Hello, Im Hanna, 33 years, 4 children, cat, dog, husband etc. Im HHT patient and went through lobectomy in-99 and several embolizations with coppercoils to my lung avms(PAVMs). Ive never been unemplyed, and lived a normal, active life until I got strange symptoms in summer 2015. Had to quit my job in fall 2016 and symptoms getting worse. Doctors havent found whats wrong with me, so I really hope to start discussion about avm symptoms. Really pleased to read your stories, hope my story can help someone too.
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Hej Hanna!
Youāll be no more strange than me!!
Welcome to AVM Survivors! I hope you will find support and the information youāre looking for. Can I say you are already very special because earlier today I worked out that you are our 9000th member! A very warm welcome to you.
Richard
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Wau, thats amazing 
really appreciate this kind of platform for us avm patients.
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Hiya Hanna,
Welcome to this amazing site!!! I do not have any advice to offer you as my avm is in my brain but Iām sure you will get a great response from fellow pavm avemmers. I just wanted to say hi and welcome xx
Hello hannacat
This is a great community with some really amazing and wonderful people (as you can see already). Weāre glad that you found us, and we hope that you will be as well!
Seenie
Hanna, I am new to this site. I am 28 years old and have an AVM in my left leg. It has gone through femor and tibia bone. I have had very bad knee pain all my life, always thought it was due to running. Anyways. I have seen a number of specialistsā¦ all to give me the run around. Each giving very different (wrong) advice. After the birth of my second daughter my pain started to worsen and start to grow in different places and right groin area. I was referred to yet another specialist. Long story short, he couldnāt help me, but knew the right doctor who could. I found Dr. Wayne Yakes at the Swedish Medical Center in Englewood Colorado.
I am doing alcohol embolization and coiling. He is world known, and what I know about him is very impressive. I have had one procedure with an unknown amount to come. I wish I could tell his name to everyone I meet. I donāt know your condition, but I just feel deep down Yakes can do ANYTHING. If you are afraid or want a second opinion you should keep him in the back of your mind. I wish you luck.
Hi Hanna, welcome, I am also dealing similar situation, surgery was almost 30 years ago, also was very able and active up to couple years back, now dealing with what you discribe and continuely seem to get worse,
Hello, its wonderful that you have found someone who can help you. I still live in this nightmare where no one can help me or reduce my suffering. My loved ones are equally helpless. But not giving up yet 
Electrician did you have lobectomy too? What kind of symptoms you have? Has anyone been able to diagnose you yet? I started to swell in heat and while excercising, had pain attacks in my chest and pulsatile tinnitus āelectrical low soundā attacks. Nowadays i have to use diuretics, cant walk properly and chest and pulsatile t are my constant companions. Nothing was seen in my mri half year ago.
Hanna,
I hate to tell you this (and Iāve been on this site for perhaps only 7 months) but your symptoms seem quite extreme, quite extensive, and donāt correlate with many people Iāve seen conversing here. Some of your symptoms, I guess, are to do with your mucous membranes and telangiaectasia and some will be to do with AVMs in different parts of your body.
I feel that you are unfortunately rather unique but I hope that you will find people here with pulmonary AVMs and with some of your symptoms but probably no-one with all of them.
I know there are people here with HHT but relatively few, and from what Iāve seen so far with much lesser symptoms than you.
However, donāt give up. We will try to support you the best we can. Very best wishes,
Richard
Good morning Hanna, I got your message, I am off to church this
morning, I will get back to you alittle later today, take care,.
Hanna, yes, I had left cranial, right above the ear, got about 14 ā
scar, AVM was attached the nerves that were attached to the left latteral
muscle at back of neck, along with AVM they had to remove about 8ā of that
muscle, your pretty much describing my issues only pain is more head and
neck for me,. Lots of pressure, Iāve recently re did all testing do to a
lump that has formed in the last 6 months, I have appt, scheduled may 1st
at Barrows in Phoenix, AZ,. Just trying to make that date without a
rupture or bleed, good day, hope all is well with you,
Yikes, Please call Dr. Sunita Srivastava at the Cleveland Clinic, They provide over the phone advice/consultation.
Hi Hanna,
I was diagnosed with PAVM in Nov 16, I have not had any sort of treatment yet, but am due to see Dr Shovlin at Hammersmith Hospital for an initial consultation on Thu 13 Apr. So not long to go now. I too have weird symptoms, leg pains - a bit like cramp, neck pain - feels like I have tweaked my neck! but am not sure this is anything to do with AVM. I have been to see my GP, who just seems to fob me off saying that she doesnāt know much about my condition. I then come away disappointed having āwasted my timeā again! Oh and welcome to the siteā¦Mandy
Hello Mandy, diagnose is a step forward, then there comes the case of āhow do we treat this thingā unless someone visits hht center stiff neck was one of my symproms too. Before lobectomy my saturation was 72. It was so low i guess it caused many problems. Even smallest of pulmonary avms can cause strokes or infections but i think they can treat something like 3mm or over these days.
Hi, my name is Cary. I have 7 PAVM in my left lung.
Found in December 2015. Havenāt been the same since.
Trouble sleeping and dealing with anxiety. What are your symptoms ?
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Hello Cary, i have had same issues. Trouble sleeping and i actually got psychiatric diagnosis of anxiety and depression. It started with āpain attacksā in my chest area. Only one small avm has been found, im afraid this time its not in my lungs. Pulsatile tinnitus, whole body non pitting edema which gets worse in heat and while excercising, nowadays even walking. Trying to get screened in proper hospital but its tough, because im labelled crazy even thpogh i have genetically proven hht with nosebleeds and all. Also have b12 and iron deficiency. Are they going to coil it or do you have to get aa lobectomy?
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Hey I found out that I had my AVM in 2008. I lost my house and job and my money I had save up, because of my AVM. My was on the right side of my brain. I have bad headache all the time, and pain that go from my heart and down the left side of my body. Me eyes go in and out. They canāt find out why. The medical make me sleepy a lot, but it help me deal with the AVM. I have depression real bad because of it. It get hard some days , but I make it.
Hi Hanna!
Welcome to the AVM-ers website. Iām glad you found us. We are here to support and encourage you on your AVM journey. Our stories are all different, but also the same in that we have an AVM somewhere in the brain or body. Mine is in the Cerebellum of my brain and was discovered after it ruptured in 2014. I had Gamma Knife Radiation, and Iām doing really well. I have a few āglitchesā here & there, but Iām blessed to still be here. My advice to you is: Prayer & Patience!
Donnell, nice posting, sounds like your describing me, wishing you all the best, hang in there, Be strong and carry on, your not alone
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