Change Doctors? Long and emotional post

My advice

by Gemita - 2021-01-26 17:11:31

HeartU,

Reading your post quickly tells me that your first priority is your complex hand nerve pain and restricted movement issues.  The sooner therapy is started the better your chances of a full recovery.  Delay this and you could be looking at some disability.  I have these complex nerve issues and the window for treating successfully is very narrow indeed.  You need help now.  

I believe you have lost confidence and trust in your doctors and that a second opinion is needed, but you sound in good shape from a cardiac point of view and I too wouldn't want any further meds.  You may wish to stay where you are while you get urgent physical therapy/nerve treatment and then deal with the cardiac matter.  This is what I would do.

Thank you Gemita!

by heartu - 2021-01-26 17:18:45

Yes, I had 16+ weeks of Physical Therapy last year which helped me greatly with my arm mobility from my shoulder down to my hand, but it was so difficult to get PT because of the closures here from the end of March thru the end of June. Practices were only slowly opening up in July and many were not accepting new patients. This time I specifically asked for hand therapy because here where I am it has to be specified on a medical referral form instead of just physical therapy. Many physical therapy places will say they handle the hand, but it was not enough for me - they did not focus as much on my hand as they did on my shoulder. Shoulder is all fine, now the forearm and hand. 

Association in time does NOT equal causative connection

by crustyg - 2021-01-26 17:21:22

Just because you notice a new symptom around or immediately after a procedure doesn't necessarily mean that the two were connected - or even that one caused the other.  The Romans (who knew a thing or two about the world) had a cautionary saying: Post hoc, ergo propter hoc: roughly translated as 'After the event, therefore because of the event' - as a warning not to assume a connection simply because of a coincidence in time.

In medicine, we always try to apply Occam's razor and look for the simplest explanation that fits all of the facts - a Unifying Diagnosis.  But as docs look at older patients (and you and I are *not* old, we're only young Seniors), the chances of there being two, separate disease processes becomes much higher as things wear out.

There *is* a possibility of irritating or damaging the brachial plexus when first implanting pacing leads, but you have to put the sheath in really laterally to do this - axillary vein and not the more usual subclavian, and your leads went in 10years ago.  They will almost certainly have used the same venous access for the third, CRT-lead..  Almost impossible to prove without MRI+EMG studies and still not easy.  Much more common is a cervical spine nerve root entrapment from disc degeneration - simply a 'slipped disc' in the neck.  I'm a little surprised that you haven't had a cervical spine MRI, but perhaps your symptoms don't fit a radiculopathy and something more like glove-and-stocking neuropathy is closer to what you have.  And some nerve damage *can* repair over time, especially ones caused by prolonged compression.

Lisinopril is *not* a brand name for a beta-blocker like metoprolol, it's an ACE-inhibitor to lower BP.

I predict that you will have as many problems with any new/different docs as you have at the moment.  You don't trust them, you don't listen to them and you know better than they do.

Good luck.

? Sympathetic nerve pain - complex regional pain syndrome (CRPS)

by Gemita - 2021-01-26 17:34:45

HeartU, 

I would ask your doctors to perhaps look for Complex Regional Pain Syndrome as a possible cause for your symptoms?  Often missed and overlooked but becoming common following a surgical procedure.  This is what I have and can follow trauma of any kind, however minimal.  Symptoms can be totally out of proportion to the original trauma.  I was given several months of hand therapy in hospital but still cannot completely bend my fingers (right hand) and have some permanent disability with fine movements.  I was given a nerve injection to allow me to push through my exercises.  I will try to find the special tests I had to diagnose the syndrome, although clearly my orthopaedic team quickly diagnosed on physical examination alone,

Update I had a 3-phase bone scan which confirmed CRPS.  I am not suggesting this is your problem HeartU but might be worth discussing with your orthopaedic team as a possible reason for your delayed healing due to nerve damage.  I have healed well by the way and please don't Google CRPS it sounds awful !!  But it doesn't always progress and can be stopped with effective pain med treatment.  I was put on neuropathic low dose Lyrica (Pregabalin) which effectively helped me work through my exercises.  I wish I could give you the gloves they made for me to help bend my fingers.  Wonderful invention.  The hand therapy class was gruelling but what a difference it made to the outcome.  I play the piano (badly now) but who cares.  I still enjoy it and I never imagined I would be able to get back to it, so have hope.  You will be fine and then you can sort your doctors out

Crustyg - way to make me feel worse than I already do.

by heartu - 2021-01-26 17:37:41

I was somehow expected a more gentler and kinder response. This has just made me feel much worse than I already do. And my orthopedist would disagree with you. He thinks my brachial plexus was affected. 3 nerves affected - musculataneous, ulnar, and median.

And definitely my mistake as Lopressor is the same as metoprolol, not lisinopril. Except for metoprolol which I have taken for just over a year, I have never had to take any meds longterm and am not well versed on all the "lols and ils".

Some further thoughts

by Gemita - 2021-01-26 20:19:07

HeartU

My EP is both a good EP and Cardiologist and many EPs are, so why do you need both?   It would certainly make managing your condition easier to have one treating doctor without conflicting viewpoints.  You could consider staying with your present EP and dropping the Cardiologist, or finding a new EP/Cardiologist within a new practice.  

By the way a BP of 140/80 is hardly a dangerous BP reading needing treatment and in any event your doctors should get you to take three readings a day over a period of one week to see if your BP really needs treating.  Linsinopril (Ace Inhibitor) seems overkill if you are otherwise healthy, although they use it for heart failure too I see.  Hubby couldn’t tolerate it by the way, nor the alternative Losartan an ARB (Angiotensin Receptor Blocker).  He is doing better on Bisoprolol (a beta blocker).  If your BP needs treating maybe ask about increasing your present beta blocker rather than introducing new meds.

I can understand the emotional trauma you are going through but I am confident it will get better. Take one step at a time and prioritise your treatment.  In my humble opinion the priority now is to get those fingers moving before permanent disability sets in.  Your heart seems stable at the moment and even your EP was happy with your progress.  I wish you the very best 

Your trying to change the wrong doc, try a different ortho

by jds66 - 2021-01-26 20:43:00

Well, you did well getting that third lead put in, it probably is saving your life at this point, so good to hear the EF is going up. 

There is no way any doctor is going to make an guess on if your shoulder pain has anything to do with the third lead. They arent going to open themselves up to that line of questioning, and any other doctor you go to, esp another EP or Cardiologist is not going to even take a guess. 

I personally have 2 EP's that I see. I have no use for a regular cardiologist. What is the point of  one when I have an electrical system issue with my heart and they are the electrical system specialist. 

I use both for different things, both have very different bedside manners, but they give me generally the same feedback. I like one more than the other, but one is more technically skilled the other has better human to human conversation skills. They both serve a purpose. 

No one can force you to take meds. Prescribe away, but no one but you is taking them. So, if you feel you need a cardiologist, then simply ignore what the prescribe you. Your choice. If you feel  your BP is fine, then the risk is yours if it really isnt. 

I would move your mind off of trying to find a doctor to blame for the nerve damage. Unless you go to some high powered lawyers, and even if they would take the case, is that going to help you get better?

I had a nerve issue in my neck two summers ago, and slowly, and steadily, it went away. Made my whole right arm useless from the elbow down. But, it came back. When to the orthopaedist, said basically will take time. 

I would research exercise and rehab you can do on your own. And, whatever rehab you can do at a rehab place. 

But as you already know,  your spinning your wheels and not getting anywhere. Changing docs probably wont do anything for you, unless you want to try another orthopaedist, that is the only doc I would want you to try for a second opinion. Your heart is doing well, your focus and energy is not helping you, and that is why you wrote here, for opinions. 

Lisinopril and Metoprolol

by AgentX86 - 2021-01-27 00:00:07

I've been on metoprolol (a beta blocker) for 14 years in different doses (from my curren 50mg per day to 200mg about ten years ago).  I've also been on Lisinopril (an ACE inhibitor), until it almost paralyzed my left shoulder and arm (and was starting on the right).  It's one of the four drugs on my record so that I don't come near it again.  I'm taking a pile of pills for all sorts of things (15AM and 5PM, though a few are vitamins, iron, and somere are duplicates because of dosage and availability.  At least eight of them are prescription drugs.  Getting old isn't for sissies but it does beat the alternative.

I have both an EP and cardiologist because I have both plumbing and electrical problems.  My EP is at a major teaching university and my cardiologist is local so it's easier to see my cardiologist.  Once the electrical stuff is stable the EP isn't needed so much.  The two talk to each other (work for the same hospital system) so it works very well.  I really like both of them and both know both my wife and I by name.

If I had your neuropathy problem, I'd see a neurosurgeon first and a orthopedic surgeon next.  SInce you've seen the later, and assume that you trust his judgement, a physical therapist sounds like the next step.  Don't rule out a spinal problem, though.

Moving foward

by crustyg - 2021-01-27 07:02:43

Hi Heartu: please do re-read what I had posted before.  I specifically did NOT say that your nerve problems couldn't be caused by something affecting the brachial plexus, I said that it was very unlikely.

As a thought experiment, let's assume that you and your ortho/PT are 100% convinced that the main cause of the L-arm is brachial plexus irritation/damage.  What to do?  It depends on what *sort* of damage might have been done.  Pacing lead irritating the brachial plexus => someone will have to move the lead.   There is no alternative. So that's between you and your EP-doc.  And (s)he is going to need a lot of convincing that a) a pacing lead is affecting the brachial plexus, b) that it's the new lead that's causing the issue.  Getting a CRT lead into the coronary sinus is really fiddly work, and no EP-doc is going to rush to remove and replace this.  I don't think it's possible to replace this lead without removing it from the heart - there's a (relatively) huge connector at the PM end, and it would be very destructive to dissect this lead out of the brachial plexus tiger country (lots of nerves, easily damaged, very delicate) and move it more medially and then re-attach it to your CRT-D box.

Still in our thought experiment: it's much worse, your brachial plexus has been damaged during lead insertion => it's very unlikely to get better.  Ever.  The neurons have died.  The good thing is that you *do* seem to be seeing some improvement, which makes it much more likely that the damage is further downstream than the brachial plexus, or that you're lucky and the damage is slowly repairing.  In which case you're in for the long haul.  All you can do is focus on the goal - getting as much function as you can, and it's your effort and will-power (assisted by your PT and ortho) that matters.  And wondering what caused it probably isn't helpful.  If you have/had B12 or Folate deficiency it's extremely unlikely that only one arm would have been affected - not impossible though.

If you're interested, I've been through *exactly* the same (heart + L-arm nerve pain+parasthesiae) but in a much more mild fashion, and it turned out to be other pathologies at the same time.  I was *just* as upset, but as my therapist reminds me, Anger only burns yourself.

And although your daily life is most obviously impacted by your L-arm problem, actually your reduced %LVEF is the real threat and you've got the CRT-D - I hope that this improves things for you soon.

Finding you way

by Gotrhythm - 2021-01-27 18:22:12

I'm kind of late to the party here, but I'd like to go back to the initial question: what to do when two doctors in the same practice are giving contradictory advice.

I found my self in the same boat early in pacemaker journey, with yes, the practice saying I had to see both a cardologist and an EP although both were in the same practice. It made no sense to me then and it doesn't now. I wasn't forced to choose which one I would listen to, instead, I found myself being hot-potatoed between them. "No, there's no disease, must be the pacemaker--or insanity" "No, not the pacemaker, must be disease--or insanity" ( By the way, I went to Duke. The problem was pacemaker mediated tachycardia. Insanity was not brought up.)

In your case, I think a letter detailing what you have been told and by whom, with copies to both doctors, AND the practice manager, is in order. Suggest they have a meeting and get back to you with one coordinated treatment plan, lest you lose faith in the practice altogether.

Re: arm nerve issues. I had those too, although there's little doubt the cause was a fall in which my shoulder was injured and my wrist broken, which occured 5 months post pacemaker. Once the cast was off, I went for two rounds of physical therapy which were only marinally successful in relieving my constant pain and difficulty moving my fingers. The orthopedist who did the surgery could only shrug. Ultimately I saw a DO, who diagnosed a pinched nerve. He recommended surgery as the only option.

I see that you have had an EMG so you know there are nerve issues. I suggest you ask for a referral to a hand surgeon specialist--that's who can actually do surgery on the hand and arm for nerve issues. (But also do your homework. You want a good hand surgeon.)

Even if the problem was caused by the pacemaker implantation, it's done now. The EP can't do anything to help. EP's don't do arms. But there is a finite window of opportunity beyond which the damage can't be undone, so don't mess around.

I ultimately solved the EP/cardiologist problem by going to Duke where both are taken care of in the person of one doctor. It means a 60 minute trip one way, but getting the care I need trumps convenience.

I understand how frustrated you are. Been there. I even had the blood pressure discrepancy thing! But take my word for it, arguing with doctors never works. In my experience, if you're not being helped by whomever you're seeing, for whatever reason, move on.

EP & Cardiologist

by Shykin365@gmail.com - 2021-01-29 11:42:06

I guess I'm lucky. My EP & Cardiologist  work together. I took 300mg of metoprolol and 800mg of amiodorone a day for 13 months. 2 dc cardioversion, an ablation,  left & right heart cath and pm implant and I am off all but a couple of meds. I have a good set of doctors. All I can say is keep trying to find good doctors and you will probably feel much better.

Drugs and ablation

by AgentX86 - 2021-01-30 00:01:51

That's a metric boatload of metoprolol and amioderone.  I'd never allow my doctors to prescribe that much!  ...and certainly not for that long or at your age.  Amioderone is extremely toxic in much lower doses than that.  My EP would only let me stay on it for six months at a time, in about a quarter of that dose, and even then it damaged my thyroid (not uncommon at all).  While, as long as your heart rate doesn't go too low, that much metoprolol probably isn't dangerous but it's enough to make Taz tired.

You're also luck that you're one-and-done with an ablation, too.  Only about 60% of ablation patients are.  Complicated arrhythmias are rarely one-and-done, even with the best EPs in the country.

Were I you, I'd be playing the lottery.  ;-)

EPs and Cardiologists

by Marybird - 2021-01-30 18:31:46

Not that they both aren't cardiologists, but I'd go bonkers trying to juggle conflicting instructions from two or more doctors that I was seeing.

My regular cardiologist, who'd been treating my arrhythmias/hypertension for several years, took a back seat after I began seeing the EP in the same practice. I'm pretty sure he disagreed with some of the medication prescribed to me by the EP, but he didn't say anything about it.

At my last visit with this guy, he saw that I had scheduled appointments with the new EP in the practice ( the first guy I saw left), my issues were addressed, and since I had no cardiac plumbing issues he said I didn't need any further appointments with him. I commented that this would be fine, hopefully the new EP wouldn't decide to leave within a year or so. To that, the cardiologist responded " well then you'll be stuck with me", and put down followup as PRN.

Fast forward another 9-10 months or so, and I got a letter from a cardiac monitoring company that they, in partnership with my doctor at this practice ( they didn't say who that was) would be remote monitoring my pacemaker at home. Then within a four month period, I got two phone calls from the regular cardiologist's office, both times saying they had received alerts from my pacemaker ( first time excessive automatic mode switching, not sure about the second alert, the caller said it was "tachycardia related" or something), but instructions both times to increase the metoprolol I take. I'm up to 150mg/day on that now, but it does help control the tachycardias. They also included further instructions to cut back on some of the other hypertension medication I take to accomodate the increased metoprolol.  

So I see now that their new EP has also left the practice, and it sure looks to me as though my regular cardiologist has stepped back in to manage my tachy/whatever issues. He had informed me last year that he preferred not to manage the pacemaker, but I'd think that getting completed reports from remote pacemaker monitoring data from the monitoring company might make that job a bit easier. I don't need any adjustments at this point, and don't think I need a new EP at this point either. I have an appointment next week with the cardiologist- actually the PA who I like very much and who works closely with the cardiologist, so maybe I can see what the heck is going on and where we go from here.