My Story

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

Hello Marc,

I really enjoyed reading your story, I too was told my AVM is un-operable so I did Gamma in Sept 09' and was given a 70% rate of cure. We have began to see changes in the AVM which I am very excited about! Your story gives me lots of hope. I too try to move forward and continue living my "normal" life. I am so happy that you no longer have to worry about your AVM and can't wait till I get to that day too! Mel

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WOW! Congratulations Marc! You gave some very great advice for those who are just starting out. Being proactive in your health and keeping your own records are a few of the most important parts of all of this.

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That is realy good news Marc. Yayyy!!! We need to have a party. I’ll bring the pizza. :slight_smile:

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I want to add…I’m glad everything has finally worked out for you. You’ve traveled a bumpy road with this. It feels good to hear about happy ending. Thanks for sharing your story. :slight_smile:

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My story is a lot like yours, from start to finish to include meds, epilepsy, etc. I couldnt have said it better.

God Bless you....

Loretta

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Hi Marc, You presented a very good story. This is just the beginning of a long road for my 6 year old grand daughter. She started with seizures, producing stroke-like symptoms. Is now taking Tegretol. AVM also large in the left parietal.(Grade 5 on the Speltzer-Miller scale) No treatment, just monitoring. It is saddening to think of all she will be going through, but I pray, pray, pray. - Take Care! - Cindy

Oh my gosh Marc. Your story is just what i needed to read. I was diagnoised with an in-operatable avm in the center of my brain 1-1/2 years ago; the glue process would not work but i did have the gamma knife; I still suffer from headaches; the neuro is going to measure to see if the avm has reduced in size in september (2 year anniversary) right now says no change; my biggest mistery is numbest and tingling in my arms; before we found my avm, i was had test done to see if i had corpal tunnel and dr. said no but didnt know what it was, then found avm here recently, my right arm is feeling numb; i wanted someone to link the arm and the avm together. I am going to discuss this with my neuro in april during my next visit. thank you so much for posting your story and for giving me hope. congrats on being avm free!!

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Fantastic, Marc!

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Thankyou everyone for your comments. For me I think the important thing was accepting the long road, and then just trying to live with how things 'were' rather than worrying about why they 'weren't' - if that makes sense - play the cards you're dealt and all that.

Take care everyone.

Marc