Hi Robert I found your email very interesting in fact passed on part of to a mum of 16year old who is having this procedure in the near future and didn't know anyone who had had it done. Thank you so much your experience and writing of same will be helpful to him. Much appreciated Margaret Shearer Founder /chair of TM Scotland Support Group
Sent from my Margaret's iPad Tel no 01292 476758 Mobile 07968 461156 > On 28 Oct 2013, at 17:03, "Robert Pall" <robthe...@aol.com> wrote: > > Hi Sandy, > > Just wanted to bring you up to date of the New Jersey Support Group. We > had our 7th meeting on October 6th and as always we had a great turnout. We > ended up with almost 30 people 12 of whom have TM. As always we had some new > members coming for the first time and as always all of them had never before > met anyone with TM. It is great to let them know " we are not alone". We also > had a guest speaker, Doctor Neil Holland who also happens to be my > neurologist. Dr. Holland was responsible for me taking the trial to see if > the Baclofin Pump would be beneficial for me. After taking the trial there > was no doubt in my mind that the pump could greatly improve the quality of my > life. I have now had the pump since the end of June and after a couple of > months of tweaking with the dosage and the time of the dosages, i think I > finally have it right. With my present dosage I will require a refill approx. > every 4 months...no big deal. Doctor Holland believes that the pump is > totally being underutilized for both MS and TM patients. My advice is anyone > who suffers from banding and spasticity have nothing to lose taking the > trial.The trial takes about 3 hours and consists of injecting a small dose of > baclofin directly into the spine.In less than an hour it will be obvious if > the pump will work for you! Please keep in mind that taking Baclofin orally > did not work for me...it gave me headaches and nausea. However the dose being > administered (directly to the spine) is so much smaller that I have not > suffered any of these side effects. I wrote a journal and posted to this site > as well as the 3 sites on facebook so others considering this medical option > would understand what I went thru. For additional information on the pump you > can go the the manufacturer "Medtronics" and learn more regarding the pump > and the procedure. > > All the best! > Rob in New Jersey > Robert Pall > 4 Victoria Court > Morganville NJ 07751
