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bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/16/2009 12:21 PM (GMT -7)   
Hi everyone,
 
My pain level has been steadily at an 8/9 for several weeks now, with spikes to 10.  The week before last, I had been so bad that I could not get out of bed for several days, and I was trying to avoid the E.R. nightmare, so I went to my PCP who I have been going to for 23 years.  He owns a practice that is like it's own little E.R., he has physicians from almost every field of specialty on staff, and can do almost any test that you would normally have done in a hospital.  He used to be the head of the Emergency Room of our local hospital, but when he expanded his practice and became "competition" to the hospitals emergency room, they said it was a "conflict of interest" and not only took away his position running the E.R., they stripped him of his hospital privileges altogether.
 
Anyway, as I said I went to him in an attempt to avoid the E.R. for several reasons: our local hospital has become way to small for the size of our community, and therefore, it is always a rediculously long wait to even be seen (I've waited as long as 10 hours), and then it is always a gamble as to how you are going to be treated by the staff, whether you are taken seriously, or if your treated like an addict looking for a fix.  The strongest medication my PCP has in his office is demerol, and as much pain as I was in, along with the tolerance I have built up after 14 years with CP, I wasn't sure if it was going to do much, but I was hopeful that maybe because I hadn't been given that particular medication in many years, that maybe it would be enough to take the edge off.  He gave me three injections over about 45 minutes totalling 225mg demerol/75mg phenergan, and it did not even begin to touch my pain.
 
I sat in his office for almost 2 hours while he tried desperately to find a way to help me.  Being a patient of his for as many years as I have, obviously he knew I was genuinely in terrible pain, so he started with the physician who was "on-call" for his practice, but he told me before he even called her that she has "a bias against chronic pain patients", and as he expected, she was not willing to do anything for me.  She said even if she had a recommendation from my PM as to what would be appropriate given my history, she said that she would not be willing to write the orders.  He then tried calling the E.R. physican to ask him what he would be willing to do for me if I was to go there, he, too, refused to take a recommendation from my PM and said that he would give me one 4mg shot of dilaudid, but I would have to wait my turn, and they were backed up several hours.
 
We also called my PM, who is in practice with one other doctor, and of course, the other doctor who I have never seen in the 10 years I've been going there, was the one on call, and said that my doctor was "unavailable", and because I have never seen him, and he does not know my history, he told my doctor to tell me to wait until the next day and call my PM.  So, with no other options, my PCP sent me home to follow up with my PM the following day.  My husband and I called my PM numerous times over the next several days, and I never got a return phone call from him, nor from anyone who works for him.  When you call his office, you never get a live person.  They have what is called a "nurses line" which basically is a voicemail that the nurses check several times a day, and they are supposed to pass any messages on to the doctor.  I don't know if he never got any of my messages, or if he just ignored them, and I know some people will say that it is time to find a new doctor, but PM doctor's are very hard to find in my area, I travel 2 hours each way to see him. 
 
Naturally, I am very upset, disappointed, angry, etc., and I am at a loss as to what to do.  I know he has some patients who call constantly for every little thing that ailes them, but I have never been like that.  The last time I saw him for my routine visit, he was upset that the last time I was admitted for a similar situation, that the doctor's treating me, nor I called him for his input or at least to let him know what was going on.
 
Despite my intrathecal pump and my oral meds, I suffered like that for over a week, I am a little bit better now (back to a 8/9 instead of a constant 10).  I am not scheduled to see him until the end of June.
 
I'm sorry for such a long post, I just needed to get it all out.
 
Lorie  
 
 
 
 

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/16/2009 5:07 PM (GMT -7)   
Lorie I'm sorry you have to go through all this pain. I have noticed that my Pain Group does the same thing. Only voicemail. This is my first paindoctor so I'm still wet behind the ears but I find this odd.

Have you thought about going into see him before your June appt? From reading your post you have been dealing with CP for many years. Have you ever had to add more Break Through meds along the way?

Once again I am so sorry you had to deal with all the havoc!!!!

You will be in my prayers.

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 5/16/2009 6:41 PM (GMT -7)   
Wow, your pain management doctor should treat you better than this, it's their speciality after all..
If I could I'd come up and ring all those doctor's necks with the exception of your PCP..geezee.
Call your current pain management doctor tomorrow every hour on the hour until you can get
some help and tell them that on the voice mail that you plan to tie up their phone lines as you
need urgent help and deserve to be treated like a human being..
Hope you get a low pain day soon!
You'll be in my Prayers, too...
Good Luck and well wishes, keep us posted, okay....
all the above was ment in a good way..
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 5/16/2009 7:19 PM (GMT -7)   
Lorie
I can not even begin to tell you how angry  and upset your post makes me! There is just no excuse for you to be treated that way, by any of the Doctors, and especially  by your own, via his nursing stafff! You Doctor took on the responsibility of caring for you! You are,  one way or the other, paying his wages, so in a since you are his employer or boss!  How dare they treat you that way! Your post makes me feel frustrated because what you have described is way to common of an occurance! Why can't pain be taken seriously? Way to many Doctors and their staff, need  to get a big huge infusion of COMPASSION, because that is the only thing I can see, that would make them that calloused toward their patients, they must lack compassion! And  if a Doctor or any member of their staff doesn't have a huge amount of compassion for their patients, .......well then they shouldn't  be practicing medicine or even seeing patients! I just don't think Lorie you should have to be in the position your in! I know that yesterday when I tried to see my Pain Doctor and was told I couldn't and I would have to wait till Tuesday, and his nurse thanked me for checking in about my pain med break through dosage, but she could not authorize me to increase it, and in fact told me not to increase it without the the Doctors permission. Well I appreciate and understand her position, but I am also well aware of my own position, unfortunately  like my Doctors nurse, some are not willing to go the extra mile in support of their patients. I have seen it all to often when I worked  as a staff nurse on a med surge unit. Many nurses were afraid to call certain Doctors in the middle of the night, because the Doctors were mean, rude, and other wise unkind, and often would hang up on them, and yell and scream and cuss at them, so they were willing to jeopardize their patients welfare because they were afraid of the wrath of their Doctor! My patients came first!  I called one Doctor 5 times in 15 minutes because he kept hanging up on me saying he did not want to be bothered at 3AM. Well I was not going to let my patient go south just because his Doctor was tired and had an attitude problem! I listened to his wrath and his threats to my career, and his hanging up on me, and I would call him back!  Finally I just told him, he would get more sleep if he would just listen to me,  and then give me some orders to take care of his patients! As I was goiing to keep calling him untill he did something! The next morning when the Doctor came in I really got an ear full!  But I saved my patient that night, and much to my charge nurses dismay, and urging me not to, I documented everything that  Doctor did and told me all, the times I called, I put every bit of  it in the patients record in the nursing notes! I covered my ( behind),
 
Lorie it irritates when I read post like yours, because it is to bad none of the Doctors and nurses  were willing to treat you the patient  properly or adequately! That is such a shame! They were not willing to do the right thing and that really  is  sad! I know I am rambling abit, but your post hit a sore spot with me especially since I talked to my pain doctors nurse yesterday! She was not willing to go the extra mile for me to help me with my pain either, and I am expected to wait till Tuesday morning!  Well I am not going to sit in extreme pain because she will not contact my Doctor. and get a prescription change or dosage change! Fortunately I have enough pain meds to adequately cover the situation at least for a while!
 
I dow wish you well bluejet2, your in my thoughts and prayers!
 
White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/16/2009 8:27 PM (GMT -7)   
Lorie,
I wish I had a magic wand. I wish I could use it to change doctors minds about how they see and treat CP, and to put big gold stars next to the name of each doctor who treats us well and make them readily available.

Ok, that's my wish list for you as well as selfishly, for me. I well understand what it's like to not have many PM's available to you. I would do as others have suggested and just keep calling. At this stage, what have you got to lose, although yes, I know we then get labeled as one of those problem patients. Or you could try to dowse it with honey and sweetness, and leave messages saying how puzzled you are that you haven't been called back because you know how much your doctor cares, etc, etc, etc.

I'm flailing about here because I don't have much of an answer other than to agree with others, especially White Beard. It shouldn't happen. But it does.

Maybe the answer isn't to give doctors a dose of compassion, but a dose of fear from another direction - fear of retribution if they fail to treat CP adequately. But there's a lot of work to do for that to happen.

((((((((((((Lorie))))))))))))))

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/16/2009 8:35 PM (GMT -7)   

LLPLUV & Chartreaux:

I very much appreciate your responses, as I said, I truly am at a loss as to what to do and I thank you for your suggestions.

My PM has not given me any kind of increase in my oral breakthrough meds or my intrathecal meds in over 3 years.  His reasoning is that because of my age (40), he feels that he has be very "stingy" (for lack of a better word) with increases for me because hopefully I am going to live for another 20 or 30 years, and he says that I am on a hefty dosage already and he can only go so far.  I understand his reasoning, and I have always been a person that wants to be on the lowest dose possible, in fact, I fought against taking pain meds at all for several years after my injury until I just had no choice.  But after 3+ years with no increase, given my level of pain, and the fact that everyone with CP continues to build a tolerance, that it is completely reasonable at this point to give me an increase.

The other thing that bothers me is that I have been told by 3 different nurses who have years of experience with taking care of pain pump patients (in fact, the company they work for used to do all facets of home care nursing, now only take care of pain pump patients), as well as a couple of others who have them on this forum tell me that not only am I nowhere near the maximum recommended dosage but that I am significantly undermedicated!

I have given serious thought to changing PM's, and in fact based on recommendations from my nurses have tried doctors who they said worked well with them and their patients, and none took my insurance.`PM's are very hard to come by in my area, I travel 2 hours each way to see the one I have.

The only glimmer of hope I have is that the intrathecal pump I have has the capability of being programmed so that I can give myself a bolis dose of medication 1 - 4x's a day.  My nurses and I have approached him numerous times about the possibility of allowing me to take advantage of this feature and originally he would not even discuss it because he felt that it was dangerous (which made no sense to me or my nurses because he would determine the dosage of the bolis and the # of times a day I could use it) and he said that he did not know one doctor or patient who had ever used this feature.  Now he has agreed to allow my nurses to submit documentation of patients they treat who do use this feature and said that he will take it into consideration and re-address it after he reviews it. 

I am going to either move my appt. up, or call until he calls me back and find out why I was not even given the courtesy of a return call in response to my numerous attempts. 

Thank you again for allowing me to vent and for your advice.

Lorie

 

 


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/16/2009 9:26 PM (GMT -7)   
Whitebeard & PALady:
 
Thank you too, for your responses.  I do appreciate it very much. 
 
Whitebeard:  I am sorry that your plea for help was met with indifference - I really would not wish CP on my worst enemy, but in this situation I feel pushed into wishing that only the doctors & nurses that have lost the capacity to (or never had it to begin with, which I really hope is not the case), would just have to tolerate 1/2 the pain we have been enduring for years, for just as long as it would take for them to never forget it!  I bet a lot of them wouldn't make it a day.
 
The nursing field definitely suffered a huge loss when they lost you.  I sincerely admire the lengths you went to to care for your patient(s) the way they needed and deserved to be treated.  I have always tried to be of the mindset, as you said, that doctors would not be able to provide for their families without their patients, and that they are priviledged to have us as patients, instead of them feeling that we are priviledged to have them as doctors.  yeah
 
I still can't believe that I went 0/3 despite the fact that I had my PCP to assure them that I was not a drug seeking addict! 
 
PALady:  I wish I had that magic wand as well.  I know that these doctor's deal with a lot of abuser's, and they are partly responsible for making it so hard for those of us that are truly in pain to be taken seriously when we go to the E.R., but I don't think a PM can use that excuse.  I don't believe for a second that they can't tell the difference. And yes, these doctors & nurses should have to answer for not treating us the same way they treat any patient with a chronic condition.
 
Lorie
 

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 5/16/2009 10:18 PM (GMT -7)   
Lorie
 
If even your Doctors nurses feel you are being under medicated, then I would definitely be looking for another pain specialist that specializes in your intrathecal pump! There is no excuse to have you undermedicated and in pain! That is just not right! There was someone else on this forum that was under medicated with there pain pump,  I am thinking it was straydog   I might be wrong about that but I think it was her and then she went to a different Pain Specialist and it made a world of difference for her. May be I can find her and she might be able to help you!
 
Good Luck to You Lorie

White Beard


  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/16/2009 11:42 PM (GMT -7)   
Yes, White Beard! Right, as usual! I was thinking of that as I read Lorie newest posts. But Lorie, I'm guessing maybe that's who you were referring to?

I have no idea where Straydog (Susie)'s doctor is located or where you are. I wonder if her doctor would have any way of knowing who the more newly trained pump doctors are. It seems like that had something to do with it, but I might be remembering wrong. It's late!

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/16/2009 11:48 PM (GMT -7)   

Hi Whitebeard:

You are right, it was Straydog.  She has told me of her experience, and she believes that I am terribly undermedicated.  Unfortunately she and her doctor are in Texas, and I am in upstate NY.   It seems like her doctor is one in a million.

Just to clarify, it is the home care nurses that come to fill my pump that also feel I am undermedicated, not my PM's nurses.  My home care nurse has been frustrated by this situation for a long time because she can see that I am suffering and she can not understand why he won't use the pump to its fullest potential and let me try the bolis feature, or at the very least give me an increase, but she's not going to give up easily, so I try to maintain some hope that he will come around.

Thank you again.

Lorie

 


anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 5/17/2009 12:41 AM (GMT -7)   
Lorie, I don't have any wonderful words of wisdom for you. I sure wish I knew what the answer was. It is sooo wrong for you to be treated this way. There is no excuse for this. For you to be at such high pain levels on the pump or otherwise without any relief in site is unacceptable. I am so sorry you are having to go through all this. You know you have everyones' support here. I am wishing you well and a quick resolution to all this. I'll keep you in my thoughts.
Anice

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/17/2009 9:01 AM (GMT -7)   

Hi Anice:

Thank you very much for your post. 

How are you feeling?  Did the doctor refill your script, or give you something else?  I know you have been going through so much yourself.  I appreciate so much you replying to my post when I know you are going through a particularly hard time yourself.  

I am gong to make him aware of the situation and tell him how abandoned I felt.  

Lorie

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 5/17/2009 9:15 AM (GMT -7)   

Good morning BlueJet,

Well, all I can say is my heart goes out to you. Had I not been in your shoes already I would not be able to totally understand where you are at.

Let me tell you where I am with my pump, 37.5 mg concentration dosage in my pump, (dilaudid) I have been bumped up to 7mg in 24 hrs. My dr said she would have me up and running with the best of them, only on a different level, I believe that statement with all my heart because I know what she has done for me in a few short months. I was always a very active person and she knows this. She wants me active, people do better when they are active and she believes in this whole heartedly. She says how it works is the more active you become, many times the pain level increases and when it happens thats when it is time for an increase. When my pain increases and stays up for a week, I know an increase is needed. She agrees that this is a good rule of thumb for me to go by. If I am outside working in the yard and have used muscles that have not been used in years naturally I will hurt and be sore. With my handy Tiger Balm rubbed on at night I can get rid of sore muscles nearly over night. Its wonderful stuff and great for muscle pain. So, I know in a week if that pain keeps creeping up then its increase time. Also, I do not have to wait on a pump refill every six weeks to get an increase. What I do is call and talk to the nurse and she talks to the dr and I go in and get an increase, end of story. I get no sermon on maxing out my dose, instead I get told we are here to help you. This is still hard for me to remember is that I can get help from her office. Also when you call her office you talk to live people, no voice mails allowed at her place. It gripes her to no end to have to talk to a voice mail. lol

I fully understand not wanting to have to travel far to see the dr. But let me tell you something, knowing the difference of how I feel and knowing how these pumps can give you a life back, traveling would not be holding me back. If you could ever get to that point Lorie, you would be saying the same thing because number one you would be feeling so much better that getting in the car and taking off would not really be a big deal to you.  I am planning a trip to OKC soon to see my sister. Its a 2 and a half hour trip normally by car. I will stop and get out and stretch because sitting can be tough on me. I get terribly stiff when I sit.  Its been 3-4 yrs since I made that trip and I can do it now.

I know if I had a nurse as you do that comes to my home I would be getting a list of drs from her that actually works well with pumps and I would have my PCP ref me to one.

As it stands right now you are losing quality time each day that goes by, you cannot go back and reclaim that time. You very own dr is taking life away from you by not treating you properly. My dr asked me on the last visit how I felt about my old dr now that I am doing so well.  I said well, you know it would be real easy for me to become very bitter towards him. Because of him I really lost two years of my life due to his limited knowlege, yes I could become very bitter. But, instead I will not allow myself to go there, why, because I am going to use that energy doing the things I want to do and I also thank God every day for you being in life, because of you, I will be able to do all of this and many more things. My dr sort of dropped her head a little and she had the biggest grin on her face when her head came back up. She patted me on my shoulder and told me to just keep on going and doing what I wanted to do because life is too short and we never know when it can be cut short.

Lorie, sometimes we have to step out away from the horrid pain and take a better and longer look at things around us. I have a gut feeling you have alot of loyalty to your PM dr and I understand, I sure did too with my former dr, I thought he was awesome. But sometimes we can have misguided loyalty. Loyalty is not getting you out of pain, loyalty will not give you your life back, think about it. 

I do not have a bolus capacity on my pump its one of the older models, however, from what I understand that feature was offered at the time of my implant but the ins company being the tight wads that they are, paid for the cheaper model. In essence I got a volkswagon instead of a cadillac,lol. Since the end of Jan. I have had I want to say 3 increases in my pump. Each time I get an increase my dr assures me that I am still on a very, very, low dose and have a very long way to go before ever maxing out my dosage with Dilaudid. She knows this is real important to me because of this fear of  what happens when I max out and its not working, where wil I go from there. Her reply was simply, we will use a combination of other drugs just like we are doing now, I have a patient right now with 7 different drugs in his pump, thats what it takes to keep this man functioning and he works every day. I have many patients on 60mg a day, for some people it takes that doseage to keep them functioning on a level that is acceptable. So, when she reminds me of this I am not scared like I was before on maxing out.

You know this fear they put in us about maxing out our dosage too soon and then not knowing what they can do for us next. That is nothing but pure ignorance on the drs part. He is the one stuck-but you are the one paying the price for his ignorance and under educated behind. He has no business handling a pump patient let alone handling CP patients. Many people think its the DEA that has these drs afraid, its not the DEA, its the drs simply do not have the knowledge and experience they need in their field.  So, when that happens its like hitting a brick wall head on. Lorie my dr that had my pump put in was this kind of dr, he had no clue on pumps but he darn sure had 45 pump patients. Listen, I was so paranoid about my pump I was afraid to even take BT meds. When, I finally broke down and took that 2mg of Dilaudid, I got better relief from tylenol. I refused any further rxs of it because it did not help why waste money.

In your case, if I was in your shoes and I had a pump that had the capacity to give me a bolus and I had some thick headed pig dr telling me he did not believe in using this feature, I would be finding another dr-end of story. Lorie, why do you think this feature was added to the newer pump models, to help people manage their chronic pain. By his refusal to allow this feature to be used thats a very big red flag waving that he has no idea what he is doing with a pump patient. I would be afraid to have this dr taking care of me because that admission on his part is as loud and clear as it needs to be that I don;t know what I am doing. I am not trying to be hard or sarcastic here, please do not think that. If I have offended you I am so sorry as that is not my intent. By the way Medtronics has come out with another device called the PTM, I believe is the name of it. The patients are buying these things up like crazy and they are on backorder from what I hear. Finding one is like looking for a needle in a haystack. Of course this is all done with the drs approval. It allows the patient to give themselves a bolus. I meant to ask you before, who programs your pump, a nurse or the dr? They may not know how to calculate your dosage using the bolus-ever thought of that one??? Rather than saying Lorie we do not know how to do this and admitting they are out of their league, its easier to harp on maxing out the dosage.  I know if I had a pump like yours and needed a bolus and had a dr tell me no, I would be looking for a new dr.

I would get myslef an appt sooner and not wait to see him. You should not be having to put up with this kind of pain. Many soft hgs coming your way. Oh, I too have 4mg of Dilaudid for BT pain and per my dr I can take 2 at one time and that works so much better than one pill.

Susie

 



bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/17/2009 9:04 PM (GMT -7)   
Hi Susie:
 
Thank you for your post, no offense taken - I know you come from a place of compassion because you have been where I am.  I wish I knew how to find a doctor like yours, or that I was in a position to fly to Texas once a month!
 
As I stated in my other posts, I have gotten contact info through my nurses from the patients whose doctors have prescribed the PTM, as well as asking my nurses which doctors are most willing to listen to them when they say that they believe a patient needs an increase, and only one took my insurance.  My home nurse called him ahead of time to tell him about me and she thought he was sympathetic and willing to be more aggressive with increases as needed, and that he would consider the PTM.
 
Thankfully, I did not sever my relationship with my existing PM before seeing this guy because he turned out to be horrible.  I saw him 3 times and he didn't give me the time of day.  My husband had to block the door of the examining room to force him to allow me to ask him a couple of questions, and when I asked him about the possibility of the PTM he said the same thing as my original PM - he did not like the idea of them and had never prescribed one for any of his patients, and didn't plan on doing it for me.
 
I reminded him that my nurses had spoken to him about this before I even made my original appt. with him, and he denied that they ever discussed the PTM, so I figured my other PM may be being difficult about the idea, but he said that he was going to a seminar on SCS's and intrathecal pumps and he would bring the subject of the PTM up to the othe doc's at the conference and see how many prescribed them for patients, and what their overall experience has been, and that if my nurses were to put some documentation together about how the patients they had that had the PTM were doing, he would at least readdress the idea at a future appt.
 
The nurse that is most proactive about trying to get the PTM for me got assigned to a different area for the last 6 months, and the nurse I got in her place kept putting the task of gathering the information the doctor wants off because the device was not available.  Originally, I was told that the reason the PTM device was unavailable was that Medtronics was redesigning it, so they stopped production until they were ready with the new design.   Now I understand that that was only partially true, they were redesigning it, but the reason it was unavailable was because they couldn't keep up with the demand for them which completely goes against what my PM has been telling me, that even though the technology is there, no doctors actually prescribe the bolus system because it is too dangerous.  Last month, the nurses were switched around again and the more proactive one is now my nurse again until she goes out on maternity leave in July.  Without me even getting the whole sentence out, she told me that getting me the PTM was her top goal of things to accomplish before she has the baby.
 
I really do appreciate your's and everyone elses support and advice.  I truly pray that somehow, someway, I will find a doctor like yours, or at the very least maybe my doctor will get more education on the pumps, thereby benifiting all of his pump patients.
 
I will let you know how I make out.
 
Tony, thank you for the "ditto" on Chart's post.  Their necks need ringing. 
 
Lorie
 
  

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 5/18/2009 5:23 PM (GMT -7)   

Hi Lorie,

I sure hope you told the nurse what a turd that dr turned out to be. Talk about being a jerk, jeesh. What is it with these guys, are they all brain dead. Yes, and now I do remember bits of the deal with your insurance and who was on your plan and who was not on the plan.

One thing I wanted t ask you is, have you contacted Medtronic and asked them to send you info on the PTM? If not, it may be worth a try getting some info out of them. I would get some numbers on the amount of them being prescribed by drs and if there are any numbers available on how well they are working for the patients. They claim we can get in touch with a rep from Medtronic and I think if I were you I would try to talk to one and get more particulars on the PTM. I would make sure I have what I need whether its me getting the info or a nurse so that when I saw the dr I would have what I needed to present my own darn case. 

I know when my pump was on the recall  over the gear problem-I called Medtronic and asked  how many pumps in that particular model that they actually found the gear to malfunction. The number was much lower than what I was expecting. When a pump is taken out it goes back to Medtronics for their team to look for malfunctions or whatever, if it has been recalled. With the info given to me by them and knowing that my pump was working properly, I felt there was no need to put myself through an unnecessay surgery and my dr agreed with my decision.

I just get real angry all over again when I read how your dr has just stuck his head in the sand. I would think that somewhere along the line he would want his patient to have some kind of a life What ever happened to the goal of reducing the pain level and get the patient at a decent functioning level. Has he ever talked to you about your functioning level?

You know Lorie, when I was with my prior dr I really thought he was the best thing that happened since sliced bread.  All of his patients really liked him you know. Even after the 1st year when I told him I thought I had made a mistake in getting the pump because my pain level had shot back up                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 



skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/18/2009 8:12 PM (GMT -7)   
Hi Lorie,

I am sorry that I didn't see your post before now. I've been having a real tough time
getting my eyes to work lately, and so I only read a few posts over the last several days.
First, let me say how sorry I am that you are hurting so badly! I am usually a consistent 7/8,
and that is certainly no fun, but I've only gotten up to a 10 several times & it was pure agony!
I cannot believe that no one was willing to help you! How horrible! Your PCP, who has been
seeing you for years should have been able to do more. He knows your pain is legit, so why
didn't he prescribe a few days worth of extra meds, to get you over the hump?! It makes me
really angry as well that you couldn't get through to your PM. One of many reasons that I left my
PM was that like your doc, he had an extensive voicemail system & he NEVER returned any phone calls,
no matter what the call was about. I never knew whether the messages got to him or not.
I had been trying to get a name of an acupuncturist from him (which he promised he'd have for me several
after my visit) for 5 weeks. No one ever returned my calls. I finally got really angry and
left a not-so-nice message on the voicemail about how RIDICULOUS it was that no one returned
my phone calls & I had been trying for 5 wks! At that point I didn't even care if they didn't
have a phone number for me, I just wanted them to acknowledge my call! I finally got a call back
after that message, but I'd had it. I just can't believe these doctors that never return phone calls,
especially when I know about the process first hand.

I hope you are feeling better now & were able to move up your appointment with your PM!

hugs,
Skeye

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/19/2009 8:48 PM (GMT -7)   
Hi Skeye:
 
Thank you for your post.  The whole situation has me very upset, because I feel like I have no options for when the pain gets that bad. 
It is always an absolute last resort for me to go to the ER or to my PCP, and every other time it has gotten that bad, I have always
been admitted to the hospital and given extra pain meds for a few days until it goes back to the usual horrible level of pain I deal with
daily. 
 
I have not tried to move my appt. up as of yet, because I am so upset over the situation, I'm afraid of what I or my husband might say.
As I said before, PM's are very hard to come by in my area, and he has been very good to me in the past.  I am trying to give him the
benefit of the doubt - maybe he never got the messages I left?  but if he didn't, somebody should answer for that!  Nobody deserves
to be ignored like this. 
 
I will update you all when I do see him.
 
Lorie
 
 
 
 
 

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 5/20/2009 5:26 AM (GMT -7)   
Hey Lorie,
I'm so sorry I haven't been around and didn't respond to you earlier! My God, what is wrong with these doctors? I just don't get it!
I hope you will be able to get the feature you talked about soon and get relief from your torture. I wish I had more advise for you,
the best would be to find someone new but as you said, there are not too many around. I just don't get the fact that with your history
of going to the ER and being admitted to control your pain that your dr. doesn't take you just as seriour as the hospital does! I'll be
praying for you to get some relief and peace!
Your friend,
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, Joseph is on the aircraft carrier USS John Stennis headed for Hawai and Pete Jr. is on The Asault Ship USS Bataan "The Jaws of the Fleet" on their way to the Middle East w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/20/2009 9:03 AM (GMT -7)   
Lorie,
i'm having difficulty reading this thread, and I just wanted you to know
that's why I haven't been posting.

I just want you to know I'm not ignoring you!
And do wish you well!

PaLady
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