Dbs trouble shooting clinics

[ddpd]

Anyone care to talk about the UF@Gainsville location? What about Denver? I had DBS surgery last May and am still not programmed correctly I do not believe.

[Pelley]

I am inclined to believe you. I had DBS done almost five years ago. After a year, two post surgical infections and five brain surgeries it took yet almost another year of visits with their medtronic trained programmers to get all the bugs worked out.

I am mostly pleased with the outcome now. The exception being one thing never addressed prior to the procedure.

PD is a tricky,deceiving,cagey disease that is ever changing. Sometime the progression thrown at you is significant enough to outwit even the smartest Medtronic unit and programmer resulting in yet another trip to your closest programming station. If a patient could be somewhat trained or the device changed to allow for more remote programming??????? Any Ideas????

[moonswife in reply to Pelley]

My surgery was in Jan of 2010. I was followed by an amazing programmer, who would stay in the appointment until he was satisfied I was ready for kicking Mr Parkinson's ass every time I left his office. He retired from Kaiser, as he had reached a 25 year plateau. He now works for another Neurology practice here in Los Angeles. Both he, and another outstanding programmer from Medtronics have kept me able to use power tools. I need a tuneup right now, but it is because my voice has become whispery. It can be fixed. Not to seem to cheery......Mr. Parkinson rolls along like a tank chasing the life in me. He is stealing my balance, my endurance and my stride. I WILL NOT LET HIM HAVE THE FIGHT IN ME. I will build my little trailers as long as I can, even if I have to resort to 20 minute segments of a single hour. Hang in there. Be the tenacious terrier worrying a bone. Get the marrow. Find the right programmer, or move on to a new one. Moonman.

[annmariebaird in reply to moonswife]

Sometimes it is hard to be a fighter, but we must never give up!!!!! Thanks for the kick in the pants, Moonman!!!

[Larryp]

unless your dying stay where you are .I did the Denver outfit a 4 day visit turned into ten days in the hospital . very hard to program long distance . The denver docs went camping the weekend of my extended stay with no contact info

ask your current doc to do a scan to check each implant zone or lead also an mri ( turn unit off for mri )to check placement of leads

i am 3 years into this deal and it seems like i never hit the sweet spot and if i do not for long . Between the meds dbs and the disease it seems hopeless . The one thing i have learned is to lower my expectations of the dbs . I am better than i was before - try turning your unit off for 5 minutes i am sure you will agree

Try adjusting meds instead . Did your doc leave you on meds ?

Dbs will not take care of everything

sorry for the poor typing and all

good luck

[Alorac]

hi im from sweden cant spell so good ill hope you understand.

I got my DBS 22/4 2015 . at first it was perfect but after a while the symtoms are coming back . now suffer from a strange thing I cant inhale and exhale in a normal way . Has anyone the same problem .

Alorac

[shipfitter]

I go to the movement disorder clinic there in Gainesville. Parkinsons is always progressing. With that being said the doctors there are awesome it took 5 months but we found one for me. Now they said sometimes it takes awhile to get it tweaked right. Just remember one thing this isn't the magic cure to parkinsons.

[Cbauer]

Sorry, my finger bounced and I lost my first few lines, so will repeat: ask present doctors to check placement of leads, and consider adjusting meds. If you lose confidence in them, definitely go for another opinion. I am on the west coast and found a great young lady who is a PA, but found my problem right away after a year and a half of poor results. Her name is Shannon Anderson and she is at Oregogn Health Sciiences University (OHSU). If you don't mind traveling, Dr. Okun at the University of Florida is the cutting edge expert and will give an opinion over the Phone after studying your records. But if you do not mind traveling, consider taking a vacation in the sun combined with a personal consult.

Wishing you well. Keep asking. Someone can help you.

[dottie in reply to Cbauer]

Dr Okun is the guy to see for Dystonia; Jerry Vitek is the foremost expert on DBS and Dystonia. He is teaching in Minnesota, I think. I had the privilege of meeting him when he was at Cleveland Clinic. You pretty much have to go on a plane ride to find the good ones.

[dottie]

There is an excellent clinic in Denver. If you are interested, I will get you the contact info. I have a complicated case; spent five years working with a Boston hospital and when I went out to Denver got as good as it gets; the practitioner there is exceptionally talented. Write me if you are interested.

[ancee]

I had my DBS (gpi) at Salt Lake , the University of Utah medical center. They had no luck programming me. I then tried the neuroperformance center in Denver, Not much if any improvement. I am currently in Arizona, scheduled for programming at the end of this month at the Mayo Clinic. They've done an MRI (with everything turned off) and the leads seem to be in the right place. They have all my programming records, so we don't have to start from scratch. Hoping for some positive results.

[llwwd in reply to ancee]

I too had my DBS in SL last Aug. I'm still having a lot of programming problems. I am so much better than before I had DBS, I don't want to sound ungrateful but I do seem to have changed one set of symptoms for another. I would love to hear how you do with Mayo clinic in AZ. Please write back & keep us informed.

thank you, llwwd.

[vivace1017]

My DBS was done in October of 2014 at Wake Forest Baptist Hospital in Winston-Salem, NC. I'm helping test the Boston Scientific Vercise device. It has been a truly remarkable experience. DBS does NOT fix every symptom, but it eases enough that I can live with the rest. A word of advice: if you have PD, you need to find A Movement Disorders Clinic where doctors specialize in this illness. If you are so inclined, volunteer for a timed trial. I've been in them since 2009, and the attention and care I've received has been amazing.

[wks2019]

Sierra closed her clinic in Denver. Only other troubleshooting faclity i know of is UF Florida. Pam is at UF Florida is just as good. Might want to make a visit there if you have problems with DBS. I think it cost about $2000-3000