My four year anniversary of my craniotomy was in Feb. Since the removal of my avm from my right frontal lobe I've suffered from what they term chronic and persistent migraines & new daily persistent headaches. There's always head pain..does anyone else have this problem and has depression been issue?
I hope they find some sort do relief for you. Why was your avm removed via surgery. Were other options like gamma knife considered.
Unfortunately due to the location, size, etc. My neurosurgeon felt that if it wasn't removed surgically at that time, it would have burst.
It's been four years and I wonder if that was the right choice. I've been to multiple neurologist over the years to no avail. It even feels like the doctors at Mayo are at a loss. It's discouraging, but I can't be the only one - right?
Hi Ashley. You may wish to join this sub-group…http://www.avmsurvivors.org/group/otc-pain-meds-vs-prescribed-pain-meds. Have you tried acupuncture? Many people on here have found some relief that way. Also, see if there is a pain clinic in your area. Sometimes they are very helpful. As far as depression goes…are there any neuro-psychologists that you can see? These are psychologists who specialize in traumatic brain injuries.
I have tried acupuncture before, but would love to do it again. Thank you for the suggestions. I'll definitely be looking for a neuro psych in my area. Thank you!
Ashley I feel like we our living in sync with each other! I over the past 7 years have tried so many medicines to try and get my horrid headaches under control. Yea no luck :-(. I still have my AVM but it is now close to being gone but I have gone from only the cold months October to April (I live in NY). To all yr having 2-3 days in a row where I cant get out of bed or off the couch. My 10 yr old has to help take care of me while my husband is at work. It’s horrible it should be the other way around. Or I can’t go and play with him because the headache is bad so if I do anything it will turn in a horrible one. I take topamax and vicodin along with another headache medicine. Along with amitripoline they have up the topamax and the amitrip. But it’s not working its stinks!!! Hopefully soon they will help all us headache suffers out!
Hi Ashley.......i am copy pasting one of my previous posts on a similar topic in this same website....i hope this helps you.........pain is the constant symptom in AVM....you basically do not see any instance where it does not exist....may be some days the pain is less & someday the pain is unbearable.....most of the times the unbearable pain suddenly appears when u least expected it.
I have recently completed my formal COGNITIVE REHAB.....my doctor has taught me a breathing pattern technique which can reduce anxiety & stress in less than 10 seconds. BUT we must have faith that such a exercise will give relief. Else we would be distracted while performing the exercise.
The exercise is....irrespective of whether you are standing or sitting or in the middle of a huge pile of traffic jam or in the middle of a serious conversation...the minute you feel an unbearable pain..u will notice your breathing pattern changes & u become so conscious & fearful of the sensation in your head....so in that instance just take a very deep breath IN at a constantly slow pace & simultaneously bloat your belly & fill it with the inhaled air. Stay in this position for about 10 seconds without any speculation or anxiety & just feel like u r enjoying a fun exercise. Now after 10 seconds release the air - exhale & reduce your belly posture & blindly believe as though it gave u some releif.
You will be surprised in less than one minute you will feel more relaxed & positive & better. Please use this technique any number of times during the day. It helps.