Has anyone else been though the ordeal of the tests for the brain stimulation only to be told you Carnt have it YET?...

[CarolCastile]

I am 57 years old and I was diagnosed with pd 3 years ago but my doctor reckons I have had it for at least 2 years before that Back in April 2017 my consultant said I seemed to be a perfect candidate for DBS would I consider it. I didn’t have to Think twice. I take Sinimet,Ropinirole and Rasagiline Accord and I suffer with not very pleasant side effects plus I was getting less and less on time from my medication My consultant referrd to a doctor she knew and he agreed on the fac of it I was perfect for surgery as my main pd symptom is tremors He arrragged for me to tak several tests over the next few months One of them being admitted to hospital and not taking my pd medication overnight and the following morning till I had completed ceyaon tasks. Not very nice at all but worth it I thought I finished my last test in July 2017 and I must say all the doctors that I had come into contact with assured me I was perfect for the operation and the had no concerns in putting me forward. So I waited until Nov before I got the appointment I had been waiting for for most of the year. I will admit after all the doctors I had seen being so positive I was thinking I was getting the operation But it was a no or a not yet the reason was I had not been diagnosed for 5 years something that was always known it is as clear as day on my record s and he also said I needed to be worse than was. I am 57 I have 4 small grandchildren and a loving husband I want my life back now while I’m still young enough to enjoy it the whole experience has left a very bitter taste in my mouth. Oh and what did the good doctor advise. You guessed it more sinimet Great more side effects....:anyone have a similar story or was I just unlucky?

[lempa_nik]

"When one door closes, another door opens." How many other options have you seriously considered besides the musty old standards of pharmaceuticals or DBS? Have you pursued, or looked into a) intense exercise, b) supplements, c) Mucuna Pruriens, d) Qi Gong or Yoga, etc? Although this rejection is painful, and I understand your bitterness, it may well be a golden opportunity to rev up your initiative and take control of your own healing . . . if you haven't already done so. Many people on this site have done just that, to varying degrees, and are eager to cheer you on, and encourage you.

[CarolCastile in reply to lempa_nik]

Thank you for your reply. I go on the treadmill 20 mins every day and I use hand weights to strengthen my arms. I am looking into yoga and meditation so maybe as you say it might in the long run be a blessing

[movinngroovin]

Find a doc who will do it . Love mine! Mo reason I can see why not. Maybe a University hospital/ I had mine done at UVA-Dr. Jeffrey Elias

[Donzim]

In the US, docs like to stay within the FDA guidelines. The guidelines are established by the studies. EX: if a procedure or product is tested on a group of people between ages 35-65 with a diagnosis of a certain type and certain characteristics and it is found to be a successful treatment, then it can go to the FDA for approval. If FDA gives approval for use it will be for that group of 35-65 yr old, etc. with the same characteristics.

This does not mean that a doc cannot recommend it ‘off-label’ for people who do f fit into the demographic of the group.

Our 4yr old grandson had multiple seizures all day from meningitis and subsequent strokes. At the time VNS implant was only approved for children over 12 because that was the study demographic. Nevertheless we found a group who would consider doing the implant off label- one of the largest and most prestigious epilepsy groups in Atlanta. It was a highly successful procedure.

That of course was before Obamacare so don’t know what happens now. The point is that you need to know the source of that 5 year requirement...is it insurance or doctor timidity or your hospital CYA rules or what? Then tackle finding out where you need to be to actually be qualified. Then tackle getting around the rules. Always ask about the source of a decision....don’t be shy. Your doctor puts his pants on one leg at a time and is responsible to answer your questions. Go back to some of those docs who thought you were a candidate. Don’t badmouth the doc who told you no....docs don’t like talking about another...just tell him you are having trouble understanding why you were turned down, especially after he thought it was such a good idea. Ask for help understanding the five year rule. Ask if he knows how to get help.

[CarolCastile in reply to Donzim]

That I is a very good idea I will ring for a appointment first thing Monday morning thank you for your reply

[S70AWD]

I suspect it's the insurance company rather than the doctor.

[mistydog1]

DBS can also cause some very negative side effects. Usually that procedure is reserved for when all alternatives have been exhausted. If you are exhibiting bad balance problems then your candidacy consideration for the procedure decreases.

[etterus]

I was told that I could be subject to the nocebo effect which is the opposite of the placebo effect. They told me to try psycho therapy which I did for a year. After I completed that I was cleared and did very well. What reason did they give you?

[rodcarman]

Don’t be too disheartened. I put myself forward for DBS and was held back at first. Eventually I was put forward for DBS and accepted but for administrative reasons and due to an aborted operation a long time passed by between the tests and the operation. I now recognise that if allowed to I would have had it too early. The operation is arduous and I think your consultant will be taking account of all these factors if he has long experience. I was diagnosed in 2009 and had the operation last week.

Keep pressing and I am sure your turn will come.