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Sunday 10 April 2011

New Glasses, Angiomas and Confessions

After starting my new job and having a new funky hairstyle, I thought it was time to get my eyes checked as I have been getting alot of headaches and also my eyes stream quite a lot and I get pain behind my left eye, going for my check up I got more than I bargain for!!!!

Firstly I do have to commend Specsavers on the wonderful checks they do on your eyes, I went for an eye test and also a check up for getting new contact lenses, I have never seen so much machinery for eyes and even though I was getting fed up of being there so long, I am now very grateful for the time and care they took on checking my eyes.

When using the ophthalmoscope to examine the retina at the back of the eyes they have found part of my retina missing and 2 "spots" at the back of my left eye, they asked me to go back to have some drops put in to dilate my pupil so they could have a closer look.  I went back the next Saturday when collecting my new glasses and they confirmed what they had originally seen, they referred me to MK General hospital to be seen the next week.

I had my appointment on Thursday, I was there for over 2 hrs and by the end of the appointment I still have no idea what is behind my eye as I saw a "Triage" doctor who I found very unprofessional, out of his depth and basically did not have a clue what he was looking at.  I am absolutely fuming that I was referred by my opticians to see a specialist and all I saw was a doctor with no specialist knowledge on eyes.

He told me I didnt need any treatment but confirmed that my Retina is deformed due to 2 "lumps" behind my eye, I asked what they were, he didnt know, I asked how he knew I wouldnt need treatment if he didnt know what they are, he couldnt answer me, I asked if they are to do with my condition, he has no knowledge of VHL or seen this in an eye so again did not know, I asked why I was seeing a doctor who had no specialist knowledge of eye problems, he told me to ask reception!  He told me I would need to be seen by a specialist in 2 weeks, I went to reception very frustrated, the girl with a serious "I dont give a shit and hate my job" attitude told me I would have to take the 21st April, which I cannot do as I have a training session at work to carry out, she then gave some more attitude back, picked up her ringing mobile phone and walked off.  I was so disgusted that I walked out.

To me it seems fairly obvious that whatever they are seeing is linked to my condition, Von Hippel Lindau, as this is common in 60% of people to get Angiomas of the Retina.  As I have been temping for the last 2 years I have struggled financially to get to Oxford to have my eyes checked so I blame myself for what is happening now, to be honest I thought that at the age of 43 I would be one of the 40% that do not get these, besides having a tumor on my brain, kidneys and pancreas was surely enough.

Extract from the Von Hippel Lindau handbook which is available for anyone to read, so you think maybe the Doctor who is not aware of this condition might have just looked it up to have more of an idea!!!

"When capillaries form angiomas, technically called hemangioblastomas, in the retina, they start out extremely small and difficult to see. The capillaries themselves are less than the diameter of a red blood corpuscle, one of the cells that make up the blood. When angiomas begin, they often grow around the equator or periphery of the retina, far away from the area of central vision. Unlike the equator drawn around the globe of the world, the equator of the eye is vertical. As you stand, draw a circle around your eye from eyebrow to nose and around. The circle you just drew is the equator. To see this area, your ophthalmologist or optometrist must dilate your eye, use high-powered magnifying lenses, and look from side angles. It is more than the usual eye examination. If there is VHL in your family, be sure to tell your ophthalmologist or optometrist so that he or she will be sure to do this thorough examination and find any small angiomas so that they can be treated in the early stages. A referral to a retinal specialist will be required for treatment of these tumors. Generally smaller lesions can be treated more successfully and with fewer complications than larger ones. Leakage or bleeding from angiomas can lead to serious vision damage or retinal detachment, so early treatment and careful management are very important"

I have not heard anything from MK General Hospital to make an appointment and I have left a message with my genetics clinic in Oxford, so now I just need to wait and see who contacts me first.  Due to the above I thought I had better speak to my boss about my condition, not something I was looking forward to as they might see it that I had been "deceptive" at my interview but I always say that if the question never comes up, then I dont offer to give them that information, as I do believe that it has gone against me in the past.
The chat went so much better than I expected and I feel like a real weight has been lifted off my shoulders, I am hoping that my work so far has impressed them and that they can see what value I can bring to the company, especially as I have found about 5 bugs in the software in my month and half of being there.

Shellie B

2 comments:

  1. Your boss is wise taking a positive approach to your condition. He may have taken on someone with a perfect bill of health but with no talent and no committment to the job. You have proved to have all of the right qualifications. Pity the doctor and receptionist were not as professional. I would put in a complaint about the receptionist. An old or distressed patient would not have coped with her attitude in the same way as you.
    Keep on at the hospitals until you get a result Shellie x x

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  2. Hi Shellie!
    I'm so glad to see you back blogging... & on Twitter - I've just sent you a follow request @net_hues
    Also very glad you had an opportunity to have a 1:1 with your boss and a positive discussion, which has hopefully opened the door re that nasty colleague.
    I hope you're able to get the best 'resolution' for your eyes.
    Keep being positive & moving forward, you're an inspiration,
    Annette :)

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