Jump to content
helplinedonate

janvier

Members
  • Content Count

    68
  • Joined

  • Last visited

Community Reputation

5 Neutral

About janvier

  • Rank
    Advanced Member

Recent Profile Visitors

960 profile views
  1. janvier

    What exactly can the DBS do?

    As a continuation to this discussion, considering the inevitable progress of the disease in how many months or years can the patient exploit the full capacity of the DBS? As time goes by is it necessary to change the simulation parameters such as the voltage or the current in order to suppress the tremor? Apart from the physical limit of the device which is typically about 10 mv, are there other limits to be respected? Should such a decision be taken solely by the programmer and/or by the neurosurgeon or in consultation with the patient.?
  2. janvier

    Wrong connections - is it possible?

    Sorry dear Doctor for another belated question. If the wrong connections as I described are done then is it possible to simply take the programmer assistant and correct it soft warewise
  3. janvier

    Gpi and levodopa

    Dear Doctor, From your words, I understand that DBS has no impact on talking and thinking.You are talking about other therapies. What are they? Do you mean for example LVSN for talking and a brain training - fluid intelligence therapy for thinking?
  4. janvier

    DBS Programming / Configuration

    How long is such a session and who organises it. How many sessions are required and is the producer representative present in the session. Thanks
  5. janvier

    DBS Programming / Configuration

    Some questions please? Firstly is there a separate programmer specialised in for example St Jude brio or any other IPG? Do these programmers always do the work and not the neurosurgeon. Does he just superwise or is he not there at all. What is the step by step procedure.
  6. Dear Doctor? Based on your experience, is it possible for a neurosurgeon to connect the left side of the battery to the left side of the brain and the right side of the battery to the right side of the brain ie do the opposite of normal connections? If it can be done will it work? Can the IPG be modified and set as normal? If such a situation occurs can it be corrected without surgery? Thanks for your answer.
  7. janvier

    Nightly bladder problems

    I have the same problem. In my case ıt happens when I need a little bit of the necessity to urinate at daytime or nighttime and decide to go to the restroom. Suddenly the pressure rises terribly and I must urinate. When this happens at daytime it is not that bad. But if at night than sometimes I can not tolerate any more and that is it. This started 3 years ago and became more and more frequent. Now I have a solution I wear a baby napkins for individuals at night. Due to the napkins' psychological support I assume there has been no problem since then. I would recommend it.
  8. 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?
  9. As a contributıon to the subject, I have had PD for 21 years and still active and doing my researches on internet. However even after bilateral STN I am having soft voice, articulation, drooling, difficulty in finding and pronouncing words, loss of short term memory, decrease in mental capacity and poor balance, and dry eyes and mouth. With LSVT I solve the voice and articulation side provided I do the daily exercises regularly. The memory problems seem to be less with intensive training of the brain using certain proven software. For balance I have had Posturography therapy which helped a lot. For dry eyes my ophthalmologist prescribed eye drops to be used daily. I was not taking any serious medication, but the last time I consulted my doctor he prescribed Madopar a quarter every 4 hours. This improved the situation considerably. Finally I am still trying to live a normal life supported by modern medical technology.
  10. janvier

    Newest DBS system st Jude's

    I have St Jude brio rechargeable. I agree that as new companies come into the market Medtronics will have to increase functionality and decrease cost which will be to the advantage of the consumer. Presently as far as I know there are 3 companies on the market: Medtronics the and 2 competitors namely St Jude which became Abbot this year and Boston scientific. Assuming that the electrods are placed optimally, You need a good programmer to work with you hours long day after day. It is an iterative long process which may take 3 to 4 weeks.
  11. This is a relatively old thread. But still assuming some people will read it, I will respond. I have PD for 20 years now. I had two DBSs. One in 2006 unilateral VIM and one in 2013 bilateral STN. The first one solved all the tremors on the left and I gained 5 to 9 years. At that time there was absolutely no symptom on the right, As years passed I started having tremors on the right . At a certain point they became intolerable. The Neurosurgeon suggested that we do bilateral STN because bilateral VIM is not done due to balance problems. I agreed. STN was done leaving the existing electrodes in VIM In order to avoid unnecessary complications.. But this time things did not happen as I expected. First I had involuntary movements on the left and balance problems, now weak voice, dry eyes and mouth and swelling legs. The IPG was totally reprogrammed one year later after surgery. Now every quarter the program is modified. I am using eye drops continuously, wearing tight socks and keep with me always a small bottle of water. PD is not an easy illness. You have to fight and that is what I am doing now. I hope this helps.
  12. janvier

    Newest DBS system st Jude's

    Hi everybody,, yes Lopez I have St Jude and it works well. St Jude is now Abbot. They are quite sensitive to questions and comments. In fact one year after the surgery I had some timing problems with the recharger. It recharged but in a disproportionate way. This was annoying. I told Abbot and they gave a new one right away and took the old one.
  13. janvier

    Can dry eyes be treated.

    Dear Doctor, Until recently I did not know about the relation between dry eyes and psrkinson"s.I hev PD for the last 20 years. I have had one VIM and one bilataral STN. The STN is stimuleted. On 2016 I started having dry eyes and seeing object double, surfaces covered with geometric shapes and edges and coners with moving little insects.I know that as regular treatment I have to take eye drops to luudricate the eyeball I have the following questions: 1. Is there a strong medication or exercise or surgical instrument that will speed up the initial treatement That can get the eyes back to normal and then start the regular maintenance. many opthalmologists have very llittle idea on this relationsip between the two diseases. 2. Is there any relarinship between dry eyes and diurnly halucinations. Since I tried to write this looking at a screen wit everything doubled, there are probably typos. Sorry for that. Thanks,
  14. janvier

    Voice weakness

    Look at my experience. With unilateral VIM DBS I had no trouble.The moment I had bilateral STN side effects and all kinds of trouble started. These are weak voice, slurred speech, cognitive decline like the lost short memory, not easily recognizing places recently visited, words escaping while talking, hallucinations and itching scalp. Each one of these is a discussion subject. The words escaping are searched and found automatically by the brain and presented to you later after the speech is finished. This remembering period may be from a few minutes up to one day. These symptoms are either coming from the PD or the drugs, In any case they are there. We should try both speech and other therapies to deal with them. Change drugs if possible and play around with parameters of the DBS. I hope this helps, so that we are not just a bunch people suffering from PD but individuals trying to help each other to suffer less and help the Neurologists to understand the disease better.
  15. My experience is that the tremor on the left side started first. I could do everything with the right side. Then for 9 years there was nothing on the right but increasing tremor on the left. It became intolerable and I underwent unilateral VIM DBS and the tremor suddenly stopped. for the first few years after DBS all was normal. Then tremor started on the right side and eventually became intolerable. Thus 7 years after the first one a second DBS was done as bilateral STN. Now I am OK except for drooling and speech problems. I hope this story helps.
×