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Old Dec 07, 2011, 10:14 AM
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Charlie_J Charlie_J is offline
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Member Since: Mar 2011
Location: Sheffield, UK
Posts: 237
A month or two after discovering the newspaper article mentioned above, I approached my doctor about it with a view to having the previous MRI results looked at and explained to me by the ENT department or my GP himself.

He brought up some of the websites I had been researching on his computer and we read through them together. He said it was compelling and said he would ask about the MRI as it wasn't on his system and would refer me to the ENT.

Today, I have received a letter which means I can call to get an appointment with them.

I have in the meantime researched thoroughly and come up with a list of conditions that can cause pulsatile tinnitus, for which there has also been an actual cure. These are:

Absence of Vertebral Artery
Aneurysm of Dural Venous Sinuses
Arnold Chiari Malformation and Pseudotumor Cerebri
Carotid Artery Dissection/Stenosis
Carotid-Cavernous Sinus Fistula
Chronic Subclavian Artery Occlusion
Coarctation of Aorta/Aortic Coarctation
Dural Arteriovenous Fistula Resulting from a Clot in the Sigmoid Sinus
Essential Thrombocythemia (ET)
Glomus Tympanicum
High Jugular Bulb
Iatrogenic Pneumocephalus
Idiopathic Intracranial Hypertension
Lyme Disease
Metastatic Carcinoid Tumor with External Compression of a Vertebral Artery
Severe Ipsilateral Carotid Stensosis
Superior Canal Dehiscence Syndrome/Temporal Bone Defect


While they sound scary, some of the above are ridiculously easy to test for (such as testing blood pressure equality), some are expensive to test. Some would require an operation, and some would be cured simply by additional medication.

It's my intention to revisit this particular post and note each time one of them is tested for, as much for my own benefit as for others who might be suffering and looking for guidance.

~~~~~~~~~~~~

In other news, the last time I spoke with my CPN, I brought this up with him since I want to be able to rely on his support and help in formulating a plan of defence and attack in order for my health in this matter to be properly addressed. Straight away, he seemingly joined the ranks of the enemy *sighs*

He mentioned that dreaded term, habituation, and said I should join the Expert Patients Program - an end user support group for people with incurable diseases/conditions.

I'll need to keep explaining it to him and bringing it up, because I need him to be my person I can rely on to remind me where I am and what I'm doing when they talk me around in circles and count on me getting upset so they can refer me to mental health services.

Habituation is a term they like to throw around a lot, and if you have tinnitus yourself, I'm sure just the thought of the word is enough to make you explode. I'm going forward trying to keep in mind these two simple ideas:

I have the same right to health care as anyone else, and I should be able to expect that the cause of this debilitating condition be sought before being told to "habituate", especially when there are previous cases detailing diagnosis and cure.

When other patients present to the NHS and are given cosmetic surgery, it is because their quality of life is extremely adversely affected. Hearing your own pounding heartbeat 24/7 leads to the same decrease in quality of life. Why should I be treated differently? In fact, any tinnitus at all, pulsatile or not, can lead to terrible tragedy.

While I am doing quite all right at present, and not threatening by any means, considering that my suicide risk is made higher by being bipolar, and also by having suffered the suicide of my father and only sibling, it must be irresponsible to refuse to help by testing for these things.

Anyway, that's all for now. GP appointment tomorrow, and CPN on friday. Hopefully, I'll have something to update with.

Look after yourselves, ppl!
Thanks for this!
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