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MIMILASTER last won the day on June 4

MIMILASTER had the most liked content!

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    near Bordeaux (France)

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  1. Thank you, Dianne, for this very useful information. I had never heard of websites such as patientslikeme. It sure will be appreciated by all. Mireille

    Good morning!!

    Dear JB, I am glad to read you are doing ok, although I sense some impatience on your part to finally get started with programming. It is indeed a different procedure from what is generally reported. But it is definitely a better idea to wait until all side-effects from surgery have subsided before starting sampling the various options available for stimulation. You reap the benefits of years of experience with previous patients. If they try certain settings while the effects of surgery are still there, they may draw false conclusions from these initial attempts. That’s how I analyze this difference in procedure. In my case, stimulation was started within two weeks after surgery. I think the support of someone who has been operated by the same team and went through the same procedure is indeed the best assistance you may get. Do not hesitate to ask questions to the doctors who will in charge of programming your stimulator. Have faith, everything will be allright. Take good care of yourself and keep us posted ! Mireille

    Drug Interaction

    Hello Mark, I suppose the same applies to osmotic laxatives ? Regards, Mireille

    Good morning!!

    Funny, EM, I am currently visiting your country ! I am in Cork. Love Ireland, such friendly people. mimi

    Good morning!!

    Maybe you are going top fast. You should rest, rest, rest . Hang in there ! You ´ll make it big hugs Mireillle

    Good morning!!

    I had a first DBS in March 2000, but one electrode was suboptimal. So I had resurgery on that side in 2002, which improved the result quite dramatically. Resurgery was done in Grenoble by the Benabid team.

    Good morning!!

    hello Jb CONGRATULATIONS ! You have now joined the "International DBS Club". I am delighted to hear that you are doing well. I remember how strange it is to feel good at last and not be able to rejoice totally for fear it is only temporary and due to lesion effect. Good for you if you can sleep even if it is during the day. Could your shoulder problem be a consequence of feeling tense during surgery. It would make sense that keeping the same position for so many hours (my first DBS was 13 hours !) would create tensions in your body, in your case the shoulders. Sleep as much as you can and keep us posted. I am so happy for you. Regards, Mireille

    Good morning!!

    JB, I wish you all the best for May 8 and May 10. I will be thinking of you all day (won't forget the 6 hour time difference !). I am sure you will be doing fine. Remember you are under the best hands you could think of. i'll send all good vibrations possible to benefit you and the operating team. Keep us posted on how you are doing. Big hugs. Mireille

    Good morning!!

    Hi JB, It would be nice if you did not have to wait for DBS as long as initially scheduled. Once we have made the decision to have surgery, we don’t want to wait for ages ! We would prefer to have it done as quickly as possible. At least that how I felt. One thing you have to be ready for is the « micro lesion effect » created by the insertion of the electrode into the brain. Right after surgery, you feel great. Coming out of the surgery theater, I remember feeling ready to go out and eat at a restaurant (surgery lasted 11 hours so I was kind of hungry). BUT this overwhelming good feeling is only temporary. This can prove very disturbing and disappointing as you’re made to see how well you can feel, only to fall back to a less favorable state. This great feeling can last a day to a full week. [ I'm not too sure about the average duration, you would need to ask the DBS team ] So don’t be overexcited right after surgery you may feel a lot better than you will in a day or two. BUT the good news is : there is a positive correlation between micro lesion effects and results /improvement degree. JB, I enjoy reading your posts detailing your "activities". THe maple syrup season brings back fond memories of a year spent in Ottawa, some 40 years ago, the "sugar shacks". That was so much fun! Take good care, Mireille

    Good morning!!

    Hi JB, I am following you on your path to DBS STN. I know these last few months will seem like years, as you are so anxious to have it over with. I would recommend you start a diet as most people put on weight after DBS surgery. I did not heed my doctor's recommendation as I had never had any weight problem ever in my life and did not feel this caution was directed to me. That was a mistake. Weight control is a constant battle ever since surgery. It is important you take this into consideration. Let us know when will D day be so we can send good vibrations in due time and in the right direction ! Take good care, Mireille

    Lithotripsy and DBS

    Hi Dr Okun ! I thought whenever you are required to turn your DBS off, you were also supposed to turn the voltage down to zero. Is this requirement still valid ? Regards, Mireille

    Good morning!!

    Just wanted to give you yet another reason to believe you are in the right hands at the Toronto Western Hospital for DBS. Here is one of their latest publications0 Take care, Mireille Mov Disord. 2018 Mar 23. doi: 10.1002/mds.27359. [Epub ahead of print] A 21-year retrospective study of the Toronto Western Hospital deep brain stimulation cohort. Cubo E1, Rajalingam R2, Fasano A2, Munhoz RP2, Lang AE2, Calvo S3, Marras C2. Author information PMID: 29570864 DOI: 10.1002/mds.27359

    Good morning!!

    Hi JB !

    Questions for next Neuro visit

    Dear Claire, I would suggest before you go any further that you submit your case to Dr OKUN in the forum Ask the Doctor on this site. Dr Okun is a Movement Disorder Specialist who could point to you which aspects in your history could confirm or exclude Parkinson's. So many doctors, even neurologists I understand, do not take Parkinson's into consideration when dealing with a young person. I was lucky enough to be diagnosed by someone who understood at the very first appointment that I was probably a "juvenile Parkinson's". I was 34 at the time. Dr OKUN is a very knowledgeable Doc with a worlwide reputation. He is highly devoted to the Parkinson's community. If he thinks Parkinson's is a possiqbility, then If possible, go to a Movement Disorder Specialist and ask if it is indeed the case. Good luck, Mireille

    Botox injections, anyone?

    I 'm having botox injections for feet dystonia (big toe rising up and foot curling sideways) every four months with satisfactory results. Make sure these injections are conducted by proper expert ( not just any neurologist) under electromyography (which assesses electrical activity of muscles) or better still sonography. Outside its cost (very expensive in France, although covered by insurance) I don't see any negative sides to botox injections. The procedure is not totally painfree but the pain is really minimal. It may depend on injection location and on doctor's skill or experience. Good luck Mireille