Ketamine Consultation Scheduled
 

After having one last discouraging appointment with my current PM doctor, he finally asked me to start searching for a doctor that might be able to do some sort of ketamine treatment. He told me which hospital affiliation I should start looking through, Detroit Medical Center.

Yesterday I managed to get in contact with a local pain management doctor that, after a brief phone conversation, agrees that standard pain medications are not providing me with enough relief and would like for me to come in for a consultation with him this Saturday morning. He performs outpatient infusions starting with 2 initial sessions 2 days apart to see if it will provide me with relief. If it helps, he usually continues with a another 5 sessions, (7 in total), over another 10 day period. He then does follow up appointments as needed.

I was already told that my insurance does not cover the treatment. Although I can not afford the $700 per session at this time, which he knows, he would still like to speak with me anyway. He feels that he might be able to help some way or another.

Is there anything that I should be asking when I go in, other than treating this as a standard pain management consultation to find out if he actually knows enough about CRPS?

Alaina,

I would ask how much total ketamine is given each session and at what rate. There are different protocols for sub-anesthetic dosing. Some people get quite a bit more than others given over a 3-4 hour time frame as opposed to less over 1-2 hours.

Also do they start you right out at the full dose or titrate? I started at half my dose and we worked up over three sessions. I likely would've been fine going straight to the 0.5 mg per kg that I am on now but my doc is cautious.

What is his schedule for boosters?

I would certainly shop around and see if you can find even one more clinic that does these. Mine are done at my doctor's office infusion room and the cost is only $300. That is the cash price for medication, monitoring, etc. I am there for 1.5 hours ish. You may have to cold-call. Pain clinic websites don't always list infusion services.

On insurance coverage, sometimes billing people know just the right codes to put in. It's worth double checking with the staff and maybe trying to run it through.

I would also ask what he typically sees with onset of pain relief. Results are sometimes cumulative per my doc and this is in sync with my experience. If I had decided not to go forward since they weren't earth shattering initially, I would've missed out.

I hope your appointment goes well! :hug:

Whoa! $700 per session. That would be $7000 out of your own pocket. Man, Sometimes insurance companies really tick me off. And they won't help you cover the cost of that? My goodness, Purplefoot! Why not?

:grouphug:

Spike - I'm still not entirely sure why his price is so high, but his staff member told me that that is not a "set in stone" price. I think that they have fought so much with insurance companies in the past without success that they stopped trying.

Littlepaw - Thank you for the few questions to ask. You mentioned that your first sessions did not provide a whole lot of relief, but by continuing to go, you did start to see more and more progress. It makes me wonder how he is expecting me to make a decision to keep going based on 2 sessions.

I don't really know a whole lot about Ketamine infusions and how they are supposed to work other than what I have read over the past few days. I was planning on talking to a few other PM specialists before making a decision on who I plan on seeing. I am not going to let my PCP send me to another PM specialist that knows little to nothing about CRPS so I am taking my own time to talk to a few reputable PM specialists and then see if my PCP will give a referral to see them. I am not too attached to my PCP, so if I need to switch to another PCP to see a good PM, I will switch. I kind of lost my voice yesterday, so I only made the 1 call. I am going to try a few more tomorrow if my voice will cooperate.

Alaina,
I personally think that Ketamine is worth a try. The percentage of people it helps seems to be in dispute, but it does help a lot of people that nothing else has. The problem is the cost. My insurance does not cover it either and for a good trial it is several thousand dollars. Mine was $600.00 per infusion plus a $500.00 consultation fee. Ask if there are any fees in addition to the infusion fee so you are not suprised. The infusions were given over a 4 hour time period. I had no side effects and required no medication to manage side effects, but I would ask because it seems a lot of people do have them. I wanted to know if they would be prepared just in case. Like Little Paw, initially I did not think that mine worked and became quite depressed about it, but over the next month I improved slowly. I wish my doc had a better protocol for boosters and I wish I could afford more. I would ask about follow up prior to making a decision. Just some things off the top of my head. Good luck and let us know how it goes. ~mac

Spike,
It is crazy insurance will not pay for a trial of these treatments. They are far less expensive that a SCS and much less invasive. Much of the research shows them to be as effective. I think there are a lot of question about which protocol is the most effective. We need more research.
Alaina,
If you have other questions about the experience let me know. Little Paw was kind enough to document hers, but I did not. As I said above, I became pretty depressed and withdrew from the board for awhile. I would not recommend my approach. It would have been healthier to have asked for help. ~mac

I did manage to find another PM who performs Ketamine infusions around town. According to the staff that I spoke with, if the PM doctor finds it necessary to do an infusion, they have been able to have it authorized by insurance in the past. I have scheduled an appointment with him in February to make sure he is up to date on CRPS and make sure I feel comfortable with his knowledge and treatment plan. I am still a little wary of my appointment tomorrow. I don't know why, but something tells me to be a little cautious tomorrow.

It is wise to trust your instincts, especially when it concerns your health!

:cool:

Nothing wrong with caution when checking out a new doctor.

I was able to get my infusions covered by insurance. I pay the cash price because it is less than what my insurance authorized charge-wise and keeps me from having additional costs. They do apply towards my skyhigh deductible though.

If you need the procedure codes we are using I can probably dig those out for you.

Well, I am back from my consultation. I still don't quite know what to think about the appointment. First, he was more of a salesman than a doctor, in my opinion. Very smooth fast talker that was just trying to make a sale. It wasn't ketamine that he was trying to sell though. He feels that I would benefit more from a SCS over ketamine infusions for two reasons; insurance will cover SCS, and he believes that SCS will also help with my blood flow problems. He didn't talk too much about ketamine, and what he did say, my eyes were kind of glazing over wondering what he just said. I am not even sure how much he even knows about CRPS, especially since when I said CRPS, I got a strange look with a response of "oh, you mean RSD". That doesn't bother me too much, since a lot of doctors are still calling it RSD, but I still get this feeling to keep on looking.

I don't think the appointment was a complete waste of time. It gave me a chance to meet up with another PM doctor and hear what he has to say and learn a little about ketamine, although not much was said about it. What I don't understand is - why do so many doctors want to push the SCS? The doctor I saw today said I would benefit more from SCS than ketamine, but he does not do SCS.

Thank you everybody for your questions and concerns, but since we didn't spend much time talking about infusions, not too many of the questions actually came up.

I really just don't know what to think about today's appointment. I will see what happens with PM #4 on February 9.

Well poop. Third try was supposed to be the charm!

I'm sure you are frustrated the appointment didn't even focus on ketamine. I concur with your instincts, wait and see the 4th doctor.

This guy may have something about the SCS addressing blood flow. I only say this because I asked my PM this week about the circulation issues and he said SCS or blocks were the only things that would change that. Which he followed by noting he didn't think I was interested in either of those. He also still calls it RSD, hard to make the name change I guess.

If I thought blocks would fix blood flow without any risk I'd probably be all over that myself, seeing as ketamine doesn't get rid of that problem.

I don't remember - did you ever have any blocks done? Just curious. I'd try that over an SCS for sure.

So sorry you didn't get what you needed. :(
I am sending extra hugs for the day. :hug::hug::hug:

The whole idea of SCS addressing blood flow issues made sense to me. I can say that it did not seem that he was trying to sell SCS to me, he just thought that it might be a better option. He even recommended that I go to another doctor to have it done, so I know he wasn't just pushing it to make easy money.

This is the first that I have heard that blocks might help with blood flow. I have not yet had any blocks done, but it is worth looking into as an option again. Thank you for that Littlepaw:hug:

I know why they push SCS. First, My doctor told me that the surgery is said to bring relief to about 85% of the patients that try it.

And the second reason some Doctors push for SCS implants is, it is about a $32,000 surgery to do and really brings in great profit to everyone involved in the surgical implantation (The Surgeon, the salesman of the device used, and the company that produces the device). I came across a very aggressive salesman, when they did my SCS trial. It left a bad taste in my mouth. At least in your case, this particular Doctor is not the one that would do the surgery, so that is a good sign about who this person is.

I'm glad that your appointment went well, even if it didn't go quite the way that you had anticipated.

Just FYI - sympathetic blocks increase blood flow and temperature in anyone, not just CRPS patients. If you get pain relief with them then the pain is sympathetically mediated from what I have read. They have short term effects so are sometimes done serially. Though with you, as much discoloration as you have, it would be interesting to know if blocks normalized that even short-term.

BTW _ I am not advocating you get these. Just thinking out loud and passing along information. I think the hardest thing with you is that you aren't healed yet but they need to do something to bring you relief. I support you no matter what you decide you need to do.

:hug:

The PM docs that I have seen that really pushed the SCS did not do the surgery either, but they do the trial for it. They also sell specific models of SCS's. I'm not sure that they do not benefit in some way from selling a model. Maybe stock in the company. I don't know. As Spike said, they are effective in about 85% of people but it is time limited. I can certainly understand why people that are bed bound or have a consisent very high pain level would try them. They usually work about three years and for some the risk of complications are worth the increase in quality of life. It's such a personal decision. I also paid less for the ketamine than I would for the SCS w/ deductibles and out of pocket costs. There is also a considerable cost per year for maintenance for the SCS even without complications.
Just had to check in and see how your appointment went. Third time was not a charm for me either. You sound like you are keeping things in perspective and have a Plan B or is C or D...... mac

The benefit the Surgeon gets is from the $$$ Cost of the surgery, from which they receive payment.