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AVM Survivors Network

PAVM of Right lung


#1

Hi There,

I have just been diagnosed with 2 AVMs in my right lung. Anyone else have PAVM and any advice that may help, such as should I still exercise…I do yoga and running!
Its all still very new to me so anything that helps is great.


#2

Hi Mandy, Unfortunately only your doctor can advise of that question, We can share what we have been through if we have had AVMs in the lungs but since we do not know your medical history and are not qualified to give medical advice we cannot answer your question on exercise and AVM’s, I know that with my brain AVM I was not able to lift heavy weights and also not even allowed to strain too hard with anything, The idea was that my AVM was found after it bled, So it was weak already from the first rupture, And I was told to try keep relaxed and my heart rate and blood pressure low to avoid the risks of another bleed. This may not be the same as your circumstances and your doctor is the best person to ask, I would write things down that you wish to ask your doctor on your next appointment and take the list in and get all your questions out there :slight_smile: , This is best.

Martin


#3

Thanks Martin, much appreciated. Seeing the doc next week, so I will go armed with my list of questions!


#4

Mandy, I agree with Martin: you’ve got to talk to the doc about things like that but there are people here who’ve had PAVMs. Have a search for stories using the grey magnifying glass on the green banner above for “PAVM” and you’ll find some people whose stories may be helpful or who can share their experiences.


#5

I have 7 avms in my left lung. I golf, do yoga and circuit training.
I suppose each case is different. Better ask your doctor.
I am confused with my condition. I have good days and bad days.


#6

Hi Mandy. I had surgery to remove a large complex PAVM last year. It’s great that you can get regular exercise - I found myself too short of breath to walk up hills let alone run! - and am much better set up for getting exercise now. However do follow your doctor’s advice on whether to continue. One thing I was advised against was long distance air travel until the PAVM could be treated.

Yes we are rare and special cases (which can sometimes feel like being an animal on display in a doctors’ zoo!) but there are down-sides to that. Very few doctors have seen a PAVM and my local hospital was not well set up to deal with an unusual case outside their normal routine. I live in NZ and we don’t really have any specialists that are used to PAVMs either. This led to unacceptable delays in getting an angiogram, which led to further complications down the track. … (Don’t get me wrong though, most of the medical treatment I received was spectacularly good, and the nurses in particular were great.)

My advice would be to do some reading (using reputable academic sources on google), keep getting support from people who have had similar experiences, and discuss a treatment plan with your specialist pretty promptly, so that you can keep an eye on whether the medicos are sticking to the plan. I would also practice being assertive with doctors …

Very best wishes - I do understand what you are going through and if you would like to ask me anything else about my experience I would be happy to share.


#7

Hi Kate,

Thanks for your response, and sorry ive not replied. Ive been waiting a referral and results from my endoscopy. It turns out that i have a hernia, which will be controlled…hopefully by meds and slight change of diet. The docs had not referred me regards my AVMs, this was the beginning of Jan. But after having a moan to my GP she managed to get me referred to Hammersmith hospital. It seems that people including docs dont know much about this condition and have a ‘oh well, i have no concerns’ attitude. it quite worrying. So now im just waiting for Hammersmith hospital to get back to me, its a relief but slightly scary. Thanks again, take it easy, have a good day. Mandy


#8

Mandy, Yup go in armed with questions but not too many to overload the Doc, Just enough to hit the main things you need to know :slight_smile: , Glad I could help a little. Thanks.

Martin.


#9

Thanks for replying Mandy. I know exactly what you mean about doctors’ inexperience. It’s really important to get the right attention as soon as you can - both because you can look at options for treatment and more importantly to have someone to talk to who understands the issue. Having gone through something resembling the NHS myself, I’m very aware that public health services are set up much better to deal with common, run of the mill conditions rather than rarities. In the USA (as long as you have insurance) they are much better provided with specialists who know all about things like AVMs.

It’s also typical that they found a hernia - once they get you in their clutches and start scanning you they find all sorts of things you wouldn’t have dreamt of. Since my ‘interesting’ health journey began a couple of years ago I’ve been variously diagnosed with a (benign) breast lump, sarcoids, colitis and a goitre …none of which make a great deal of difference to my day to day life, but they have kept me busy going in and out of the hospital for tests long after my surgeries.

Best wishes with Hammersmith hospital. :slight_smile: Kate


#10

Hi Kate,
Hope all is well with you. I hope you may be able to help me. I have just been given an initial appointment on 13 Apr. Yea, at last. I have had a look at a link which lists questions to ask the specialist but most are dealing with brain AVMs. What questions specific to PAVM should I be asking??? Any thoughts or ideas would be greatly appreciated. Have a good day, Mandy


#11

Hi Mandy

I’m sorry I haven’t looked at this site for some time. I hope your appointment in April went well.

There are a number of differences between pulmonary AVMs and brain AVMs. Most commonly there is chronic under-oxygenation of blood which causes fatigue, dizziness and shortness of breath. There is a risk of stroke, which is to do with clotting caused by blood circulating in the wrong direction (as opposed to risk of stroke resulting from aneurysm/ brain bleed, which may be the case with brain AVMs). There is also an association with migraines. I had frequent migraines all my life, which have completely disappeared since my AVM surgery.

All AVMs are different and all doctors are different. These are examples of the kind of common things that doctors may say/do about a PAVM - based on my own experience and the extensive reading I did initially when I was dealing with people who couldn’t tell me much about the condition:

They may advise you not to fly (or not to fly long distance) until you are treated because of the increased risk of clotting.
They may advise you to take antibiotics before dentistry because for some reason which I don’t understand there is an increased risk of infection resulting from dentistry.
They may do examinations or tests to find out if you have HHT (hereditary haemorrhagic telangiectasia - difficult to spell!) - which is a chronic bleeding condition strongly associated with PAVMs, but which I can’t tell you much about as I don’t have it.
They may perform an angiogram to fully scan the PAVMs and check that there are no AVMs elsewhere .
They may advise you not to have other surgery before your PAVM is treated, or to have special measures taken to reduce the risk of clotting during surgeries.

If they haven’t discussed some of these things, that may just be because it’s not required in your particular case, but if you’re concerned I would encourage you to ask questions. I’m a person who likes to be fully informed about my medical status, so I always asked lots of questions - maybe to the point of annoying the doctors but I felt I was entitled to the full picture.

The treatment they decide on will depend on the size and shape of the AVMs - mine had to be operated on but they may decide to embolise yours - everybody is different.

I hope you go well on your AVM journey and I’m sorry if this arrives too late to be helpful. Sending massive empathy your way.

Kate


#12

One other thing to watch out for is people panicking when they measure your oxygen levels … I ended up in hospital for a different issue before they could treat my AVM. The staff were constantly concerned because my oxygen ‘sats’ were constantly hovering around the early 80% and sometimes dropped into the 70s. A healthy person has sats over 95%. So according to them I should be really sick or dying with sats that low. However this low level is a ‘normal’ oxygen saturation for someone with a PAVM! I kept having to explain to each new shift of nurses that low sats were normal for me and they didn’t have to hit the emergency resuscitation button every time they measured my O2. It was quite funny really. Eventually the surgeon issued an edict that sats around 85 were OK for me and the nurses could stop fussing if I remained about that level.
The same thing happened with my GP after I came out of hospital - she called an ambulance at one point because my sats were 74 - despite my assurances that I felt fine.


#13

Hi Kate,

Thanks for replying.
So the appointment in April went well, they advised me of all you had said about not flying, antibiotics etc. they booked me in there and then for the embolisation. I had that done on the 17 May, so just a month ago. The dizziness has stopped and the numb feeling in the side of my face has reduced. Its only there maybe once a week ish!!
I have also been told I have HHT - not even going to try and spell…but not sure if now, after I have a review whether they will advise me to have other tests, who knows, i’ll have to wait and see.
Since the Op, my sats have gone up to 97/98 which is fantastic. I decided i would try and exercise yesterday for the first time. I went to yoga and found that I could do most things carefully. It still feels as there is some ‘tugging’ on my right side when I do certain things. Also in the evenings I get pain in the middle of shoulder blades/slightly to the right. I guess this is after sitting at the computer working!! slowly, slowly I suppose. Have a good day, take care.

Mandy x


#14

Mandy,

That’s great. I’m glad your embo has gone well! All the best with any further HHT stuff. It will really help others if you can tell us how you get on with anything related to HHT. You’re not alone here but it is rather rare.

Very best wishes,

Richard


#15

Hi Mandy

I’m so glad you have had a good result. I think things tend to resolve over time – or we learn to live with them. I’ve taken up yoga to help with my breathing, body condition and some neuropathic symptoms I had post surgery. I was down in the dumps for a year or so after my 2 surgeries - I felt I’d lost my ‘mojo’ and turned into a useless old lady when 18 months fell out of my life due to all the medical problems. But I have just started a great new job and I feel a lot stronger and more purposeful.

Best wishes

Kate