Monday, March 10, 2008

Always Get the Best Doctor Possible

Dear Reader (I've always longed to write that),
Thanks for sticking with me and my medical posts. This feels jumbly due to headache.

Today's note: always get the best doctor possible, one with good research skills, because you never know when you'll need the best of his or her skills, sometimes in a hurry. For complicated problems, get someone who teaches at the medical school or publishes extensively (and who knows what they're doing, is minimally invasive, etc.).

Doctors do a lot of work behind the scenes. When I thanked the doctor for his time, saying I knew it blew a hole in his schedule for today, he said he had to talk to medial experts at University of Chicago and the local medical university to determine the best way to test to get accurate results and avoid a bad adverse reaction while still also determining if I'd have an adverse reaction tomorrow. And he had to cull the periodicals as well, though he found little and what was suggested was insufficient--he said he didn't want to be cavalier in his approach because of my previous severe reactions. It's nice to be believed without having to do a "I told you so" later. He knows my history.

The allergy testing took 4 1/2 hours! My husband had to volunteer at the elementary school for 4 hours rather than 2 because I had underestimated so much (we're helping with the school bookfair). I feel badly about that since that's a half day of missed work time, and he'll be missing tomorrow to drive me. It's amazing how much he gets praised for helping out/volunteering (because he's male rather than female)--most of the women volunteering are also taking time off from full-time jobs. It is good for other dads to see him helping out--they may get the idea they can help out, too. :) Most of our volunteers most of the time are women who are already overcommitted/stretched too thin.

Oh, yes. The allergy testing took 4 1/2 hours. I thought I'd have quick skin testing. No. First skin testing, then injection of steroid starting at 1:10,000 dilution up to 1:1 full dose, waiting 30 minutes between injections as we got close to the full dose. About 10-12 pricks or injections altogether. And it took time to dilute all the solutions. The skin swelling with 1:1 was slightly larger than the control with histamine, but no systemic hives or reaction, and it's more of a dose than I'd get systemically from going locally into the epidural space. I got a migraine 3 hours in, and he asked what I take and was going to give me a drug sample, and I said, "I don't take anything." He looked surprised. I explained: "It's minor compared to the back pain."

I realized again why anesthesia is sometimes helpful with spinal epidurals--cortisone is a thick, gloppy substance, and it really hurts going into the skin compared to other injectables. Putting it into a blown disc is more painful than putting an epidural into a laboring woman with a normal disc. Still, I know several people who have had the injections without anesthesia. Some of them said it was the most excruciating experience they'd ever had, though brief. I am wondering if my doctor does the anesthesia because he doesn't like to see people in pain or if he is overmedicating for something that, though painful, is brief. Or if he's had someone move a lot. He doesn't ask people if they'd like anesethia or not, though I guess he might be negotiable. My grandmother said yesterday that her friend's husband had this done and it was terribly painful. I told her I'd be under, and she said, so was he. But he remembered it and still felt it. Thanks, Grandma. It's not like I was worried or anything. Sometimes sympathy can backfire.

The dr. also said said he can desensitize me to sulfasalazine (yippee!) so I can take it rather than methotrexate or embrel, but he thinks that I'd feel like crap on it because of the side effects. Might be worth a try, though, since I feel crappy from pain. It would be an expensive experiment to find out if I feel worse: 1. with pain and without sulfa, or 2. with sulfa and without pain. It's something to investigate/research at some point.

I keep forgetting to tell the spine doctor that I'm an understater. When I have a problem, I really mean it and it's probably worse than I'll say because I don't want--Procedures (I give "it's only a flesh wound" kinds of denial statements all the time). The allergist recommended I use my asthma inhaler right before the sedation tomorrow to avoid the propofol problems. So we're good to go tomorrow. As long as I don't confess my blogger id...


The Goldfish said...

My top tip about understating is to use a practical example. Otherwise it is very hard for others to gauge; two people might declare "It really hurts!" when one of them has a papercut and the other is in agony. A doctor never knows which one you are and is likely to split the difference (which is bad news if you're the one in agony).

So practical examples are useful; if you can walk and your walking is impaired, or if you're usually a good sleeper but your sleep is being disturbed by pain. And if you can qualify that with timescales and how bad you think it was to the time before, that sort of thing.

Ultimately, we can't really quantify our pain, but if we can state how it is effecting our daily life, then it gives some meaning for the folks trying to deal with it.

I hope everything goes well tomorrow.

FridaWrites said...

All very good ideas. I never quite know how to answer the pain scale thing since to me 10 is sudden amputation or carwreck trauma and I think many people might say 10 at shriek when moved level. I'm someone who can imagine that it could be worse, as opposed to my kid, who falls apart at paper cuts.

Thanks for your good wishes and sorry I haven't commented on your blog yet--I've enjoyed reading there.

patina23 said...

I read your this, and am not sure if you are having an epidural steroid injection, but it seems to be.
your doctor actually testd you to make sure you were not allergic to the drug he was using?
This is the first I have heard of a doctor doing this. Most people I know never had this before this procedure. I ended up on an inhaler, not making the connection to the ESI, into my spine.
I was wondering if your doctor told you the name of the drug he was injecting into your epidural. Depomedrol? Kenalog? Celestone Soluspan? Most doctors never tell their patients that the drugs ijected are for off-label use.
If you look up Methylprednisolone Acetate or Depomedrol, the manufacturer of this drug states on the product information, or package insert-NOT TO BE USED INTRATHECALLY/EPIDURAL. hence these three drugs should not be injected into the epidural space due to the neurotoxins added to the steroid. Do a search on Depomedrol package insert and read it your self. These drugs contain PEG, MGPC, Benzyl Alcohol-all neurotoxins added to the steroid and CAUSE devastating adverse reactions that one may not know they have for up to 20 years, after the injection.
Arachnoiditis, Meningitis, bowel and bladder dysfunction, sensory disturbances, headaches, and more. that severe headache after wards, is no doubt from a dura puncture. Now the neurotoxins are in the CFS fluid!
After many studies the conclusions are they do not work anyway. Maybe a few weeks or days without pain, but in the long run surgery is warranted.
this is all I wanted to tell you. check out the drug the doctor used OFF-LABEL for your ESI. *epidural steroid injection) read the package insert for whatever drug he used. See for yourself how the manufacturers state-NOT for ESI's.
I wish my doctor told me what drug he was injection so I could research it. and it was my ignorance for trusting him and thinking he would never use a drug that would hurt me. and he did.
severe pain following my procedure. Now I have Arachnoiditis.

FridaWrites said...

Celestone--I have the package insert with me since I had to take it to allergy testing yesterday. I think you're right, that we're just postponing the inevitable (surgery). I'll look at it again, and hopefully all will go well.

Methylprednisone is typically what they use--fortunately not for me, I guess.

With allergy testing, it's the first you've heard of it b/c it's only been done once before, unless some dr has made the attempt on his own. :)

patina23 said...

Hi Freda,
I have done so much research since developing arachnoiditis from an ESI. the proof I found was a company named Milestone Scientific Inc, that invented a new way to do epidurals, called CompuFlo. in their written information about CompuFlo, they write that Dr's miss the epidural space using the "loss of resistance" even with floroscopy and this new computer will find the exact spot to inject, and they say that neurotoxins are injected into this space. finally this is said!
I found this article on compuflo-and the ESI's

I wish I researched all the drugs used and information. Even woman receiving epidurals for child birth have adverse effects. Not with the same drugs, but the procedure itself.
Celestone Soluspan also called Betamethasone Acetate-something like that. not correct spelling-
I am afraid to look up the correct spelling for fear I will loose this comment again, if i leave.
There is a group that talks all about these drugs and dangers. called
these are people that had Kenalog, Celestone, depomedrol and are just trying to get answers/help dealing with the pain, and the truth on the FDA approval/revisions of the label warnings and back on the market. It is all in the depo website above.
I also have a letter I found from the Chief Officer of Schering Plough stating they received information of people and their side effects they had, developed- Celestone soluspan caused people to develope adverse-reported side effects after the injection. Arachnoiditis,etc..
if you are planning on having this procedure-please read and search some of the information above.
I hate to see another victim of these steroids injections, especially since they are used off label and do not belong in the delicate tissue- into the spine period! According to their manufactures-Pfizer/Schering Plough each package insert says not to be used epidural/intrathecal! and three injections are the usual, every two weeks and the last maybe six weeks later. Big bucks are made on these injections too! My injections was hell, the third-a puncture. There are small villi's that carry anything from the epidural space right into the CFS and it can take years to find out of one is a victim of the ESI drugs used. Polyethylene Glycol/Benzyl Alcohol added to the steroid!
When is your injection?
if you read the depomedrol harm you link-they talk about all drugs injected, not just Depomedrol, all drugs injected. I believe I posted it on the depo forum.
The reason I saw your blog is because I set google alerts on each drug and epidural injections, arachnoidiitis-I then try to tell whoever writes about these topics to research this ESI procedure and the drugs used. No one should get neurotoxins injected into their spine!
I put above, please check this out when you have time.

FridaWrites said...

Hi, Patina--I'll have to come back and read more later since I'm loopy now--I did have the injection this morning. But they used a preservative free Celestone b/c of my reactions (they should go preservative free with everyone).

Thanks so much for the info--I'm a big proponent of research and self-advocacy, as I was with childbirth (found out a lot from other people) and other meds. I will go back to this info later. If this round doesn't help, I probably will go straight to surgery--and they'l remove the whole disc. I was in an emergency rather than just pain situation--loss of bladder function and having problems with function of arms/shoulders.

Elizabeth McClung said...

Well, I am just very happy that you have a doctor who is going beyond the "minimum requirements" and seems determined to do what is needed and research what is need to solve your problems or give you a better quality of life. Yes, the pain totally sucks, and the testing sucks but a doctor who is doing journal research AND calling U. of Chicago sounds like a keeper. Hoping this all turns out for the best/better!

FridaWrites said...

Definitely. Plus it's good not to worry about major allergic reaction then and there