Pain Mgmt. Clinic Experience

[betheny]

Just want to report that at the first visit, color me VERY impressed. I rolled in, saw a model of a spinal column and though Ah-ha! Somebody may have a clue! He tested my sensation with an alcohol swab. Above T6, it felt cold and wet. Below, it brings searing pain. And this guy understood it! He said "I want to see you stand." I said OK, but I have to touch you. Stood up touching him. He kind of surveyed me and said "I think you're standing on those things but you can't feel them so you have to touch me, right?" Do you know I nearly started crying? I've explained it so many times to doctors that let it go in one ear and out the other, and he required no explanation!

He upped the opiates I CAN take if needed, cut the tylenol. Started me on Lyrica, I go back in 2 weeks. Will be drug tested, signed a form agreeing to not get drugs from other doctors. All fine with me!

I was honest, told him I was there because I was worn out dealing with judgmental nurses that don't want to help. I think he hears that a lot.

So far so good!

[quad79]

Good for you Bethany!Life is hard enough w/ out dealing w/ bs from the medical community. And wow, you didn't have to explain yourself for once?!?Now you can feel good knowing you will have an advocate -comforting I'm sure.


oh yeah-did you get my message on myspace?

[betheny]

No, haven't checked Myspace for ages. Got bored with it, I guess. Should I?

It was SO nice that he knew what I meant and I have high hopes for the Lyrica he prescribed.

[Eileen]

Betheny,
I am glad this was such a positive experience, and that he "got it" without the long explanations necessary. I hope the new pain med change helps you a lot.

[davesgirl aka anty]

Bethany I am so happy that you found a DR. that understands :applaud: anty

[SoFla]

I'm happy you found a doc who understands. It is tough being over looked, and looked over, by medical professionals, when all you want is their help. I hope you find the relief you so desperately need.

[David Berg]

Sounds like a great experience Bethany. Which clinic did you go to?

[rfbdorf]

Good deal, Betheny! When we went to a new pain specialist after feeling not very satisfied with the first one (after nearly 3 years), Carolyn almost cried too - this one really understood it. I'm glad you also found one like that.
- Richard

[betheny]

The Lyrica has me a bit groggy, but at this moment, my neuropathic pain is way down...after 2 capsules. I hope it doesn't blow me up to 200 pounds.

David, this doctor is actually an anesthesiologist that works with a group of orthopeds. His real office is in the city, he travels to this office in my suburb once a week.

He's big on spinal cord stimulators. I don't see how that can work on us. Why interfere with the signal when ours doesn't get to the brain anyway?

Oh yeah guys, this is funny. I called my doctor's office and asked to leave a message for Victoria (the mean nurse from hell). The receptionist sighed, said "OK. You're Betheny Winkler and you want to leave a message for Victoria.What is it?" (and she's hunkered down, waiting for me to complain.) I said "Tell her I saw Dr. Alhaj. He was pretty darned awesome. Tell Victoria I said thanks." Stunned silence from receptionist, then this chirpy, surprised tone. "Oh! Oh! You want to tell Victoria thank you! OK. Sure, I can do that!"

Hahaha. Stunned them with sweetness. They never saw that one coming! :D :D :rotfl:

LOL, it was priceles.

[metronycguy]

betheny,
i am just gettign a little communicave again , i had a nother attemot at a scs on wed, i had already had a failed ateempt with 2 or 3 revisions to theat scs a couple years ago.
this new scs by boston scientfic was supposed to be so much better than the ANS one i had before .
top it iff the docotr who specilizes and teaches the impanting of them was about 60 miles away, my pain mannagement doctor, the one that had implanted my first scs had referrred me to him, he is the leading implanter in the ny area .
i was in the table for over 2 hours, they couldnt get the coveragem lots of scar tissue. finally he tried a caudal entrace, that got the best coverage of all them, and it seemed there was a 50 /50 chance it may mask the areas where i feel the pain, so they taped it all up and got me to the recovery room. in the recovery rom the boston scientifuc guy tried to program the device, we couoldn tduplicate the sensation we had in the OR. the lead was stuck in my caudao erea where all the nerve roots are, i think when they had me on the table to the recovery room, in one place i was face down, in the recovery i was face up with more pressure on the caudal area. when they tried to program the stimulator it kept activating the motor nerves, causing my glutes and hamstring to spasm and cramp, very painful , made the decision in the recovery room to yank the whole thing, wasn't worth sending me home with something with such poor results ,plus the lead was in a area that would be a high infection probability,
i stayed at a friends place for the next 30 some hours as the spinal headache was real bad. i manged to drive home yesterday afternoon but had to recline again, today i still need to keep my head low due to the spinal headacke.
i think they made 3 or 4 holes in my epidural.

[betheny]

Jesus, Mike, I'm sorry to hear you went through that for nothing! I forget you have such a low injury. What do you think of my theory that the juice won't reach my brain because of my c5-6 injury? Do they give you general anesthesia or you're just laying there, wide awake? Spinal headache sounds horrible, as does 3-4 holes in the epidural. I'm terrified of anyone messing w/ my spinal cord anyway. Is there a risk of further paralysis with SCS?

The pain dr. told me to start researching it and that he wouldn't push me on it. I was so grateful to have a doctor that wasn't insisting on doing something invasive.

I'm still denying the endocrinologist the right to kill my thyroid with radiation, for the Graves disease. She's all "Well, then your thyroid won't be a problem." Average wt. gain on that is 80 pounds, she thinks I'm vain, I think I'm in a wheelchair and need to spare my shoulders. The radiation also triggers your immune system to target your eyes and legs in some rare people and I'm in that group. There are so many people on the internet that regret allowing that procedure, it is scary. She tells me that only the whiners go on the internet, which is ludicrous. The thyroid can be controlled w/ medication for years, it's not damaging. Meds work real well on me. In all other countries, radiation is the last resort treatment. They want to use it in the US because it makes it easy for them to control, it's permanent, less testing involved, less office calls, less dosing decisions to make. They don't care about the side effects here, man this sucks.

So I'll be studying this SCS business very carefully before they go sticking things in me!

Feel better soon, my friend. I bet it's beautiful and autumnal in NYC right now.

[metronycguy]

your concerns about the radiation are well founded, 80 lbs is nothing to discount for health reasons, that is a lot od extra strain on your heart, a good way to start diabetes etc. internet lets people give the good and bad stories . if many people are saying they wish they hadn't done the surgery , seems they know more than the doctors that are making the money performing it.
as far as scs, your concerns about your high level need to be researched. in me they placed the lead above my injury level, 'usually place it t11 - t12, i think they also trled l4/l5. and s1 on Wednesday's. i think they need to get the wire in near the level of injury or above the level of injury. so in your case they dont have a lot to work with. what are your exact pain sensations? it should work well for me if they could get the coverage, since my pain is shocks are extreme drilling electrocution. for some reason with alll my scar tissue they cant get it to cover the area.
infection is always a possibility , i had that with my first scs ,
the stitches wouldn't dissolve inside me causing a granular and a abscess,luckily i got away with it without a pic line.
complications could be also further paralysis and death.

[mike]

Bethany I tried SCS a few years ago. Found that the small amount of relief that I got significantly hampered my ability to walk. Also since I have burning pain that runs from my butt to my feet, it was difficult to adjust the leads to cover that much territory. From what I have read, the relief requires continually having to increase the stimulation and eventually it does not work at all.

[metronycguy]

mike , the new one is alleged to overcome the need to continue to up the output till it is unusable.
i say alleged since i have no personal experience, since my trial installation failed to get any coverage while they tried to implant it.
Precision Plus™ SCS System is the newer one.