25 signatures reached
To: NHS Scotland & Shona Robinson
Pulsatile Tinnitus is NOT Tinnitus
Everyone has heard of tinnitus but there is little awareness of Pulsatile Tinnitus. GP's, ENT's and Doctor's at A&E are turning away patients and diagnosing tinnitus. Pulsatile Tinnitus has now been recognised in America as a separate symptom and has its own diagnosis code. Pulsatile Tinnitus can be a symptom of a serious underlying medical condition & Doctor's can find the cause by taking appropriate investigations. Our Doctor's in the UK require more information on Pulsatile Tinnitus to support their patients. A new diagnosis code for Pulsatile Tinnitus is in urgent need. You are signing this petition in the hope that Doctor's in Scotland, England, Ireland & Wales will follow the US in creating a new diagnostic code for Pulsatile Tinnitus.
Why is this important?
Imagine having a sound in your head that you hear every minute of every day. The sound is a heartbeat noise very similar to a baby's pre natal ultrasound, whoosh whoosh whoosh. It never leaves. Music, television and children screaming does not drown the whoosh whoosh whoosh out. It never leaves. Imagine visiting your GP, A&E and several other doctor's who all tell you its normal and its Tinnitus and nothing can be done. You know the sound you hear is not normal, it doesn't ring, it doesn't sound like a bell or a buzz, the sound pulses in time with your heart rate and reminds you of a baby's ultrasound. This is exactly what has been happening to me for 5 years. I have been labelled as having anxiety. I researched medical papers, paid for private scans and had my scans reported on independent of the NHS. The diagnosis was a missed vertebral artery dissection which had created a double lumen in the artery causing the turbulent blood flow sound in my head. My doctor's chose to ignore the independent doctor's reports. The reports were from a very well known institution in New York and a well respected professor in Neurointerventional surgery & radiology. I pressed my doctor's further on why I continue to hear pulsatile tinnitus and I was sent for another opinion which resulted in being diagnosed in June of this year with a colloid cyst in my brain. Doctor's under NHS Scotland still have not clarified if the sound I hear is from my vertebral artery dissection or the colloid cyst. I have suffered Pulsatile Tinnitus for 5 years consulting with over 30 doctor appointments in trying to gain a diagnosis and not 1 doctor had an awareness of Pulsatile Tinnitus. If our doctor's have more awareness it could potentially save patients lives. Pulsatile Tinnitus can be a symptom of cervical artery dissections which cause many strokes in the under 40's, it can also be the cause of arteriovenous malformations, brain dural arteriovenous fistulas, carotid stenosis amongst many other vascular conditions. The sound has nearly destroyed my life, I have fought every single day to distract myself from hearing it. I do not want another person to fight the struggle I have. Most conditions can be treated to stop the pulsatile tinnitus. We need more awareness in the NHS of Pulsatile Tinnitus and to separate it from its cousin tinnitus. I am asking that my Scottish government will look at creating a diagnosis code for Pulsatile Tinnitus, my GP notes state I have tinnitus and I believe this has hindered investigations into my symptoms.
How it will be delivered
The petition will be delivered to Shona Robinson with a view to it being shared in the Scottish Parliament and discussed with medical professionals to raise awareness that Pulsatile Tinnitus is not Tinnitus