I'm new to posting. Have had PD diagnosed in 2012 after I cared for my husband and son with Huntington's over a period of 26 years, so I know how long and complicated neurological conditions can be. I have done pre-op for the Deep Brain Surgery and qualified for it, but my issues are not typical. I have fatigue, freezing of gait, and Orthostatic Tremor (higher tremor in my legs that means I can walk but need to sit when I am standing still or I will fall. ) As I understand it, the DBS will not improve gait but will help rigidity. I think the neurosurgeon is curious to see if he can stop the higher frequency leg tremors. I had more stamina 5 months ago when I was offered the surgery, but by the time my neurologist got the team together she wanted, I have become more anxious and less convinced that the ordeal will improve the quality of my life as I will still have fatigue. Is it more worthwhile just to slow down the progression with medication and gamble that dyskinesia ( involuntary movements that develop when meds are maxed out) does not occur? Since my mother had rigidity and not classic tremors , I feel I will have the same scenerio. DBS has risks, also. Any out there with rigidity who did the surgery think it was worth it?
On the fence over DBS: I'm new to posting... - Cure Parkinson's
On the fence over DBS
My goodness, we have three Chihuahuas a small medium and a large one. Very cute dogs and a nice picture. Myself I think DBS is a very serious operation, have you thought of trying B-1 vitamin for a while and see how you're doing with that. You can always get a DBS later on. Mary
Are you on Amantadine? This helped my hubby’s rigidity and back pain immensely.
He is also now on High Dose Thiamin (Vitamin B1 ) and getting good results with that. (Would need to be off Thiamin for surgery, as generally stop all vitamins)
Hope someone has the answer regarding DBS that you are seeking!
Which mg and brand of thiamin ?
Ken is taking Solgar Thiamin 500 mg,
a total of 3500 mg in divided dose.
This brand has a strong taste/smell and we are going to try Vitacost but have no intention of stopping, based on positive results so far.
HL has a thread for High Dose Thiamin, which is very helpful.
Best to also visit:
highdosethiamine.org
The dose should be individualized as
all have different symptoms and needs.
Good luck! KAT
I also get it from same company been on it for 8 months see no difference
I wonder if I am taking right one
My hubby did switch to Vitacost Thiamin HCL 500 mg as very inexpensive and more palatable.
The trick is to find the dose right for you! Generally between 2-4 grams in a divided dose, before breakfast and lunch is what Dr Costantini recommends.
Having said that, Ken prefers to take the afternoon dose an hour after lunch with his C/L and is still seeing new improvements.
He was able to print large and legible on forms and sign his name clearly...small, sweet victory to be able to do that again!
Would not give up on Thiamin HCL for PD, perhaps try Vitacost brand and then increase dose. You wil know
if it’s too much as symptoms get worse. Is it possible your current dose is too high?
Ken also takes Neuro-Mag at bedtime, which prevents leg cramps for him. Good luck!
What a courage you had... I kind of read it on your photo.
Besides, I totally agree with Parkie13-Mary.
Let me preface this with the fact that I have been facing the same issue. But nobody on this board is going to like my answer. And for every MD that may peruse this board take notice.
My answer: I wouldn’t do it. Modern medicine's answer to Parkinson’s disease is to stick a couple wires in my brain.
Isn’t that pretty much what they did back a few years ago to get people to settle down? Except I think they stuck the wires or the electricity in the front.
I would recommmend mannitol for apathy and fatigue also look into thiamine- both are natural and no harm caused. Try before you go DBS be my opinion. Good luck
Great option! I had it done 4 years ago and it gave me back my life!!
I for one had dbs over four years ago and found it nothing short of miraculous. From unable to walk at night or the morning (had to use a bed urinal) due to chronic dystopia to walking without a second thought. I am about five years into dbs (ten since first diagnosis) and admittedly the benefit is just about gone but I would not trade those five years for anything.
May I ask what you are taking for dystonia and freezing of gait besides the usual carbodopa-levodopa that helped you for awhile ?
The dystonia is still relatively at bay with the dbs. My problem is at send of day then rytari (an extended release form of carbadopa/levodopa wears off for the day. That leads to general fatigue Ana heaviness in the legs that approaches dystonia but never quite gets there. Speech becomes further impaired and mental acuity diminished. This lasts for two to three hours after which I can function almost at “normal” - say 60 to 70 % of daytime w/ rytari (and amantadine. I have not had a problem with freezing. I will warn I have had some adult compulsions issues since the dbs but with eliminating dopamine agonists (ropinirol (sp?) and tapering down on the rytari the compulsion issues have abated. You should, of course , discuss with your neurologist.
You have had it pretty rough! I would advise a second professional opinion, from a movement disorders specialist. I have not had the surgery, but the medicine has helping me greatly with rigidity and freezing of gait. I've never had orthostatic tremor. If you have doubts about the surgery, why not try the medicine first, for a while, and wait for the surgery, if the medicine doesn't help you. I have not had dyskinesia with the medicine, and I've been on it a while.
What meds do you find help the rigidity, freezing of gait, and lack of dyskinesia? These 3 problems are not always fixed by DBS, which seems to focus on tremor control. As I only have some rigidity and freezing of gait, I would really like to go the medicine route before committing to invasive brain surgery. Medtronic dominates the medical devices used in DBS in the US,so you only get one perspective. I understand there is another DBS protocol called Intrepid using smaller ipg controllers. It all comes down to the most profitable agreement between manufacturer and hospital.
Not sure what I'd do re: whether to go ahead with DBS or not, as I have not undergone that surgery (was actually rejected due to being not "bad enough" yet, and perhaps having a non-tremor subtype of Parkinson's - most of my problems are non-motor - constipation, rigidity, speech trouble and brain fog). However, I know a fella in my boxing class who has had DBS surgery, and he found it gave him his life back! So, I would try it if the benefits outweighed risks. As for help on dyskinesia, I recently read about something that is helpful for that, and it is also free and abundant right now in August on our coast. Blackberries! If you drink blackberry juice, or eat a lot of these berries, it is supposed to help with your levodopa-induced dyskinesia. Check this out:
ncbi.nlm.nih.gov/pmc/articl...
Best of luck with it all!
I will reply as soon as I rest. Just read your post with great interest. I too have the same difficult decision ahead. My neurologist offered DBS. And only DBS. My brother also has Parkinson's disease. He underwent DBS (2 leads) surgery without complications. But time to complete the pre-op appointments with the "team" of specialists including psychologists to make certain he was free of depression and would be ready for surgery. I did finally meet the specialist in charge of DBS at Wake Forest Baptist in Winston-Salem NC. He spoke only about DBS. Please search for advanced DBS options available for patients worldwide going on NOW in Switzerland. Rigidity 1st symptom. Legs freezing in place. Or shaking uncontrolably. Times when I must resort to my wheelchair or trekking poles= strenuous and fatiguing. I would like to try Xadago before undergoing complicated and dangerous brain surgery. This involves stopping Azilect (1mg) 2 weeks prior to taking Xadago.) You can discuss IBRIJA with your neurologist. IBRIJA gets me up on my feet for 1-4 hours. Clears brain fog instantly.
Most annoying side effect for me is dyskinesia. Absorbed through lungs. Two capsules each 43mg = 1 dose. Inhaler included in your kit each month. You are allowed 5 doses a day.
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