Saw my pain mgt dr today.

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straydog
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Date Joined Feb 2003
Total Posts : 13481
   Posted 12/2/2009 1:13 PM (GMT -7)   
I went in for my pump refill this morning and talked with my dr about an increase. No problem, she had the nurse beam me up a full milligram. It will take 24 hours to become effective. It takes 24 hours for the old meds to clear the catheter. This puts me at receiving 9.500mg per 24 hrs and 0.396 mg an hour. My concentration dosage is 37.5mg, along with my others goodies mixed in. I got fussed at for being in serious pain for 6 weeks and not calling and telling what was going on. She said why did you wait so long, you are not suppose to be in that kind of pain with a pump!! I told her I am still struggling with knowing if I need an increase I can have one. I was told no more increases for so long its a very hard habit for me to break. She said well don't let it happen again.  All you have to do is call and come in here and the nurse can increase your pump, never wait till refill time. She said this in front of my nurse too. Those two are quite a team. My pump nurse is so good at emptying and refilling my pump, she is so fast. I am in & out in 30 minutes. She encreased my BT meds to 8mg. I was also given a script of Baclofen. She does not want me on Zanaflex and I trust her reasons for not rxing it. At one time she had most of her patients on it but then when the warning letters came out about the conflict of taking it with certain others meds she stopped rxing it.
 
I wish every person on this forum had a dr like mine. She is one incredible person. She suffers with pain and understands what it does to a person. She told me today she takes Baclofen and I said well, thats good enough for me, say no more.
 
I am off to try and get some things done like maybe getting the upstairs bathroom done in the Santa theme.


[color=blue>

<FONT>crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 12/2/2009 1:21 PM (GMT -7)   
    Good Afternoon Stray!....Wahoo!... for you! :) that is great news to hear...and I'm happy for you! I'ts about time we got some good news here. I do have a question though...if the dose is too much, do they have a way to tune it down from the outside of the unit? I have a little friend here close to me that has one and I always ask if I can touch it....she just laughs and says go for it....you should see the site of us....me feeling her up....its a hoot, and she loves the attention too! :)

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/2/2009 1:28 PM (GMT -7)   
Susie,
I think I'm in love with your doctor! Next time you see her tell her she has a fan base whenever she needs one!

I'm so glad something went right and easy for you!

Hugs,

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 12/2/2009 1:44 PM (GMT -7)   
SE the pumps are controlled with a computer. They have a little wand type instrument that they run across the pump and it can be either increased or decreased in a blink of an eye. My nurse enters the info on a computer for the devices and runs the wand across it and voila, there you have it. They can tell how much medication is left in the pump too, very easy.

PaLady I am probably one of her best cheerleaders. She is just a wonderful human being. She is one of those rare drs that actually cares about her patients. I remember when she was doing surgery, her patients did very well and she took excellent care of them. You cannot imagine how loyal her patients were to her too. I will never forget when she came to trial on one of our cases, they had denied the claim all along. It was a comp claim. She was a bulldog on the stand and she made a mockery of their expert. Needless to say her live testimony won the case that day. She did this for her her patient. She chewed the defense lawyer up & spit him out in pieces. She truly did a number on their expert. lol. Those were the days.

I think I told you she is also a beekeeper. She does sell her honey which is delicious, I am hooked on it. She made beeswax Christmas candles and ornaments, well naturally I had to buy some of those too, lol. She is something else.


[color=blue>

<FONT>crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/2/2009 1:47 PM (GMT -7)   
I just hope she helps train other PM docs. Even via written articles. She is so needed!

I'm still waiting for a call back from the doctor for possible PM. If I haven't heard by Friday I'll try him, but I don't want to make a pest of myself and then he really won't take me on!

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 12/2/2009 2:01 PM (GMT -7)   
PaLady when did you call him? Does he have a receptioniat or nurse you can talk to? I would call aggain, you have a lot riding on his decision.

By the way, did some reading on the "halo procedure", I really hope this is something you can get approved with your new insurance, I think it would be the best way to go. Their 98% rate of no Barrett's two and a half yrs after having the procedure done is pretty darn impressive. It has got my attention because I have had GERD & Reflux for 15 yrs. I did not know GERD caused Barretts, wow. I have so much stomach acid that it is not good. Have been on PPi's forever I think. The procedure is simple enough, sort of like burning precancerous cells off in the cervix and such. The good news is at least there is something out there that can eradicate it and potentially not have it return.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


FunnyGurl
Regular Member


Date Joined Nov 2009
Total Posts : 173
   Posted 12/2/2009 3:21 PM (GMT -7)   
Straydog
Wow you got yourself an Angel Doc heh.  Good for you.  Right now I have a good set of Doctors too.  I believe they are very helpful, understanding and listen to me.  I have had some doozies in my life to know a great Doc when I see em!
 
I hope all the tweaking with the meds and pump will bring you much needed relief.
Rhonda
Humour is always the Best Medicine!
 
Fibromyalgia, DDD, 2 herniated Lumbar discs, OsteoArthritis Lumbar, Migraine, Dysthmic Disorder, Anxiey, Panic Attacks, OsteoArthritis Knee, Carpal Tunnel both hands, Currently Double Depression


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/2/2009 3:25 PM (GMT -7)   
Susie,
Yes, the HALO does look very promising, but my GI warned me it will NOT cure the GERD, just get rid of the Barrett's and dysplasia (precancerous stuff). But that's good enough for me. He said I'd still have to be on ppi's, and watch the diet and all that good stuff. But I didn't realize chronic GERD can cause this because I haven't had chronic GERD. My troubles have only been in the past year or so - that I know of. But I guess there's this thing called nighttime GERD and maybe I've had that longer than I realize. I know I have it now, although raising the bed has helped (but hurt my neck, still haven't figured that one out). My new GI said only a small % of people with GERD develop Barrett's (lucky me) and only a small percent of those go on to develop cancer, but since I've already got precancerous cell changes....it's a no brainer to me. And my GI agreed. The only things that would stop me is if he finds there was a misdiagnosis at the other hospital with this upcoming EGD, my insurance won't cover it (in which case I'll look for clinical trials) or other forms of ablation look more promising. There are a few ways - just like with RF for our nerves. There's a chemical form, I think, but there's less data on that since the HALO has been the most used. But my GI recommended it for me if he still finds dysplasia, and I agree with him.

The doctor I've called doesn't have a receptionist or much of a staff. He is a sole proprietor. And with his recent injuries I can understand he may be moving slow. Plus he may have been away for the holiday. I will leave him another message by the weekend, although I'm so overwhelmed with my other stuff if he tried to call he's likely not find me here right now. If he won't help, my only recourse is to plead with my neurosurgeon. One day at a time.

I keep telling myself something will come together. And if I have to be in pain for awhile, then I have to be in pain. I suppose I could go back to my PCP and try begging again, but she's been pretty firm in the past. And I can't afford monthly visits as my insurance policy only covers 4 doctor visits a year. oh, enough for now. Everytime I think about it I just get ticked off and upset and I don't feel like that right now!

Hugs,

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 12/2/2009 6:00 PM (GMT -7)   
Susie,
a big woohoo as it sounds like you got a very very good PM Doc...glad things work out and I hope the relief comes
soon to you...but you have me worried about the zanaflex as that's what my pm doc has me on and I'm going up to 4 mgs today
on the zanaflex, sure wish I knew what meds it interacts with, I'm on quite a few meds....
PALady get in and get the HALO done sounds like it might work for you...I hope you can get that Halo done...
Lots of soft hugz
((((((((((((((((((((((((((((((((((Susie)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
((((((((((((((((((((((((((((((((((PALady))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/2/2009 7:32 PM (GMT -7)   
Susie...

I'm so glad things went well at the PM and that you got your meds adjusted.... Whenever I read your posts about the pump...it makes me want to go out and get mine right now!! But, after the meningitis thing last year, I'm still too scared to do it w/ all of my other medical problems. At some point, though, I'm going to have to just set the date and go forward with it.

I'm so glad you have such a wonderful PM doctor! It makes such a difference, doesn't it??
Take care, Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 12/3/2009 2:44 AM (GMT -7)   
Susie, what about the Zanaflex issues. I too have Zanaflex prescribed but don't use it much cause it makes me sleepy and doesn't seem to really help much.

Hope your med changes help and listen to the doc about not waiting so long to let her know about your pain increases. Take care.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


sitco24
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/3/2009 10:24 PM (GMT -7)   
wish you all the best in your recovery

(Please read the forum rules on linking to other web sites in your sig line)

Post Edited By Moderator (Chutz) : 12/4/2009 10:06:02 AM (GMT-7)


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 12/4/2009 12:25 AM (GMT -7)   
Hey Susie,
That sounds so wonderful that you can have the pump altered so easily. I'm so glad this doctor is so good.
I love my rheumy too, its such a rare find unfortunately!!!

Best wishes to you, golitho

punchfit
Regular Member


Date Joined Nov 2009
Total Posts : 89
   Posted 12/4/2009 1:09 AM (GMT -7)   
Hi Straydog,

Great to hearsome good news.
A post like this does prove that there is hope out there and its just a matter of finding a wonderful supportive medical team.

I to hope that my new dr and group of specialists are as supportive to me, as yours are to you.
It make all the difference having wonderful medical specialists that can understand and relate to our pain.
Your very lucky you are so supported.
Wish you all he best in your recovery, and hope you are having a relativley pain free day.

Keep in touch
Leisa x Punchfit

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 12/4/2009 12:10 PM (GMT -7)   
Hey Everyone,
 
PaLady yes, you are so right, the ablation only takes  care of the Barrett's not the GERD. No cure for it yet. But all in all I do hope this is something you can have done, what a relief that would be for you.  I was totally blown away reading on this but very glad to see the results of the testing they have done. I already feel like I have had a lifelong saga of reflux and gerd, I cannot remember not being on a PPI. Even with those I still have alot of problems with acid, the back wash of accd up the throat and out the nose. Diet helps somewhat but my diet is so dang limited anyway because of crohns & UC.  
 
I had myself another melt down over this dermatologist I was referred to. He has not been taking care of my problems and I decided this morning to get online and start calling to find a new one. I had a call on my phone early this am from the nurse he wants to see me on the 9tth and to ask for a 30 min appt and he wants to do his own labs and start me on the medication for the psoriasis. From what he told me before it has some really bad side effects but hey, I have got to get this stuff under control or I will be living on antibiotics and dealing with cellulits forever, I am sick of that routine. Yes, just when I was fixing to kick his arse to the curb he comes thru.
 
I had one more good thing to happen. It is time for a three month refill of my Humira before my script card runs out next month. I don''t have an exta $24,000 laying around to pay for 3 months of that stuff, I have a refill due and will have it delivered on Tuesday. After this runs out I will be SOL on Humira because I cannot afford it. As it is I have managed to stock pile a little of it in my refrigerator because i cannot do the shots when an infection is present. We know how many infections I have been dealing with the past six months.
 
Ok, this is for the ones asking about Zannaflex. Go into the FDA website type in Zannaflex, because back in March of 97 a warning letter was sent out to physicians that if certain meds were taken while taking Zannaflex it could increase the effects of the Zannaflex. Off the top of my head, it had listed anti-arthymics, birth control pills, Famotine, Ciproflaxin, and some other drugs. My PM dr used Zannaflex extensively but after this warning went out she stopped dead in her tracks.  I lived on Zannaflex for two years with my old PM dr and never knew of the warning letter. My current PM says that in her opinion it it just a bad drug. I will be very honest here, I had no problems taking Zannaflex and loved it. It worked very well for me and it did not make me sleepy. I could still function on it. I have such a wacky system that does not tolerate meds well at all, thats why I was so upset when she refused to rx it to me. She reluctantly gave me 40 pills a couple of months ago with an agreement that should be taken PRN. So, when I told her the other day I had taken all 40 because of pain she just said no even when I told her it was not a black box warning, only a warning letter. She could be over reacting I do not know. I just know it worked for me. Because there is no black box warning I woukld not be afraid to take Zannaflex since I had no troubles with it. I really think now its a preference type of thing or maybe even a CYA thing she is doing. Lets face it our drs are not going to do anything that could possibly set them up for a problem with a patient. So, I would not panic over this. For those of you taking the meds listed on the FDA site you probably should get off the Zannaflex for safety sake.
 
I have wild man coming over here after school and I need to shower and wake up because when that Texas Tornado hits my front door, this granny has to get geared up for him. My sister named my grandson the Texas Tornado and it is very fitting to say the least. He will spend the afternoon with us and then we will take him out to dinner. Its our Friday ritual, lol.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/4/2009 12:39 PM (GMT -7)   
Susie,
What do you mean you don't have an extra $24k lying around???? Hey, I thought you just won the lotto recently, or was that someone else I was thinking of? LOL

Texas Tornado. Love it. How does it go with snow?

Seriously, I'm glad your doc is coming around even though a bit late. Perhaps they caught the message you were trying to communicate?

Ahhhhhh, these bodies of ours. Can we just trade them in? Isn't there a cash for clunkers program for us????

Hugs,

PaLady

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 12/5/2009 2:00 PM (GMT -7)   
 
 
Hey Stray,
You are lucky to have such good Dr.'s and nurses...i have a question about the pump.  I recently asked my PM Dr. about me getting the pain pump and he said that I had to try the neurostimulator first.  Then, if the trial doesn't help I could try the pain pump...is that true?  I mean, I know you don't have all the answers, but....did you have to do that?  I am so tired of taking pills and having to increase the pain meds just to get minimal relief.  I think the Methadone I take is great...but I'm getting to where it doesn't work as well.  He said he would check out my insurance about the pump and the stimulator so when I go back on the 18th of Dec. I should know something.  But if I can't do it I would be so upset... I know that some people try the pump and for whatever reasons don't like it, but then I read about people like you that it really helps and I think "why can't I do that"?
 
So, I am glad that you are doing well and have a Merry Christmas...
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 12/5/2009 7:05 PM (GMT -7)   
Susie - WHAT A GOOD DOCTOR.
Geez, we need more people like her in this world. it makes our lifes a heck of alot easier, having someone who understands. my doc is the same, shes wonderful & actually discoverd this forum for me ! haha.
So happy things are going well for you.
Love Erin
XOXO
 

Loin Pain Haematuria Syndrome  - A Painful & Rare Kidney Disease .
 
 ^-^
 
When I Met You Boy, My Heart Went Knock Knock;
Now The Butterflys In My Heart Wont Stop Stop;
 
Just Dance' Gonna Be Okay.
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 12/5/2009 9:44 PM (GMT -7)   
Rhonda, no you do not have to do the SCS first. Sounds like that is your's drs policy. I have not ever heard of that. The SCS was never discussed with me. Thta is not required by Medtronic either.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 12/9/2009 8:50 PM (GMT -7)   
 
 
Thanks Stray.
Sorry I haven't been around lately...been in so much pain and having problems with my blood sugar levels.  Not sleeping and can't seem to get it together.
 
Thanks for the info. about the pump....I guess i will wait til the new year to think abou these things...
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 

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