Could anyone give me any advice atall ? I suffered from distorted vision and a really painful headache on sep 2010. Ive had an MRI scan which revealed a growth of blood vessels in my brain! My GP says that this is an AVM. I am now worried and scared every day that something is going to happen to me! i have been referred to neuroligist but have to wait untill july before having any diagnosis… would you think that because i have to wait this long that i should be ok?? I am experiencing a pulsating in my head along with earache and a stiff neck and lose the strength in my right arm! I am very anxious and not got a clue whats going on. Any advice would be greatly appreciated. thank you
Go to a hospital and get checked. If you have any of your images or doctors records take them with you. Let us know the outcome. Better safe than sorry.
i would go to a hospital and let them know what your symptoms are or call the dr office where you have your appointment scheduled and let them know whats going of espically if your symptoms are getting worse and see if they can get you in sooner. July seems like a long time away. I agree with Stephanie its better to be safe than sorry. Hope all goes well. Lots of prayers. Tonna
Thank you so much ladies! I attended docs last week and he said it was an ear infection. I took a course of antibiotics and the pain still existed along with pulsating. went back again and was told i had a fever in my left ear and given nothing! its as if i can feel my whole heart beating and pumping in my head and ears! no one seems to want to know…thanks again. much appreciated! x xx
My AVM is louder when I am anxious or if my bloodpressure is elevated. It sounds like whooshing. It has never ruptured but my nuerosurgeon told be to be aware of anything different like numbness in the extremities, neck pain/stiffness and extreme headache (different than what I already experience). I’m think of you; be well.
Lynn Anderson said:
Thank you so much ladies! I attended docs last week and he said it was an ear infection. I took a course of antibiotics and the pain still existed along with pulsating. went back again and was told i had a fever in my left ear and given nothing! its as if i can feel my whole heart beating and pumping in my head and ears! no one seems to want to know…thanks again. much appreciated! x xx
I agree with Stephanie. Go to the hospital with your records. When I was first diagnosed, I was told to stay off caffeine, no exercise, and no alcohol. Even though they had my MRI records I was told they wouldn’t be able to determine what to do until they did an angiogram. It took about 10 days after the MRI to have the angiogram, and then they performed an embolization shortly thereafter. I don’t know why they would tell you to wait until July. Stay strong, but take action.
YES, YES, YES,do what the others said too. You need to have an MRI, then an angiogram to be sure.
I wish you the very best wishers, thoughts and prayers with you.
Hey Guys! Thank you so much for your replys! I have not got any records and plus in the uk its NHS which is free health care, so raelly dont want to complain! as other countries have to pay. This could be why i have to wait? i have an appointment with my local GP on thur so i will let you know how i get on… Even though i sound like one of the lucky ones as i dont suffer from any disability or sezuire…Just so anxious as i dont have a clue what this is all about! Im so glad i found this group, it has helped alot. Hope you are all well as can be! x x xx
Lynn, I agree with all the others, you need to be seen as soon as possible. Plus, the whooshing in your head is called Bruit and it is very common among people with AVMs in their brains. The next step should be an angiogram. I hope you can be seen sooner.
I don’t mean to frighten you but I wouldn’t wait to see your GP. The symptoms you described could indicate your AVM is bleeding.
Lynn Anderson said:
Hey Guys! Thank you so much for your replys! I have not got any records and plus in the uk its NHS which is free health care, so raelly dont want to complain! as other countries have to pay. This could be why i have to wait? i have an appointment with my local GP on thur so i will let you know how i get on… Even though i sound like one of the lucky ones as i dont suffer from any disability or sezuire…Just so anxious as i dont have a clue what this is all about! Im so glad i found this group, it has helped alot. Hope you are all well as can be! x x xx
Lynn, Your GP probably doesn’t understand about AVM’s. Go to a hospital that has a neuro department. I agree with everone else. When you go, tell them you have an AVM and are having your symptions. I don’t think you should wait until July,go to a Neuro Hospital. Good luck…Let us know how you make out!
Hi Louisa, thats exactly the way it seems! As if they dont know alot about this… I have been taking strong painkillers which strangely enough is not taking it away! thanks for your comments hughely appreciated x x
Louisa Cicillini said:
Lynn, Your GP probably doesn't understand about AVM's. Go to a hospital that has a neuro department. I agree with everone else. When you go, tell them you have an AVM and are having your symptions. I don't think you should wait until July,,,go to a Neuro Hospital. Good luck..Let us know how you make out!
not to be flippant … but, get a second opinion… fast! Doug Robinson, AVM survivor 1980
Lynn, the best thing you can do while you are waiting for your July appointment is to educate yourself and take of your overall health. Ask your GP to watch your blood pressure. Avoid aspirin and other meds (even over-the-counters) that could act like a blood thinner and meds (like antihistamines) that could raise blood pressure. Stay well-hydrated. I was diagnosed 24 years ago, but was untreatable then. Luckily, I live a dull life :-) and didn't aggravate anything. (Never smoked, rarely drank, ate well and exercised moderately.) Good luck with your process!
Hi Robin, really good advice! Thank you so much for that… I went to docs and he said i had a viral infection again however Also advised me to contact the consultant at main hospital were my appointment is going to be in July. Due to a severe headache and distorted vision that i had back in Sep 2010. Just so confused about it all at the moment! I wouldnt say a dull life! Just looking after yourself is what your aiming to do!! Unfortunately i do smoke and enjoya socialable drink, even though ive not been drinking lately… I will have my blood taken also, i guess this is some reassurance eh? Thanks again for your advice and info, and i take my hat off to you for living with this untreated for so long! i feel this would take alot to come to terms with! take care Lynn x x
Robin Konen said:
Lynn, the best thing you can do while you are waiting for your July appointment is to educate yourself and take of your overall health. Ask your GP to watch your blood pressure. Avoid aspirin and other meds (even over-the-counters) that could act like a blood thinner and meds (like antihistamines) that could raise blood pressure. Stay well-hydrated. I was diagnosed 24 years ago, but was untreatable then. Luckily, I live a dull life :-) and didn't aggravate anything. (Never smoked, rarely drank, ate well and exercised moderately.) Good luck with your process!
Smoking really stresses the circulatory and vascular systems (even more than drinking). Please, talk to your docs about a quit smoking program.
Lynn Anderson said:
Hi Robin, really good advice! Thank you so much for that.. I went to docs and he said i had a viral infection again however Also advised me to contact the consultant at main hospital were my appointment is going to be in July. Due to a severe headache and distorted vision that i had back in Sep 2010. Just so confused about it all at the moment! I wouldnt say a dull life! Just looking after yourself is what your aiming to do!! Unfortunately i do smoke and enjoya socialable drink, even though ive not been drinking lately... I will have my blood taken also, i guess this is some reassurance eh? Thanks again for your advice and info, and i take my hat off to you for living with this untreated for so long! i feel this would take alot to come to terms with! take care Lynn x x
Robin Konen said:Lynn, the best thing you can do while you are waiting for your July appointment is to educate yourself and take of your overall health. Ask your GP to watch your blood pressure. Avoid aspirin and other meds (even over-the-counters) that could act like a blood thinner and meds (like antihistamines) that could raise blood pressure. Stay well-hydrated. I was diagnosed 24 years ago, but was untreatable then. Luckily, I live a dull life :-) and didn't aggravate anything. (Never smoked, rarely drank, ate well and exercised moderately.) Good luck with your process!
Lynn, not to be alarming but go to the emergency ward if you can and tell them you may be having a brain bleed. They shld do a CT and likely an Angiogram. There is no way you should wait until July. An AVM bleed can be life threatening. If that isn’t possible, make an appt with a neurosurgeon asap. Most General Docs really do not understand AVMs, they just don’t come across the condition. Go Go Go
Hi Janice thanks for your comment! I just dont know what to do… its NHS here in scotland which means it is free!! So feel that they wont see me and just have to wait on my time to be seen. The doc said to me that there are people who has taken bleeds and strokes and they will see them before me! Do you know if its possible that i could have had a bleed and the only symptoms are mainly at the moment are headaches and stiff neck? Thank you Janice! x
janice hartman said:
Lynn, not to be alarming but go to the emergency ward if you can and tell them you may be having a brain bleed. They shld do a CT and likely an Angiogram. There is no way you should wait until July. An AVM bleed can be life threatening. If that isn't possible, make an appt with a neurosurgeon asap. Most General Docs really do not understand AVMs, they just don't come across the condition. Go Go Go
Lynn…It’s absolutely possible to have a bleed with little or no symptoms. When I had my bleed I’d only been experiencing mild headaches. Yes, they were very frequent but nothing that a little Tylenol couldn’t handle. Until the day I had the bleed. I didn’t know I had an AVM at the time. Try to get in sooner!
HI Janice thank you again, this is usefull information. i experienced a really really excruciating headache back in sep when i was on holiday in portugal and my vision was all over the place… on my return home, this is when i had an MRI/CAT scan done which confirmed my AVM… this is what makes me think that that could have been a bleed… but my knowlege is not good on Avm’s at the moment and docs just giving me tablets for my headaches. i also have the most annoying pulsating n oise in my ears at bedtime… i may pay a visit to hospital as previously my GP has been putting my symptoms down to everything else apart from my avm!! Hope you are well!! Lynn x thanks