I hope the spring is bringing sunshine to your days! :-) I apologize for my inactivity lately as I have been sick for the past two weeks. (sick for me means, a long lasting migraine, vision loss and nausea) So, I have a question for everyone. Is there anyone here that has a deep ache in their skull, often in the same area your AVM is located? The reason why I ask is because for the last three weeks I have had a deep ache, some times it is dull, but it does become severe, often stopping me from whatever I'm doing at the moment. On a scale of 1-10, the pain can be anywhere from a 3 to an 8. I have a fairly large, eloquent AVM in my right occipital lobe. The pain starts at the back of my neck and pulses at the location of my AVM. The pain feels deep and I can best describe it as an ache associated with a tightening type of feeling. I have never felt this pain before, and as it becomes more persistent I have to admit I am becoming a little nervous. I am not sure if I should be alarmed or not. I've called my neurologist, who then told me to contact my neurosurgeon, because he's in the process of setting a date for my first embolization and I have not been successful in contacting him. I have suffered one very small unnoticed bleed that came up on my first MRI, but never had "the bleed" that everyone speaks of. I am 32 and in the last 5 years my symptoms have only worsened. I know that I should live in the moment and let go of the anxiety I have associate with a bleed and for the most part, I do, but this new symptom is kind of bringing on some new and old fears.
Thank you to any of you who took the time to read such a long winded message. lol. Anyone's insight on this would be so helpful.
Have a beautiful day guys!
Hello, Musemica! It’s natural to worry and hard to live in the moment, isn’t it? I’ve had radiosurgery and I’m still waiting for it to make an impact on my AVM, so I can relate. We’re two tough customers!
I’m glad you called the neurologist. Did the doc listen to your symptoms before passing you on to the neurosurgeon? I would keep after the surgeon until a date is set. I bet just having the date will make you feel better, I know I would. I hope you’re enjoying the beautiful spring weather in Philly!
Definitely keep calling the neurosurgeon. It may be nothing but gettting advice from your surgeon may help put your mind at ease.
I just wanted to let you know, that I know exactly how that ache feels. I am 33 years old, diagnosed with AVM in my right occipital lobe nov. 2014. Got embolization jan. 2015 and finally got gamma knife feb. 2015. Had symptoms for many years before the MRI showed the cause to my hard struggle the last 8 years!
In the proces to know I have lost some of my vision, left side, both eyes. This insane headache you talk about, I still have it. But that can be explained by the gama knife, brain edema. Before I got it treated the same headache could be caused by the high blood flow in the AVM. I also had serval aneurysms in my AVM, witch was the target in the proces of embolization. I was told by the neuro.s. that in the same headache came back I should contact them, and let them decide if I should go for and MRI asap., based on your symptoms. Better safe then sorry the doc. said. So what I am trying to say is.., if you feel that you need to be insured that everything is ok....., react on it!!! Take care of you self., dont let the anxiety take you..., react to be sure that your are ok, so you can deal with the anxiety, best way possible.
All the best to you :-)
Hi Tim! Thanks for your response!
Yes, today, the weather is beautiful!, and I am thankful because spring has been a little slow to start up here. lol. I have to admit, my neurologist did not take much time to listen to my new symptoms. It is probably because she has never treated an AVM before which is why I had been referred to my neurosurgeon who is outside of the practice. I am hoping to get in touch with neurosurgery this week as the symptom is persistent and getting worse. I'm sure even the smallest conversation would help ease some of my anxiety, getting a date for embolization would probably help just a little more too! lol. The waiting game really sucks. I've always been an upbeat, pretty even keeled person, but having an AVM has definitely tested that an bought on a new meaning to the term, patient. lol.
Best of wishes to you! :-)
Will do, THANKS TRISH!
And I agree, even just the smallest amount of reassurance would be helpful.
Thanks for responding, I was hoping someone on here could relate because as you probably already know, information on the internet regarding AVM's are considerably limited and I can't find any information that lists this specific symptom. My AVM is 4cm and has many feeders, which is why they opted to leave it alone for so long, but with the increase in symptoms over the years and increase in vision loss they are concerned and feel that now is the right time to begin to treat the AVM, but now, I'm waiting and the waiting is a little unnerving too, especially as new symptoms arise. So I will check in with my neurosurgeon again and pray and I get in touch with someone.
Was there ever any specific medication that would help you with that pain? I am taking Tylenol and motrin and I have to say, both are not that effective in addressing the pain and tightness. Is there anything I could do to decrease blood flow to that area? I mean, I've tried many natural remedies like drinking all natural tart cherry juice (for inflammation) and not engaging in activities that would increase blood pressure in my brain (like lifting weights) also, avoiding stress as much as possible, but as you can see, it isn't really doing much to decrease the symptoms.
Thanks for your insight Allen!
Best wishes to you!
You are more than welcome to look at my profile for more information about my "journey". I am taking morpine for the headache. It helps for me. But I am going to see a team of doc. in june to see if they can do anything better for me. At the moment I am also taking steroids do to gamma knife.
I am also getting medication to control blodpressure.
It is very important that you talk to a neuro.s. that have treated AVM. Every singel one is special and most be treated like that :-)
almost forgot.... I know that many people with bad headache is help by medication with amitriptylin. I have tryed something called saroten (amitriptylin) but i had to stop again because of sideeffects :-( But I know alot of people is helped by it :-)
Thankfully I had a conversation with my neurosurgeon today, he told me that it was probably an increase in pressure in that area, but not to be alarmed, that if it were a bleed, I'd know the difference, he also assured that I would get a call no later than tomorrow afternoon with my first angiogram/embolization date and time. I've been anxiously waiting a date for a little while now.
Also, I have taken amitriptyline last year and found that I didn't like the side effects either. My ns encouraged me to take over the counter pain meds and that if it got out of control head to the emergency room for something stronger. (I've had my fair share of hospitals so I'll just tough it out at home).
I will be sure to take a look at your profile. Thank you!