Jumping through Hoops for Ketamine Infusion
 

Good day All,

I wanted to write about my frustrations on my last doctor appointment that I had yesterday. This was the one I was waiting on for the last 3 months.

At first I was impressed by the nurse understanding CRPS which made me feel better. I was at a teaching facility so the Resident was the first to see me and then the attending. I had written a timeline prior because this was a new place and they were only going on referral. After looking through everything the doctors agreed I needed Ketamine Infusions. At this Pain Clinic it is done @ their hospital for 4-5 days, which works better for me because I live about an hour and a half away. Then they told the next part: I would probably need more Sympathetic nerve blocks. I was shocked and made it very clear that after 3 blocks they stopped even working at all and they were all very painful and 1 didn't go so well & they hit another nerve in my spine. I had 5 all together and didn't get much relief. My last pain doctor agreed I would not benefit for anymore at this time. I was told that the insurance may need more because I hadn't had the blocks at this new facility. Does this make sense to anyone? I had them in Boston and Virginia by very qualified doctors.

The next one that threw me for a loop was they wanted to put me on another anticonvulsant, Trileptal. I have already tried Neurontin & Lyrica with HORRIBLE side effects & they made me sicker and in more pain that I actually am. I again made this point clear in a factual tone & the Dr says I need to try it because insurance wants to see I have exhausted all resources. They also tell me that it may make me feel sick and to work up slowly but the side effects should face in a few weeks.

Now I'm sorry but I am not a guinea pig. They are asking me to re-do things that made me worse and I just don't feel this is ethical. Lyrica made me so sick when I was getting off of it that I literally thought I was dying. Neurontin made me shaky & made me a zombie not able to focus at all on anything.

I asked about LDN and told them I had been reading some research and this tends to be one of the best medications used for CRPS. They told me that they don't use that in their program for CRPS so therefore they wouldn't.

I left the appointment and cried in my car. I wasn't treated as an equal. I felt that it was assumed that I was stupid and just 'googling' things. I was even told after I told them I had watched a lecture on the newest treatments, that I shouldn't believe everything I see on TV. Not that it matters, but I have a masters degree, I am reading medical journals and I am getting some great feedback from you guys..and after all…. we are the experts. We are the ones that know our bodies the best. CRPS has taken away almost everything I love, so now on the weekends I study everything I can get my hands on and this was all dismissed in one statement.

Am I alone in these demeaning appointments? At one point, they even commented that I wasn't meeting the criteria for CRPS because my feet weren't red and swollen today. 90% of the time they are. But for some reason on that day they were just cold, even in fleece socks. From what I understand everyone's CRPS looks different.

I have to stick with this team bc I want the ketamine but I am not sure how to handle further appointments. They are pushing the paperwork for Pre-authorization for Ketamine through insurance but did any of you have to jump through these hoops? I am feeling frustrated and so mentally and physically exhausted. I really need some decent care.

I was told the following "...just because you fill a prescription doesn't mean you need to take it to have the negative symptoms you had before." Wink, wink.

Some past appointments I have felt I am damned if I do and damn it if I don't. I've gone in educated and I've gone in accepting their knowledge.
But I have to say it's my body and I am it's best advocate!

How frustrating!

I am not sure where the disconnect is here. If you had 5 blocks ANYWHERE and your insurance received claims on them, then they already know you tried that. The facility should be irrelevant. Getting more than 5 if they are not working is unreasonable. Was it just the doctor who said you needed more or the pre-auth people?

Further med trials also seem unreasonable to me unless it is a med you want to pursue. This sounds like an issue of documentation. It should be written in your chart that you have tried meds and blocks. End of story. If they need records from your other doctor to accomplish this, then get those to them. But Typically your insurance doesn't even receive the notes unless something goes to "peer review".

I didn't have to do any of this. I had tried two medications and had either side effects I didn't like or inadequate relief. Trying another med was, in my doctor's opinion, really up to me. I never had any sympathetic blocks at all because I just didn't want to. My insurance didn't put up any roadblocks to my receiving ketamine. I am on a regular old commercial United policy, no bells and whistles.

You can always call your insurance yourself and ask what they require. I have done this with my policy and actually found them to be quite helpful.

On LDN, it seems to be a whole other animal. Sometimes neurologists give it or more "holistic" type MDs or DO doctors. You could call your local compounding pharmacy and find out who is prescribing it.

I am sorry you left your appointment crying. I have done that plenty of times. It is never fun. As if there is an infomercial on LDN or anyone's CRPS limb looks the same all the time. That's hilarious.

Keep after 'em till you get what you need!

Inspire,
I am so sorry that you had to go through such a demeaning appointment!! You are definitely not alone in being treated like this. I hate to say this, and I truly hope that this is a pure coincidence, but I had the absolute worst experiences at the teaching hospital and all of the Doctors affiliated with this Hospital (Shands of University of Florida.) This teaching hospital monopolizes a good 80%-90% of Doctors in the area. I can only remember a couple of times NOT coming out in tears and feeling completely belittled, demeaned, exhausted, and so frustrated!! I am sure that you know much more than these students. It sounds like you are in a very tight spot with wanting the Ketamine infusions, but these guys are blocking your every move. A few things that could possibly be done on your end: First is there ANY possibility your last Doctor would write a letter just simply stating that you didn't respond well to the nerve blocks? This could be all you need to stop Boston's idea that you haven't exhausted that option. Same thing for the medicine. Is there any Dr. that kept good enough notes on your side effects of the medicines that would be in your corner and could write this? If this is not possible, you could get a personal copy of your records from the Dr(s) that would have the needed info. I would highlight ANY of that documented information. Next I would call my insurance company and speak with a higher up. I would question your insurances protocol for these infusions. Ask them if they would be so kind to email you (that's typically the best you will get from your insurance company, an EMAIL) but if you explained to them what this Hospital wants to do on their dime.....(not really, we all know this from our bills) they may feel more inclined to go the extra mile for you and help you figure it all out. One FYI is that most teaching hospitals have an income based sliding scale. Don't leave a stone unturned here and apply right away. Next, you need a really great GP. I have found a great GP is indispensable to avoid getting fragmented care. They can help in writing letters or just by being on your side. They are out there. Again I'm sorry you had to go through this terrible experience. Hold your head high.

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Oh the joys of hospitals and insurance. I am so sorry that your appointment went so horrible. As many of the others have already noted, try to get every piece of documentation together from your previous doctors and start with calling your insurance company. Yes, there are treatments that your insurance is going to want you to try first but you have already tried them with another doctor and they didn't work then, why should they work now. Bio did give you a nice little hint there by the way. I have had to do that myself a few times.

When dealing with insurance companies, always write down the representatives name, id number, if you can manage to get it from them, date and time of day. It is always nice to have that handy in case they tell you one thing and someone else tells you another thing on another day. It also helps when at an appointment and the doctors want to try something that your insurance company has already told you that you can skip.