DBS Surgery is NOT a cure!

4 DAYS TO DBS Surgery

Well the QE Hospital admin staff certainly is surpassing all expectations. They should be awarded the UK Title as

“THE MOST DISORGANISED USELESS DON’T KNOW THEIR ARSE FROM THEIR ELBOW DEPARTMENT IN THE COUNTRY”

I have lost count of the number of phone calls now from various people at the QE. Everyone telling me a different day or time I should go in. We are now told to go in on Monday 23^rd at 2pm? I’m not holding my breath just yet, there is while to go!

OH and still nothing in writing for the biggest hospital appointment of my life!!!

 

I want to talk about DBS surgery and explain what it is actually going to do for me. This is important because I have spoken to people about it who think it is a cure – IT IS’NT but everything will be explained.

Parkinson’s Disease is a debilitating, degenerative condition and currently there is no cure. There are many types of medication that can control, stabilise and help the condition. Unfortunately because the condition is constantly degenerating the medication generally only has a certain working time span (I was told about 10-15 years)

A very important point to make here is never forget the amount of people, organisations, charities and time being spent on developments and research to find a cure. And if not a cure at this stage exciting new medication, surgeries and treatments.

 

WHEN I WAS DIAGNOSED I WAS VERY NIEVE AND DIDN’T CONSIDER ANYTHING THAT WAS GOING ON OUTSIDE OF MY WORLD. I THOUGHT MY LIFE WOULD BE OVER IN 10-15 YEARS!!

LOOK NOW I’M GETTING SURGERY THAT WILL MAKE A BIG DIFFERENCE, HOPEFULLY GIVE ME A BETTER QUALITY OF LIFE WITH MORE STABILITY AND LESS PAIN

 

Deep Brain Stimulation Surgery (DBS) I am not going to attempt to describe the technical detail of DBS, should you wish to you can get very detailed explanations on Parkinson’s UK or Parkinson’s Disease Foundation web pages.

 

The surgery in my case and I see it is a replacement for the medication I am taking. My medication has increased over the years as its effectiveness has worn off. 2 years ago I was taking a stalevo tablet about every 5 hours, I am now taking them every 2.5 hours and sometimes less.

The problem with this is my day is peaks and troughs, no stability in the control of my issues through the medication. If you recall I discussed my ON/OFF Times earlier.

 

If I take a tablet every 2.5 hours and I am awake for 16-18 hours a day that breaks down to 7 x 2.5hours.

If I get 1.5 hours in each x 7 that means I have 10.5 hours of ON time in my 18 hour day

 

As I said the problem is it can be all over the place. The surgery we hope not only replaces the medication (maybe not completely) but stabilises your condition. We are also hoping the OFF time will reduce by circa 50%.

This could mean from my 18 hour day I could get 14 ON hours which would be wonderful. The shortfall would be managed with some medication.

 

Hopefully that has explained why the DBS surgery is a good option for me and worth any risks that are associated with it.