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First Name
Maxine

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Strawberry

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AZ

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Posts (22)

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

Mon, Feb 4 2:26pm · Loss of smell and Parkinson's in Parkinson's Disease

@robjohn – Hello! My husband, now 65 yrs old, was diagnosed with Parkinson's when he developed tremor in his left hand, about 6 -7 years ago. He found out, at that time, that there was likely a connection to his loss of smell several years earlier (no idea how many.) He has worked his whole adult life doing automotive body restoration, primarily fiberglass – so we assumed (and doctors agreed) that his loss of smell was due to repeated exposure to solvents, etc – despite the fact that he typically used safety equipment. I have since read that the loss of smell is often an unrecognized symptom of PD that precedes the PD diagnosis. Only in the last year has my husband experienced (or noticed) difficulties with tasting his food. I have had to amp up the sweet and tangy flavors in his food, or he finds it "flat" and tasteless. Often, when he eats out, food that he has previously enjoyed "tastes like nothing."

Thu, Jan 17 8:10pm · Deep Brain Stimulation (DBS) in Parkinson's Disease

Thank you for your good wishes – and Happy New Year to all! Walt was, indeed, scheduled for DBS activation and programming mid-December. But when he showed up for the appointment, he had zero symptoms. None. He was moving and talking and smiling like he never had PD, despite the fact that he had stopped taking PD meds about a week earlier.. The DBS Team and Dr Mehta agreed that there was no point/no way to program his DBS when he had no baseline symptoms. They called it a "honeymoon period" and/or a "meds washout period," and said that it's not unheard of – and that he should go home, not take meds until symptoms returned, and enjoy the symptom-free time. After about 1-2 weeks, symptoms began returning, so Walt was instructed to re-start his meds to control symptoms, and that he would be activated on 1/14 and 16. Since his symptoms returned at a lower level than prior tot he surgery, Walt chose to take his Carbidopa-Levodopa dosage only once in the day, rather than 5-6 times per day. So now, it's done. And it's unbelievable. Monday and Wednesday this week, the DBS Team at Mayo activated and programmed his hardware (the pacemaker-like controller and electrodes in the left and right sides of his brain). He had stopped taking Parkinson's medications, so it was exciting and magical to see his tremors disappear! We are so very grateful to the doctors who suggested and encouraged DBS, and to the medical professionals who made it happen and helped along the way. Walt's neurologist was delighted with the results, and said "This may be the best DBS result I have ever seen!" We are grateful to all who supported him with love, good wishes, prayers, and encouragement during what was, at times, difficult. And – of course – Kudos to Walt – his determination, courage, hope and strength carried him through.

Walt knows that this is not a cure – but more like a "re-set," and that eventually, symptoms will reappear and progress. But for now, knowing that the DBS can be bumped up to address emerging symptoms, and that he would be able to begin taking medications again, he plans to enjoy his life, day by day, to the fullest.

Despite the fear he felt, the pain he experienced, and the difficulties that challenged him – Walt says "Would I do it again? In a heartbeat!" (The picture is Walt and our daughter – who was at the appointments with us – in the parking lot as we left Mayo on Wednesday. Happy campers!)

Dec 8, 2018 · Deep Brain Stimulation (DBS) in Parkinson's Disease

Yes. No change in meds yet. It's interesting, though….Although he's been told not to anticipate any changes before this is all activated, I see a difference in him. His energy level has increased, his level of confidence is more apparent, he is much more talkative and expressive than he was a month ago.

Dec 7, 2018 · Deep Brain Stimulation (DBS) in Parkinson's Disease

@hopeful33250 – Thank you, Teresa. I meant to post an update sooner. All went well. The third photo is the last incision, where they went in to pull down the wires attached to the electrodes in his brain, through his neck, around to the battery pack they implanted under his collarbone. He was under general anesthesia for this procedure – done as outpatient surgery. There are 17 staples holding the incision closed. The first 2 incisions – through his skull – are barely visible now. Although these photos look (to me, anyway) significantly disruptive, they don't seem to bother Walt. Right now Walt is down in his shop doing metal work for the holiday gifts he is making this year. His appointments for programming and activating the electrodes in his brain are set for 12/17 and 12/19 at Mayo. A little side note – his gifts to family and friends this year are identical home decor items. He is cutting letters from metal and welding them together to say:"HOPE."