Summer 2016 Update

As it comes to the end of summer and nearing 4yrs from when my symptoms first started I am in a dark place.  Dark because my headache has never subsided not even for an hour and the more I exert myself the more pressure and pain emits from the side of my neck/base of my skull including the short sharper pains.  After not working for nearly two years I have taken up part time employment.  Not being entitled to any benefits as I don't have a diagnosis has been a huge strain. Nearly having to put our home up for sale was the last thing I needed. I've had to take a job with lower hours and wages but its a start.  I just need to accept that until a doctor has any sort of empathy and decides to carry out an angiogram in the hope of fixing my artery I'm going to be living in this state for the rest of my life and comes with that a lower grade job.

I finally received an appointment for The National Hospital for Neurology & Neurosurgery in London through the post on the 22nd May 2016 to see Dr Matharu or a member of his team on the 18th January 2017.  As I've mentioned in earlier posts this concerns me as I have lost trust in Doctors and Dr Matharu is a friend of Dr Tyagi and has written headache reports with him.  I personally would of liked an appointment with a Neurointervention specialist who can tell me exactly what is on my scans and can link my symptoms as Dr Maksim Shapiro has done from New York.  I am considering being seen at Queens Square Imaging Centre who I have previously been in contact with but again I have reservations due to doctors knowing each other.  I just want one doctor to say "I am sorry you have suffered an artery tear and it has not healed properly and you have been left with a false/double lumen, hence you have these awful symptoms, we will try and help fix this by speaking first with Dr Shapiro in New York then we can move forward"  And then I fell out my dream from the big fluffy cloud and landed on my head and realised this is the Nhs with some doctors who choose to take no accountability with no transparency when things are missed or delayed with a diagnosis.  Please note I state SOME doctors, I have actually met some fantastic doctors through out my years. I've just been unfortunate that the few doctors I have came across have no understanding of what Pulsatile Tinnitus is and have been unable to link all of my symptoms to one underlying thing causing my symptoms

I look forward to my appointment in London and spending all my recently earned wages to get there, one thing for sure is I am armed with information, so much information they won't be able to fill my head with jargon that I can't understand as previous doctors have done because I've learned the lingo. Yep the vertebral artery branches off from the subclavian artery, it weaves in between the cervical spine towards the brain, the vertebral has several smaller arteries branch off before reaching the basilar artery leading to the communicating arteries forming the circle of Willis. The circle of Willis is formed with several arteries meeting in an almost circle hence the name.  Honestly the arteries and their jobs is pretty amazing and can keep me occupied for hours reading about them.  I am readyfor London, I am Whooshing Whirring Wanderer ready to take on the world oh and any doctor who dismisses me. 

All for now your friend Whirring Wanderer
ps look out for my facebook page in the next month about Pulsatile Tinnitus awareness

Spring 2016 update

Having had no response from my Neurologist since October 2015 I emailed Dr Tyagi on the 13th April for an update on the funding and referral to London.  Dr Tyagi responded that he had written a letter requesting funding some time back in September 2015 and would chase that up and he apologised as he thought he'd already replied to me. I spoke with Patient Advice Service Scotland at Citizens Advice Bureau and they advised contacting the Complaints department.  I contacted the Complaints department asking if they could find out what was happening with my referral.


On 25th April Dr Tyagi responded through email that he had looked into my "query" ie the complaints department had been in touch with him. He seemed to think we communicated through email in September last year which we did not (I have all emails between us)  He also seemed to think I had told him I was going to New York to have my artery looked at which I did not.  He was able to state that funding was approved back in September yet provides no explanation on why he did not communicate this to me.  He is unsure why the referral was not done but said it was possible that he did not do the referral as an oversight or the referral was not typed up.  He assures me that the referral has now been done.


I feel I have been let down again by a public service that is supposed to support its patients.  Not to mention the other mistakes that's been made!  I could scream, shout and swear or just go and buy a large bottle of Grey Goose Vodka the latter seems more appealing and less stressful.




Whirring Wanderer

PULSATILE TINNITUS A SYMPTOM OF ARTERY DISSECTIONS

A few medical reports of Vertebral Artery Dissections


http://onlinelibrary.wiley.com/doi/10.1111/ene.13031/abstract;jsessionid=C798A3ACC0B6E910D64CB8BF6A03B296.f04t04


http://www.ncbi.nlm.nih.gov/pubmed/15068515 Pulsatile Tinnitus as a symptom of artery dissection.


http://www.acep.org/Education/Continuing-Medical-Education-(CME)/Focus-On/Focus-On--Headache-and-Neck-Pain---When-to-Suspect-Cervical-Artery-Dissection/  When to focus on head and neck pain.


http://www.whooshers.com/2012.09.01_arch.html#1346508616550  A cured patient from the Whooshers community who had a vertebral artery dissection with fusiform aneurysm.  Please look them up on Facebook "Pulsatile Tinnitus Whooshers Unite"


http://www.medscape.org/viewarticle/567644_5 Some clinical findings in Artery Dissections.


www.vertebralarterydissection.com/.../vad-stroke-personal-stories-12.htm  Female age 31 suffered varying symptoms including ear pain and pulsatile tinnitus,VAD diagnosed after 8 weeks.


http://radiopaedia.org/cases/vertebral-artery-dissection-with-left-pica-infarct-1  A 30yr old male who's images are identical to mine with a double lumen being created.  I contacted the doctor concerned who reported on the images and sent my scans to India, my diagnosis Vertebral Artery Dissection causing double lumen.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2588305/ More clinical symptoms.