my a/d has been getting more painfull

[DEAN57]

over the last 5 to 10 a/d attacks the burning has been getting more powerfull. the burning is so intence now and stays with me for 2 to 4 hours before slowly droping off to nothing. is it normal the burning to be getting worst ? are there any new tricks to try and control the burning ? t-6 a/v malformation 5.5 years of pain

[firesmurf]

Dean just what are you referring to with "a/d attacks"?just wondering.so you have or had an avm inside your cord?has this been resected at all or is this all from it just being there?i had/have(still have ten percent left behind)a cavernoma that at first was thought to be an AVM.it took an angiogram to finally find out that it was not(thank god) an AVM but a cav instead.just where is your pain located?and what meds are you currently taking for this?

when was the last time you actually had an MRI done on that area?this could be repeated bleeds that are causing your pain to slowly increase.just a thought.has your AVM ever bled at all?how big is it?my cav was approx around 2x4x6 at the time of Dx and was getting bigger from repeated bleeds.it eventually would have paralyzed me from the chest down when it decided to actually bleed again.and from what my NS told me,that next bleed would most likely come within the year from when the last one was,he told me mine was just an active "bleeder".but luckily,unlike the AVM you have that is a high pressure lesion,the cavs are fed veinously so my bleeds were more of an ooze type of thing.

are you aware of a site called the angioma alliance?it really was a life saver for me while i was going thru all that came along for the ride while contemplating the surgery and then thru out all the fun and major drama i had to deal with after it.this site has by far the most in depth info availiable on cavs and mostly AVMs.there are many many people who are living with these crappy things inside their brains and cords,geez some even have multiples,like up to ,in some cases,15 of these things inside their brains.unbelievable really.

If you haven't heard of this site before,i would very highly reccomend you go there and read thru it.there is just soo much really good info there.the one big problem with treating patients with these things is that there are many many NSs out there who either don't have a clue as to how to treat these or they actually still believe that AVMs and cavernomas actually cause NO PAIN.unbelievable in this day and age but unfortunetly very true.the url for this site is www.angiomaalliance.org go there and read thru it,you will be really amazed at how much info this site actually contains that all pertain to what you have inside of your cord.i wish you luck Dean,Marcia

[David Berg]

I know pitifully little about autonomic dysreflexia, but from everything I understand about it, there has to be an underlying cause and that should be identified and addressed. I wasn't aware that burning sensations were part of AD, but most of my knowledge is in the area of neuropathic pain and I hear about that complaint there on a regular basis.

[firesmurf]

Soooo THATS what it is.okay,now i know.i suffer a certain level of this too from the extensive SNS damage I had during the surgery to remove the cav.the first indication was my out of control heartrate immedicately post op,and I ahve never ever suffered from any sort of cardiac issues,thats what I remeber when waking up from the anesthesia,a bunch of people running around and talking about meds they were giving me and talking about the monitor and what they were seeing there as things were not going well with my heart rate at all.it took them almost an hour and a half(with my family going crazy cuz they were told over two hours before that that my surgery was done and they could see me in about a half an hour)but my heartrate would not stabilize for quite some time.my BPs were also going all over the place.first they were very very high,which is not the norm for me at all.then i started suffering from orthostatic hypotension,then we would go back up agin.now things are for the most part hypo.what are your exact symptoms with this?

about two weeks and two days into post op recovery and in rehab,the horners syndrome set in,scared the crap outta me to se one pupil huge and the other really constricted.thats when i was told that it was from the 'nerve damage'but no one mentioned that most of the sns was really a mess.i found that out later.

this has affected many different things now.is this pretty much the same thing that you are suffering with Dean?was this just there one day or did you aquire the ad some other way(born with this??) ,like just from having the AVM affecting your SNS within the cord like mine did?

I would think that any actual neuro pain would be stemming from the AVM and what it is actually affecting.if this is affecting your spinothalmic tract,you could actually be dealing with some sort of central pain.it really sounds much more possible just from the research i have had to do just to try and understand all the neuro crap that came along with my spinal cord damage.

if your AVM is within your actual cord,it IS affecting at least one or two tracts.that much I do know just from my cav being within the cord.depending on just where it is within the cord would determine which tracts are being affected.do you happen to actually have any MRIs at home that have been done on your AVM? if so,there is a way to narrow down just what possible tracts are being compromised by your AVM.its pretty simple.Marcia