Wednesday, 28 November 2012

Temporal Artery Biopsy (2)

Yesterday was a bit of a bad day because I had developed a cold the day before the biopsy and by yesterday had streaming nose and hacking cough which did not help matters at all. The biopsy wound kept bleeding and I had to renew the pressure bandage, but this morning this has stopped and its looking fine! In addition I developed a nose bleed which trundled on for several hours. Presumably all the bleeding was due to the steroids and aspirin - side effects include reduced clotting time (seemed like clotting time = nil)!

Anyway today I feel a lot better and things are looking up! And I hope to be able to wash my hair (gently) in the shower!

Monday, 26 November 2012

Temporal Artery Biopsy (1)

So, Good, it all went well today. Arrived at the hospital well in time for my appointment at 8 a.m. After a short wait (not crowded at that hour!) I was examined by a very lovely eye surgeon who looked about 25!! He examined the backs my eyes very thoroughly using the slit lamp and also tested the pressures ... passing me with a clean bill of health on both!

After another very short wait I was taken into a consulting room, where I lay on an extremely narrow stretcher bed for the procedure:

1. Shaving a small part of the area to be incised and injecting with local anaesthetic. This was a little painful but only for a minute or so.

2. Lying still while he dug around, snipping about to release a small artery. This took a lot longer than I expected ... around 25 minutes.

3. Suturing up the layers.

4. Application of pressure pad and bandage to suppress bleeding.

5. Verbal and written instructions on care of wound with the various do's and don'ts.

6. Results of biopsy in 2-3 days.

7. Sutures out next Monday or Tuesday at my own GP surgery.

From arrival to departure took about 1hr 45 mins.

If results are indicative of Giant Cell Arteritis then I will be taking Prednisone regularly for 12 months or so, at least. If results are negative I will be referred back to the Neurologist.

Pressure bandage can come off tomorrow ... will post pic of the wound then!

Sunday, 25 November 2012

The rain is easing off!

Well the "rain" in front of my eyes seems to have lessened quite a bit now I am on the blasted steroids again! I can only see it now when the light is poor. I rang about my blood test results this morning and all were normal, thank goodness! However, these results do not fit with a possible diagnosis of Giant Cell Arteritis so it will be interesting to see what happens when I visit the Eye Clinic for the temporal biopsy. 

Although many of my current symptoms seem to fit with Polymyalgia Rheumatica and GCA they could also be caused by the presence of Feckit and/or Fuss as they are both skull-based tumours. Anyway, we will see what they say tomorrow at the hospital .......

Wednesday, 21 November 2012

Why is it raining? Is it Temporal Arteritis?

OK. So I can see rain when it isn't raining ... but not in sunlight or bright artificial light. So I get jaw pain (left) linked to chewing or talking too much!!! Headaches have been worse this past three weeks. Other symptoms are the same as per bloody usual, i.e, woken from sleep about 3 a.m. with nausea, headache and, just recently, fast pounding heart rate. Sound like a bad case of hypochondria? 

Don't worry .... don't think that I haven't already thought of that!

However, I did feel that the visual 'symptom' of seeing rain falling outdoors (and in) when it wasn't raining was perhaps something to report to my family doctor? So off I went today. After a thorough discussion of my symptoms where I voiced my concerns that my problems could be due to either Feckit or Fuss, my doctor was concerned that we should first eliminate a differential diagnosis of Temporal Arteritis. This is considered by some to be on the other end of the spectrum of Polymyalgia Rheumatica (PMR).... a condition that I was tested for last year where the results were inconclusive.



Giant cell arteritis is an inflammation of the lining of your arteries — the blood vessels that carry oxygen-rich blood from your heart to the rest of your body. Most often, it affects the arteries in your head, especially those in your temples. For this reason, giant cell arteritis is sometimes called temporal arteritis or cranial arteritis.

Giant cell arteritis frequently causes headaches, jaw pain, and blurred or double vision. Blindness and, less often, stroke are the most serious complications of giant cell arteritis.

Prompt treatment of giant cell arteritis is critical in order to prevent permanent tissue damage and loss of vision. Corticosteroid medications usually relieve symptoms of giant cell arteritis and may prevent loss of vision. You'll likely begin to feel better within days of starting your treatment.


The most common symptoms of giant cell arteritis are head pain and tenderness — often severe — that usually occurs in both temples. Some people, however, have pain in only one temple or in the front of the head.

Signs and symptoms of giant cell arteritis can vary. For some people, the onset of the condition feels like the flu — with muscle stiffness and aches (myalgia) around the shoulders and hips, fever and fatigue, as well as headaches.

Generally, signs and symptoms of giant cell arteritis include:

1.Persistent, severe head pain and tenderness, usually in your temple area

2. Vision loss or double vision

3. Scalp tenderness — it may hurt to comb your hair or even to lay your head on a pillow, especially where the arteries are inflamed

4. Jaw pain (jaw claudication) when you chew or open your mouth wide

5. Sudden, permanent loss of vision in one eye

6. Fever

7. Unexplained weight loss

8. Pain and stiffness in the neck, shoulders or hips are common symptoms of a related disorder, polymyalgia rheumatica. 

Approximately half the people with giant cell arteritis also have polymyalgia rheumatica.

When to see a doctor

If you develop a new, persistent headache or any of the problems listed above, see your doctor without delay. If you're diagnosed with giant cell arteritis, starting treatment as soon as possible can usually help prevent blindness.

So the upshot of all that is that I have had URGENT bloods taken for various tests and an appointment has been made for me to attend the Ophthalmology (Eye) Department next Tuesday for a Temporal Biopsy (more later on that - I am too brain dead at the moment to explain further!).

Due to the risk of blindness if untreated I have had to re-commence steroids at once (Prednisone 60mg daily)  ..... oh joy! - Is it back to hamster cheeks, thick neck, weight gain and manic mood swings? .....

To minimise the risk of STROKE I have been started on regular enteric-coated Aspirin daily ... 

And to PROTECT me from the risk of gastro-intestinal BLEEDING (as a SIDE-EFFECT steroids and aspirin) I have been started on regular Omeprazole (gastric acid inhibitor) daily.

Wouldn't it be simpler to just DIE?

NO! NO! NO! ............ Believe me THAT WAS A JOKE, OK?

Anyway ...... this is all just a safety measure in case Giant Cell Arteritis is the underlying cause of my symptoms.  My own guess would be that it is those little buggers Feckit and Fuss. 

But time alone will tell ..........

Sunday, 18 November 2012

When it's raining? .........

I had the strangest experience last evening. It had been a funny sort of day for weather, a mixture of sunshine and light showers with a brisk breeze. Around 9pm I left home in the car to meet John from transport bringing him back from a 3-day golfing trip. It was twilight and I parked the car and began what was to be quite a long wait. I started to wish that I had brought a book with me, but sat and amused myself by watching the rain falling instead.

The rain was coming down quite fast - very tiny drops, some of which swirled around a little like tiny snowflakes. After several minutes I realised that the windscreen did not appear to be wet, so I began looking all around through the windows and, Yes, I could see the fine drizzle from every angle. Puzzled I got out of the car only to find that it was not raining at all. Although I could still see it falling as I had whilst inside no drops were landing on me or anywhere else!!

I found this really quite scary as I realised that what I was seeing was some sort of hallucination. In due course John arrived and as I started to drive home I asked him if it was raining and he said it wasn't. Once inside I looked out of the window (by now it was completely dark) and could still see the rain and then, having settled quietly in a chair, I found it was raining inside as well! And it continued until I went to bed.

I woke up this morning to a bright and sunny day and found that I could only see the mysterious rainfall if I looked into the shadows.

Naturally enough I have been looking on the Internet for an explanation of the phenomenon of visual hallucinations and it appears that there are a number of types which vary according to cause. One type which occurs in psychologically healthy people is called Charles Bonnett syndrome which has been extensively studied by neurologist and author Oliver Sacks.

'His studies have determined that over the course of a person’s life, there are subtle changes that can occur within the structural set up of the visual cortex, causing one to hallucinate. “There is a special form of hallucinations that could go along with deteriorating vision or blindness… As the visual parts of the brain are no longer getting any input, they become hyperactive…they begin to fire spontaneously and you start to see things,” said Sacks'

Charles Bonnett syndrome usually affects those with impaired sight, who may start to have strange, visual hallucinations, sometimes just of patterns but often more elaborate visions of complex scenes or ranks of people in exotic dress. Perhaps 20 percent of those losing their vision or hearing may have such hallucinations.

Other causes of visual hallucinations include Parkinsons disease, dementia with Lewy bodies (DLB), posterior cortical atrophy, seizures, migraine, certain drugs, errors of metabolism and tumours. 

Features of Visual Hallucination/Most Likely Causes

Simple patterns, spots, shapes, or lines; 

unilateral distribution; associated with headache:               
Migraine, seizure, tumor

Macropsia, micropsia, metamorphopsia:                              

Seizure, Creutzfeldt-Jakob disease

Associated with going to, or waking from, sleep:

Hypnagogic or hypnopompic hallucinations                           

Confabulation of all vision:  

Anton's syndrome

Frightening content:

Psychotic disorder, delirium, hallucinogenic drug

Good insight:

Charles Bonnet syndrome, migraine, peduncular hallucinosis

Nothing I have found so far really fits in with my hallucination of continuous rainfall ........ just another thing to ask the doctor about along with the toothache, tingly lip, pains in ear ....... !!

Friday, 9 November 2012

' I have much ado to know myself '

"In sooth, I know not why I am so sad: It wearies me; you say it wearies you; But how I caught it, found it, or came by it, What stuff 'tis made of, whereof it is born, I am to learn; And such a want-wit sadness makes of me, That I have much ado to know myself."       [Antonio, 'The Merchant of Venice']' 

There is no excuse. I have so much to be thankful for, and so very much to look forward to. And yet I feel like weeping. 

It seems that all the dark and worrisome things in this world are gaining ground. I want to fight against them but I don't know if I have the energy. I can easily understand why people become reclusive. Inner peace and silence is so hard to come by.

I am indeed a 'want-wit' these days!

But family and true friends are the rocks I cling to and it is thanks to them that I do not sink.