VAD CAD Club

I seem to have survived from a stroke that I suffered in April 2000, diagnosed as a Lateral Medullary Infarct caused by the Dissection of the "Right Vertebral Artery". For twelve months I have been suffering from attacks related to neck movements and all doctors I consulted chose to ignore my plea.

• Right sided blocked Sinus since 1975
• Tinnitus since 1978
• Hypertension since 1989
• Sleep apnea since 1990
• Hiatus Hernia and ulcers since 1992
• CAR CRASH WITH WHIP LASH IN 1994
• Increased Platelet count
• Migraine with visual Aura in 1994
• Total loss of taste for a week in 1994
• Continuous burning and dryness of the mouth

My GP did not put the symptoms together and link it to neurological problem. Instead I was seen by a respiratory specialist, gastroenterologist, and cardiologist. In the end I got called a hypochondriac.

I switched to a different GP in March 2000, who sent me to a Cardiologist who cleared me and then a Neurologist on March 28th who diagnosed my problem as Migraine after a CT scan and a Doppler Test.

On 7th April 2000 , I was rushed to RPAH with a severe TIA and discharged after four hours WITHOUT further investigation. WHY WAS I NOT SEEN BY A NEUROLOGIST? WHY WAS MY CONDITION NOT INVESTIGATED?

• Severe Nausea
• Continuous Hiccup for three weeks
• Loss of control and strength in right hand & left leg
• Loss of temperature,pain sensation on right side of face and left side of trunk and left leg
• Severe burning sensation on the right side of the face and left side of the body and leg.
• Slurred speech
• Swallowing problem
• Blurred double vision
• Last but not least - Total loss of balance.
• Platelet count increased to 875

I was heparinised and then switched to Coumadin and sent to rehab but a Hematologist was not called in, despite the high Platelet count, which put me at risk for a second stroke through Thrombosis.

Only God knows how I managed to recover completely after such a complex stroke where survival is Good Luck and almost Full recovery like mine is a Miracle.

Multiple Attacks a Day-Mimicking the stroke in a milder form - call it a TIA if you wish

Since June I have been having multiple attacks causing symptoms where my mouth and tongue have severe pins and needles and severe burning, right eye becomes small and vision gets blurred and at times double, right hand goes heavy and weak so does my left leg and balance is affected.

Neuro-1: Calls it Migraine before stroke
Neuro-2: Calls it residual effect of stroke
Neuro-3: Advises counseling
Neuro-4: Tells me that every thing is fine including my dissected artery.
Neuro-4 : Vascular Surgeon-Suggests PICA bypass after Cerebral Angio.
Conducts SPECT test but refuses TRANS CRANIAL DOPPLER suggested by surgeon in USA
Neuro-5 : Stroke specialist, endorses Surgeons view though this type of surgery not performed at his hospital for over 16 years.
All above Neuro's refused to investigate my NECK.
Neuro-6: Advices Sydney doctors are better.
Neuro-7: UK - suggests neck should be investigated
Neuro-8: USA- Vertebral Artery Bypass Specialist. Says no to PICA bypass. Suggests neck be investigated for either blood flow or nerve related problem
Neuro-9: Another Neurosurgeon. Endorses PICA bypass after spending ten minutes with me belongs to the same club as surgeon one
Ortho-10: Not much he can do as it is a vascular problem
Neuros-10to15: In India . Say no to PICA Bypass as PICA is non existent. Agree problem is in the cervical spine- but no diagnosis. Recommend use of Collar. Some HELP.
Neuro-16: SINGAPORE: Conducts Trans-Cranial-Doppler-Test and concludes that the problem is not FLOW related as postulated by the surgeon nor Stroke related as diagnosed by all Aust Neurologist, but a nerve in the Neck being compressed causing a "Neck-Tongue and Eye Syndrome." which was first postulated my Neuro-1.
I am going back to Neuro No-1 for further treatment as he is the specialist for NECK-EYE-TONGUE Syndrome.

I suffered for 12 months and went overseas for a diagnosis just because our specialists refused to listen to what I had to say.

They were the specialists and knew what it was all about.
It was all in my HEAD and could not be in my NECK.
At least now I know I can seek help from a Cervical Spine Specialist.
It took an incredible Tenacity to find a proper diagnosis.

At the end of the day the doctors who saved me and supported me are my GP & my Hematologist

It is now 24 months post stroke. I stayed with one neurologist who was absolutely convinced that I was having post stroke seizures. In the last twelve months, I have been treated with every neuro drug on the shelf. Sandomigran, Tofranil, Deseril, Tegretol, Rivotril. Lamictal, Sibelium, Neurontin and also dexamphitamine and Cipramil for depression and sleepiness.

I am still in search of a specialist who will thoroughly examine my neck to see if either a nerve or an artery is getting compressed with head rotation and flexion.

I am now seeking a consultation with a neurologist in another state. If it does not work out I am going to UK for independent investigation.

Just wish me luck. Finding a good Doctor is just as difficult as finding a good car mechanic.