cheeryble

On 7/17/2023 at 11:15 PM, Sheryl said:

 

Is it possible to get and post a longer rhythm strip, keeping very still during? 

I decided on a middle course to speed things up a bit.

I now have an appointment at the Ram for tomorrow, Thursday, at 5pm.

if they don’t send me straight for an EKG I shall order one and have it ready for the oppointment.

Stay tuned.

2 hours ago, Sheryl said:

 

Thanks Sheryl.

I have an appointment in Sripat Friday but happen to know that the doc consults in Ram on Thursdays from 6 to 8pm

perhaps relevant to the urgency (or not) here is that I believe I had an EKG before my cardioversion 9 days ago which he would have inspected before the procedure or possibly it was taken a few days before which aided his decision to cardiovert. Presumably this EKG would have evidence of important heart conditions.

it’s also possible that my feeling unwell may have been linked to my Parkinson’s,it has been quite difficult to separate symptoms of one from the other sometimes.

Hmmm….

So why have I been feeling so ill?

Well, I was suspicious of the wave form. On the EKG.

so I looked up on Google, and got this below.

it’s clear that the waveforms from Google have a decent spike.

sos where is my spike on the EKG? Rather, it seems to spike downward if anything

I have a electrophysiologist follow up on Friday and I can ask then.

But I’d be very interested to learn something before that.

In a nutshell I now wear the Apomorphine pump, and we consider it a success.

I have been to Bangkok for a follow up and as there are no lesions or swelling’s on my stomach, they are allowing me to wear the pump for up to 13 hours per day.

The ablation has not been the same success, and a couple of weeks ago I had another cardioversion.

As I felt palpitations and arrhythmias after a couple of days I thought this was going down the tubes.

I then realized that I actually most of the time it was working OK. My wife checks my blood pressure every morning, three times laying down three times sitting up and three times standing up, it has been OK and I have had a good heartbeat, 70 or under

The odd thing is the odd thing is that I have often been feeling very unwell. So the last couple of days I have taken readings on my cardiamobile device, a single lead EKG for the first time ever I have had a read out… Well, you can read it.  For the first time  since the beginning of this saga is me it tells me AFib is not detected.

2 hours ago, Sheryl said:

1. What you refer to is "crowd sourcing", you post an appeal on something like GoFundMe. You will be competing with people in life and death situations so don't expect much.

 

To get non-emergency care on the NHS you need to have permanently returned to the UK. There are no specific proofs/definitions for that, but the intent is definitely not for people living abroad to be able to fly in and out for care. That said, there are people who have maintained a UK address but live all or most of the time in another country and continue to get NHS care.

 

on totally other subject - what was the total cost for your ablation at Chula?

 

 

Exactly Sheryl……Go Fund Me.

guess there's no harm in trying.

as for the ablation it wasn’t in Chula but in Sripat CM, and cost 430,000bt

1 hour ago, scubascuba3 said:

I don't know how you go about getting this drug back in the UK, my Dad is in the UK with Parkinson's and doesn't appear to be on any drugs helping much, although has seen specialists. A Danish friend has a father at a similar stage of Parkinson's in Denmark

Scuba it sounds like yr father is in a similar state I was in and perhaps most Parkinson’s sufferers are in, called fluctuation where even taking a bunch of drugs they are wearing off….in my case for several hours per day I was "off" instead of "on", and headed for bed way too much of the time.

I know people aren’t being adequately treated because as well as being under the care of two doctors and a nurse we see an apomorphine nurse most regularly. She actually works for the Apomorphine company and has told us a lot about them.it seems they are German now, but she clearly said there are 5000 UK residents receiving Apomorphine. Given the large population of PD patients there makes it obvious that a small proportion are on Apo who would benefit from it.

what I can’t help you with is how to get into the Apo system. I used Sheryl's method here in Thailand of seeing the top man and being referred to the dept he runs.

On 4/5/2023 at 6:21 PM, cheeryble said:

Those who read through this thread may remember I was turned down for the DBS because Chula didn’t want me going off the anticoagulants during an DBS op and risking a stroke. But of course, now I have had the ablation done it would seem turn ignoramus like me. Maybe my risk of stroke is now reduced.

So you might ask where it why don’t I push for DBS again, especially as I’m not sure if they apomorphine pump is on at night as well as day, something I feel is very important.

there are several reasons:

1) I don’t want to be pushy with people recognized as THE experts in Thailand. There are many factors involved including my age.

2.) the weeks I wait until my appointment at Chula rwill tell me more about the success of the Ablation

3) although DBS is often a very successful procedure the apomorphine pump is relatively simple technology and would likely be much more reliable.…especially given my age. It works within minutes and could be a great way to go.

4) high cost of failure with DBS. Apomorphine very ezxpensive but spread over a much longer period.

5) I don’t have to rule out DBS 100% in advance, better to arrive as already scheduled and “play it by ear “

So after the atrial ablation for which I wait to see if there"ll be an improvement, back to the original point of time coming here, which is to deal with my Parkinson’s.

after a long wait, I have now come to Bangkok to be "fitted" for an apomorphine pump and dosage.

I wondered how it could possibly take two weeks of appearing at the hospital every day from 830 to 4, and now I know.

So today was my first day and I have to say it was successful.

After blood and motor tests, they fitted the pump and set it up for a small dose to check for intolerable nausea. Happily, this didn’t happen, and they raised the dose a couple of times through the day. I then had my first day of going through the lunchtime hours without switching “off “. So this was successful too, and they will raise he dose incrementally.

just before leaving Chula this afternoon the apomorphine nurse pointed out my right foot. Since I first got Parkinson’s, my toes have been curled up on this foot, called hammertoe, and I have had a limp..

Well, guess what? On the first day with its modest dose there’s been a considerable improvement and the toes have relaxed to some extent. The nurse says I can expect further improvement.

so I think we can call that a very successful day, and happy it seems the docs made a good decision to use apomorphine rather than my first choice of deep brain stimulation.

The apomorphine nurse happened to mention when she learned that I had no insurance and paid myself that there are 5000 people undergoing this treatment in the UK. Naturally, this brought to mind the national health service, and the fact that (I believe) I am not a candidate for NHS treatment except for possibly if I go back on the NHS for 6 months.

I have no life plans to leave Thailand, long-term,  have dependents here, and I can afford to pay for treatment here for "X" years.

it has now crossed my mind, given that it looks like the apomorphine route is a good one, to wonder if I could raise funds for future supply of apomorphine……funds in the order of 40kbahtper month from some kind hearted individual in the same way I have "rescued" three dogs. I have of course already invested a considerable sum.

I believe there is a term for raising money this way, would someone know what it is, and have any knowledge on how to go about it. The alternative is does anyone know the rules or wrinkles for getting back on the NHS?

On 4/5/2023 at 6:21 PM, cheeryble said:

 

 

Hi, just got the jazz back from the mechanics.

I think they had a difficult job in that it’s difficult to fix some thing when it’s not displaying symptoms.

It looks like they went through the possibilities in a systematic manner.

The fuel pump and filter were certainly messy

anyway, it run smoothly yesterday so we’ll hope for the best.

He suggested that given the high mileage of 220,000 km I might at some stage consider getting an engine and gearbox from Japan. And mentioned 40,000 baht

thanks again for all the suggestions.

BTW I won’t fix it myself I’ll let the garage do it

Thanks for all suggestions…

I’ve never actually had a car diagnosed on the computer. Does the fault actually have to be happening or can the computer suggest something when it’s running normally.?

Jazz iDSl

220,000km

Has happened several times.

Seems to happen after waiting in traffic.

if car is left for a while it seems to restart ok.

took it to a well known garage but they cannot replicate….maybe not in traffic long enough.

no temperature gauge so cannot judge overheat but no rusty coolant spray in engine or hissing.

any ideas?

4 hours ago, cheeryble said:

Thank thank you kindly xylophone.

 

In fact, I underwent the procedure on Saturday@Sripat with a large medical team.

It was pronounced a success.

Within a day or two I started getting an arrhythmic heartbeat as I had been told, would be a possibility while the scarring  inside my heart healed. Happily today I checked with a small gadget I bought call Kardia mobile and it is back to “normal sinus rhythm “. I dare say there will be a bit of back and forth.

Today I went to the cardiologist and neurologist at the Ram.

I told the cardiologist you operation has been pronounced success, he was very pleased, and said it may will last for my life, and gave it a likelihood of 90%. Who knows? I’ll have to take the punches as they come., And just hope for the best.

I also updated the neurologist about the decision of Chulalongkorn Hospital to put me on apomorphine. I was interested if he knew if they used it at night as well as day as night time is such a trial, but Sheryl was right about the likely knowledge base of neurologists here in CM, and he plainly said he didn’t know anything about apomorphine.

My feet have become a little swollen, which I read on the chatGPT can be brought about by levodopa, but as this is a mainstay of my Parky’s meds I can’t even consider stopping it's use at the moment, but will try to give the feet some regular exercise. Albeit slow and very limited in duration for the time being

Chula nave given me an amended timetable of meds to try to ease the aches and effectively the paralysis of nighttime which I am about to start.

 

thanks for help and support!

Those who read through this thread may remember I was turned down for the DBS because Chula didn’t want me going off the anticoagulants during an DBS op and risking a stroke. But of course, now I have had the ablation done it would seem turn ignoramus like me. Maybe my risk of stroke is now reduced.

So you might ask where it why don’t I push for DBS again, especially as I’m not sure if they apomorphine pump is on at night as well as day, something I feel is very important.

there are several reasons:

1) I don’t want to be pushy with people recognized as THE experts in Thailand. There are many factors involved including my age.

2.) the weeks I wait until my appointment at Chula rwill tell me more about the success of the Ablation

3) although DBS is often a very successful procedure the apomorphine pump is relatively simple technology and would likely be much more reliable.…especially given my age. It works within minutes and could be a great way to go.

4) high cost of failure with DBS. Apomorphine very ezxpensive but spread over a much longer period.

5) I don’t have to rule out DBS 100% in advance, better to arrive as already scheduled and “play it by ear “

On 3/25/2023 at 6:25 PM, Soapy 100 said:

Good luck John

       Pat

 

 

 

Thanx Pat.

seems there's about a 70% chance of a long lasting good result first time

On 3/17/2023 at 2:48 PM, Sheryl said:

He seems to be the top doctor for this in CM. But as he is also at CMU you might look into whether you can get this done by him at lower cost at either Sriphat or Maharaj.

we went to see Dr Narawudt again and he was clear that this procedure has a very good chance of improving my quality of life. He was as happy to do the procedure either hospital.

Sripat offered a price of 380-420k baht and little or no waiting list. My wife got the price down to 450k from Ram, where she used to work, but as it was the same doc we will almost certainly go with Sripat.

Although I don’t shake much in frequency or magnitude, the doctor did notice my left leg, shaking a bit, and it brings up the question of will the anesthetic stop the shaking. He had been expecting us to order this procedure after moving on to apomorphine at 

chula U hospital, whereas I would like to get on with it. Obviously he needs me to be pretty much still, so that needs settling, up to him. I have learned that there is a considerable recovery time during which d AFib can reoccur on a temporary basis for a small number of months, so for me I’d like to get it done.

On 3/13/2023 at 10:50 AM, cheeryble said:

Thanks Sheryl, will discuss next week 

Hello Sheryl and all…

Well, I went to the RAM in CM yesterday and met the electrophysiologist who I believe only consults there, one evening per week, the rest of the time at Maharat hospital where he teaches.

As far as the D B,S and the blood thinner are concerned, you were right, Sheryl, though in fact, he said I would go off the blood thinner for a day, but in certain circumstances could be up to a week. I’m not sure why the difference. 

I didn’t go into this further for the time, being, as I was there, for just as important or in fact more important  a reason, as the DBS, and that was to check about an ablation for my AFib.

he checked my notes and looked at my heart on a recording on his screen, and gave me the OK.

He mentioned a team that did the a fib procedures and I asked about their experience. He said they do it more or less daily. 

Before we left the hospital, I was giving an estimate ( important as y’ou'll remember I self-insure). The price was 500 to 550 K baht. One has of course to remember that the procedure is not always successful first time, and I had been hoping for more like 350 K in case I had to pay twice, but anyway such as life.

the doc is Dr Narawut Prasertwitayakij

i was impressed by him, but would be most interested if you know anything of his or his team,s reputation, or if its worth looking anywhere anywhere else

thankyou kindly

17 hours ago, Sheryl said:

Did the foctprs know thst? As eith Eluquis udually only need yo stop one day before minor durgicsl procedure.

 

From what was told to you (stopping gor 2 weeks) they wete thinking of warfarin. 

 

I suggest you discuss issue with your cardiologist and perhaps have him call the clinic at Chula.

Thanks Sheryl, will discuss next week 

2 hours ago, Sheryl said:

There is a work around  to  th anticoagulant  issue though a bit complicated and not 100% risk free.

 

That is to switch from warfarin to an injectable low molecular weight heparin (e.g. Clexane). These are short acting so usually  need to only skip 1 dose before procedure.  Down side is you have to give yourself daily injections for about 2 weeks and the switch from warfarin to LMWH has to be done under close medical supervision. And on day of procedure you'll be unprotected clot-wise. 

 

If anticoagulatoon was your only contraindication fir DBS you might like to discuss this possibility with your  cardiologist

Thanks Sheryl.

I will certainly discuss this with the electrophysiologist in CM when I see him Thursday because AFAIK it was the only contraindication.

it may be another question whether Chulalongkorn are willing.

ps I am on Eliquis

3 hours ago, scubascuba3 said:

i would have checked with your heart specialist first whether meds can be paused or a workaround in the short term, may be a much lower cost 

3 hours ago, scubascuba3 said:

i would have checked with your heart specialist first whether meds can be paused or a workaround in the short term, may be a much lower cost option

In hindsight I wish I had.

Last week the wife and I went to Bangkok for an appointment at the Parkinson’s center at Chulalongkorn U.

The afternoon before the appointment I had to go off all medication, ready for being tested starting 8:30 AM next day. The next few hours were taken up with the gamut with the gamut of tests, both motor and cognitive. I actually believe I was a fairly ideal candidate for deep brain stimulation, bad. The short of it was that I would not receive this, as I am on blood thinning medication for my atrial fibrillation and they did not want me stopping this medication for two weeks or more and

I was offered another fairly high tech alternative, which was an apomorphine infusion pump brackets nothing to do with morphine close brackets. This had quite a few advantages over the normal medication, and would probably offer a much larger percentage of “on “time during the day and night.

Apart from being rather unwieldy the big problem with the apomorphine pump is the cost. The medication itself alone alone costs about 40,000 baht per month!

They have booked me in at the end of next month. I am to spend two weeks in Bangkok going to the hospital every morning at 8:30 and leaving at 3:30. I am not sure exactly what will happen during this time but needless to say I will be adjusting the dosage and all that sort of thing

I was extremely impressed with the lady who is in charge and then the professionalism of the staff of the staff 

In the meantime, I will see what can be done about the a fib, and already have a appointment with the electrophysiologist at the RAM

On 10/14/2022 at 4:37 PM, Mark Nothing said:

I resolved the frequent night time urinations by not drinking liquids 4 hours prior to bedtime which results in 8 hours of uninterrupted sleep.  If your mouth is dry swish with water, but don't swallow. 

Wondering why "don’t swallow"

1 hour ago, Sheryl said:

If Dr. R referred you to MRI clinic then 1.5 Tesla should be fine.

 

I believe the purpose is just to exclude any other neurological causes or structural anomslies.

 

That makes sense Cheryl… I was just concerned that the MRI might be used for measuring the position of the electrode.

I dare say I’m over thinking!

On 12/30/2022 at 1:47 PM, Sheryl said:

It might be possible to see Dr. Roonroj through the Chula after hours clinic.

 

If not glrhen the public Chula  channel is best bet. You'd likely end up there anyway. 

 

Your average neuroligist will not be much help on this. 

Hello Sheryl

I have cracked on and went to Bangkok to consult with Dr Roongroj. I have a list of chores to complete, including an hourly table of my Parkinson’s on or off state, brain scan with carotid artery, blood work and a sleep study. My medications are now take an exactly on time., they have been adjusted and I am also using patches.

I’ll write about my experience for the benefit of others and let you know details so you have the latest information about beginning this process to hand, but right now I have an immediate question to ask just to try and economise

 Dr R filled in a request form for an MRI as I said above. It was a form from the company, MRI, Thailand, who I believe are also in Chiangmai and Chiang Rai. I as I said, it was for a  brain. And carotid artery scan. We called Sripat imaging center in Chiangmai, where we live, and were given a price around 23,000.bt. My wife said why not go to the RAM where I get a 20% discount. We checked the price there and it was also a couple of thousand cheaper, meaning a potential saving of about 6000bt.

the thing is the Sripat center has a 3 Tesla machine (which is why I started there) whereas the Ram has 1.5Tesla.

naturally, if there is a worthwhile advantage in the three Tesla scan, I would pay it. But I had a brain wave and called MRI Thailand……which Dr R himself had fillled in the form for"…..to ask the spec of their machine.

I was told 1.5 Tesla.

Without appearing penny mean/pound foolish I’m wondering if I should make this saving. Is there anything else in the technical line to consider.?

ps MRI Thailand surprisingly came in at a full 24,000

pps note to self double check I will get 20% off at the Ram

as always thanks in advance

On 12/30/2022 at 1:47 PM, Sheryl said:

It might be possible to see Dr. Roonroj through the Chula after hours clinic.

 

If not glrhen the public Chula  channel is best bet. You'd likely end up there anyway. 

 

Your average neuroligist will not be much help on this.