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AVM Survivors Network

Brainstem Bleed

hey everyone- so I'm very confused or just seriously misunderstanding/misinterpreting info. My bleed was the summer of 2011. It just barely let me survive- I practically taught myself how to ambulate(via legs) again after being wheelchair bound for a long time. I suffered severer memory loss/impairment, numbness to my left side & right side of the face. I have vertigo and am deaf in my right ear. I also don't perceive depth anymore: I have a hard time balancing things towards environments. Although i have come along way I am confused. Most Dr.s I've seen can't believe I've survived. Ive read many posts all over the internet regarding AVMs locate around/or within the brainstem vicinity or directly, but I haven't read anything on someone who has survived a rupture in said location.
I have been hesitant posting this question/quandary for some time because i fear the worst for lack of similar success stories (not considering my own a success) or lack of actual survivors. Yet again this hope to find similar stories is a 50/50 because as comforting as it would be to find people with similar struggles that overcame this adversity; I honestly would not wish the nature of this malformation (let alone an AVM in general) on even my worst of enemies, honestly. A year later after release from the hospital i underwent cyber-knife surgery to obliterate the AVM. It takes about 2-3 yrs for radiation therapy to do its job but the handicaps I've acquired are not going to go away w/ the AVM being removed. It only removes the AVM;not the damage it's rupture has already done

If anyones' got a similar story they feel comfortable sharing or even good pointer in advice or pain relief (severe headaches, fatigue)or even ways to better cope w/ some of the changes this "AVM business" takes please get at me. Im very eager and hopeful to get any feedback at this point.

Honestly thank you &

god Bless you all :)

AD

Scott H.

Hi, Scott, this is an article about a woman who survived a brain stem bleed from avm: http://www.strokeassociation.org/STROKEORG/LifeAfterStroke/InspirationalStories/Katherine-Wolf-Former-Model-and-Brain-Stem-Stroke-Survivor_UCM_447596_Article.jsp

Our own dandelionwishes had several brainstem bleeds from her cavernous malformtion. Perhaps other members have had similar experiences. Try this search to find them: http://www.avmsurvivors.org/main/search/search?q=brain+stem

Or, better still, start a brain stem subgroup. Best wishes!

Here is another survivor: http://strokeassociation.org/STROKEORG/LifeAfterStroke/InspirationalStories/A-Personal-Experience-with-Brain-Stem-Stroke---Kristi-ODonnell_UCM_310658_Article.jsp

Hey scott this syte is the right place to come or if u have facebook
The link below is really helpfull

https://m.facebook.com/groups/240417436080497?__user=100006892419246

I was reading what youve said and everything sounds very simular too me i had my bleed in my brain stem/cerebellem on 13 march 2012 during my second lot of gluing/embelisation and after then spending 8 months in hospital/rehab i am so greatfull for nearly being a year at home, even tho it feels like yesterday as its still so fresh in my memory…i cant say everyfin like how i deal with this how i deal with that because i myt b going into things that you have no intrest in so u are welcome to message me on facebook if you want to talk (victoria kaye) i would say on here but i dont want you to think im ignoring you and i dont really know how to use this properly lol …x

this articles is awesome :) -not awesome that it happened to her but definately inspiring. We were the same age when we both acquired our injuries. thank you so much and God Bless :)

thnku for sharing w/me :) i will def add u on FB soon i really appreciate the advice offer me & the wifey really appreciate literally any advice for dealing with this as much as possible We are both always looking for new solutions and positive feedback to this situation :) ttys thnku

SDH :)

FB name is scott D harris might not be up yet will be soon

That fb link is for avm survivors and their families/carers too kind of equivalent too this site and found it very helpfull and friendly its alson helpfull for family members to talk to families that are going through a simullur situation x

Hello Scott,
SO glad you survived :) I, also, survived 3 brainstem bleed,the last time resulting in the "inoperable" surgery to remove it. I didnt have an AVM, but a CMM. Its very similar. Neurosurgeon here locally in Ohio all told me that it was inoperable, that I had a 1% chance of not having more bleed in the next 5 years, and that at any day until then, it could bleed, totally disabling me, or killing me, and surgery should only be performed then, because surgery was going to do the same effect. I found a Surgeon in Arizona willing to do the surgery, confident that I would recover after some rehabilitation, and a lot less chance to being mentally disabled like the other said I would. I chose to have surgery before another bleed happen, travelled in Arizona and had the surgery. Dr. Robert Spetzler saved my life that day. I needed some rehabilitation in the inpatient facility there, but only 2 weeks as opposed to the 2 months they told me the day after my surgery. I am now 8 months post op and doing really well. I have some permanent deficits like severe tinnitus, limitation of use of my right hand, memory loss and a bunch of little things like cant focus, get vertigo by noisy environment etc etc. I want to encourage people that have had a brainstem bleed to seek treatment by the best surgeons out there, to be agressive and pro active!!

Hi, Scott - my bleed was in April 2011, right before yours. I was completely asymptomatic before and was asleep for over a month, and then when I woke up I didn't believe anyone about the AVM story bc it sounded ridiculous. I was like, Don't be daft, people!!! I usually say my AVM was around the cerebellum, near the brainstem(ish). I recently saw my medical records from my neuro. and they mention the brainstem oftener than we ever talked about, which is why I'm replying.

At this point you and I are both around 2.5 years in terms of recovery. I've been told that the biggest gains are in year 1 and then it slows. I'm not a big fan of the slowing process, although I see it in my own life. I have had great success for pain relief (left side hemiparesis - no one ever said this word to me, I just read it in the reports), and overall mobility with acupuncture. I tried it bc I had nothing to lose (the drugs stopped working and just made me gain a boatload of weight), and it has been great. It can be hit or miss depending on practitioner, but my doctor is a TOTAL ninja. I was out of treatment for a couple of months this summer and I regressed - the pain was excruciating bc I had forgotten what it was like. So now I am confident in saying that traditional Chinese medicine has impacted my recovery significantly, and I will be careful not to ditch treatment if I travel for a long time. My CMD is a 100% Eastern Medicine trained LaC - worked and then directed acupuncture in a Chinese hospital and then in private practice in Europe then here. My Aunt/Uncle referred me. It has truly been a Godsend.

I have also had good success with vision therapy and pool therapy (feels more natural than land), and with hardcore PT's. I learned to walk in Sept 11, but my gait is still appalling. (Makes sense since a lot of the cerebellum was removed during the craniotomy. I comfort myself by saying that if I fall down and knock my teeth out I will get really nice veneers. I have told my dentist already - so my contingency plan is set). I was so into pool therapy (I changed rehab places last month) that I actually joined a gym this week. I am far along enough on the timeline to want to take next steps, and I know at least Ron's wife (he's a mod here) has seen good results with a personal trainer. What sealed the deal was that when I asked them if they had people on staff willing and able to take on a situation like mine they were 100% confident. I have high hopes that they will be able to help me improve my physical condition in a safe way.

Okay, I wrote you a book. Anyway, I wanted to mention a few of things bc I've been struggling with "next steps" - I'm significantly disabled (unable to live independently, drive, work), am beyond the timeframe traditionally looked on as the ripest for recovery, but desperately want to be an outlier in the research(like in the picture). I'm taking steps to this end as I'm able. I agree with dandelionwishes - be aggressive and proactive! Time will bring healing but I'm doing what I can to help it along.

Wishing you a fantastic recovery! :) www.annninglearninghow.com

215-10581500844_21b9369b6a1.jpg (24.9 KB)

wow 3????? my god thats fortunate sorry for the ignorance but what exactly is CMM???

Ann sorry its taken me so long to respond--I can read but it takes me some time and then a little more to process it. & don't worry i enjoyed the thorough writ lol by:) By eastern medicine what do u mean??? I'm always looking for more ways to better this!! I have a tumblr blog: it works but its def not as well-kept as yours :) Lookup Little Lion Man or autumndiver43

Thank you for sharing and def. keep in touch :)

SDH

dandelionwishes has created a brainstem subgroup:

http://www.avmsurvivors.org/group/brainstem-avm-cavernous-malformation

Sorry!! Its Cavernous Malformation!

lol no worries jus wanted to get my facts/terms straight so i can learn about what i don't know yet :p

Hey, Scott - now I'm the one who's a little slow on the uptake - so no worries! (as long as you excuse me, too - but coming from a similar situation we are more inclined to forbear with one another). I checked out Little Lion Man - I love those photo booth wedding pics! And it looks like you've got a fun group of friends, which is great. I sometimes see pics of my friends doing normal stuff and get wistful - my stamina is still rather poor, so late afternoon and evenings aren't great for me. This is why I love writing/blogging - it is so one-sided, and I can do everything when I feel like it!

To your question, Google: Traditional Chinese Medicine. I typically think of people trained in the East, e.g. China, as opposed to Western Medicine. A Western MD saved my life, and I'm not knocking it in any way - I just have found value in a completely different perspective, esp after my medicine stopped working, it made me gain weight, but all of the scans, poking, shocking etc. revealed that my left side/hip is physically sound, but I still needed pain relief in a big way. I am Chinese, but was born and raised here - so I'm so NOT Chinese compared to my acupuncture doc (CMD). I find out just how American I am every time I speak with her - it's so funny! But I'm just saying so to show that our perspectives really are different, even though I'm technically Asian, too.

One last thing: CMD betrays no surprise when I tell her that XYZ has improved. In fact, it is her expectation that things will improve bc that is what she has seen over the years in practice. She is also a lone voice of optimistic and action-oriented recovery in my landscape presently. Although I started treatment late (at the 2 year mark), and the damage is extensive (e.g. there has been removal of brain matter, so we're not talking solely about the brain's amazing ability to rewire itself), her philosophy is that although she might not be familiar with research in this area we're going to try (for a rockstar recovery).

My old insurance covered only X acupuncture sessions a year, and I'm now on Medicare as a long-term disabled person, so it's not covered at all, so I'm paying for everything out of pocket. Yes, it's a time and money investment, but I've had such a positive experience that I'm willing to make it - and it's definitely worth researching if you're looking for options.

Bye :) atnt

Of course!!! SOrry my answer was so short, i was running out of time! Here is a great article that explain the difference between AVM and Cavernous Malformation. They are very similar.

http://hoopsblog.projo.com/2011/08/cavernous-malfo.html

this is an awesome means of explaining the 2 thnku 4 the feedback how frequent were ur bleed may i ask?? and when did they start/end(?)....?

Hi Scott!!
I sent you a personal message to answer your questions in more depth!