guess no one has comments about my DBS??

[jester517]

I've posted twice-no one has reponded to my previous posts regargding negative DBS side effects vs. carpal tunnel, worsening of dystonia, fibromyalgia or whatever else is causing my pain and the quadrupling of meds compared to before DBS.  I'd REALLY like to hear comments from a Dr., was hoping someone would share some insight-kind of lost on what to do, where to go, etc.

Thanks.

[loggie]

what is DBS? what are ypur symptoms? what meds. are you taking

[bearsgarcia]

My husband has gone from tremors to dyskinesia.  Doctor wants him to consider the DBS surgery.  His dyskinesia has gotten worse.  He was put on Amantadine, but have seen no change.  I have been doing a lot of research on my own about DBS. Finally I was able to locate and speak to a DBS patient who could answer some of my concerns. Patient would do the DBS again, but had a problem with weight and speech after the surgery.  I am a little confused now, because some of the forums I have been to, give me the impression that you can still have the dyskinesia and have to continue with all these medications.  Would you do the DBS surgery again if you had to look back.

[Calliesue]

Hello.  You posted in 2009; it is now 7/2014.  This year I underwent DBS bilaterally for multiple sclerosis and essential tremor. Let me know if  you would like to communicate.
Micki

[spitfire2]

I am planning on having a DBS stimulator implant probably sometime within the next two months.  It will be for a condition called central pain syndrome, and will most likely (at this point) be on the left side of my brain.  I will see my neurosurgeon this Friday to get some more feedback about things; I recently finished my presurgical testing.  I know our situations are different, but I was wondering if you were happy with your decision, i.e. if the DBS has helped you.  Regarding your MS, is the DBS for pain resulting from MS?  And did you notice any immediate differences while they were doing intra- operative testing to make sure they were placing the electrodes in an accurate location?

My central pain syndrome (CPS) has resulted in chronic pain in upper regions of my face, i.e. forehead and around eyes, and some burning on left side of face.  CPS is a long term result of brain surgery I had almost 7 years ago for refractory epilepsy and a brain tumor.  Thanks for your help, and good luck to you
spitfire2

[Calliesue]

Hello spitfire2. I have recently belonged to the DBS group website and learned a great deal about different peoples outcomes to the surgery.  As all of our situations are different, it is very difficult to say whether surgery is helpful or worthwhile.  I have heard many, many horror stories.
As for myself, I had bilateral DBS for MS tremor (not pain) and essential tremor which effects my entire body. I was awake during the two electrode placements. They did evaluate my tremor during surgery. Each of the two episodes were 5 hours long and extremely uncomfortable.  To this day, I have not received proper programming to control the tremor and people still think I have Parkinson disease.  It has been a very frustrating and long 7 months post three very unpleasant procedures and I cannot tell you that I would do it again. I feel well very seldom and still require oral medications for tremor and walking. I do not walk outside without my walker.
Sorry to sound so negative but it was a very major undertaking and I hope you will be very certain to make the right decision. I did it mainly because my insurance covered 100% and I felt I could not pass up the opportunity. I wish you the very best and would love to share more with you if you like.
Calliesue