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Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/6/2012 6:05 PM (GMT -6)   
Hey all,
 
I'm pretty much at the end of my rope w/ my pain management journey.  It's too long of a saga to get into all the details - but, the bottomline is this - I've been on just about every oral med there is, at varying doses.  I've had a successful intrathecal pain pump trial - yet got meningitis from the trial.  I use many other modalities for my pain - trigger point injections; nerve blocks; muscle relaxers; nerve medications; etc.
 
What happened though is that - by MY choice - I chose to go on a "drug holiday" of sorts towards the end of last year.  I was building increasing tolerance to many of my oral meds - and I wanted to see if I could "reset" my pain receptors.  Again, 150% my idea.
 
Well, wouldn't you know that..... one month after this "great" plan of mine - my PM doc (who I had a nearly perfect relationship with) - left the practice... and I got placed w/ one of his partners.  Since then, it's literally been a nightmare.  I've shared bits and pieces here and there.... but at the last appointment, she told me she is much more "conservative" and if I'll work w/ her on a "compromise".  The "compromise" has been me continuing to be WAY undermedicated. 
 
I'm so upset w/ myself.... because I was trying to do the "right" thing back in December/January.  At the time I was on high doses of morphine, 8mg Dilaudid for BT and Fentanyl suckers for migraines.  Nobody said I needed to change anything.  I just chose to give my system a break.  And, now, I'm having to jump through hoops to get one extra BT med or whatever. 
 
So - these are my specific questions:
 
A) Has any here used Opana?  Is it just a glorified version of a morphine/oxycontin mixture (I've been on both of those meds - although separately).  Is it worth trying this?
 
B) If I go in there next week and see this is just not going anywhere..... what should I say?  I have a great relationship w/ the entire clinic (front desk staff, medical assistants, etc).  But how do I say "hey this relationship between us isn't gelling - I want to see your partner".... but I could tell she knew I felt this way last time.... I was just being nice by giving it another month.
 
C) Re: the pain pump - I completley know that's within my future - but I'm 39... and I want to push as long as possible because my CP issues don't seem to be going anywhere... and I want that to truly be the last resort.
 
Anyway, I'm just blurting things out here.... hopefully some of it will make sense.  I'm really trying to figure out what to do if I go in there.... and she doesn't hear my message of "I'm undermedicated"......."This is severely impacting my life"..........and "I've got to give some other things a try"..........  If she can't hear all of that, I can't stay w/ her as a patient. 
 
If you have any thoughts, opinions, advice - whatever - it would surely be appreciated :)
--Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 7/6/2012 8:08 PM (GMT -6)   
Hi Tina...I'm sorry to hear that you are having troubles..

I was trying to remember...didn't your Dr. say that if you tried the Toradol spray for two weeks and it didn't work...that she would bump up your Oxycodone by one more pill (15mg)?

Did she go back on this? And did the Toradol spray work at all? I can't remember an update on that so I apologize if you already wrote that recently.

In regards to Opana...I personally haven't taken it, but it seems that a few people I know who do, really like it. But obviously it's all relative.

And I know it's really difficult to look at it this way, but I bet a million dollars that even if you hadn't come down in medications by yourself with your old Dr...that as soon as this one took over, she would have quickly brought you down to levels of medication she is comfortable with so you would be in the same situation:(

And the pain pump....is this Dr. ok with the idea of this and would she be the one to implant and monitor you? If so...then you might just have to go ahead with this route. It's not really about age...it's about quality of life. So, if she is amenable to this as opposed to ramping up on regular pills, I would give this some serious thought.

I think it's so important to have a good relationship with the Drs. that are treating us and helping us live our lives. And if you truly just don't think she is hearing you, or doesn't have your best interest in mind, then it's time to start looking for a new one.

The only thing that may not happen though, is finding another Dr. who would prescribe the amount/dosages of medication you were on previously. They are going to look at the last few months and even though you are not satisfied with the pain mgmt., it hasn't put you in the ER or hospital not being able to walk/talk/etc....Now...obviously I am NOT saying you aren't in a lot of pain...I am just trying to caution you in how they may look at things. Not many Dr.s are comfortable with the dosages you were unless it was for a cancer patient that is not going to live. Especially the Fentanyl suckers for migraines as that is not a "normal" treatment...

I'm just trying to help you get adjusted mentally, but I think you may have already thought of this. I think you are just asking to be in less pain than you are now, and just get a bit higher dosage.

And sorry for my memory...Are you also given muscle relaxers or nerve pain medication to help?

I really do feel for you...I hope you know that and even if I'm not saying things in the right way with the written word...just trying to help with thoughts/suggestions.

It's so difficult when a Dr. holds so much power over our quality of life:(

I am always amazed at all that you do and how well you take care of your family...your BIG family! LOL....I have trouble just taking care of myself, my mom, and my doggy!...You are definitely an inspiration to us!

I really hope you can either work it out with this Dr. or find someone new to help..

Sending you some gentle hugs (( ))
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/6/2012 9:29 PM (GMT -6)   
Hey SB,
 
I appreciate your input; only have a second but will update more in a bit.  But, yes, I've been in/out of the ER and hospital.  I don't always share those things on the board - because I literally would be talking about it every week.  I've been in the ER two times in the past week. 
 
So, yep, it's absolutely life altering... and I'm not going to wait around on a doctor because she's not as far on the path as I am.  On the flip side, I'm not going to be pushed into a pump if I'm not there either. 
 
Anyway, more in a bit. 
 
--Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/6/2012 9:43 PM (GMT -6)   
Ok, I have another second on here...
 
SB - I disagree w/ you in that I don't think my new PM would have knocked me down on my meds.  Nobody in that entire office ever had an issue w/ any of my meds.... w/ the MRIs, CTs, EMGs, etc that I have showing what's going on. 

Yes, I take a nerve med (Neurontin) and a muscle relaxer (Soma).
 
I did post an update on the Toradol spray - it was awful.  Imagine putting fire up your nose... that ended up actually hurting worse - and making the pain I was fighting worse.  I'd rather go to ER and get an IV.
 
No I didn't go back in.... I wasn't going to go in... pay a $40 co-pay to get one 15mg oxycodone.  Period. 
 
I'm sorry if this isn't coming out right.... I'm just really frustrated with my situation and feel that I essentially screwed myself, unknowingly.  I'm not saying I want to go back on the exact meds that I was on.... but I do want to be properly medicated.... and I need a doctor that will work w/ me - taking into account the journey I've already been on.  I'm be no means a "newbie" to this.... and I don't want to be treated as such.  I've jumped through every hoop they've wanted.... I just want a better quality of life.... w/out having to go back/forth over the course of 6 months to get to where I needed to be yesterday.
 
Finally, my cardiologist, etc. think my pain is impacting my blood pressure in a HUGE way - and this is another huge push to get it under better control.
 
--Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

countrydad
Regular Member


Date Joined Jul 2012
Total Posts : 193
   Posted 7/6/2012 10:10 PM (GMT -6)   
That's really horrible to hear. I can only imagine what it's like to know more than your doctor and have them not listen to you. I hope you are able to get through to them quickly to get the relief you need. Best wishes!

Randy

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 7/7/2012 12:34 AM (GMT -6)   
Hi Tina,

Wow, that sounds very frustrating. I went through something similar for the past couple years. I became disabled and had to move back to my home town. I had a great doctor before I moved. Now, not so much. I have severe pain (my signature has the list). For over two years all I was allowed for pain was 3 vicodin a day. THAT WAS IT. I was in agony.

This went on until my aunt had had enough of watching me in so much pain. My last doctor visit she came with me. She didn't say a word to anyone, but came in with me when I saw the doc.

My doctor came in and everything changed. She put me on extended release morphine, with the vicodin for BT. She also added flexeril. When I said thanks for the flexeril she said you should have just said you wanted it. I had BEGGED her for flexeril several times previously. She even ordered a new MRI. She also added gabapentin 600 mg 3x/day, but I had to stop taking it as it drives my blood sugar too high.

Now I've rambled so much I forgot my original point...I guess it was 'can you take someone with you'? I don't know if what happened with me is normal but if it is, I'm taking auntie with me from now on. The change was amazing.
Chronic pain, Depression, Fibromyalgia, Tennis Elbow (both arms), Arthritis (knees and fingers), Diabetes. Ruptured disk L-4, Severe degenerative damage L5-S1, ACDF C5-C6

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 7/7/2012 5:57 AM (GMT -6)   
Hi Tina. I'm so sorry you're dealing through this.

You mentioned switching doctors in your particular practice. Do you know the other doctor? Will s/he definitely move up your medication dosage? If s/he will, then I would switch. It's hard though, because I know that you don't want to upset the doctor you're with now.

So if you know that her partner will properly medicate you, I'd switch. Maybe you could ask to have a meeting (kind of a get to know you) with her partner, to feel things out???

If you don't think that will work, then I'd start searching for pain management doctors. I know that with all you have to do it's probably hard to deal with appointments, but I'd make at least three "interview" appts. At those appts., I'd find out about the doctors plan for your medications/treatment/what to do when you need an ER, etc.

Again, I'm so sorry you're dealing with so much. I'll keep you in my prayers.

Love and hugs,

Flower

Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 608
   Posted 7/7/2012 7:41 AM (GMT -6)   
Oh Tina, what can I say. You work so hard on this forum and I never realized just what you were going through

I am not familiar with the US system, sometimes I think it sucks when it treats honest people like you like this. Why do some doctors always assume the worst. Unfortunately there is no way of gauging pain, only you know how bad it is.

I am with Kaely on this, it is a great idea to take someone with you, who can speak for you if necessary and reiterate the suffering yup live with. It's never a good idea to say what you want, but surely if you tell her that your previous regime worked well and explain your reasons for reducing your meds, she will understand.

Remember it takes time to warm to another doctor, and to build up trust, especially if you had such a good relationship with your last one. However if you feel that will never happen you have to look for another doctor. Can you read testimonials from other people re pain doctors. I am not familiar with the US system, I am from the UK. Hopefully you will find one you warm to and feel comfortable with, not easy, but important for your future.

Good luck Tina, I really hope things work out for you. I honestly think Kaely's idea is a good one. The support would be good for you and you just might get her to understand just how badly pain affects your life.

Will be thinking of you

Jane

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 7/7/2012 7:45 AM (GMT -6)   
Hi Tina...

I'm sorry that my post didn't come out as intended. It's so hard with written word:(...I really was just trying to "think" out loud and from what you have mentioned about this Dr. being so conservative...I was thinking she wouldn't have continued the same medications that you were on because she was uncomfortable with it...Not basing it on what you actually need because she seems to be doing this now.

As you said..instead of her taking into account everything you have done already through the years and what it took to get to that point...she is only prescribing what she wants to...

And I was just trying to caution that you may not find another Dr. who was like your old one because they knew you..and worked with you to get to the medications you were on...That's the only reason I was saying that a pain pump may be a good option as some Drs. are more comfortable with this than prescriptions...But of course you should never feel pushed into anything...

Obviously I want you to get the absolute best care possible and if you can change Drs. in this practice then I would do that.

Did you contact the Dr. when you ended up in the ER this week so she knows how bad it's gotten?

Again...just trying to brainstorm things as I want you to get help!! And I apologize if my post is not coming across that way...

Sending hugs and prayers (( ))
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/7/2012 5:34 PM (GMT -6)   
Hey all,
 
The kids are crawling all over me.... so I'll be back in a little to write more.  Thanks for your thoughts and encouragement.
 
More in a bit... Love, Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 7/7/2012 6:45 PM (GMT -6)   
Hi Tina I don't know what else to add, but I did want you to know that I'm here for you. If I'm on Facebook, and you want or need to talk, feel free to message me.

I agree with you taking someone with you, if you're able to. I know it's not easy for you to go to appointments. I would discuss with the dr what your cardiologist said about your pain affecting your blood pressure. We all know that's not good, and she should too.

I wish you all the luck in the world my friend. I'll be praying that you can get this dr to prescribe you the meds to control your pain.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/8/2012 1:06 AM (GMT -6)   
Hi all,

Ok.... a few more thoughts.

Snowbunny, I think sometimes it is hard convey things w/ the written word - so it's all ok.

Let me give a little more background on this office. It's in the "medical community" of the San Francisco Bay Area. Booming business. 10+ doctors in there... and they train other up-and-coming doctors, PAs, etc. I've been a pain patient for about 9 years... with this office for about 5 years. With the my old PM - we had a great relationship; when I needed a procedure - I got one (be it trigger point; nerve block; cortisone for my hands; whatever). He also had me place in my wallet a note written on his script pad that said "Mrs. xyz has my permission for acute ER visits; please call if you have any questions". That way, if I was in bad shape after hours, there was a plan.

Anyway, I'm now faced w/ one of his partners who took over my care. I'm not sure how to approach seeing a different partner if things between she and I don't work out. But I'm trying to give it a really good try. I'm a FIRM believer in bringing a support person. I feel I'm past all that... but, since this is a new doctor, I will bring my husband with me on Tuesday - even though that means he needs to take off work.

In the meantime, I'm putting together a "folder" of sorts..... documenting what the last 30 days have been like. How my spiked pain levels affect my BP; quality of life; ability to care for my kids; the added stress on my life in general; etc. I also had been "reconditioning" myself via walking and so forth - and the past 3 weeks? Nothing. I can't even walk w/ my pain this high. I'm also fighting severe headaches every 2 to 3 days. Something has got to give!

Thank you for listening.... Thank you Loretta, SB, Jane, Kaely, Flower (good to see you!) and Randy. I'll update more after my Tuesday appointment. --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2023
   Posted 7/8/2012 10:26 AM (GMT -6)   
So sorry you are having all these problems tina, you just don't need that added stress right now. I hope you will get some answers on Tues. I will be praying for you my friend.

Hugs
Suzane

KEI_18
Regular Member


Date Joined Jul 2012
Total Posts : 50
   Posted 7/8/2012 5:42 PM (GMT -6)   
I have taken Opana and it helped some but I'm probably not the best person to ask since most meds don't really help me and if they do it is only for a short time. What i liked about it is that it does not make me itchy like oxycodone does. I can handle the vicodin during the day without issues but cannot take it after dinner b/c i will be itchy when I am trying to go to sleep. I'm on the butrans patch right now and doc doesn't want me taking any narcotics due to the effects on breathing so I do not have anything for BT pain... which stinks. I see my dr monday and will hopefully come up with a new plan. good luck to you! oh, by pain pump do you mean neurostimulator type or is it a pump providing pain meds? just curious :)
Chronic pain secondary to back and shoulder injuries, left humorous pain after bone graft due to a cyst, gastroparesis, migraines, depression, dry eyes
Current meds: Butrans, lamictal, remeron, lunesta, vit d, domperidone, baclofen, nexium, omega 3, PRNS: zomig, imitrex, xanax, dantrolene

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 7/10/2012 7:38 AM (GMT -6)   

 

         Tina!...I wanted to wish you the best of luck as you go in for your appointment today! I know and understand how you feel, and what the issues are. If it were me I would talk with one of the nurses that you may know very well, and see if they know of a more willing and understanding PM there to work with.

   We both understand the Seriousness of a pump and the problems it can deal a person. There are many factors to think about with a pump, but in the end, if it is the last resort for you, I don't see much of a choice but to go that route. You have at least been approved and gone through the trial, so that part of the journey has been completed. You and I know each other very well, so I'm not going to throw a bunch of questions at you, as we have discussed this several times in the past.

   Thinking of you all day today and my heart and prayers are with you in ernest!

        Take care, my good friend! Love Ya!

      SE wink


Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

alsoinpain
Regular Member


Date Joined Jun 2012
Total Posts : 353
   Posted 7/10/2012 7:42 AM (GMT -6)   
Good luck at your appointment today Tina!
My DX: fairly advanced, moderate to severe degenerative disk disease at L3-L4 , L4-L5 with endplate sclerosis and osteophyte formation and moderate facet osteoarthropathy. There is a transitional left lumbosacral segment with articulation of the transitional segment and the sacrum, also known as Bertolotti syndrome. There are degenerative changes at C5-C6 with disk space narrowing and spurring.

snorkels
Regular Member


Date Joined Jun 2012
Total Posts : 40
   Posted 7/10/2012 1:18 PM (GMT -6)   
Hi Tina, I'm so sorry you are going through this, you always have a kind word, thought & made me so welcome to the forum & you are suffering so much yourself.
 
I'm like Jane, Don't understand USA system, what I've read its really it makes me so angry knowing all the genuine Chronic Pain suffers like yourself & everyone on here gets treated the way you do, it really sucks.
 
 
I hope it all goes well with you're appointment Hun, I'm thinking about you & hopefully your Dr will realise how much pain you are in.
 
Much Love & Blessings sweetie
Claire x

Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 608
   Posted 7/10/2012 4:38 PM (GMT -6)   
Tina

Have been thinking of you and wondering how your appointment went. Hope it all worked out well.

Jane xx
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