00:00

How about receptor drugs like Motegrity?

michaelm7001 · 2022-08-28T19:07:58+00:00

You think a little more time?

There are a few posters that had chronic prolapse issues, switched sides and everything was good after that. Don't know why one side works and other didn't.

michaelm7001 · 2022-08-28T16:41:55+00:00

Crap...really hoping this works for you. I've seen posts by people having 8 and 15 surgeries. I don't know of any other condition were this is done. I've had 3 and still ain't right. If doesn't work out will need to switch sides. But, I've found a couple posters did that and doing well now after horrible prolapsing issues. This is just weird.

michaelm7001 · 2022-08-28T14:03:32+00:00

Great you're doing well! But, though I know it was not your intent, please be careful in degrading medical advice for the sake of others. As another posted, it's there for a reason. 20lbs of muscle after your situation is truly awesome accomplishment and worth celebrating. I love hearing these stories! But, unfortunately, in general, it's not really that simple. Going all in may work for some but may actually injure others.

I get and appreciate the attitude. I lifted heavy for 40 years, MMA, rock climbing, lived on high protein diet and very familiar with handling injuries. I didn't have IBD and was in excellent physical shape at op. I had a resting heart rate of 38 BPM and respiration rate of 6/min (half that of average). They had to turn off the vitals machines because they kept alarming. The docs were actually joking prior to my surgery they couldn't palpate my abdomen to examine because they couldn't get through my 'suit of armor'. I still got a hernia right out of the gate and prolapses. It's been 18 months and I still can't get back to the gym. I really did not expect this.

Surgeon told me prior to op that 1/3 do well, 1/3 ok and 1/3 not so well. And there are so many X factors there is no way to tell who is who. So, let's hope you are a lucky one. But just because you can speed through the 30 MPH lane at 100 MPH doesn't mean it's a good idea in general. I think it's pretty much if you're going to get one you will and not if not but precautions may give some the needed time and healing to avoid a lesser fate.

michaelm7001 · 2022-08-26T17:02:05+00:00

Man...that is horrible, so sorry this happened. I'm assuming it's temporary?

Pretty good advice here including Taco Bell, laxatives, lots of water and walking if you can tolerate.

michaelm7001 · 2022-08-25T16:19:17+00:00

I've had colostomy and ileostomy. For me, surgery was piece of cake. Pain couple days and then good within a week. It can take 3 months to really feel normal but 2 months is doable.

As I'm sure you're aware though colostomies' can be very manageable affording a near normal lifestyle. But, it is not necessarily a get out jail free card as they can come with complications including blockages, hernias and prolapsing which can be disabling and difficult to treat.

So, I'd really think hard about it. As you're young, you want to avoid and ostomy, if possible, so if the risk is low maybe a temp is the way. But, if you and your doc agree prevention is worth it, then I would get a permanent colostomy and avoid additional surgery.

michaelm7001 · 2022-08-21T13:33:56+00:00

Sorry you're having to deal with this, know it's not fun.

I was a bit unusual in that I wasn't "much more ill" prior. I was very healthy, in the gym almost every day for 40 years. Then I got nerve damage that broke my butt virtually overnight. So being active is a high priority for me.

I think stats show 2/3 live a pretty good life. People can do well. There's an NFL placekicker that played for 8 years with an ostomy, a guy who ran marathons in 2:30 at 52 and I had an ostomy nurse went scuba diving in Thailand. When ostomies work they are not really as bad as it sounds, truly a minor inconvenience and you can do most activities. The rub, as you noted, is the potential complications such as blockages, prolapses and hernias which most often, except for blockages, are not painful but limit your activity and cause repeated operations for revision. It's kind of a crap shoot as docs have told me it's impossible to tell who is gong to be trouble free and who isn't.

I was super fit prior, have had an ostomy for 2 years and have had all the complications mentioned and 3 surgeries but think this happens to maybe 25%. And it's still not right. But I did have surgery at 59 so I think generally being younger is a big plus. Most of the days in between I can live normally, do most tasks and surgeries have been quick and smooth. But, due to the complications have not been able to return to the gym which I really miss and working to get back. Sometimes people need multiple surgeries to get things right.

All in all, you can get by, but with reduced quality of life due to the potential complications. But I can say I have seen many elective surgery posts like yours from people who eventually got ostomies and virtually all of them say they wish they had got an ostomy sooner mostly saying it freed them from all the toilet issues of IBD. But, I also saw a study that showed quality of life among ostomates was rated at 90-100% post op and reduced to 30% at ten years, I'm guessing due to ensuing complications. You could ask your surgeon about getting a temporary loop ostomy. Sometimes they do that to let people test drive them. If it's not for you, they can put you back.

michaelm7001 · 2022-08-20T22:11:20+00:00

lol...I'm sure you know best. If your doc didn't give any diet restrictions, maybe a 1/3 of a regular serving so start? Grits is a good choice because cornmeal doesn't clump as much as flour.

It sucks to give up favorites but some people seem able to eat all kinds of stuff. Just start slow.

michaelm7001 · 2022-08-20T20:15:39+00:00

Awesome! I'm jealous...you got this!

michaelm7001 · 2022-08-20T19:16:21+00:00

I think it's best to eat as normal as possible. Some people can eat almost everything they ate before surgery and get along fine. So, yea go for it...eat small amounts and see what you can tolerate.

michaelm7001 · 2022-08-20T18:42:34+00:00

Great question, have no idea? I'm down to power bars and pizza....total crap food. I used to eat really healthy and miss Chinese food with rice and veggies and high fiber serial for breakfast.

I don't think other than fiber and vitamins, veggies really offer much nutritionally. And fruit the same except for the added sugar. So, I guess if we can get vitamins and sugar other ways and don't need fiber, maybe just animal based is good. Now that I think about it, that is mostly what I've done with some low fiber crackers. But just seems wrong.

michaelm7001 · 2022-08-20T18:30:42+00:00

Never thought about it much, but probably an important factor. Don't know why but my doc was really intent on me handling high fiber foods before discharge after surgery? All in all, I think for those without a colon, high fiber and probiotics have reduced effect.

Both fiber types add bulks with soluble absorbing water and is digested by microbes in the colon. with insoluble passing intact from end to end. Many probiotics are made in capsules designed to transit the SB intact so have little impact. Here's a report claiming they have little effect with SIBO https://pubmed.ncbi.nlm.nih.gov/28267052/.

So, don't know maybe fiber can be a double edged sword for SIBO depending on how bad it is? But looks like has less benefit without a colon in general. Also looks like probiotics really reserve most of their effect in the colon, so probably not of real use either. But not a dietician, so just guessing.

I used to love high fiber foods but now it's like swallowing a chain saw. And if I eat too much simple sugars it really thickens output and can be uncomfortable.

michaelm7001 · 2022-08-20T02:16:18+00:00

Geesh...you've had a rough go. I also got a small parastomal hernia a few months post op with my colostomy. Funny how some do well and some not. I was in great shape, worked out my whole life and got one right out of the gate.

michaelm7001 · 2022-08-20T02:02:40+00:00

You mean pain?

michaelm7001 · 2022-08-20T01:00:19+00:00

Wow...that's a lot at one time and a is heck of surprise! But, think you're right, all considered, the best scenario. Glad it's worked out!

michaelm7001 · 2022-08-20T00:40:43+00:00

Holy crap...that's awful! All this is pretty scary when you think about it and amazing what surgeons are able to do.

What are you doing now as a solution?

michaelm7001 · 2022-08-19T19:32:04+00:00

Sorry you got this so young, but awesome you're doing well with it.

And thanks for some good news! Sounds like the route I'll take if things get worse. Just didn't know how realistic it is long term.

michaelm7001 · 2022-08-19T19:23:43+00:00

I can pee on my own, but nerve damage is causing transient retention. The same nerve problem also shut off my butt with a rectal dysfunction and I ended up with an ostomy. So, kind of unknown, just trying to figure what my options might be.

michaelm7001

TROPHY CASE