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First Name
Maxine

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Strawberry

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AZ

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Posts (26)

Thu, Sep 19 10:37am · Why Mayo Cardiology refuses to "clear" an MRI outside of Mayo in Parkinson's Disease

Thank you, Ginger. I agree, in part. The mind-boggling parts of this for us are: 1.We had no warning – not at the time of the pacemaker implant. All the risks and legal disclosures….we were never told that although this device was "MRI compatible," Mayo would decline to sign-off for another MRI center; and 2. Barrows MRI assures me that not only is the form a standard form, a standard practice, but that this is the FIRST flat refusal they have received from any medical group. Sometimes there is reluctance, she said, and sometimes there is delay – but the doctors sign. We'll see how this plays out. It might indeed be an outcome he cannot live with. Literally.

Wed, Sep 18 10:22pm · Why Mayo Cardiology refuses to "clear" an MRI outside of Mayo in Parkinson's Disease

Thank you, Colleen! I am glad to have the Office of Patient Experience info. I will be reaching out to them, however this plays out. After posting earlier, after I sent a message to Walt's Mayo cardiologist, I received a call from the head of the Mayo Pacemaker Clinic – I think my message on the Patient Portal had been routed to her. She wanted to make sure I "and the person from Barrows who had repeatedly called" understood the reason the form we needed would not be signed off on. She said the form asks for recommended settings for the pacemaker during the MRI, and that Mayo could not complete the form because they would not be at the MRI site or appt, and could not be responsible. I asked her for a copy of the form, which she said she did not have. I asked her if she was sure the form asked for settings, but she said she was not sure. Speaking to Barrow's again, I confirmed that the form is a standard form; it does ask for the recommended settings; and despite the fact that some doctors are reluctant, and that sometimes there is some delay – this is the first time she has ever received, from a specific medical group, a flat refusal to complete and sign the form. I then contacted the Pacemaker Clinic again and left a message that I wanted my Portal Message re-routed to the doctor, and that I expected a response. Inn the meantime, Barrow's called me back to tell me they were trying to arrange a short notice cardiology appointment there. Thank you for your suggestions. I will keep you posted….

Wed, Sep 18 10:02pm · Why Mayo Cardiology refuses to "clear" an MRI outside of Mayo in Parkinson's Disease

Thank you – I am so glad Mayo is working well with you. I have generally been pleased with them.
I really do not know what's going on with our issue. The MRI Nurse at Barrows tells me that although doctors sometimes are resistant, and sometimes delay signing off, this is the first flat refusal she has seen. I am hoping it is a misunderstanding of some sort, and am still trying to get a response from the cardiologist himself. In the meantime, Barrows is working to try and arrange a short notice appointment with a cardiologist.

Wed, Sep 18 5:26pm · Why Mayo Cardiology refuses to "clear" an MRI outside of Mayo in Parkinson's Disease

I’m going to post this in a few different groups – in case it rings familiar to anyone else. My husband, Walt, complained to his Mayo cardiologist about shortness of breath upon exertion. He had cardiac workups and pulmonary testing, and because he has a slow heart rate (his whole life), they thought a pacemaker to make sure his heart rate increased with exertion, would help. He had a pacemaker implanted at Mayo in August 2018. Honestly – it hasn’t made any difference in his shortness of breath. None at all, and as far as we know, the only thing the pacemaker has done is ensure that his heart rate does not drop below 60 bpm. Walt has Parkinson’s Disease, and was scheduled for Deep Brain Stimulation (DBS) surgery at Mayo, to take place a few weeks after his pacemaker. MRIs are essential for DBS – and because of this, I spent a long time insisting on confirmation that the pacemaker Mayo was putting in him would be MRI compatible. It is. His DBS surgery was successful, and his Parkinson’s symptoms were greatly reduced. Unfortunately – long story short – Walt’s DBS system, (consisting of electrodes placed in his brain, wires from the electrodes snaking their way across his skull and down his neck, and a “battery pack/controller device under his collar bone like a pacemaker), all had to be removed by the Mayo neurosurgeon in March 2019, when a wire coming from his brain broke through the skin on his head, and was exposed. We have subsequently scheduled another DBS surgery at Barrow’s, Brain and Spine Center. Everything is in place for the surgery – except for one thing. Mayo cardiology gave him cardiac clearance, but will NOT give him a standard signed form clearing his pacemaker for MRI. The form must be completed and signed by Walt’s cardiologist of record, and sent to Barrow’s. Since the pacemaker is monitored remotely and transmissions are evaluated by doctors in the Mayo system; and since there have been no issues with the pacemaker, which is MRI compatible, the cardiologist at MAyo should be able to clear the pacemaker for MRI. They refuse to do so – Mayo says it will not accept liability for the acceptability of an MRI outside of the Mayo system. Barrows’ Patient Care Coordinator tells me that if Mayo will not sign off on it, we need to find another cardiologist to do an evaluation of the pacemaker – either remotely or by wanding him in the office, thus becoming Walt’s cardiologist of record. If we need to do that, there is no way Walt will be able to meet the timelines for his surgery, scheduled 10/2. WTH????? I guess Mayo wants to keep Walt’s business in-house? I feel like his pacemaker is being held hostage. I am furious – this is me venting. Has anyone else ever had to deal with this? Thanks, Maxine

Thu, Jun 20 5:27pm · Deep Brain Stimulation (DBS) in Parkinson's Disease

Hello again, @leftylucy. Walt was originally diagnosed at Barrow's by his neurologist there, Dr. Abraham Lieberman who was Muhammed Ali's neurologist. Dr. Lieberman treated Walt for a few years, and then we switched to Mayo at the urging of our daughter, who was a nurse at Mayo. He did, indeed, receive great care at Barrow's, but Walt's diagnosis was so new and upsetting to us, that we made the change to another world-renowned medical institution. Dr. Ponce was recommended to us by a couple who run the only local Parkinson's support group in our area when we attended a meeting recently about DBS, after Walt's system was removed. Dr Ponce had done the husband's DBS surgery several years ago, and they are crazy about him. During an appointment they had with Dr. Ponce, they told him about Walt's situation, and Dr Ponce asked us to send him a referral from our neurologist, and some records. We did, and he reviewed them and then had us scheduled with the neurologist we saw at Barrow's. I don't know which system will be used – I'm not aware of the advantage of one over the other. Which Mayo are you going to? I know the Rochester Mayo accepts Medicare assignment – but for some reason, Arizona does not have a contract with Medicare. Hence, if you have the original Medicare (we do) rather than one of the Advantage Plans, they accept the contract amount + 15%. We do also have a supplementary policy. They do not, of course, cover the 15%. Also – Because the surgery was done awake, those surgeries were considered outpatient – they did not keep Walt overnight – and coverage was Part B rather than Part A. I think. I am so confused. The amounts Mayo says I owe keep changing. Every statement I get has a different amount. As for "Medtronic device which is known to have skin erosion problems" …… WHAT? No one ever said that to us. How did you hear that? I am not surprised, though, and I plan to raise a stink if I can corroborate that.It was never my intention to bad-mouth Mayo or the surgeon – so would you private message me? I would love to have a frank discussion with you.

Thu, Jun 20 10:46am · Deep Brain Stimulation (DBS) in Parkinson's Disease

Thank you, @hopeful33250. I just want to clarify briefly – Walt's Mayo neurosurgeon indicated that he would likely, after the 3-month healing period, be able and willing to re-implant the DBS system. Billing and Medicare issues, as well as my distaste for one nurse, guided our decision to change medical practice.

Wed, Jun 19 7:22pm · Deep Brain Stimulation (DBS) in Parkinson's Disease

Hello @leftylucy! Just saw your question about Walt's DBS. Funny you should ask…..I had not updated or added to his DBS story – but I think this is a good time to do that.

Good news and bad news…. First of all – Walt did amazing with the DBS. The DBS gave him a lot of himself back, and he was feeling pretty good about it. He had a couple of adjustments as his tremors increased, but he was only taking 2 carbidopa levodopa one time a day (as opposed to 2-3 tabs 5-6 times a day), and he loved being off the meds! Although he never let the PD stop him from doing things (he cut wood, carried things, loaded trailers, worked on cars, played with his grandchildren), after DBS surgery, he was willing to do a lot more physically demanding things – Our son took him to Montana for a ski-mobiling trip, he took the grandkids sledding when it snowed here in the mountains, he was more social, he did more driving.

The bad news…..One day in February we were sitting around the table talking with dinner guests, and he bent over. I thought I saw a glint of metal on his head – when I looked more closely, I could see a teeny bit of metal peeking through the recently healed incision where one of the wires had been passed over his skull. I called the neurosurgeon's office, and they said that he should take antibiotics they prescribed, and they would make an appointment for Walt to come in. Since there were no signs of infection, it was not considered an emergency. A few days later, there was more exposed wire, and we called again. The surgeon said it was likely skin erosion – a rare, unexpected development, but not unheard of. We sent photos, and they called to make an appointment. We thought the appointment would be to see the surgeon – or for him to see Walt. When we spoke to the surgeon's nurse, she tried to schedule surgery to "remove the DBS System." That was a shock! She was very matter of fact about it – like it was already decided, and like we already knew that it would all have to be explanted. I refused to schedule surgery until we spoke to the surgeon, and he called a couple of days later. He apologized for his nurse, acknowledging that he should have spoken with us first, rather than the way the nurse told us,, but he said everything had to come out. Once the wire, which was attached to the lead in his brain was exposed, the entire system needed to be removed. After 3 months of healing, Walt could ask about having it re-implanted if he wished. By the time we actually made it in for an appointment a couple of weeks later, there were about 2 inches of wire curving out of Walt's head, and back in. The other side of his head was fine – no sign of erosion – so they did not think there was an allergic reaction involved.There was no pain or discomfort.

On March 21st (his birthday!), at Mayo, he was put under anesthesia, and both leads, wires, and the battery pack were taken out. His tremors and other symptoms returned within a few days, and – frankly – were worse than we remembered seeing them in the past. It was sad. Very sad. Walt is currently back on meds – taking 3 tabs 5-6 times each day, to control his symptoms. The good news is that just this week, Walt saw Dr. Shill, a neurologist at Barrow's Institute of Neurology, the chair of the Dept. After an extensive exam and review of all Walt's DBS-related records, she told us that she would recommend that they implant a DBS system again – that he is a good candidate, and that because they use a different system, and perhaps different techniques, she believes it will work out well for him. They do the surgery as an asleep surgery, for which Walt is very grateful! Their DBS Team will review the case, and put it before Dr. Ponce, the neurosurgeon, and it should be scheduled a few weeks from now.

This whole thing was a complete shock – totally unexpected. So anyone having DBS should know that something like this is a possibility. I am sure it was one of the "risks" of which we were informed, but nonetheless, it was totally unexpected. The reason – for anyone who wonders – for our appointment at Barrow's is not that we fault the Mayo surgeon, but because Mayo does not accept Medicare assignment, and we are billed at 15% over the Medicare accepted rates. The paperwork and record keeping is killing me. Too confusing, and too expensive. Also – the incident with the Mayo surgeon's nurse was not the first time we clashed with her, and I do not wish to deal with her again.

@leftylucy – Best of luck to you. I know you are in good hands, and that the surgery will be amazing for you! Let us know how it all goes!
Maxine

Tue, Apr 16 10:00am · I'm having multiple odd episodes that are keeping me undiagnosed. Help in Brain & Nervous System

@johnwes5819 – I send your description of episodes to a friend who has a great deal of experience in seeking and obtaining diagnoses for her own "odd" symptoms. This is her response: A couple of thoughts to pursue.

Dysautonomia – http://www.dysautonomiainternational.org/page.php?ID=34 this may explain some of the symptoms, but it's hard to diagnose.

An endocrinologist can test for Adrenal Insufficiency. The best test for that is a Cortisol treat that must be done about 8 am.

A gastroenterologist can test for Exocrine Pancreatic Insufficiency (EPI). That would explain the gastric pains, light stools and would cause low vitamin levels that would then lead to some of the other symptoms.

These are just some possibilities, given the symptoms. I hope this helps.

Dysautonomia International:
What is dysautonomia? Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the automatic functions of the body that we do not consciously think about, such as heart rate,…
dysautonomiainternational.org