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AVM Survivors Network

Avm in lung

#1

Hi I am new to this site, I have been diagnosed with an avm in lower right lung (its above 4.5 in size) I only went to docs with pain in my left side and this was found on xray and ct scan. Does anyone know anything about this, I am being referred to a specialist in London (Dr Shovlin) and am quite anxious. Is this seen as serious or will i prob have to wait months for an appointment? Any advice or help would be appreciated.
Thank you
Loretta (age 51)

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#2

Loretta, welcome to the site. You can type AVM + lung into the search bar on the top right of the page to start reading. You can also join the group for “Extremity and other non-brain AVMs” by clicking on the link below.

Stay strong and positive! :slight_smile:

http://www.avmsurvivors.org/group/extremityavms

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#3

Hi Loretta. I’m 52 and had a large AVM in my right lung diagnosed last year. Mine was surgically removed about 3 months ago as it was too large and complex to effectively embolise.
It is good that you have been referred to a specialist right away. If you are being made to wait I would press the doctors to see you sooner - especially if you are in pain.
Pulmonary AVM can cause clotting and stroke, among other conditions. I had to have emergency abdominal surgery for an unrelated condition in January and I suffered a very small post-operative stroke which was almost certainly due to the AVM. I don’t want to alarm you but it demonstrated to me that the risk of a pulmonary AVM is real.
My main problem was that here in NZ there are no pulmonary AVM specialists because the condition is so rare! So I spent a long time being shoved between various consultants until they worked out what to do.
You may have shortness of breath and low oxygen saturation (these were my main symptoms). I didn’t have any pain and it’s interesting that this was in your left side - I hope they are investigating that further.
I do wish you all the best. It sounds like your condition is very similar to mine. Please keep me posted on how things are going with your treatment.
Kate

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#4

PS and please let me know if you have any questions! I know exactly what you are going through and can give you a good idea what to expect - although of course the UK medical system will be different from the NZ one …

Kate

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#5

Hi Kate thank you so much for your reply, its good to speak to someone who has had it. How big was your avm and what where the complications if you don't mind me asking? How were you after the surgery and did they remove part of your lung? (sorry for all the questions). I am still waiting to hear when my apt will be in London.
Loretta xx

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#6

Hi Loretta
As you are now aware, AVM's can crop up anywhere in your body and a lot of the posts on this site seem to concentrate on the Brain. I think the Brain AVM always have the problems of uncontrolled bleeding which is very serious and can be fatal.
When the AVM is sited elsewhere on the body, bleeding from operation can be controlled a lot easier.
All operations are serious but some more serious than others, so I can understand your anxiety.
I would let the specialist look you over, if you do need to have an op to remove it, well its better out than in. A friend of mine had a growth on one of his lungs (not an AVM) and he had this removed over 10 years ago and he is as right as rain.
Regards
Stuart

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#7

Thanks Stuart

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#8

While in my treatment of right knee avm i got my oxygen low & my lung didnot work well but my Dr they cure it expertly .

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#9

Hi Loretta. Sorry I haven't replied for a while - just recovered from a nasty flu (and my lung came through well, thankfully).

My AVM was about hen's egg size in lower and middle lobes of R lung. They did an angiogram first, under general anaesthetic (after a lot of delay and miscommunication). They took the opportunity to look at my brain which is AVM clear.

The main complication was a R-L shunt in the pulmonary artery, blood flowing in the wrong direction which caused deoxygenated blood to mix with oxygenated blood and hence low blood oxygen - and hence prone to get short of breath, blue extremities, faint etc. If you have never really liked sport - now you know why! But my main symptom was doctors constantly wanting to listen to my 'fascinating' chest!!!

The operation was a lobectomy - which is fairly major. They removed both middle and lower lobes - about half my lung. I was recovering in the cardiothoracic unit for about a week. If you are lucky they will decide the AVM can be embolised and you will be spared the major surgery.

There are possible complications from the surgery - bleeding, heart problems etc - but it was extremely carefully managed and I didn't have any of those. I am still a bit tired and stiff after the op, which was about 3 months ago), but my one real side effect is 'neuropathic pain' which is like a phantom pain on my right side caused by the severing of major nerve bundles during the operation. This is not uncommon but it's better than having an untreated AVM! The scar goes across my back from under the arm up around the shoulder blade, I'd say it's about 10 inches long and it has healed very nicely.

The only major complication I had from the AVM itself was the very small stroke due to clotting after my abdominal surgery. This has left my right hand slightly disabled and I have to use a tablet now to take notes at meetings because my handwriting is now illegible even to me! The moral of that story is not to have any other surgery (if you can avoid it) until your AVM has been treated.

Post AVM I now have normal oxygen saturation, 98-99% compared to 80-85% before the op. I have also not had a single migraine since the operation. This is fascinating as I have had frequent migraines since I was a child. There is a known link between PAVM and migraine but it's interesting seeing it in action - if it is that (the other suspect is the drugs I'm on for the neuropathic pain - I'm planning to gradually cut those out and if the migraines don't return - it was the AVM). Are you a migraine sufferer by any chance?

Please keep in touch. I hope you have good support from family and friends as I know how incredibly stressful things are at your stage in the proceedings ...

Kate

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