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Srvaughn

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About Srvaughn

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  1. 1. How many years do patients keep getting the level of benefits from there DBS implant? Is it common for patient after 10 years of having the dbs for it to stop working for them? Are there statistics on this? 2. is it true that u should be getting ur dbs reprogrammed every 3 months? or is it once you find a good setting you stop changing it? how do you know that you need to address it? are you depriving yourself from getting the benefits if you dont get your dbs programming changed every 3 months. 3. is it true that if u are dyskinetic alot from your pills that by turning up ur dbs programming you will be more dykinetic? so you shouldnt get it turned up then? 4. why do u have to have an MRI before they will work on programming for you dbs?> is it because there are side effects that can happen if the change the settings without the MRI showing its in the proper positions? if so what could be the side effects? 5. is it true that u can have a stroke from dbs programming changing ur settings?
  2. if you crumble a Sinemet CR would that be a similar method of delivery to liquid Sinemet? or would that shorten the duration of the CR effect and give you a shorter "ON" time? thank you
  3. How early along the battery voltage going down can a patient experience a decline in motor symptoms? Can a decline in motor symptoms happen way before a patient reaches for example 2.60-ERI (Medtronic)? Can a patient experience there battery life dieing faster after 2.79? for example instead of going down .01 every month it goes down .01 every 2 weeks. is one of the symptoms of a decline in battery: clinging arm tightly to my side of my body or what could that symptom be a indicator of? (when i sit in a chair and hangs straighter than usual not bending at elbow) thank you so much for you time and help
  4. Is it a 100% guarantee that every Parkinsons Disease patient will get Dementia or is there a percentage in the statistics through the stages of Parkinsons Disease? Does Parkinsons Disease in its late stage turn into Dementia? Can Dementia be detected through an MRI years before you would have it? Can you have a MRI/CAT Scan/PET Scan with a Deep Brain Stimulator implant? What are the risks and side effects from having a MRI with a Deep Brain Stimulator implant? Thank you very much for your time and help
  5. Dr. Foote / Dr. Okun : I have been on Xarelto for 2 years. I'm soon due for a Deep Brain Stimulator Battery Replacement. I have heard from another Parkinsonian who is on Coumadin that they got Lovanox shots everyday they were off the coumadin before/during/after surgery until they could resume there normal dosage level of Coumadin after there recovery after surgery. I'm inquiring for more information regarding whether or not if there is something like the Lovanox shot for example exists for people that are on Xarelto to take before/during/after surgery so that I don't have to fully be off my blood thinner for such a long period of time which I have heard would increase my risk of having a Stroke/PE. Also are there any statistics out there on how much higher of a risk it is being on blood thinner while having this out patient DBS battery replacement surgery? I'm asking all the above because I am in search of finding a facility that can offer me this extra protection of getting a substitute blood thinner incorporated throughtout the process of the procedure but I don't know if it even exists or is an option for someone who is on Xarelto. I am apprehensive about this with the risks involvement and would feel so much safer if I could have that opportunity. Lastly have you heard if there is an antidote for bleeding from Xarelto? Thank you very much
  6. May I please have your input on whether or not I should be using a motorized scooter. With my DBS and medications I was diagnosed as Stage 3 Parkinsons disease along with being on blood thinners, osteopenia, and rods and screws in my back. I currently push myself to stressfully/dangerously to walk but I can't walk well nor long so I end up spending majority of time sadly living out of one room sitting in a chair so that I prevent getting so weak and tired that I fall. I'm torn because I don't want to loose my walk by using a motorized scooter some of the day. Is that a fact that I will loose my walk if I start using a motorized scooter just for some of the day to get around the house long distance or when I am tired? I'm not sure how I should be living with my disability at this stage of my parkinsons disease I just want to try doing the best thing for my quality of life and for my body . thank you
  7. To Whom It May Concern: Have you ever heard of it being possible to get a battery change for the deep brain stimulator before you have reached ERI? I am experiencing symptoms of motor skill decline due to my battery running lower. I also have a high risk of falling and I'm on blood thinners and I experience difficulty breathing when my DBS is off. I am currently at battery life of 2.79. Can you recommend a better way to approach this to make a battery replacement surgery date happen before you reach ERI? (my surgery center is 3 hours away)
  8. Srvaughn

    apathy/anxiety/depression

    Hello, I'm experiencing the following symptoms and would like to get a better understanding about it. Is apathy/anxiety/depression triggered by the on/off cycles of carbiodopa levodopa extended release or is it because a missing chemical in your brain that is due to parkinsons disease that needs to be put in. Is there a test to determine if I am missing that chemical in my brain so then I would know that there is a need for my body to put that chemical in. Is there a test to determine which antidepressant medication is more likely to help a person overcome depression/anxiety? In the parkinsons community is it very common and does it have a good success rate with treatment? Or is it a good percentage of parkinsonians dealing that its uncurable and untreatable and its just part of disease to have anxiety so you must accept it and just deal with the suffering. Also to complicate the matter I am on a blood thinner and the information that I see clearly states that SSRI and other forms of antidepressants will increase the risks of bleedly. So I wasn't sure if you have heard of any other parkinsonians that are taking both a blood thinner and a antidepressant. Thank you in advance for your time and help
  9. How long do I need to be off for an initial appointment and will you change my meds?
  10. Srvaughn

    Untreatable Dyskinesia

    Hi Dr Okun Thank you for your reply. I have made an appointment to come down and see you and was wondering if I will be required to see you every month or 6 months or yearly? The reason I ask this is because I will not be able to afford to fly down alot in one year. I didn't know if you would still be able to help accomodate my needs of not being able to fly down alot in one year. Do you help guide your patients through patient portal/telemedicine until there next visit with you when you have patients that are out of state? Also what if you need more time with me because I'm a complicated case, is there such a thing as you needing me there a whole week? and im afraid/worried to be off my extended release sinemet for 24 hours before seeing you as stated in your 1st appointment guidelines because I don't know how I will be able to function while being off of my meds (eat, walk, go to the bathroom etc.) May I please ask you what I can expect will happen to my body while off meds for 24 hours? Are there any dangers to this? just so that I can be well aware thank you for all your time and help. p.s. I do have DBS.
  11. Srvaughn

    Untreatable Dyskinesia

    Hi Dr Okun Thank you for your time and help. I know I'm a complicated case and I agree with you I need a experienced neurologist. Would you please be able to help treat me if I become your patient of yours and I come down to see you even though I would be an out of state patient. Me being in New York and you in Florida.
  12. Srvaughn

    Untreatable Dyskinesia

    Hi, I am a PWP from the age of 35 to 59 who also has a DBS since 2011 and screws and rods in my back since 2014 from severe spinal stenosis and degenerative disc disease and a pinched nerve. The whole time I have had parkinsons I have been severely sensitive to the Sinemet IR which causes me severe dyskinesia that cause severe movements that twerk my back (surgical area screws and rods) and twist my neck where my wires are positioned and my eyes can closed. I hate being dyskinetic so much that I take "crumbs" of dopamine (half of a sinemet ER every 2 hours) and 2mg patch neupro. so for a long time now I have been having difficulty walking and my parkinsons symptoms are showing when they normally didnt. So I worry that I may be undermedicating myself but I don't know if there is a test to figure out if I am undermedicated or not? Are there patients that only take Sinemet ER?(especially being cut in half? Is that effective? due to severe dykinesia's from regular release Sinemet.) I currently take my 3- 100mg tablets of amantadine that doesnt seem to cut back on the dyskinesia of up to 2 hours to 3 hours a day and I unsucessfully tried Rytary which caused me 5-6 hours of dykinesia a day. I've heard that its not effective to cut the Sinemet ER in half because it alters the effectivness of the drug. What are your thoughts? Also I have anxiety and severe depression that I don't know if is caused by the incorrect levels of dopamine because I tend to see that my anxiety and depression are worst when its near end of dose time. I have heard that 40% of Parkinsonians have depression that is caused from a chemical that is not produced because of parkinsons disease. So they have to put the antidepressant in to give there body that chemical that there body isnt making. So how do you know if you are apart of that 40% and you need to be on an antidepressant or if its just an unbalance of dopamine thats causing the anxiety and depression. I have tried taking effexor for 2 years and paxil for 3 months both unsucessfully. And is dyskinesia a sign of too much dopamine? should we not increase dopamine and take less dopamine and throw in a different kind of drug? should i not be taking a dopamine agonist and use a different classification of drugs? thank you for all your time to help me . anxiously waiting your response.
  13. Srvaughn

    Dyskinesia Symptoms and Sinemet/Requip Ratio

    hello again mark, i was wondering, i am still having dyskinesia problems, peak dose and end of dose, i now take 2 100 mg amantadine tid 6am and 12pm,(instead of my every three hrs with 1/2 sinemet cr & 1/2 tablet generic amantadine_is this any good?? then i am increasing my 1/2 sinemet crs more but for as now it is usually every 3-31/2 hrs. but still in adjustment period, i mean i used to get these mean dyskinesias attacks i call it cause i would go as far as to freak out by walking crooked-twisted like, sweat, sob, what a roller coaster ride per say!!couldn't stand myself- did you ever hear of this?? then one day i told my 82 yr old mother, i drew a picture of a wave-like from 1-20min peak-3hr dyskinesias again, my life cycle ugh-not so nice hence the two drugs together cr&amantadine do they bang off each other??? doing that ev 3hrs(cause when i was doing good oveeeeer a year now still trying to feel good again-i used to spread a whole red amantadine capsule ev 6 hrs-good or bad MY FRIEND. MY question is i want to cut back on my dyskinesias along with my strength needed. PLEASE ADVISE MARK THANKS AGAIN JEAN from Buffalo
  14. Srvaughn

    Dyskinesia Symptoms and Sinemet/Requip Ratio

    hey mark i am having alot of trouble with peak dose dyskinesias,,,,,,in have dbs and have increased my dbs and trying to see if the long term use of amantadine is the culprit or is it the cr 25/100 , before i had trouble with dyskinesias i was at 2.4 right side of body & 1.7 lsb-neupro patch was 4mg, 25/100 cr & 3 100mg amantadine,, now im at 2.7,1.9 / 3.75 neupro mg patch, 1/2 amantadine tid and 1/2 cr four x' a day(every 4hrs) but still dyskinetic,, and thoughts,,,,?? (my dyskinesias can begin like 30mins after and last 1 1/2 hrs ugh, its ugly......HELP!!!!!!). can u plz reply to jeanz7@aol.com i would truely appreciate it. i remember meetiing at a couple of conferences n i am a good friend of thomas berdine s out of alb, new mexico.......im having alot of spinal s1-l4,l5 back issues,,,,,,,,so this dykinesias is not any fun, they there day i was in so much pain, i usu am a frequent visitor of my chiropractor , i found out that i had a unaligned bone in my hip area and pinching a nerve........ iam a mess.................is there such a drug idazoxan to help counteract my dyskinesias............it is such a roller coaster ride..
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