Parkinsons… Deep brain stimulation

[cheeryble]

 I have been diagnosed with Parkinson’s for six years.

Obviously, I had some interest in deep brain stimulation, but I thought it was reserved for those who had had Parkinson’s much longer. Yesterday, a friend sent this serious of YouTube videos and the subject of the documentary who has her operation under the NHS. It turned out had Parkinson’s also for six years.

 

And my symptoms are not the same as hers but I did have one of the surgeons saying a good reason for having DBS is if the medication’s are working very sporadically. I am switched off a lot of the time and when I take my meds, it can take more than two hours for them to start working.

I do not shake much, but I shuffle when I’m off with steps of just a few inches. Food gets lodged in my throat. I have no sense of smell. I can’t type when I am even a little bit off. [hence why am dictating this? I’m sorry if it’s not too accurate] when I am off I can’t turn from one side to the other in bed in bed and an often cannot get out of bed.  I can’t turn from one side to the other in bed in bed and an often cannot get out of bed. This will give some idea I write this. I merely to give some idea of the importance an operation could have.

 

I have no insurance, so I would have to pay from my savings.

He could anyone, notably, Cheryl, or anyone who has been through the same journey, put me in the right direction to have this done in Thailand.? is India a worthwhile option?

Thanks in advance.

Cheeryble

 

 

[ozimoron]

@Sheryl

[scubascuba3]

Nice post, could have been written by my dad who has Parkinson's, same symptoms, interesting you refer to it as off, good description. Good luck

[Sheryl]

Where in Thailand are you located?

[cheeryble]

1 hour ago, Sheryl said:

Where in Thailand are you located?

Hello Sheryl

im in Chiang Mai, 74yo

 

[Sheryl]

As cost is a concern you would be best off coming here, but as it is a government facility need to plan on staying in Bangkok  an extended period:

 

https://chulalongkornhospital.go.th/kcmh/en/ec/ศูนย์ความเป็นเลิศทางก-13/

 

Bring a medical summary with you from your doctor. They only consider DBS for patients for whom medication alone is no longer working, or who have intolerable side effects from the meds

 

T save time, in case you would nto be a candidate for DBS, I suggets you see this senior Chula doctor privately for a consultation

 

https://www.medparkhospital.com/en/doctor/prof-dr-roongroj-bhidayasiri

https://www.bumrungrad.com/doctors/Roongroj-Bhidayasiri

 

If he thinks you are possibly a candidate for DBS can then discuss with him the process for doing it at Chula (there may be a log wait list)

 

Regarding India,  I can't say re cost or ease of getting DBS but doctor to contact is

 

Dr. Prashanth L. Kukkle, Center for Parkinson's Disease and Movement Disorders Clinic, Vikram Hospitals, Bangalore 560052, India; E-mail: [email protected]

 

 

 

 

[cheeryble]

20 hours ago, Sheryl said:

As cost is a concern you would be best off coming here, but as it is a government facility need to plan on staying in Bangkok  an extended period:

 

https://chulalongkornhospital.go.th/kcmh/en/ec/ศูนย์ความเป็นเลิศทางก-13/

 

Bring a medical summary with you from your doctor. They only consider DBS for patients for whom medication alone is no longer working, or who have intolerable side effects from the meds

 

T save time, in case you would nto be a candidate for DBS, I suggets you see this senior Chula doctor privately for a consultation

 

https://www.medparkhospital.com/en/doctor/prof-dr-roongroj-bhidayasiri

https://www.bumrungrad.com/doctors/Roongroj-Bhidayasiri

 

If he thinks you are possibly a candidate for DBS can then discuss with him the process for doing it at Chula (there may be a log wait list)

 

Regarding India,  I can't say re cost or ease of getting DBS but doctor to contact is

 

Dr. Prashanth L. Kukkle, Center for Parkinson's Disease and Movement Disorders Clinic, Vikram Hospitals, Bangalore 560052, India; E-mail: [email protected]

 

 

 

 

Yeah Cheryl.

Thank you so much for this information which by chance has been confirmed by pharmacist friend, whose father has had long-term Parkinson’s and knows Dr Roongrod.

I have made the clear decision in the last day or two to try for this operation and will crack on with the all speed. Wish me luck!

 

It is nice to see you still doing the wonderful work you do.

Merry Christmas to you and yours

Cheeryble.w

[cheeryble]

That should be dear Cheryl!

[JimmyJ]

On 12/23/2022 at 1:30 PM, Sheryl said:

As cost is a concern you would be best off coming here, but as it is a government facility need to plan on staying in Bangkok  an extended period:

 

https://chulalongkornhospital.go.th/kcmh/en/ec/ศูนย์ความเป็นเลิศทางก-13/

 

Bring a medical summary with you from your doctor. They only consider DBS for patients for whom medication alone is no longer working, or who have intolerable side effects from the meds

 

T save time, in case you would nto be a candidate for DBS, I suggets you see this senior Chula doctor privately for a consultation

 

https://www.medparkhospital.com/en/doctor/prof-dr-roongroj-bhidayasiri

https://www.bumrungrad.com/doctors/Roongroj-Bhidayasiri

 

If he thinks you are possibly a candidate for DBS can then discuss with him the process for doing it at Chula (there may be a log wait list)

 

Regarding India,  I can't say re cost or ease of getting DBS but doctor to contact is

 

Dr. Prashanth L. Kukkle, Center for Parkinson's Disease and Movement Disorders Clinic, Vikram Hospitals, Bangalore 560052, India; E-mail: [email protected]

 

 

 

 

Sheryl - The range of your knowledge is amazing.

[cheeryble]

Hello, Sheryl

 

I feel I should give some feedback to keep your knowledge base up-to-date.

I have discovered the Dr. Roongroj is now not accepting new patients at the Medpark and Bumrungrad..

I have made an appointment at Bumrungrad with a Dr Orapon for 20th January as the first step, and I am considering a visit to the Chivacare Clinic in CM, firstly to check out muscle/skeletal issues like hammertoes on my right foot, and as the doc there is a neurologist he may have some input on my route to DBS.

As I write, it is three hours since I took my dopamine at 9:30 and it has had, no noticeable affect.

Yesterday, even taking a dose of Madopar and re-quip together did not work and the gym was a snail,s pace.

 

[Sheryl]

1 hour ago, cheeryble said:

Hello, Sheryl

 

I feel I should give some feedback to keep your knowledge base up-to-date.

I have discovered the Dr. Roongroj is now not accepting new patients at the Medpark and Bumrungrad..

I have made an appointment at Bumrungrad with a Dr Orapon for 20th January as the first step, and I am considering a visit to the Chivacare Clinic in CM, firstly to check out muscle/skeletal issues like hammertoes on my right foot, and as the doc there is a neurologist he may have some input on my route to DBS.

As I write, it is three hours since I took my dopamine at 9:30 and it has had, no noticeable affect.

Yesterday, even taking a dose of Madopar and re-quip together did not work and the gym was a snail,s pace.

 

IMG_1160.MOV 10.13 MB · 1 download

 

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. 

[cheeryble]

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. 

 

[cheeryble]

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

[Sheryl]

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.

 

[cheeryble]

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!

[cheeryble]

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

 

[Eloquent pilgrim]

20 minutes ago, cheeryble said:

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

 

I’ve just been reading your thread with interest because my best buddy in the UK has been suffering from Parkinsons for the last 8 years.

 

I obviously can’t offer any advice, but just wanted to wish you the best of luck …. keep fighting buddy ????????

[scubascuba3]

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

[Sheryl]

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

[cheeryble]

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.

[cheeryble]

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

[Sheryl]

1 hour ago, cheeryble said:

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

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.

[cheeryble]

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 

[cheeryble]

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

[Sheryl]

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.

[cheeryble]

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.

[Soapy 100]

Good luck John

       Pat

 

 

 

[cheeryble]

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

[xylophone]

27 minutes ago, cheeryble said:

Thanx Pat.

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

That is a high percentage chance of a long lasting and good result, so may I wish you all the very best on this new "adventure" of yours.

[cheeryble]

On 3/27/2023 at 6:21 PM, xylophone said:

That is a high percentage chance of a long lasting and good result, so may I wish you all the very best on this new "adventure" of yours.

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!