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    Old 06-27-2014, 01:48 PM   #1
    Shoreline
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    Need new PM and Pump doc

    I came home yesterday and found a message on my machine. The Doc that manages my pump is leaving the practice in Aug and their is nobody else qualified to manage an intrathecal pump. They have sent my files to a doc at the local Medical college and told me I should be hearing from their office in a few weeks.

    A little background. The Director of the clinic I had been seeing left with no explanation or notice to patients back in April, so one of the other docs I have seen many times took over my case, Yesterday I came home and found that message and my wife just happened to have an apt yesterday, Talk about some big changes. She is being seen for Charcot Marie Tooth or Hand and motor sensory neuropathy as its called now. Its a disease that causes degeneration of muscle and nerve tissue in the extremities, she has had both arches collapse which led to fusions of both feet, She also has Cervical disc and bone issue with cord impingement that cause migraine like headaches along with weakness in her arms, but its hard to tell if the weakness is from the disease or the disc issues. While she was there she learned of some new policies, The doc that's leaving in aug doesn't approve of the use of soma, I have been on soma for 12 years, Never missed a pill count or UA. Not that it really matters to me since I have more than a foot out the door already.

    Apparently all fibro patients must now participate in Fibro fitness, a strengthening program at the hospital affiliate PT place. I am wondering how long anyone's insurance will continue to pay for PT once max medical benefit has been achieved.

    Anyway, back to me, I had an apt for follow up on July 21st. I will run out of Oxy, soma, and klonopin at the end of July. My pump doesn't need refilling until sept. So I fear the new doc wont see any sense of urgency in getting me in now rather than prior to my next fill in September if the guy is even in my HMO network. The place has pretty much gone to hell since a hospital chain bought the practice from my doc that left, last November. So I called and left a message with the person that left a message a my house asking about my apt on July 21st which sounds like they have cancelled from the message they left. I have had 2 heart attacks in the last 12 years which required stents. I am more than a little concerned about the prospect of going cold turkey off Klonopin, Soma and 120 mgs of Oxy a day. My BP is already tough to control due to pain levels but hey, nobody ever dies from pain. Knowing the soma is already an issue, I have started tapering that and the klonopin as their is risk of seizure stopping benzos abruptly. I'm not that worried about the Oxy as proportionately its not a huge issue to go without compared to what my pump delivers. I have skipped days, some days I take 30 mgs, some days I take 120mgs, some day I don't take any BT med. I have never felt any sign of withdrawal on days I don't take BT meds as I have only used them for true BT pain over the past 12 years.

    The moral of the story is, Nobody is safe from being left without a doc and this is screwed up, I haven't done anything wrong, every pill count and UA has been spot on for over a decade, my issues are more than documented and evident in any manner of diagnostic and yet here I am in limbo not knowing if I will have a doc to prevent withdrawal from 12 years of klonopin and soma use. Fortunately I only take .5 QID for restless leg and often forget to take all 4 doses. I can cut that in half with minimal discomfort and cut the soma in half with moderate discomfort but my heart history makes withdrawal a little more concerning.

    This is BS, I'm feeling like a mushroom,. fed a load of S%$# and kept in the dark until some new doc decides whether he is comfortable continuing what has worked for years and has proven effective in returning some degree of my life. I exercise 4-5 times a week, I work part time 2-3 days a week, I do all the cooking, cleaning and shopping and this may come to a screeching halt if the new doc decides to play with my dose or adjunct meds. I was bed ridden for a year after my last surgery and even on orals I was pretty sedentary and still homebound. Couldn't stand or walk for more than 10 minutes without sweat dripping from my nose. I really have no desire to return to that so some doc can proudly say he got another addict pain patient off opiates or whatever med they intend to stop. Starting over with some needle jockey when their isn't anything new to try or anywhere new to inject. Looking for new nerve tissue to destroy or ablate has no appeal to me at this point in treatment. I've truly seen it and done it all when it comes to needles, blocks, relaxation techniques, 30 day PT/work hardening programs and more surgery to manage the mess 3 failed fusion attempts has caused. I started this 5 hours ago and still haven't heard from the nice lady that told me to call if I have any questions. smh
    Thanks for letting me vent. Ill let yall know what I find out if they return my call regarding my July apt.
    For those just starting, think twice before you put your trust and life in a docs hands that may or may not be around to continue long term treatment regardless of how compliant and how much evidence their is of your condition.
    Take care, Dave

     
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    Old 06-27-2014, 02:45 PM   #2
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    Re: Need new PM and Pump doc

    Hi I'm so sorry this is happening. There's probably a couple I may try. Contact some of the pain mgt associations and call your hmo and ask tell them what is going on. They will probably give a couple names of pm drs in your area. I hope this helps. Cathy

    Last edited by noevr; 06-29-2014 at 07:20 PM.

     
    Old 06-27-2014, 03:52 PM   #3
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    Re: Need new PM and Pump doc

    Hi shoreline, I hope that everything works out whether a new dr or one at current clinic so that you & your wife can continue pain treatment without incident, or lapses. I understand, i do because i have been in pain mgmt since before the specialty of pain mgmt started really, have had the same pm dr for 14 years & have a history of very severe intractable pain but i can function as an almost "normal" person because my pain has been controlled for years. A huge part of my history is the dr who has been there through it all, the ideas,diagnoses,tests, med changes, advances in pm, triumphs,trials, successes & failures, my dr & i have a "shared" history built upon decades of trust, learning together what works & what doesnt & i realize what a blessing it is to have my dr & what huge deal it is to have to change drs & i am so very sorry that you are facing this at this time. My dr is over 65 & it scares me to the core even thinking about a change but ive thought about it alot & i think the most important traits i would look for in a new dr is of course a brilliant, intelligent dr, an incredibly good listener, an awesome memory & even though the history with my dr or what i have been through cant be replicated i think that if the new dr was hopefully a really really good dr he could learn about my history by studying my medical records & if he or she really listened well & believed what he heard it could be possible to find a new pm dr because all the" leg work" has been done already by my current dr, but basically all of these traits on my list can be found if the dr is caring & that is my prayer for you, a caring dr.

     
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    Old 06-28-2014, 12:30 AM   #4
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    Re: Need new PM and Pump doc

    Like pain is not enough to deal with.I am so sorry Dave. We get some decent pain relief and get to live as best we can but always worry in the back of our minds what if I lose my doctor! I can't think of another condition where any patient would have to go home and worry their dr will die! I had my pump refilled today and my dr told me that Humana is accepting no new pain mgmt. since my dr left to go into business on his own.He basically moved across the street. I have hmo so will probably get what dr they give me.I take Neurontin but no other pills. I was scared but I may just leave Humana at the beginning of the year and get insurance that will cover my dr. I love my pain dr as I have had an idiot pain dr(my first one) . This first pain dr nearly killed me Not taking pain pills will probably make it smoother for me but this is scary stuff.I could not live,nor want to,without my pain being cared for. Try and hang in and think positive.We know good drs are out there but it bites when you have a great one and are forced to change.Prayers for you and yours,my friend. You'll be ok! Tom

    Last edited by tuloud54; 06-28-2014 at 12:37 AM.

     
    Old 06-29-2014, 07:18 PM   #5
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    Re: Need new PM and Pump doc

    Thank you very much for sharing your story. I'm in a similar situation, only over a much shorter period of time. I guess than it's alot different after all. Haha. Well, my Dr. of 2 and a half years just moved to Tucson to start up his own practice, and I just stayed on to see whoever took his place. I just met her Thursday and she does seem nice enough, but doesn't know a thing about me. THAT'S the big part that saddens me. IT is a kind of relationship that we establish with our PM Dr. I've been on Fentanyl for 18 months now, and right off, she switched me back to Oxy Contin's. I cannot get them yet, because my insurance won't cover them until they jump through all their hoops. In the meantime, I'm stuck. Just worrying, and starting to feel like im withdrawing. Probably a little of both. Tomorrow is monday morning, and the weekend's over so I'm starting to feel hopeful that something will work out within the next couple days. The "not knowing" is the worst feeling ever! Thank you for sharing all that you do, it sure helps me learn alot more!

     
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    Old 07-03-2014, 06:50 AM   #6
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    Re: Need new PM and Pump doc

    Shoreline,
    just read about your MD news. I felt sick for you .All of us live under an that awfull
    (what if?) it means our entire painmanagment!I just know that with you being very compliant in years,that Dr. will be found.
    thoughts prayers,let us know,please.
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    Old 07-03-2014, 11:28 AM   #7
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    Re: Need new PM and Pump doc

    I finally got some info, Its a shame I had to call my home health care nurse who does the actual refills, she called the practice and got some answers. I am supposed to keep the apt I have on the 21st unless the new doc can see me prior to that. It turns out he is not in my network but he is willing to accept me as a patient. Now whether or not my insurance will pay is a totally different issue. I may have to pay cash out of pocket for the office apts, i am hoping threy will continue to use the home health agency for refills at that costs me nothing out of pocket. They make so much on the insurance just for being available 24/7 theuy are happy to write off my portion. Ths helps me hit my max out of pocket every year around august. I wont really know for sure untill I meet this doc and see how things go. Like everyone, the biggest issue is the relationship I have built over the last 13 years with my old docs and practcie, I even like my NP but if they transfer my pump service over to the new guy he will handle everything, all orals and adjunct meds. Who knows how he feels about BT, Soma or any other med I take. Still feeling like mushroom but at least I have a little more info than I did from a message left on my machine i couldnt get returned.
    I just had to change PCP because he closed his practice, fortuately I was able to go back to a doc i had seen up until a few years ago when they stopped taking my insurnace. He wasn't too confident I would find anyone else in this area that manages pain pumps. There are plenty of docs that manage baclofen for MS patients but dont use opiates in the pumps. Crazy Crazy. It is amazing how quickly i can go back to that dark place when things start looking bad. I guess I have been spoiled the last 13 years and had a false sense of security. I do appreciate the support, Take care, Dave

     
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    Old 07-03-2014, 12:26 PM   #8
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    Re: Need new PM and Pump doc

    Hang in there Dave!

    Its always a stressful time when changing docs...esp PM docs.Having a relationship for 13yrs takes a long time to build.But at least you have some answers and its a first step in the right direction,and hopefully the transition will be fast and smooth

    You're a great member and have helped me so many times with your honest and accurate posts.

    Although I cant offer much more in the way of advice....we are here for each other on this forum

    Ferd

     
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    Old 07-22-2014, 09:26 AM   #9
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    Re: Need new PM and Pump doc

    Morning, Curious how your search for a new doctor has gone.I was blessed to find one at the last minute. It is scary to have to be worried that your dr is not available. I can't think of any other medical specialty that is not easily replaced! I live in a populated area so have better chances! All the best my friend.I pray this has worked out for you. God Speed. Tom

    Last edited by mod85; 07-23-2014 at 07:39 AM.

     
    Old 07-25-2014, 09:41 AM   #10
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    Re: Need new PM and Pump doc

    I did finally get in to see th new doc, Its at the local medical school department of physical and rehab medicine. Saw the person that ran that 14 years ago and she was pushing acupuncture at the time, She was decent enough to say since I have tried it and I was still a wreck she would refer me to a program she knew used meds. I cant help but wonder when EVMS will change its treatment protocol for pain management, I've seen them go from No opiates to managing my pump for now. Apparently there are so few docs certified these day its tough to find one, Im hoping my insurance will make an exception as I have compared lists and nobody on my provider list is listed by medtronics and I have been told nobody on Humanas list does pumps by a couple different providors. They have made the exception for a couple people presently seeing this group of docs. So that is a good sign.

    The apt was odd, My BP and pulse were sky high, part was rushing to get downtown, find parking and walking a campus and the rest stress of seeing a new doc that can make or brake me with his decision. Kinda scary. Anyway, he will continue to manage pump, leaving it alone for now as its working well. He doesn't prescribe soma so he will begin weaning next month and trying something else again, don't think their is anything new I haven't tried byt we will see., I already started tapering soma and klonopin with so much uncertainty going on.. He said he thought the 2 mgs of Klonopn a day I take for wrestles leg is too high and suggested I get my GP to write that. Funny I never considered 2 mgs of klonopin to be high, but I am comfortably at 1.5 now and will just try to DC it entirely in steps. If I can go without it then why take it.

    Interesting things were they did a DNA swab that is supposed to give them info on how I metabolize medications, thought that was pretty high tech. They also gave me the literature for a narcan/naloxone auto injector much like a B sting kit. Only its for accidental OD. Every patient will be getting one next month. Thought that was odd, kinda tech but I can see where things have happened in the past and they are covering their back side., Just recently my brother was telling me they are giving these to all first responders in his state. Cops, firemen. EMTs will have ready access to Narcan. Guess that's good for the addicts. Pretty sad things have gotten so bad OD wise that it is necessary.

    So leaving pump and BT the same, the rest is up in the air and im trying to taper at my pace rather than wait for his plan. Im comfy at 3/4 on those 2 meds now, next step is 3 to 2 a day I guess. Klonopin should be OK every 12, Im just curious about Soma, Anyone ever DC soma, what is it like. Ive been taking it 4 times a day for 12 years, been at 3 a day for 3 weeks now, what am in for? I definitely do feel stiffer taking less of those. Hopefully something will replace it well enough

    Take care, Dave

     
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    Old 07-25-2014, 04:20 PM   #11
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    Re: Need new PM and Pump doc

    Quote:
    Originally Posted by Shoreline View Post
    I did finally get in to see th new doc, Its at the local medical school department of physical and rehab medicine. Saw the person that ran that 14 years ago and she was pushing acupuncture at the time, She was decent enough to say since I have tried it and I was still a wreck she would refer me to a program she knew used meds. I cant help but wonder when EVMS will change its treatment protocol for pain management, I've seen them go from No opiates to managing my pump for now. Apparently there are so few docs certified these day its tough to find one, Im hoping my insurance will make an exception as I have compared lists and nobody on my provider list is listed by medtronics and I have been told nobody on Humanas list does pumps by a couple different providors. They have made the exception for a couple people presently seeing this group of docs. So that is a good sign.

    The apt was odd, My BP and pulse were sky high, part was rushing to get downtown, find parking and walking a campus and the rest stress of seeing a new doc that can make or brake me with his decision. Kinda scary. Anyway, he will continue to manage pump, leaving it alone for now as its working well. He doesn't prescribe soma so he will begin weaning next month and trying something else again, don't think their is anything new I haven't tried byt we will see., I already started tapering soma and klonopin with so much uncertainty going on.. He said he thought the 2 mgs of Klonopn a day I take for wrestles leg is too high and suggested I get my GP to write that. Funny I never considered 2 mgs of klonopin to be high, but I am comfortably at 1.5 now and will just try to DC it entirely in steps. If I can go without it then why take it.

    Interesting things were they did a DNA swab that is supposed to give them info on how I metabolize medications, thought that was pretty high tech. They also gave me the literature for a narcan/naloxone auto injector much like a B sting kit. Only its for accidental OD. Every patient will be getting one next month. Thought that was odd, kinda tech but I can see where things have happened in the past and they are covering their back side., Just recently my brother was telling me they are giving these to all first responders in his state. Cops, firemen. EMTs will have ready access to Narcan. Guess that's good for the addicts. Pretty sad things have gotten so bad OD wise that it is necessary.

    So leaving pump and BT the same, the rest is up in the air and im trying to taper at my pace rather than wait for his plan. Im comfy at 3/4 on those 2 meds now, next step is 3 to 2 a day I guess. Klonopin should be OK every 12, Im just curious about Soma, Anyone ever DC soma, what is it like. Ive been taking it 4 times a day for 12 years, been at 3 a day for 3 weeks now, what am in for? I definitely do feel stiffer taking less of those. Hopefully something will replace it well enough

    Take care, Dave
    Good news! Not great that you even have to consider changing what works. I never even thought about how my pump would be maintained. They don't mention that when putting it in! Hopefully there will always be one doctor available for us? Do not appreciate that we even have another thing to worry about,in the back of our minds. Pray things continue to go well for you. Sorry, but I have no Soma experience to offer. God bless you and yours! Tom

     
    Old 07-25-2014, 05:26 PM   #12
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    Re: Need new PM and Pump doc

    Glad that some of your worries could be alleviated. Bummer about the Soma & Klonopin. Maybe your primary doc could take over both? Mine is fine with taking over any meds that were initially prescribed by a specialist.

    I too have had that DNA swab done. Interesting stuff, but it didn't change my treatment plan (or for anyone else in my pain doctor's practice he did it for).

    I had heard about the auto injector but wouldn't have thought it would be recommended for a pain patient? I can see your point about it protecting them. Are they giving you a prescription for it or actually providing it for free? Best wishes.
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    Old 07-26-2014, 11:40 AM   #13
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    Re: Need new PM and Pump doc

    Hi dave, When my pm&r dr & is also my pm dr went to full time rehab hospitalist i went to a pm/anes pm dr & bc i was so concerned about having my pain meds prescribed as first priority i never mentioned the soma, so had none. He lowered all my pain meds & i did just ok, barely surviving really so if i went through any type of withdrawal from no soma all i noticed was increased pain. Later as you may recall my dr took me as pain patient because this new dr wouldnt continue to prescribe unless i got esi's, scs or pump. It didnt matter to him which one just any big ticket item would do & all invasive spine procedures are contraindicated with arach diagnosis. I now only take soma as needed for muscle spasms & it remains the only med that works though I have been prescribed zanaflex, parafon forte, baclofen, flexeril & all of them either make me sleepy, stiff or dont work at all. I started having hi bp & pounding heartbeat 24/7 & cardiologist said im having autonomic response fight or flight because arach trashed sympathetic nervous system & consequence of pain too & so he prescribed beta blocker atenolol & xanax 0.5 mg bid which i also just take prn & relieves pounding but it does help my muscle spasms too. I hope that your drs, pcp &/ or this new dr, will not want to fool around with what is working well for you & will not dare take a chance on risking intractable pain & its consequences again & will make exceptions for a patient that is exceptional by documentation & history & in time, hopefully extremely short, will see that the treatment plan that you have been on has been working great even enabling you to work!

    Last edited by gmak; 07-26-2014 at 12:08 PM.

     
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