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Found 63 results

  1. Dear doctor, Until now the medical literature as far as I can see does not clearly define the functions that are restored or worsened or left as they are by the DBS. To make it more clear we know ıt suppresses tremor and rigidity in the joints and involuntary movements by decreasing the daily intake of medication. but does it influence in positive or negative sense the symptoms such as cheek biting, drooling, eating the tong, dry eyes, dry mouth, slurred speech, loss of short term memory, not being able to find the words to speak, weak voice, loss of balance, weaker muscles, urological problems, nightmares and probably many others that do not come to my mind now. I personally think that most of these symptoms are negatively affected by DBS. Am I right?
  2. Wrkjnky13

    Las vegas is hopeless

    Need an mds now. As close to las vegas, Seattle, Denver, pheonix , or Casper wy as possible. The Hellof las vegas is not just the heat it's also medical.
  3. Donco13


    Im in las vegas. Thought I had a decent team to help. Finding out you have little to no options makes a person feel lost. Have had a difficult time with doctors since i have been diagnosed. From a failure of a referred neurologist to a good doctor that didnt have time for me and i suffered. A failed DBS attempt due to anatomy issues, it took another doctor and a new facility to finally perform the procedure with my anatomy. Now I have the DBS. Im havent been balanced (feel somewwhat normal) since a week before the dbs when my back locked up from spasm and ended up in the er. I need this thing turned on . And my neuro is not available. due to issues at his office. ONE OF 2 NEUROLOGISTS MDS IN TOWN TAKES MY INSURANCE. iS THERE SOMEONE YOU CAN RECOMEND AT BARROW IN PHEONIX THANK YOU INEED OF HELP ASAP.
  4. ardziv7

    DBS Programming / Configuration

    Hi, I wanted to ask if it is possible for a DBS operation to give bad results? or it is just the programming part which is not well done? My father has done DBS surgery and the programming is still not so good, and he does not feel well. He needs to go every week or so to reprogram. (it a Medtronic device) Also, I wonder if anyone here uses the personal programmer for his/her DBS ? any opinions about it? Thank you
  5. coacht

    other surgery with DBS

    Hello all, Have any of you with DBS had other surgeries? My wife broke her ankle and is having surgery. Of course she is 400 miles away and with this snowstorm there is no way I can be there. What has been your experience? Coach T
  6. Wrkjnky13

    Dr Glickman

    Has anyone used Dr Glickman in Las Vegas Nevada? Due to the size/ shape of my head , I need a frameless procedure. Dr Glickman uses the nexframe design. Looking for some background information on him and the nexframe design. Due to a failed procedure and a lack of options he is the only option besides traveling. Im trying to avoid another failed procedure Go figure Dr fails to measure my head and procedure gets cancelled and my insurance gets bulled 13k. In which I have to pay the deductible and coinsurance. And pay for sn additional procedure Any help is appreciated Don Las Vegas Nevada
  7. RNwithPD

    Approved for DBS

    I just received word today that the DBS team at Vanderbilt have approved me for DBS surgery. I am scheduled to meet Dr. Hamid M Shah, neurosurgeon, at the end of the month. If any of you have personal experience with this surgeon - good or bad - I would appreciate you sending me a message to let me know, as I don't know anything about him. I have been reading a lot about DBS and weighing the risk-benefit ratio. A couple of good books on the subject are: DBS: A Patient Guide to Deep Brain Stimulation by Sierra M Farris, PA-C and Dr. Monique L Giroux, M.D.; and Parkinson's Disease: Diagnosis and Clinical Management by Stewart A. Factor and William J. Weiner. They intend to do bilateral STN. I have to admit that I go back and forth on whether I should have the surgery or not. When my meds are working well, I think that I don't really need the surgery. Actually, I think I need this surgery like I need another hole in my head. And when they're not (and I'm standing in the back of the store unable to walk due to sudden dystonia in my leg and foot), I can't wait to have the surgery. If only I could see into the future and know exactly how it will affect me. I'm sure that those of you who have already had the surgery know all to well what I'm going through. Anyways, just thought that I'd share where I'm at in my journey and hopefully get some feedback on the person who is most likely going to poking around in my brain. Kevin
  8. Deepak

    Infinity DBS system - issue

    Although I had this symptomatic relief the disease seems to be progressing and has worsen with the side affects of the medication. Freezing and Dyskinesia was one of the major side affect of the medication which was disabling my social interactions and professional life. The doctor’s advised for the STN DBS for getting back to the stable state means where we will have minimal fluctuations of the ON/OFF state. The doctors assured that I will make a remarkable change after the surgery. Surprisingly we are not able to achieve the expected result from DBS surgery and even if we get the result we were not able to sustain the outcome for a day or two. Currently at 4 doses of sinemet and 2 doses of CR along with left side voltage 4 and right side 3.Even then we are not able sustain the results.
  9. Katherine Griswold

    Robotics vs ClearPoint DBS

    I am hearing about two different types of DBS. What can you tell me about Robotics vs ClearPoint DBS?
  10. ScottSuff

    Follow the DBS Road

    Decided to blog my journey with DBS, if anyone wants to follow along. Scottsuf.blogspot.com
  11. Dear Doctor, After bilateral STN I have Pulse = 60, Frequency - 180 Hz, Amplitude 4.2 and bipolar stimulation on one side. Can this frequency be decreased to 130 or lower values to decrease the speech and swallowing problems while controlling the tremor at the same level by increasing the amplitude. Thanks
  12. I was diagnosed with Parkinson's on 2009 after 2 years of evaluation. My presenting complaints were stiffness and slowing. Subtle motor symptoms and other early signs - anosmia, severe fatigue, constipation, falls. I was started on sinemet 25-100 three times a day, which initially was miraculous, in an hour my lefthand, which was stiff to the point of postured, could move normally. I persisted and taking it in spite of extreme nausea, though this was helped someone with the addition of lodosyn. After about a year I begin to experience dystonia in my left neck and shoulder, and the effectiveness of the sinemet lessened. The neurologist I was then seeing did not recommend increasing it. I was tried on several other agents, dopamine agonists etc. I sought a second opinion at Brigham and Womens hospital, where it was suggested that I considerDBS. A year and a half later, I had a right brain GPI DBSi implanted. For the first 6-9 months it seemed to work quite well, after which it suddenly became less effective, the most effective electrode (zero) no longer working properly. It's still help some, but was no longer highly effective. I do not know if this was related to medication, disease progression or problem with the DBS, though the neuologist wondered if the lead had settled, and the neurosurgeon who replaced my battery two years later remarked that the lead might be slightly misplaced. Overtime I developed frequent on off fluctuations A year ago I went to one of the centers for excellence to be seen at a clinic for DBS reassessment and reevaluation. They did an extensive evaluation of my medication history, the DBS history, and spent six months working with programming. An MRI confirmed the suspicion that the lead was not optimal placed, and we agreed to revise the DBS, removing the current lead, and replacing it with leads on both sides of the brain, to manage dyskinesia which by then had developed as well as the dystonia and well as motor symptoms. These were both placed in the STN. The system was activated on April 20, 2 1/2 months ago. The symptom control in my right side has been easy to manage, with a very low voltage mostly managing dyskinesia. The left side has been much more problematic. It seems that I need higher voltages to treat my motor symptoms of slowing and stiffness, but these higher voltages cause stimulation induced dystonias that affect my entire left side. When the programming was started my sinemet was reduced by 50% all at once. I had considerable off time between doses and felt very drained of any sense of well-being. I have recently been switched to rytary, initially one capsule five times a day, just increased to two capsules five times a day. Sinemet discontinued. If I leave the stimulator at 2 V, it does help more with stiffness, but I continue to have dystonia, and dyskinesia particularly with any kind of stress or when I'm fatigued. I find the dystonia extremely disabling. It also affects my gait, which is aggravating a knee injury on opposite side, further reducing my mobility, and the ability to exercise. My neurologist wants to keep the stimulation up, and work on the medication. But I'm feeling stuck. I've had dystonia prior to ever being on medication, dystonia caused by medication and now dystonia caused by stimulation. Every time we meet, he is satisfied that I look better, but I feel worse. My instinct is that the stimulator programming needs to be changed, just based on how my body feels since the stimulation was added to the picture. Am I crazy? If I wait long enough will I accommodate to this level of stimulation? Was the stn a problematic choice given my tendency to have dystonia?
  13. MurrayPD2

    DBS Screening

    I just received news that I passed my DBS Neuropsychological screening exams. At least I know my brain still works pretty good! Now, I get to wait to see what the next step is.
  14. MurrayPD2

    Visit with Medtronics

    I am planning a DBS in January and I am scheduled with my surgeon, so Medtronic gave me a call to meet with me and my wife. I wasn't sure what to expect, but me and my wife got a lot out of the casual meeting at Starbucks. The man was very thorough and was able to go all the technical parts of the surgery. I am glad everything was upfront and very honest. It seemed more simple when the neurosurgeon explained it, but he was more interested in what I needed, now I know why. I didn't know that the surgeon had a choice of GPI or STN based on what works best for your symptoms, but GPI is preferred. STN has a potential side effect that agonists have and that is concerning since I don't deal with agonists well. I am wondering if I can find out beforehand what he wants to do based on my history and symptoms. They want to put a non-rechargeable battery in and I think that's good news since my SCS is already implanted with a rechargeable and taking rechargers on trips or remembering to charge every week can be a hassle after a while (but still worth it). I also heard that Medtronic is about to release a major update to their DBS controllers that give them more options/abilities for treatment. This is in the next 1-2 years. So, when I get a battery replaced in 3-5 years, I will be getting upgraded; which is nice. Has anyone followed this Medtronic upgrade or know much about it?
  15. The 10 Breakthrough Therapies and Treatments to Watch in Parkinson’s Disease A breakthrough is defined as a sudden increase in knowledge, improvement in technique, or fundamental advancement in understanding. Often breakthroughs occur when a formidable obstacle is penetrated. Breakthroughs are heralded as major achievements and they pave the road to meaningful progress in any disease. I have spent my entire professional career focused on Parkinson’s and related diseases. I have been blessed to spend much of my time taking care of patients, and I have evolved to understand the critical need for all those suffering to have access to information on breakthrough therapies. The point that I emphasize with my patients is that breakthrough ideas and therapies in Parkinson’s disease stretch far beyond a single drug or stem cell. There is, in fact, a broader and more exciting picture and portfolio of breakthroughs spanning drug, cell, vaccine, device, genetics, care, and behavior. Patients and families with personal investments in Parkinson’s disease should be informed and updated about all of the potential breakthrough therapies. “Every challenge you encounter in life is a fork in the road. You have the choice to choose which way to go: backward, forward, breakdown or breakthrough.” ― Ifeanyi Enoch Onuoha There are several potential breakthroughs that should be on every patient and family member’s radar screen. Here is a list for patients and families of potential Parkinson breakthroughs to watch http://parkinsonbreakthrough.com: · Disease Modifying Drugs and Biomarkers- these are drugs that may slow Parkinson’s disease progression; also imaging and fluid (e.g. blood, spinal fluid) markers that can track the effects of Parkinson’s drugs are needed and under development · Coffee, Tea, Exercise, Interdisciplinary Teams and Caregivers- there is mounting evidence that these approaches have symptomatic and perhaps even other benefits in Parkinson’s disease · Extended Release/Novel Delivery Systems for Parkinson’s Disease Drug and When to Start Drug Therapy- Parkinson’s disease desperately needs longer acting drugs to reduce the “number of pills” burden · Marijuana and Synthetic Cannabinoids- surprising to some experts has been the revelation that there are cannabinoid receptors in the brain and tickling them may be beneficial to some Parkinson’s disease symptoms · New Drugs for Hallucinations, Sleep, Constipation and Dizziness- these problems are vexing for patients and caregivers, but several new drugs are poised to make a difference · Therapies While Hospitalized and Avoiding Hospitalization- we now know that the hospitalization risk is very high in Parkinson’s disease, and that hospitals can be dangerous places for patients; the focus needs to shift toward avoiding hospitalizations · Advancing Deep Brain Stimulation Technology, Earlier Intervention and Dopamine Pumps- the technology has been refining our approach to the symptomatic management of Parkinson’s disease and new therapies are now reaching the bedside · Stem Cells and Stem Cell Tourism- there has been a shift away from the idea that stem cell transplants will cure Parkinson’s disease, however stem cells are proving powerful in drug screening · Prions, Spreading Proteins, Vaccines and Growth Factors- several novel approaches are in trial, and a Parkinson’s vaccine may be on the horizon · The Drug Development Pipeline- understanding the drug development pipeline will help patients and families to gain access to the newest Parkinson’s disease therapies Check out the new book 10 Breakthrough Therapies in Parkinson's Disease at www.amazon.com http://www.amazon.com/10-Breakthrough-Therapies-Parkinsons-Disease/dp/0692497412/ref=sr_1_1?ie=UTF8&qid=1443354908&sr=8-1&keywords=parkinson%27s+disease+and+okun
  16. ScottSuff

    DBS and insurance

    What should/can I do in this situation? I was approved for the DBS procedure by my primary insurance (a large national company), however they denied inpatient status for the 2nd phase surgery. My secondary insurance,Tricare covers DBS when it's for chronic pain, and they have it as an inpatient status, however when they are a secondary they use the guidelines set by the primary. I'd like to see if the working group that creates insurance guidelines would like to undergo surgery for 3+ hours having holes drilled in their head and leads inserted in their brain and then ride 3+ hours back to home? I sorta doubt it! Do I have any options?
  17. ScottSuff

    Overnight stay denied!

    I've been approved by my primary insurance for DBS. However, they have denied inpatient status for the second surgery. The first and third surgery is outpatient and there is agreement between Vandy and my primary insurance.They are saying this invention is considered to be an ambulatory procedure and can be performed in an outpatient status! I'm putting up an appeal and I need some help from this wonderful group. I'm just trying to get some data to help my case. How many of you have had the DBS procedure ( drilling holes and lead insertion) in outpatient status? I don't know of a hospital that will entertain doing it in outpatient status. Appreciate your help.
  18. Hello all, A neighbor to my parents called about her son who had DBS on Monday. He is not able to walk and is still in the hospital. His voice is very soft. What has been everyone's experience immediately after the surgery? My DW went home the next day, but as the doctors said, she had the optimum outcome. He is around 60 if I recall correctly.
  19. I had DBS (STN bilateral) in April 2014. It worked great for my tremors, including my internal tremor. However, my walking and balance is terrible, I did not have this problem before my surgery. I am battling freezing up a lot and have had many falls. I never fell even once before my surgery. They have tried shutting off the stimulator and the freezing would stop. My neurologist kept saying we had to find the right setting. She then referred me to an associate, who also could not help me. I am now on my third neurologist/programmer. He says he has seen this before and does not seem very hopeful. We have tried may setting including low frequency, cycling and adding different meds (ritalin, selegeline, azilect, requip). Currently on 2 sinemet 25/100 4 x's a day, 1 CR at bedtime and amantadine 3x's a day. New settings will work for awhile, even for a month or a little longer, and then I go back to freezing up again. When it is working I feel great, even forget I have parkinson's. None of the doctors have an answer for why this happens. I was wondering if you knew why or had any suggestions.
  20. I'm a 64 y old male, diagnosed in '04. I had unilateral (right hemisphere) DBS (STN) in sept '15, with the second side scheduled 3 months hence. Within days of surgery, I noted my left leg and foot developed a mind of its own. It was suddenly very dyskinetic, and it wasn't at all before. My left arm was much improved (from its bradykenisia) but my left leg seems to have paid the price. The programmer couldn't affect the leg but did help arm and hand. I was told it might " just go away in time". At first the surgeon denied the surgery could cause this, and blamed bad med doses. I did some Online research and learned about 'brittle dyskinesia'... Forwarded the link to surgeon. The thing is, it's gotten a lot worse, the left leg, and causes severe, out of control dyskinesia in the whole left side of body. (It's almost like my left side is possessed, crazy I know) When it kicks in, I can't stop it. My walk gets very loopy and dangerous. I'm told by many I need to finish the job and do DBS in other (left) hemisphere. I'm frightened that this could cause the same problem on other side of body rendering me a useless trembling blob of flesh. I asked if they could do other side in GPI, but they were skeptical. Not sure what to do? Other side? Redo both sides in GPI? Give up? Not even sure who to consult on this as it seems a pretty rare occurrence. Advice? Suggestions? HELP??? Do second surgery? Start over?
  21. Last October I posted about a problem I had with severe freezing of gait. It started with pain in my lower back from a pinched nerve. Allowing it to go on for months was a mistake. Eventually "traction" at the local hospital physical therapy clinic has stopped the pain and I maintain relief with an inversion table. But...once the freezing habit was embedded in my mind I couldn't let go of it. Tight, narrow places to walk were the most difficult. DBS in 2011 and again in early 2014 (second side) have blessed me with incredible results. 25 down to 5 meds per day, for example. When I turn one of the stimulators off, now in less than 1 minute I can't move the fingers on one hand at all. So, I went to my programmer at Cleveland Clinic, and then to the University of Toledo Medical Center to see if a programming change would help with the freezing. After 3 different sessions I was beginning to believe that DBS simply couldn't help with a freezing problem. In fact, I read online where in some cases DBS could sooner help induce or support freezing. At that point someone on this forum (PatriotM) helped greatly by mentioning David Zid (author of the Delay the Disease program). A one hour session with David in Columbus worked miracles for me...for 2-3 days. Then the effectiveness faded. I was convinced that David's therapy worked, but I needed more of it, for a longer time period. (Signed up for LSVT, or the BIG therapy. Just finishing my first week, I'm confident this is going to take care of the "embedded memory" problem.) Then, online I read an article that was titled "Adjusting Deep Brain Stimulation Can Ease Swallowing and Freezing of Gait in Parkinson’s". My stimulators had been set a 130 herz (like the article said) since the beginning. I sent the article to my programmer at Cleveland and made an appointment. A couple of days ago she changed the herz settings on both stimulators from 130 to 100. The results are SIMPLY AMAZING. The freezing tendency was reduced tremendously instantly. Due to me embedding the habit for so long the LSVT is still necessary, especially at night when I'm off meds for 12 hours, 6 to 6. But the other thing that is blowing my mind is I feel more "settled". It's like there's a subtil stimulation that was happening inside of me that has settled down. It's fascinating how you read someone else's post, and can't at all relate...yet. For example, early in PD (diagnosed 13 years ago now) when someone would talk about "on/off" I had no idea what they meant. Oh boy, did I ever come to understand later! "Freezing" was also something I couldn't imagine. Now I do. The PD journey continues. Thanks to all of you who's posts have been so valuable to me as we all continue to learn together and do the best we can with what we've been given. Obviously, we are all very unique. I wanted to post this in the rare case that there's someone else out there dealing with the same challenge that this may also help. And, thanks for people in the medical field who are not only knowledgeable, but also humble enough to partner with us. My programmer at Cleveland could have resented my input if she had a big ego. She said she was considering going there (lower herz settings) anyway, and I believe her.
  22. 1-800-4PD-INFO

    Question about Medications and DBS

    Hello Dr. Okun, I have been taking clonazepam and ambien for the past 10 years, as well as my PD medication. My symptoms are currently well controlled. 1. In the future, if I want to have DBS done, can I still get it done, even though I've been taking clonazepam and ambien for the past 10 years?. 2. In order to have DBS done, will I need to stop taking the clonazepam and ambien--1. right before the surgery? 2. will I have to stop taking them forever if I get DBS? thank you for your answer.
  23. mickigarden

    DBS and respiratory issues

    Dear Dr. Okum I had DBS surgery done last June. I have noticed a change in my respiratory pattern in the last couple of months. I find myself with shallow, panting like respirations both at rest and when active. It was noticed by my MDS who referred me to my GP and said there is no correlation with the surgery. It is intermittent. I'm just wondering if you have ever seen this. Thanks, Micki
  24. mickigarden

    DBS and respiratory issues

    I had my DBS surgery done last June. I have noticed that my breathing pattern has been altered in the last few months. I seem to be having rapid shallow breathing like panting even at rest. It is not continuous but comes and goes. My MDS noticed it as well as the mammogram tech. Have any of you who have had the surgery noticed this? My MDS said there was no correlation to DBS and encouraged me to see my GP. Thanks! Micki
  25. I am a 68 yo male in good health with the exception of PD. My diagnosis was in June, 2014. I am on a Dopamine Agonist and MAO-B Inhibitor only. Last evening I was sent a questionnaire by MJFF regarding my level of interest in participating in a Vanderbilt Research Project intended to determine if early after diagnosis, DBS is effective in slowing the disease progression among other things. My interest level is high. However, my question is what is the possible downside of participating other than the normal risks associated with DBS? BTW, last year I was at the White House when Dr. Okun received his award. I have read both books and have the last on audio as well as in print.