Nice Visit with PM Today

[Kathi49]

I am so tired from driving there and back so I will try to remember everything he said.

I went because I wanted to talk mainly about the coccyx pain. (And thank you Dr. Steve for the previous info.) My PM said the same thing; the ganglion sits in between the rectum and the coccyx; which I knew. What I wanted to know (didn't understand the terminology on the MRI report) is what the heck is wrong with it? So, my PM drew a diagram of what it looked like and I want to say around the C3 (meaning coccyx 3) there is bump or lump of bone and the same thing at the tip of it. And it is protruding posteriorly. Anyway, he repeated again that it has been fractured at some point. And my visual is...a bent nail or something. Because that is what I feel like I am sitting on. I told him it hurts really bad when constipated and I almost pass out sometimes from that vaso vagal deal. And he said, yep, it would and that that C3 AND ganglion is probably irritated/inflamed. But NEVER have it removed which I already knew as well. I asked him when he did the previous injection WHERE did he go in at. And he showed me that as well; just the space I guess where it curves and is more open and then the medication flooded the ganglion area. At least that is the gist of it. So, the plan is to get another injection in another two weeks. Oh, and I am supposed to take some Valium because this will not be pleasant.

Then we talked some more about the Fentanyl patch. I told him, yes, I know I am a chicken, a dork and I am concerned about it. And he said, no, I would rather have you concerned about it than to ask for more of it. But he was laughing and said just do this. Try it for 24 hours and if you feel sick or overly sedated; just remove it and clean the area with alcohol. Then he busted out laughing because I said, well, will I need an Epipen or something? But he laughed and said no, and called it something else...started with an N and now I can't remember it. But he insists that I should be fine and that it should help with some of the GI stuff but not totally. He just tells me it will help with diffuse pain. And I did ask about heat. But he says even with baths and hot flashes my CORE temperature shouldn't go up that high to make it a big deal. But again, I am going to wait until after that shot since I will be taking 15mg of Valium.

Then I asked about the arm pain. Kim, if you are out there you might be interested. I told him my arms felt weak and that just can't be so because I do things all the time. So, he tested my strength, said it was good and that he has the same thing (from his own fusions). Actually, he said his hands feel weird all the time. I said, oh great and you give injections! But he said it wasn't numbness; they just feel weird. But he explained when we lift we are kind of squishing those good discs and then have that arm pain but not necessarily radiculopathy; could be permanent nerve damage. He said it bothers him, not as bad as before his fusions, but if he carries a couple of gallons of milk he gets that same feeling I am speaking of. So, the answer is...quit lifting! :D Or, at least watch the weight of what you are lifting.

Oh, and I finally was able to ask him why he does NOT give ESI's in the neck. And his reponse was, I would rather land an airplane on a runway than a parking lot! :D But then he got serious and said the neck and lumbar are two totally different ballgames and that the risk was way too high to do an ESI in the neck. And then went into all the nerves, spinal cord..that sort of thing.

Soo, that's about it and that's where I stand for now. He did say that PT won't help much with the coccyx other than to alleviate some muscle spasms around it. I told him it does...just a wee bit but really helps more with the pelvic floor muscles themselves. It is just something I am going to have to live with; probably get injections for and just take meds...as usual. :)

[Nana4&cntn]

Kathy,

Isn't it great to have a PM that understands you and takes the time to explain everything to you? I have used the Fentanyl patch, but, it made me so constipated I had to stop. I hope it works well for you. The best thing about it is it give you a constant small amount of pain throughout the day. And you don't have to remember to take meds at a specific time. I used to put the date on it with magic marker so I knew when to change it. I am blond and need all the help I can get.

Take care,
Kathy

[Kathi49]

Kathy,

Yes it is great that he takes the time that he does. :) Truly, I sometimes feel guilty about that (of course I am probably being charged too lol), but I usually go in with a list of questions and try to make it fast. Anyway, the patch is the "baby" one...the 12mcg one and I am STILL afraid of it. That is why he was laughing at me. I won't have a problem remembering it only because I have had to change my estrogen patch timely for years LOL! Everything or every med rather is timed...geesh it is getting old! I had to write out a plan the other day because it is things like fish oil or calcium that I WILL forget. And probably like most others I have to time most of it around meals. Oh, and I almost forgot. My Vet Tech niece was teasing me about that same darn patch today. She says, "Awww, Aunt Kathi, you want me to come over and watch over you?" She cracks me up...she's the one that keeps telling me to get over it; that they use this same patch on cats and dogs.

[mainepain]

Hey Kathi,

Glad to hear that you are getting some answers. Believe me I know how it can be to have so many questions but not many answers. It sounds like your PM is really on the ball.

I was given the Fentanyl patch for awhile and while it did work quite well for pain it did cause some unwanted side effects. The big problem for me was that I was allergic to the adhesive in the patch and I ended up having anaphylaxis as a result. So no more patch for me.

Anyways you said your PM mentioned a word that started with N by any chance was it Narcan? or perhaps Naltrexone? It is an opioid antagonists and work by pushing opioid agonists off the receptors and then prevent them from reattaching. It is used religiously in overdose cases where opiates/opioids are involved.

If given in time it can completely reverse the effects of an overdose

[Mark N]

Kathi, what a great appointment you had. I know it gets old taking the meds and trying to keep up with everything. It gets to the point that I just want to toss it all out and be done with it just like you do. As you know though, we can't do that because we are taking our meds for a reason.

I understand your reluctance to the patch but I think you need to try it for 24 hours like your PM said. It doesn't commit you for life and you may find out you get much more relief from it. If not, pull the patch and clean the area good. I can come up and watch over you if needed while you try the patch. Good luck with the next injection, I hope you get some relief like you did last time.

[Kathi49]

Mainepain,

I THINK it was Naltrexone; it SOUNDS like it anyway. And my niece mentioned that too I believe. Geez, I wish I could remember the names things LOL! And I am not allergic to any adhesive that I am aware of. Of course there can always be a first time. But OMG mainpain, what you said is scary! I know this is the 12 mcg patch but my main concerns are nausea which I definitely don't need and being overly sedated. I suppose that is why he said to just try it for 24 hours.

Mark,

Thank you. It was a great appointment. He normally does take a lot of time with me. BUT there are times I instinctively know he is in a hurry; not because he says anything...but I can see or hear him scurrying around. :) So, when I see or hear that, I really try to make it super fast. I guess I just think of the patients waiting behind me. And maybe I shouldn't because I also feel my time is just as important. Ugh, who knows what I am really thinking. But I do know I don't want to waste his time on minutia...that's why I keep a running list of pertinent questions. I ALMOST cancelled yesterday but this coccyx stuff definitely needs to be addressed. I KNEW there was something wrong with it; I just didn't know the DETAILS. And I had kept cancelling when the snows would hit. So, I just decided to go since it was so nice out yesterday. It just so happens I had a few questions about medications. Oh, I also told him and his nurse about the gastro stuff too.

Anyway, I am going to wait once again on that patch. Let me see how this injection goes first. The first one did give me quite a bit of relief last spring I think it was. At least it lasted this long....or until more recently. :)

But you are right...it is tiring. And check this out. Right now I have to jump off the pc, get ready and go to PT by 8:00 am! LOL I am NOT used to this lol, since retiring I usually take my time in the mornings but not today! :eek::)

(And I think I will go to Kohl's today ha!ha!) I just want to do something fun for a few minutes.

[slipnslide]

Kathi,

What a "pain in the butt"...LOL;) ....but seriously, I feel so bad for you!:( I think I may know somewhat of the pain you were discussing down by the tailbone area. I fell on a dolly when moving into my house 10 years ago, stepped on the edge of the rolling dolly and came slamming down on the corner of it with my tailbone. I couldn't bend at the hips for almost 2 weeks, not even to drive:eek:. I coudn't imagine having that kind of pain daily, especially when......well, need I say more?:eek: I hope that shot does it for you, i'll be keeping my fingers crossed.:)

Kathi, the arm thing, yep...same as my PM said about it could be permanent damage. The weakness doesn't bother me as much as the deep aching pain. I know it has to be the muscles, but it sure feels like it goes all the way down to the bone:rolleyes:.

Anyhow, glad you had a good visit where your questions were answered, definitely makes the appointment worth the trip.:D

Kim

[Mark N]

I hear you about needing to get ready early when we don't work any more. I am getting ready to go to my appointment with the counselor but it is my fault that I have such an early appointment:D.

[Kathi49]

Kim,

LOL! It IS a pain in the butt! Driving was the absolute worst...but it is getting better with the PT. But for awhile there I can tell you the honest truth; I was very close to tears...couldn't wait to get OUT of the car. And I did ask her about my right hip this morning. I think you jinxed me LOL! Just kidding. I FIGURE it is from leaning forward so much; but doing the leg exercises helps with that. Honestly, I do NOT know how I broke this thing; I can only think of 3 or 4 instances where it might have occurred. But each of those times and through the years I was on pain meds for accute, short term pain like after surgery and such. I just NEVER felt the actual break.

And, well, PT was interesting this morning LOL! I will just leave it at...more advanced. But more was discussed and it was funny! There were two PT's in there this morning; one is in training. But I had them laughing and they were telling stories too. So, what the heck...have to pass the time somehow. :D I think I was still just tired from waking up and just talking about everything heee! Okay, to be serious it is a bit embarassing...but I still maintain it is just sort of a medical procedure like anything else. Not fun but not horrendous...at least not that bad for me.

Oh, and the arm thing. Kim, remember I told you over the summer I thought my arms would just die and fall off? It DOES feel like it is going right to the bone. But, I also was put on Prednisone at the time and it stopped all of that; so that tells me...inflamation. Or, as in my case most likely the C6/C7 nerve roots were irritated from doing too much. Either that or the hot, hot weather. I don't know. I personally think it is just damage or I just have a tendency to overuse my arms and lift too much. But darn it...my NS said to get out there and plant flowers when it first started hurting. So, nowdays at the first sign of trouble I just stop whatever it is I am doing and it can just wait. :D I don't mind exercising or doing some things. But I don't want to hurry along another precarious level either.

Okay, and my PM had the exact same levels you had done. Now for him to say he has issues still is something. But I know too SOMETIMES he will get an injection but not often. I think he just ignores it somehow or knows of things to help it that we don't LOL! I know he can't take the narcotics so he must take Advil or Aleve; he mentioned that once.

Oh, and there was something said once, let me see if I get this right. That the brain perceives pain as weakness or visa versa. Something like that. Because my arm strength is good...I just FEEL that my arms are weak. It is all just weird. And that's pretty much what he was alluding to also by saying his hands felt weird too but actually they work and are fine; nerve damage he says....probably sensory but just a little bit. Anyway, just wanted you to know that I can get that bad pain too...it just hasn't happened for awhile. It seems, once again, that hot weather is the demon that gets to me.

Mark,

Good luck with your counselor this morning. I am hoping and I am sure he will; give you more suggestions/advice on how to cope with things. I never found it shameful to go at all. In fact it helped tremendously. I just remember being exhausted after every session; must have totally spilled my guts. :D Oh, and the reason I had to take the early appointment was NOT may fault LOL! It was the only time this week she could get me in. But still...I am not used to rushing around like that that early anymore. Even though I used to be at work by 6:00 or 6:30. I LIKED it that way. That way I could leave at 2:30 or 3:00! :D But three years have passed and I am over that early morning stuff LOL! Anyway, good luck, post back and let us know how it went.

[Kira]

Kathi,

I know you have a history of being pretty sensitive to meds... but I really do think you should at least try the patch if your doc is still recommending it after all of these months.

To put it in context... I wear a total of 62.5 mcg/hr (a 50 mcg/hr and a 12.5 mcg/hr), and don't get sedated or nauseated from it.

I DO have other problems with nausea, and probably always will... but that's because of my gastroparesis and my cyclic vomiting syndrome, NOT from the patch.

In fact, my nausea and constipation are MUCH better on the patches than they were on the various oral opiates and IV opiates I've had along the way.

When I first started getting rhabdomyolysis, they used either IV opiates (in the hospital) or short-acting oral opiates on an as-needed basis (vicodin, norco, tramadol, percocet... NOT all at the same time). Then, when my pain got worse and I started going to the pain clinic, we started with a low dose of MS contin and gradually increased it. I never got to a very high dose of MS contin, though, b/c of side effects... BAAADDD constipation, some nausea, and edema. That was when my pain doc suggested the patches, since in her experience a lot of patients have fewer GI side effects with them. For me, the constipation improved some, but didn't go away... we know now that I have really poor GI motility from my mitochondrial disease, and the opiates are probably adding to it... but at least it was better with the patches. Also, my nausea improved, though I still had the trouble with gastroparesis and cyclic vomiting from my underlying disease. The edema improved some, too.

The best part, though, was that the pain coverage was MUCH better. With the pills (short-acting AND long-acting), the pain would get better once the pill kicked-in... then I would have some relief for a little while (a few hours), but it would wear off and I'd find myself watching the clock, waiting until I could take something again. With the patches, it's not like that, because the coverage is so much smoother and more constant. There isn't that trouble with coverage peaks and valleys, except for sometimes I notice it wearing off a bit when it is almost time to change the patch.

I know I said this before, too, but I have had NO trouble with the heat issues and the patch... even though I still take hot showers, use heating pads (but NOT where the patch is), and even get frequent, brief fevers from my autonomic dysfunction.

Also... the 12.5 mcg/hr patch is a REALLY small dose. My starting dose was 25 mcg/hr, and we had to raise it pretty soon after I started it, since it wasn't enough.

It sounds like you have a really good relationship with your pain doc, and I think that if your docs all think it will be okay, then they have probably done the math and feel that it is a safe dose, based on your level of tolerance from what you're already taking. From your posts, it sounds like your docs also know how sensitive your body is when it comes to meds, and I'm sure they're taking it into account.

The "N" medication he was talking about is probably Narcan... which is naltrexone or naloxone (can't remember)... it quickly reverses the effects of opiates by binding to the opiate receptors and blocking them. It's used for opiate overdoses, reversal of opiates used in anesthesia, etc.

If you are REALLY worried about the patch being too much, I guess you could be somewhat reassured by the fact that the ER does have a med they can use to rapidly reverse the effects of too much opiate. But, since your pain doc thinks this dose is fine for you, I really doubt you would come anywhere near the point of needing Narcan.

If you decide to try it, just pick a time when you know someone will be around who can help you out if you need it.

It is ultimately YOUR decision, though, no matter what we all say. :)




Oh, yeah... and disclaimer or whatever... this is NOT medical advice, since I'm not your doctor and have never met you in person and haven't even finished a residency... this is more like "friend advice" than "medical advice," if that makes any sense... just from a fellow patient, you know?

[Kandra]

the same thing at the tip of it. And it is protruding posteriorly. Anyway, he repeated again that it has been fractured at some point. And my visual is...a bent nail or something. Because that is what I feel like I am sitting on. I told him it hurts really bad when constipated and I almost pass out sometimes from that vaso vagal deal. And he said, yep, it would and that that C3 AND ganglion is probably irritated/inflamed. But NEVER have it removed which I already knew as well. I asked him when he did the previous injection WHERE did he go in at. And he showed me that as well; just the space I guess where it curves and is more open and then the medication flooded the ganglion area. At least that is the gist of it. So, the plan is to get another injection in another two weeks. Oh, and I am supposed to take some Valium because this will not be pleasant.

Kathi,

I'm really glad you got the answers you needed from your PM! I'm so sorry you have this pain occur when you need to uh...have an evacuation! :(

Then we talked some more about the Fentanyl patch. I told him, yes, I know I am a chicken, a dork and I am concerned about it. And he said, no, I would rather have you concerned about it than to ask for more of it. But he was laughing and said just do this. Try it for 24 hours and if you feel sick or overly sedated; just remove it and clean the area with alcohol.

I know you've heard this allll before but really...12.5mcg is very low dose...and I honestly don't think you'll have a problem. However I also believe that if someone thinks that they WILL have a problem, then the probability increases. Sooo, even though we're all sitting here saying just TRY it, it IS up to you alone :)

He just tells me it will help with diffuse pain. And I did ask about heat. But he says even with baths and hot flashes my CORE temperature shouldn't go up that high to make it a big deal. But again, I am going to wait until after that shot since I will be taking 15mg of Valium.

In two weeks you'd be very well used to the patch :D and who knows?? It may be the best thing since sliced wheat bread for your pain!! :)

Soo, that's about it and that's where I stand for now. He did say that PT won't help much with the coccyx other than to alleviate some muscle spasms around it. I told him it does...just a wee bit but really helps more with the pelvic floor muscles themselves. It is just something I am going to have to live with; probably get injections for and just take meds...as usual. :)

Sounds like you have things under control...as usual! :)

[Kathi49]

Thank you Kira and Kandra,

Kira, you said pretty much the same things my PM did. ;)

Kandra, you sound like my niece. She said when I first put that on don't get panicky about it or I will have some kind of anxiety/panic attack. :)

[Nana4&cntn]

Kathi,

Good luck with the patch, I hope it brings you the relief you need. All you can do is try it and pray it helps.

My thoughts and prayers are with you!
Kathy

[Kathi49]

Thank you Kathy,

I am holding off for just awhile longer. I have 3 more doctor appointments this month and I think there will be some changes to my HRT. And I don't know what my Neurologist might have to say. Anyway, one is my regular or annual exam and the other is just a follow up. And the last one will be an injection.

But right now...I wish I had a pin to pop my stomach ugh!!! :D Geesh, do I feel bloated. I don't have any pain or nausea; just feel 6 months pregnant. :eek: I am tempted to take some Gas X or something.