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Posted 7/28/2011 10:25 PM (GMT 0)
Ok, today was my monthly appointment with my dr and I really thought based on my visit on the 7th that we would be getting a firm plan in order.

I had my daughter with today, and he opens up his computer and tells her, " You know you have a very stong Mother here.", then goes on to say about how he respects me working and being a trooper and never complaining.

We reviewed my small fiber nerve test, which didnt have any results that were within a normal range. He said he has never seen a test this far from normal, I didnt have a single score in the normal range. 4 results on the right side were seriously inflammed ( which would correspond with my higher pain on the right side and the screw that was removed due to the poor placement). The left side the scores were so high and showed significant damage and little response all the way down. Well, we allready know the left is in bad shape as I have lost reflexes and have huge areas of burning.

So I asked what does this all mean, that we didnt allready know? He said it shows that I have hypersensitive or over active symapthetic nervous system response. I said OK, that would make sense since you dx'd CRPS 2 years ago. Now he forgets this conversation. I know this was on a typed document to my PCP that I saw. I need to get ahold of my complete record I think, he seems to forget the things he tells me. He said the treatment would be the same no matter what he calls it, so I should worry about it.

On to the SCS placement, he still wants me to have the paddle lead verses the subcutaneous lead, since my goal is to be as active as possible. Now that one NS has turned me down to to my "overactive pain response", he said he will make a call to another surgeon. Which he told me he was going to do at least 3 times allready. So again, lets WAIT some more. My trial was in Novemeber, how long will my results be good for? Of course my summer is over and my window of opportunity to have a major procedure is gone, if I plan on returning to work this school year. So now I either need to take a month off of school, or wait till next June for the SCS. I cant imagine waiting another year to have this done.

So now he say in the meantime maybe we should try some sympathetic nerve blocks, to try and tone down the burning areas but he would do these in the hospital. I am not sure at what location he would do these since I have burning head to toe.

But he said we can discuss these things at my next visit. Every freakin month, we will discuss things at my next visit. Even with my precribed meds I still have an avergave 4-5 pain level at rest and 5-9 during activity, of course depending on what I am doing. I will never say I am always at a level 8 or 9, but geeze, I deserve to have much lower pain levels however we need to do it. I am the one who wants to work another few years!!!

I pretty much begged to try another nerve med. So we are starting out with a low dose of Topamax. I said before I was not able to give it a good try due to side effects and working. Now I am home for another month and can work thru it. I also got him to officially document the use of my Oxyfast to up to 20 mg PRN, but I will always start out with 10 mg. My fentanyl will stay at its current dosage. OK, so the entire visit wasnt a waste,lol.

I have not complained a single day to my PM doc. I have bent over backwards to do whatever he says, but I am no longer happy with this "sit and wait and forget what you allready said" approach. Its either do it, or dont do it and PLEASE remember what you have told be allready!!!! I have tolorated this to long and have been way way to patient.

Sorry for the long rant here, just really aggrivated today. If anyone would like to comment or give a suggeston that would be appreciated, but like I said I just needed to vent a bit.
Posted 7/29/2011 12:00 AM (GMT 0)
Hello Shell!

I have read through your post here, and you really have sensible thoughts on all of this, and I understand the frustration. confused

The only thing that stood out to me is that you are thinking to yourself, instead of having a good verbal dialog with him. This Dr is on your time as well, and it should not be wasted, and the questions held over time and time again, ….and hoping that he will somehow satisfy your expectations, are obviously not realistic with this cat.

While I give my Dr the respect he deserves, I will also advocate my own need for understanding, and more importantly, I invite him to prove he has my best interest in mind. I think some of these Dr need a blunt question or two put to them…or a reminder that nothing is really getting done….and you are the one suffering for it. If they are arrogant, then they will never really understand your pain. You should never have to beg! State you're case, and ask them what they plan on doing for you. There comes a time, that you will have to tell him to listen and then just spit it out with a convincing composure. There is no need for tears when you do this….he is going to know your about fed up!..….just look that sucker square in the eye, and let him know that you put your pants on the same way he does every day. (One leg at a time) Either treat me or stop wasting my time! Period!


Every Dr is different, and we have to remember they see patients that are also different. While a person may not think so…I'm going to suggest that demographics can play a part, in how a Dr may treat a patient. Here about two years ago, my Dr sent me to a local pain clinic, and as soon as I walked in the door, I knew I was in a very different world. It was obvious that all of the staff had absolutely no respect for their patients. They were extremely rude….even the receptionist were this way.


I think by the time I got back to the room to be seen, I was already hot under the collar, and my suspicions were soon validated by how the PA treated me. I think they must believe that if a patient is hurting that bad they can treat them how they want and get by with it. Well they got a taste of me very quickly! I stormed out, and reported them to my Dr as soon as I got home. My Dr called them, and there was a very heated conversation between him and the PM. To this day, I hear complaints about this clinic from Dr's and nurses…and several patients.

I suppose I have drifted way off the subject here, and I apologies for it…as this is about you and not my past experiences's with PM's. However, you are the one suffering here, and I urge you to take ahold of your own destiny when it comes to your care. Of course, it's easy for someone to say you need to change Dr's or PM's….but you will have to weigh your options, ….such as can another one be found quickly? …..who will your insurance allow you to see?…..and so on.

All of this might be avoided with a simple heart to heart visit with your current Dr,….but be prepared to move on if things don't go well. Get your Ducks lined up mentally, and make sure they will quack when you want them to. Boy this all sounds easy!….well reality is,... that it's not always that easy. All I'm saying is... make sure you get your fair share of respect, and if the guy isnt' getting the job done then plan on a move.

Good luck to you, and a sincere "Get-em Tiger!" wink

SE
Posted 7/29/2011 12:09 AM (GMT 0)
My Dear Shell

I am so sorry that you are having doctor issues. You have to be ypur own advocate because no other person will do it for you.

I wonder if your doctor has beginning dementia since he cant remember what he said to you the last visit that was documented.

You have been an excellant patient in his practice It is a shame that you have to change providers, but you have to do what you need to do.

Keep us posted as to what transpires. I will pray for you

Soft Hugs

Betsey
Posted 7/29/2011 12:50 AM (GMT 0)
Thank you SE and Betsey for making it to the end! After I re read it is way to long but I am never good at editing out the non essential info,lol.

SE, I feel today was the day that I did speak up. I think I really caught him off guard with my questions and needs for clarrifications. And these were about dx's and info he has given me in the past. Shouldnt he keep a list in the front of the chart for easy reference? His comment about, it doesnt matter what we call it, its all treated the same, just doesnt fly with me.

I used to be very patient, there is just no way I can continue. Just because I am young doesnt mean I have all the time in the world to be like this. Maybe its just yesterdays anethesia talking, I dont know,lol. 8 years of continuing to get worse and doing the same old thing is just BS. I have been thinking for a while that he isnt equiped or doesnt want to handle the combo of things going on, for whatever reason. I have stayed since he is local, I like him as a person and he hasnt treated me like a drug seeking 36 year old and I am worried that I wont find a more understanding dr in my area. I think I will call my PCP and see if she has any thoughts.

Thank you again, at least I feel a bit validated that I am not exactly crazy in my expectations here,lol.

Post Edited (Shell74) : 7/28/2011 7:14:18 PM (GMT-6)

Posted 7/29/2011 1:00 AM (GMT 0)
Ok, first things first, we have to find a solution to your problem.  Please get your records, asap, they are your records, and they belong to you.

After you get your records, find another pm doctor, make sure this "dr" gives you a months worth of scripts before you turn him loose.  I am not an advocate of dishonesty, but I dont think I would tell him you are going elsewhere, I fear if you do that, he could

 really mess with your meds.  You can tell him you need your records because you are thinking of filing for SSI, or SSD, in the future, say near future if you have to.  Get your records, all of them and make sure you have them all before you tell him you are not coming back.  Something like, well we can talk about that next time doc.

While you are getting your records together, find a new pm doctor, investigate this doc a little, see if you can find anything, good or hopefully not bad.  I know this is alot of work, I have had to do it several times myself.  One thing I did not do was investigate the potential doctors I was going to.  I mean really who has time.  But this is so worth it, I am sure.

There are ways to find out what others think about any possible doctor you may want to see.  I myself am not computer savy, but I know others out there will help you.  This doctor you are with now, is I dont know, either really greedy, or just not all there.

I wish you good luck if you decide to change doctors, remember, they do work for us.  We pay them, they dont pay us.

I will say many prayers that he either wakes up or you make a change.  Either way, something has to be done, I mean really November?  thats crazy.  Ok I am getting off subject again.  It just really burns me that you have to go thru all you have to and be in so much pain.

Ok this time I really am signing off.  Take care, and go out there and get the treatment you deserve.

Posted 7/29/2011 1:30 AM (GMT 0)
I think you should leave this doctor, it's time, you've been thinking about it...
don't look back, just move ahead I know it can be hard, I'm going to be doing this too.
First thing tomorrow make a phone call and get an appointment with a new pm
doctor...tell your other doctor that you need a second opinion...
well wishes
Posted 7/29/2011 1:48 AM (GMT 0)
…this is one place I know we can come to and find at least someone to support and listen. We really are family here, and we know full well that the members here understand what chronic pain is all about. It angers me every time I read a post like this,…seeing one of our members in mental and physical despair, and a poor excuse of a Dr wearing the official title of a PM DR…rakes in hundreds…if not thousands of dollars a day…and for some incompetent reason fail to properly treat those who have put their trust in them.

I will say that there are many good PM's out there, but it seems in this day and age they are far and few between. I don't need to hear excuses, about the government and the pressure they are putting on them….or that fact that they have been unknowingly treating a drug addict, and it's their fault! If you cant tell the difference, then you shouldn't be practicing!

Shell…you have every right to come here and vent, and I encourage any member to do so, if it will help. I have never met you in person and I can tell your in pain! I don't know a single member here that takes pain med's for enjoyment. We take them because we have physical pain….not because we want to enjoy ourselves!

I and others here, of course,…. hate the pain, but we also hate taking the pain med's as well. Sorry for my little rant, but after a while it gets to me!….these are good people!…and we didn't do anything or ask for this way of life! I just received a phone call from one of our other members complaining about this very thing tonight!….they are obviously in pain, and on a very low dose, and yet cannot get seen in a timely fashion and treated properly for it.

As I came up stairs for supper tonight, my wife said you look like your mad…..did I do something wrong?….I proceeded to tell her about this post…and it angered me to know we had another member who was suffering, and a PM or Dr that was dragging their feet for some reason. It's so uncalled for! Give me a break for crying out loud! It just struck me wrong, because I had a phone conversation just a few moments before…dealing with the same thing.



Keep your chin up Shell…and know you have support in spirit! Again!…carefully weigh your options first, before making a move….but if one is needed…then do it. God Speed!

SE
Posted 7/29/2011 2:29 AM (GMT 0)
I think we have all hit on something here, these doctors accuse us of being drug addicts just trying to get pain meds, well we can hit back with, you are pm doctors due to the huge amount of money you make.  Lets be real here, PM doctors are in high demand (pardon the pun), everyday another person falls into the category of the cp patient.

I mean think about it, this is big money here, so there is supply and demand.  I think we need to demand to be treated with the same respect due any person with a disease.  It sounds simple, but we know its not.

Sorry, I ranted again also, but its just really angers me, its just so unfair.  Ah well, as I tell my grandaughter, life isnt fair. not always.

Well I think I am better now, take care of yourself Shell, and I really hope you are able to find the type of pm doctor you deserve.

Posted 7/29/2011 2:52 PM (GMT 0)
I printed out the entire list for my insurance company and am crossing drs off the list allready. I will call my PCP and she what info she can pull together for me to at least get a new patient consult/ second opinion. Once I find someone I like I dont mind transferring everything. I did speak to a PM office last week and they wouldnt see me unless they had a discharge note from my current dr, but there were several others to try.

Maybe a new dr will say the same exact thing, about meds, treatments and dx's, and if that is the case then so be it. But I just feel I need a plan to be followed and then stick to it! Of course I am open to changes as needed but you guys catch the drift.

I know I have been talking about doing this, but I guess this was the straw that broke the camels back,lol.

Thanks much for the input!

Thanks everyone!
Posted 7/29/2011 4:31 PM (GMT 0)
Shell74-

I'm currently going through some of the same stuff. I've tried two pain centers. The first pain center I went to I was their reimbursement manager for about two years. This Dr. spent a couple of minutes with me and told me that basically all my problems were caused from slouching and being out of shape. He told me to "tough it out" and go to physical therapy. He would not prescribe anything for pain...even though my pain everyday was about an 8. (Pain that was bad enough that I would sit and cry at my desk at work and on breaks I would go lay down in the back seat of my car). I don't think it gets much worse than that. After I saw this pain doctor I thought about all the people who have such worse pain than I do (afterall, I used to read their charts all day long). I really thought about them and wondered how the heck they were able to see this guy and get the care they deserved.  I still worry about it.

The second pain center took an entire month to get in. Once I did, they kept scheduling me with the assitant and if the PM doctor had time, they would send him in. I was told to find my "happy place" and also to get on antidepressants. I understand the pain/depression/anxiety connection, but it really felt like they were telling me it was "all in my head". The check in staff and schedulers were not necessarily rude...but very disconnected from the patients. I'm sorry, but in a pain center you need compassionate doctors but you also need compassionate staff members..this includes schedulers, front desk people, PAs, all of them. When you feel awful, it's amazing what a smile or a kind word can do for you.

I'm still seeing my PCP. Last visit she got mad at me and told me I was upping my dosages (which I wasn't). I even took out the bottle and showed her how she wrote it. I was taking less than she said I could take and I was still being told I was upping my doses without permission. She then got up, left the room and sent the medical assistant in to make me sign a drug contract. I signed it, I have nothing to hide. But the way I was treated was horrible.

I finally started seeing a wonderful physical therapist who wrote my PCP a full report of what was causing my pain. Last time I went to see my PCP, they treated me like an entirely different person..just because of this report from my PT.

Anyhow, don't mean to ramble on...just know that probably most of us have gone through this. And probably most of us have gone through this more than once. I've always been shy and afraid to ask for what I needed. That's how I ended up getting all the bad treatment. I'm trying really hard now to be my own advocate, like the others said.

But it sure sucks having to request records, find new doctors, etc. when you are also in pain. Having to deal with that normally increases my pain since it kicks up my anxiety...which I'm sure happens to you as well.

If you keep at it, you will find the right people to help you. Just keep going and never give up. And remember, that if any doctor treats you with disrespect you have the right to go somewhere else. If half these doctors lived a day in our shoes they'd probably be crying like a baby.

I hope you find someone good and someone that will give you the respect you deserve!! The two things I always tell myself when I need a good kick in the but is #1 I don't have the time or energy to waste on physicians/treatments that are not helping me and #2 I am too good to be treated poorly by any of these doctors.

And you are too..don't forget that...

Posted 7/29/2011 5:20 PM (GMT 0)
Hi Shell, best wishes on getting the right doc match.

I tried Topamax and found it worked well on my nerve pain - spine and fibromyalgia.  BUT (there's always a but) I had to stop it after a couple of months because it caused me to not control my body temperature and not sweat.  It also gave me dizziness, weakness, and worst of all - confusion and memory problems.  I would drive a route I knew well and get confused about where to turn, where and why I was driving.  I started with 1/2 pill and had to immediately go much lower, to 1/8 once a day, then build up to twice a day and finally ws on 1/4 pill twice a day, because of my high sensitivity.  I plan to give it another try when the extremely hot weather ends, maybe only take the 1/8 dose, because it did help with the pain a lot even at that dose!

Posted 7/29/2011 9:39 PM (GMT 0)
My PCP sent records today to a new office that she recommends and she said I should expect a call on Monday. I was glad I didnt need to go in to speak with her. I said want a second opinion, and I feel comfortable with the dr and facility I will transfer everything gladly.

Its a step in another direction. I am hoping that a fresh set of eyes may shed some light on my situation. I am always leary though that I may end up in a more restrictive setting, then what do I do? If I do not accept a prescription or make a follow up, I am not breaking my pain contract correct, and I can go back to my origional dr right?
Posted 7/30/2011 4:02 PM (GMT 0)
Hi Shell, well the comment your dr made to your daughter really is disturbing. He may have been thinking he was making a compliment to you but I sure do not take it that way. That tells me he is going to not make much effort in getting you feeling any better than you are right now and he is going to just expect you to be a trouper and tough things out. Its almost like being punished for something you haven't done.

We both know that is not the solution to your situation but it sure makes me feel he is not going to budge.

I think you may have a difficult time getting a PM dr to do a consult only too. They either want you to be the patient or they want not part of us at all. Many use the excuse their practice is not set up to do consults and they do not have the time to give someone on a consult.

In the event you end up staying with this dr, I am afraid I would have to sit him down and tell him I am not going to be a trouper and just suck it up that he needs to address your issues in getting you some better pain control and I would not give him any room on that either. I would make it very clear how you planned all of this while school was out so that it would not interfere with the work schedule. I hope you get to feeling better,
Posted 7/30/2011 4:12 PM (GMT 0)
Part of the problem with doctors is that I think they get confused on which patient is which and quite frankly it is their own fault as they all too often make poor visit notes. Out of all the doctors I have seen for this or that, only a few of them actually made any kind of note during the visit and only 2 of them actually made detailed notes.
Posted 7/30/2011 5:27 PM (GMT 0)

straydog said...
Hi Shell, well the comment your dr made to your daughter really is disturbing. He may have been thinking he was making a compliment to you but I sure do not take it that way. That tells me he is going to not make much effort in getting you feeling any better than you are right now and he is going to just expect you to be a trouper and tough things out..........."............. I would make it very clear how you planned all of this while school was out so that it would not interfere with the work schedule. I hope you get to feeling better,

Hi Straydog, he has made similiar comments in the past too. I think partially its my fault though. I have opted not to increase meds or pursue more extreme methods of pain control so that I can drive and work efficiently. I have stayed " happy" at these levels at my own expense.

When I mentioned about my work schedule, he said even with the SCS paddle placement I shouldnt be out of work no more than a week or so. OK, sorry, dont believe that for one minute,lol!

Yes Jim I agree, how in the world can a dr forget a major dx that they told you, not to mention like I said it is in writing somewhere. I work with kids with multiple disabilities in schools and in every chart I have, I keep a note of current dx's, thats very important to know right away. I dont expect any dr to remember from month to month my exact details but how can they not keep tabs on this.

Well, hopefully next week I ill get a call with some info. Thanks for all the input!
Posted 8/1/2011 8:07 PM (GMT 0)
Ok, today I am am even more confused that before! I did get a call from the new office. They will not make a descision if they will take me as new patient till they have my records from my current dr in their hands for reveiw.

So they say I need to tell my current dr to discharge me and send my records to them, so they can decide if they think they can help me more than my current dr has. So they might not even take me on as a patient, where does that leave me? That could leave me with NO PM dr what so ever! That is a completely terrifying thought at this point in time. The woman on the phone told me to think of this as a positive thing, why would I want to waste my copay, OK, DAHHHH! Having a PM dr with a tiny bit of relief is tons better than having no dr with no relief, lets do the math here hun,lol!!!! I am not comfortable with this at all.

My PCP has suggested that, I have my PM forward a copy of my complete record to them, then they will forward it to the new PM, then if accepted as a patient I can get an official discharge before my first actual appointment. Then I will only be stuck with the possibility of having a dr I dont get along with, but at least I would have a dr. There are many drs in the practice, so I could then switch between them as new appointments became available. Although not the best way to do things it would work.

I am completely fine with this, hopefully the new office will be as well, with the PCP's prompting. At this point the PCP office is just going to do it and hope for the best.

Aarrgghh, I shouldnt let this get me frustrated but I feel like the bad guy here. I am just looking for better, more comprehensive care so I can continue working productively and its this difficult to simply change doctors!
Posted 8/1/2011 8:26 PM (GMT 0)
Hi Shell, I know you are feeling a little guilty probably for seeking treatment else where but really, you did not have much choice. Sure, you toughed out a lot stuff to keep yourself working and yes you did not ask for increases in meds because of this. There are thousands out there right now working with CP and they are doing the very same thing you have done. But, with all that aside, when you tell your dr things are not good at all and your pain level is really getting bad, it is still his job to try and help you.

I did the very same thing for years, between doing as many as 16 trigger point injections at 7:30am and then heading to the office, and getting IM injections of Decadron every 6 weeks to help with pain, I was able to keep working for many years. But, I paid a huge price for all of that steroid use, osteoporosis in my entire spine. Steroids made me nuts, it was like giving me instant speed, I stayed up for 48 hours after getting the injections or the shots of Decadron. The trigger points started in the back of my head and he went all the way down my spine to my rear. Talk about being a pin cushion not to mention the scar tissue from too many injections.

I am not surprised that the new PM dr wants a letter on hand showing the previous dr has been dismissed. They do this more for a ethical issue, kind of like no, I am not trying to steal patients from you. Its kind of an unwritten thing between drs.

I do hope this works out good so that you can get some help. At least if you are not real happy with this dr perhaps you can see someone else in the clinic since there are several drs unless, they have an agreement not to see each others patients. I had this happen to me once when looking for a new gastro.

How long will it be before you will get an appt with the dr, any ideas on that? Oh, BTW, only off one week to have a paddle put in, whew, I don't think so, lol. Good luck.
Posted 8/1/2011 8:52 PM (GMT 0)
Boy Straydog, I am glad I wasnt the only one scheduleing my procedures at 7:30 and the heading off for a full day of work. When I had my deviated septum surgery a few months ago I even went to work the next day because I had a student observer giving a presentatation. I am a sucker and think about everyone else first.

I do understand about wanting proof I am not using 2 doctors, but to require it before they commit to taking me on is asking way to much I feel. I cant be left without a dr! My PCP will write for a month or two if it comes down to that but she has to protect herself as well. Years ago she told me she would write for my pain meds but things have since changed.

Yeah, about the SCS, I know he is loopey for saying that. I know I am tough but I am not super woman,lol!
Posted 8/2/2011 9:06 AM (GMT 0)
Shell, I will admit it now, but would have cut both arms off back then before admitting it, all that crap I put myself thru trying to maintain a level so I could work, did nothing for me except cause more problems and damage later on down the road. I really thought I was doing the right thing and I was so wrong. I was also in a lot of denial that my body could be doing this to me, lol. I had a wonderful PM dr, that I became very good friends with over time and ended up referring clients to him for care. He admitted that normally he would not have done so many trigger points in one day on a patient, but he knew I would not go back and forth and break it up into at least two appst, lol. It was a one shot deal with me only as I use to tell him. He kept after me about taking a leave of absence from work to let my body rest & heal which I never did, but he said well, its documented in your chart that is my recommendation. I finally quit the firm after 18 years and it was one of the best things I ever did in my life. I was sorry that I had not done it sooner. The stress level was incredible there and after being away from there one month he was floored at the difference when he saw me one month later.

I agree with you these PM drs forcing potential new patients into releasing their drs is wrong, What happens if you don't like the new cat, you are stuck without a dr, odds are not good that the previous one will take us back as a patient either. They need to bring back the word consultation back into play. There are all sorts of ways to insure a patient is not double dipping with two drs too. I just hope this will all go good with you, keeping my fingers & toes crossed for you.
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