Family Natters

The best way to treat corneal warpage is to stop wearing contact lenses and allow the conreas to heal themselves. Depending on what kind of lenses you have been wearing, your age and how badly they were warped, it may take anything from a week to many months for them to stablise. Some doctors and opthamologists recommend you attend their clinic for regular topography checks during this time. They’re looking for the cornears to regain a normal shape and as this happens your prescription may change, sometimes worsening.

Some people worry about how they are going to manage in this time, but often they find that the blur they used to complain of when wearing spectacles improves rapidly once contact lenses aren’t used at all. The important thing is not to cheat by thinking you can wear contacts for just a few hours and it not effect the healing process.

An increase in astigmatism at this time sometimes occurs, but this is not really a deterioration because it was only hidden by the warpage.

When vision has stablized your opthamolgist may prescribe new contact lenses, refractive surgery, implants or continued use of glasses.

You or a member of your family may twist, sprain or turn your ankle or knee joint during exercise. It may for example happen when you are bouncing on the trampoline, playing tennis or falling off a bike. Often there is a tearing, snapping or giving way sensation which is the ligament being overstretched.

The best treatment for sprains is RICE.

If you or a relative are diagnosed with having a cavernous angioma (also known as cavernous hemangioma, cerebral cavernous malformation (CCM) and cavernoma) you may wish to visit http://www.angiomaalliance.org.uk. This site allows members to get in touch with and learn from each other. Reading other people’s stories makes you realise that you are not alone, as does attending their yearly conference which includes speeches and workshops by experts.

One Response to “Support and Information for Cavernoma Sufferers”

1. 1

   Ian Stuart Ph.D. Says:
   Dear Family Natters,

   Many, many thanks “family natters.” If it’s okay, I will send you further information today by snail. I am so glad about the conference receiving publicity. As well as speeches by neurosurgeons in the morning, we have Connie Lee, President, coming over to the UK.

   Angioma Alliance was founded in 2002 by Connie Lee, a clinical psychologist and the mother of a daughter with multiple cavernous angiomas. Connie’s personal story with cavernous angioma began in January, 2000. At that time, Connie’s 4-month-old daughter Julia received brain surgery for a major hemorrhage and hydrocephalus caused by a cavernous angioma. It was not known that she had the condition, and by the time Julia was taken to the operating room she was near death. Her neurosurgeon performed a craniectomy, stopped the bleeding and removed the angioma. Since then, Julia has had more cavernous angioma hemorrhages, three of which required surgery. Today, Julia is a bright, outgoing, active six-year-old who loves to swim and ride horses. Although she had the hereditary form, Julia is the first in her family to have the illness. Of those with cavernous angioma, 25% are diagnosed as children.

The thyroid becomes underactive when antibodies damage and destroy it.

Symptoms

weight gain

lack of energy

hair loss

dry, thick skin

a puffy face

Treatment A simple blood test diagnoses the condition. Then thyroid tablets are prescribed which have to be taken for life but which usually completely clear the symptoms.

The following list gives suggestions of what you might like to pack for a hospital labour. Obviously some things may not apply to you.

maternity Records

comfy long shirt or T-shirt for labour

massage oil

sponge water-spray to cool down

TENS machine

music

camera

favourite snack/ drink

Slippers + dressing gown

2 x Front fastening adjustable strapped nursing bras. (Buy cotton when 38wks pregnant)

Super absorbent/ maternity sanitary towels

disposable pants

Contacts/ glasses,

toothbrush, paste,

hair bobbles, hairbrush, shampoo,

make-up, moisturiser

Dark bath towels x 2

Hand towel

Flannel

Box of tissues

Breast pads

Money

Books/ music

Comfy clothes

Front-opening nighties x 2

nappies and sleepsuits for baby

Baby car seat fitted to rear seat
Can you think of anything I’ve left off?

Years after tearing my anterior cruciate ligament in a skiing accident, then completely rupturing it while trampoling, I finally decided to have it repaired. I was at a stage where it was unstable even when I was walking the kids to school, and was swelling up for no reason I could think of. I could do very little sport.

The surgeon told me that I would be walking without crutches the following day, but this did not happen, and it acutally caused an argument between me and the nurses when they said I needed crutches and I was adamant I didn’t.

From my experience you should expect to be bandaged up and on crutches for a few days so it makes sense to do any jobs such as going in to the loft before you go in. I didn’t have any real pain, but expect not to be able to drive a car for atleast two weeks, so get any appointments and shopping done beforehand. Really, you need to have someone about who can fetch and carry for you for about 3 days, as you will not be able to crouch, twist or put weight on your graft site. It’s normal to be limping for many weeks after the operation, and it can take up to week 12 before you can straighten it properly. Also, you are not going to be able to walk downstairs properly for many weeks, so be aware if you have a baby or small child to carry. Its usual to lose some sensation around the long incision (see photo) and the scars will slowly fade. The most difficult thing is to be patient and not overdo things.

The best advise I can give is to find a physio who really understands ACL reconstruction and follow what he or she says to the letter right from the beginning. Expect to have to do LOTS of physio exercises. In the first instance it will be mostly related to range of movement and muscle tensing, and you’ll wish you could do more. By about week 9 the amount of strength work you do will be increasing to the extent that it is worth joining a gym if possible, or atleast investing in some weights. Most people find that they lost muscle during the first few days of the operation, so building muscle back up is ultra important. I found the best ways of doing this were weighted squats and leg presses. If you can regain both range of movement and muscle, you may be up to jogging by week 12.

Corneal warpage is when a cornea has distorted out of its natural shape.  Often it occurs in people who have over-used contact lenses, by wearing them for too many hours.  Alternatively it can arise by wearing contact lenses that don’t fit corrctly or because some people’s eyes need more oxgen than wearing contact lenses for even normal periods allows.

(continued from Cerebral haemorhage due to rupture of cavernous haemogina – early days)

The next day she had a CT scan which confirmed a brain haemorrhage, and with a doctor and nurse, were sent off to a specialist hospital that had a dedicated ward, lights flashing and siren sometimes wailing. Once there, for the first time a doctor explained to us as much as he knew in plain English. He said she had hydrocephalus and would be in hospital to be observed a few days, but was in no immediate danger. James was so pleased he shook the doctor’s hand, and I could have kissed him.

Slowly Annie improved. She did vomit a lot though, but slowly this lessened and she was less sleepy. Her coma level slowly returned to 15 although her eyes still sunsetted. And she breast-fed again.

At that stage she was well enough to go home, but unfortunately this was delayed because Annie’s symptoms (such as blood on her retina) apparently were the same as if she had been maltreated e.g. shaken or beaten. Because of the blood in her brain at that time, there was no way that the doctors could see she had a cavernous haemogina. So we had to endure a skull x-ray, a skeletal survey and two days of being under suspicion of harming her. I was told I could not be alone with my own child, and that if I left the hospital with her, the police would be called and I risked having my other child taken from me as well as Annie. It was the worst time in our lives.

Confirmation that the haemorrhage had been caused by the rupture of a cavernous hemangioma was many months in coming, but very welcome on two counts. First, it wasn’t an aneurysm (which is worse) and secondly it at last put James and I in the clear.

The haemorrhage left Annie with a weakness in her right hand side, a squint, and fine and gross motor issues. We were lucky it wasn’t worse. She has a 1 in 5 chance of having another by the time she is 20 and this could range in severity from a tiny headache she is hardly aware of, to death. This means we are always worried that she might have another. Every morning I am relieved to hear her wake up. Possibly, she will have surgery when she is older to remove it.

2 Responses to “Cerebral haemorrhage due to rupture of cavernous hemangioma – part 2”
1
Ian Stuart Ph.D. Says:

Hi,

If there is anyway that you can contact others’ through your site and tell them about Angioma Alliance (UK) – info@angiomaalliance.org.uk ; the work we do etc. that would be tremendous.

Ian Stuart.

March 7th, 2008 at 9:02 am
2
brain aneurysm Says:

[…] flew to?Seattle to be?with Allyson.? Allyson never regained conconcordbaptist.wordpress.comCerebral haemorrhage due to rupture of cavernous hemangioma – part 2 continued from Cerebral haemorhage due to rupture of cavernous haemogina – early days The next day […]

March 13th, 2008 at 1:44 am
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Rice stands for Rest, Ice, Compression and Elevation. It is an accromyn for the treatment of sprained ankles and knees.

Rest – Avoid any activity that causes further pain.

Ice – Apply ice as soon as possible (crushed ice in a tied freezer bag is best so it is not too cold) for 15 minutes every 4 to 8 hours.

Compression – if possible wear an elastic bandage, but don’t wrap it too tightly or rely on it to prevent further injury.

Elevation – Elevate as much as possible, particularly while applying ice. At night use a book under the mattress.