Hello all, I have posted my story before, a couple of years ago now, but it has moved on. A quick summary. I was diagnosed with a large AVM in the parietal lobe (about 40 x 30 x 20) in 1995. This was after several numb episodes in my left hand and an occasional flicker in my left eye, and after a couple of episodes of doctors telling me to take two aspirin and go home - always be persistent.
At first I was told they would operate, then prepared with all my questions and concerns at the next consultancy, that it was actually un-operable. Straight onto Tegratol and my symptoms calmed. Note that standard Tegratol made me feel sick, so they swapped me to Tegratol Retard (slow release) and this was much better. I have had 4 experiences with the NHS that have been shocking, bordering on negligent. I got private health cover - a policy with a moratorium. Basically if you are clear for a period of time they will cover pre-existing conditions. After two years of no activity I was covered.
Around 2000 symptoms worsened (numbing of left hand/arm, etc) and after MRIs, I was told I needed an Angiogram - not pleasant but there you go. After this I was offered hope in the form of gluing the vessels in the brain - something that was not available on the NHS at the time. They do an angio and glue the vessels from the inside to cut off the abnormal vessels.
Over the last 10 years my AVM had two ‘gluing’ sessions and two gamma knife radio surgeries (non invasive radiation treatment). The last gamma knife was about three years ago. I had an MRI a few months ago that showed it much smaller but they wanted another angio to check. After the angio I was amazed to be told it had gone. I was totally clear with normal population risks etc. I was told from the beginning that my AVM would be with me for life. The only reason that I started treatment was because my symptoms were getting worse and I was trying to slow them down. I really can’t believe that its gone, but as of last Friday I am no longer and AVM sufferer.
This is my story: - Symptoms and treatments for 16 years - Didn’t drive for about 18 months at the start - Got epilepsy as a result of the AVM - Take 8 pills everyday for the symptoms - Had dozens of consultant appointments - Had about 12-14 MRI scans - Had 5 angiograms - Had two ‘gluing’ operations - Had two gamma knife operations Most of my appointments have been at or co-ordinated by Kings College London. I won’t name the team involved in my care, but (with the exception of the very start) they have all been outstanding.
My experience is that there is no quick fix and you have to play the long game, and just try and manage your symptoms at the time. My advice (just my opinion you understand and in no way gospel): - Keep your own records. I am so sick of having to go through my story from the start and try and work out all the dates and events. - Use the net with caution. It can advise and inform, but your situation will be different from what you find online. - Always push for an action and don’t get fobbed off. Ask what happens next and when - Make good friends with your consultants secretary as she can help you with appointments and information - My opinion only - the only useful info comes from your consultant or surgeons. Your GP is just the gatekeeper to get to the consultant - Keep living life as normal.
We have all had our depressive moments but as treatment can take so long it helps to keep doing as many normal things as possible. Easier said than done I know and I have had some dark days, but I tried to put it to the background, work around my symptoms and carry on. I went to work, I got married, I had a family. - Hope, hope, hope. I was told mine was inoperable and with me for life. I’m now clear. Stick with it! - When you have a good day, enjoy it. I could write a book on this and I have missed huge amounts.
If you have any questions I will be happy to try and answer them for you. Enjoy the good times. Good luck. Marc