Dr. fixed 6 PAVM's in left lung in Feb. 2016. A couple very large.
Felt better for a couple of months.
Now feel lousy, no sleep, Red Blood Cell Production
going up very fast, Hemocrit starting to rise fast.
They are going back into lung next week to get a
look at things. Got a CPAP which is helping me a bit.
Feel tired all of the time.
Any suggestions? Live in a high altitude. 5,000 feet.
Maybe move to lower altitude. Doctor who is a HHT
specialist in Denver says I probably have AVM's in other
parts of my body. MRI of brain showed none.
Cary, Its good news that there are none in the brain :) , But obviously not great that there are others at all !, I have featured this discussion to try to motivate the community to respond on this topic, I hope it helps and sorry I cannot help more and my experience is brain AVM based. Take care and take it easy :)
I do wish you get positive help. Most important is good will to tackle or bear out the issue.
I don’t have any exposure to PAVM but went through Brain ACM issue and still facing seizures and on medication, just coping up.
All the best.
I am not very good at putting these sort of things into words, and I haven't got any good advice as I have no experience of a pulmonary AVM myself (mine is in my brain).
Just want to say that I feel for you - it's all extremely worrying for most people and it can keep you up at night - that probably doesn't help.
About other possible AVMs I would say "don't cross that bridge until you come to it."
My AVM in abdomen. 2 occurrences in 2008, 1 in January 2016. I am 71 yrs old and no pre-symptoms prior to 2008. Also told
by my surgeon that MRI cannot always diagnose predisposition or
presence of abdominal AVM. Now
having difficulty getting life insurance. No one else seems
to mention this. In your case I find it very encouraging your
RBC/Hct coming back up. As for tiredness, is there possibility
you could travel to lower altitude for 7 to 10 days to see if
any change? BTW, my recent AVM triggered by descent in a small
commuter plane during landing. Previous 2008 occurrences
triggered by excess levels of aspirin (it was an abdominal AVM).
Hi Cary,
I have several PAVMs in my right lung. I’ve had 2 surgeries (once when I was 11, the other when I was 19) to do a coil embolism on as many as they could. Did you have a coil embolism?
My first thought to your post is that maybe not all of your AVMs where fixed (they couldn’t coil all of mine because it would have killed the lower part of my right lung). The other thing I have learned is that large ones can produce small ones off of it (mine did).
I would definitely suggest moving to a lower altitude. Your red blood cells and Hemocrit are probably going up because they are trying to make up for your lack of oxygen. I’m assuming that low oxygen is one of your symptoms because it is my main one, and because you live at a high altitude.
A interventional radiologist is the only person around here (Louisville, KY) that knew how to help me, I want to give you advice that he gave me - if I ever get short of breath that I should try to lie down and put my hands above my head (not stand like most say to do). I’m not sure if this will help you or not, but I understand your stress, if I have low oxygen then I feel terrible, can’t sleep, and have anxiety.
I also have PAVMS and have had about 30+ surgeries, I HIGHLY RECOMMEND NO M.R.I.s. because of the surgeries (if they did the pulmonary coiling).
Ok, now with my PAVMs I don’t have the HHT, as far as Dr.s have ruled… because the only ‘signs’ I have is the anemia, and bloody noses. And no one in my family has it or had it.
Moving to a lower altitude would be much, much better, because with this pulmonary condition it’s as if your already living on top [f a mountain. Because of this disorder oxygen does not get into the blood stream.
I am on a blood thinner, and oxygen for the rest of my life. The blood thinner because I get blood clots that wrap around the heart, and lungs.
There is a doctor at the Mayo clinic who studied at Imperial College Healthcare NHS Trust in England, it’s the leading hospital in the world for all types of AVMs, but their main area of AVM research is pulmonary.
Dr. Timothy R. Aksamit M.D. he studied at Imperial College and is now in Rochester MN.
I had 1 large PAVM coiled in June 2014 and have been breathing so much better. That being said I just had a CSCAN a few weeks ago and they have found another very small AVM. It did take a few months to feel fully functional as far as breathing goes. I do not have and brain AVM's and was tested for HHT, but fell into the 12% where I need to be retested. Hang it there, and this page does help with the fears, and anticipations of what is next!!
They are going back into the lung next week to check on PAVMs
I have a oxygen finger test at home, and it usually positive results? Why tired? Gave blood yesterday and feel a bit better. Red Blood cells were getting high.
Live in high altitude . 5,000 feet.
Getting tired of being tired and ill feeling all of the time.
Hi
I have had 21 coiled and inhale an scheduled surgery to go in and fix a few more. My oxygen yesterday dropped 74 AMD my body is getting so weak. . only advise I can give is try n stay positive and strong and make sure you have a very good support system also the days u need to brake down let your self. And do not allow anyone to tell u that its all in your head . Cause they can not fill your pain … I don’t know what mind of hob your qorkinf but I would definitely make sure it is a non excreting job. U can not over do your self. Always feel free to message me . hope you feel better…
Hi, my name is brandy and I’m really looking for a friend that knows what I’m going through. I have been dealing with pavm most of my life. Please feel free to get back to me thnx
When you say fixed, I assume you mean coiled/embolised. I am from New Zealand where their approach to treatment is somewhat different. I had a large, complex PAVM in right lung with multiple feeders/ arteries and veins involved. They initially considered coiling but eventually decided on a lobectomy (removal of 2 lower lobes of my lung) as in their view placing multiple coils would be an extremely difficult procedure and at least some of the coils would be likely to fail. So now my lower right lung and the AVM are gone. It was major surgery and a year later I'm still recovering. BUT ... my blood sats are up to normal level, my risk of stroke has radically reduced and I no longer have migraines, which was a beneficial side effect of the surgery.
So it was a radical step but if worked. This is why I'm always intrigued when I read people from the US talking about 20 or 30 coils in their lung. I'm pretty sure they wouldn't do that here unless there were multiple AVMs scattered all over both lungs making surgery impossible.
Cary, I can understand your anxiety about your current symptoms. Could it be possible that you are still in recovery mode? Doctors generally reassure people that they will be OK within a matter of weeks, but in my experience (and that of friends), it usually takes many months or even years to recover from a major medical procedure, with ongoing feelings of not being quite well or being less able to do things you did before the operation. This has certainly happened to me and I fully appreciate what you are going through.
Having said that, I think you should persist with your efforts to find what is causing your blood results in particular. It could be something unrelated to AVM.
Wow, 21 coiled!!! That’s intense. I’m not sure how many I have coiled, I always thought it was a lot, but I know it’s not that many. Where in your lung(s) are you PAVMs? Have you considered have part of your lung removed?
Hi Cary, I just read your post tonight and just wanted to send you my well wishes. I did not see a follow up post so I am praying that you are now recovering from the second procedure. I had a pelvic AVM and they did embolization of 5 out of 7. It took years as far as the recovery. I had the procedure in 2012 and I can truly say that it is really only in the past 6 months that I am back to a more "normal self". Because of symptoms that I was having post surgically, I was checked for both a heart AVM and brain AVM during the first year that followed the procedure. Thankfully, both of those tests proved negative. I pray that you will have a positive outcome and I really do think that a move to a lower elevation is advisable. It is certainly worth a trial run, but remember, it takes awhile for the internal body to make adjustments.
Sincerely,
Happy
Hi Cary again. I had same experiences with head aches and many other issues gone with lobectomy in 1999. I had several embolizations during these years but otherwise i had a normal life. I dont live in high altitude, quite the opposite, but i have same symptoms and it started very suddenly in summer 2015. My life went from mild discomfort to agony in summer 2016. Its very hard to cope with this, people dont believe me and its hard to get more screenings because mris are “clean”. Avms are very rare entitites and hard to notice, especially on strnger places. I think we both might have hidden avm or systemic telangiectasia somewhere. With st i mean a situation where a certain place is badly infested and its hard to see in mri. Avm can also hide inside muscles or other tissues. I also have hemoglobuin rising, hematocrit rising, both way over normal limits. B12 shots and iron supplements have helped a lot to my tiredness. I use to be so tired i was scared to drive because i could suddenly fell asleep. I also had memoryproblems. I hope you listen to your guts. Our situation is very hard physically and emotionally. You have to keep pressing those doctors and seeking for help. Hope you tell me if tjey find whats wrong with you. I think you suffer in every altitude, so maybe its not time to move yet.