Sun Aug 22 20:28:27 EDT 2004
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Jack_(Angioma_Alliance) entered the room.
You are in Angioma_Chat.
There are 7 people in the room.
 
Jack_(Angioma_Alliance): Hello everyone!
 
NJ_Girl: Hi
 
Aussie: g'day
 
NormaVilla: Hello
 
Michelle: Hi!
 
Sues: HI
 
Jack_(Angioma_Alliance): Is everyone as tired as I am tonight? 
 
Aussie: Hey it's 10:30 am in australia!!
 
Jack_(Angioma_Alliance): g'day!!!
 
Jack_(Angioma_Alliance): where in Australia are you?
 
Aussie: Sydney
 
Jack_(Angioma_Alliance): I've always wanted to travel there
 
Michelle: I'm feeling good tonight
 
Jack_(Angioma_Alliance): We'll wait another minute or two for stragglers before beginning.
 
NJ_Girl: Personally, I'm a little apprehensive. I know that knowledge is a good thing, but ...
 
Jack_(Angioma_Alliance): Hopefully I'll be able to communicate a little more knowledge b4 the end of this evening.
 
Jack_(Angioma_Alliance): Glad to hear you are doing well, Michelle!
 
Guest4095 entered the room.
 
Sues: I just wanta keep ontop of this thing!
 
Michelle: Me too!
 
Jack_(Angioma_Alliance): I think we all do.
 
Aussie: I just have some specific questions for later....
 
Jack_(Angioma_Alliance): OK, let's get started.
 
Jack_(Angioma_Alliance): First I want to thank Frank
 
Jack_(Angioma_Alliance): for setting this up for us!
 
Jack_(Angioma_Alliance): Kudos!!!
 
Guest4095: hi everyone is this chat with people that have brainstem angiomas
 
Jack_(Angioma_Alliance): Yes...welcome guest!
 
Guest4095: ty hi all i'm debbie
 
Jack_(Angioma_Alliance): Hi Debbie
 
Sues: HI debbie
 
Jack_(Angioma_Alliance): My proposed format tonite is to upload each question I've received to date followed shortly by my answer. If I have one! After I upload the answer, then all comments are welcome.
 
kab entered the room.
 
Aussie: Will we have a chance for more questions later?
 
Jack_(Angioma_Alliance): Once we finish the pre-fabricated question/answer period. I'll open it up to any additional questions assuming we have time. I'm planning for roughly 1 hour or so. Does that sound ok?
 
NJ_Girl: Sounds good!
 
kab has left the room.
 
Michelle: Sounds good!
 
Connie entered the room.
 
Guest4095: sounds great
 
Aussie: yup
 
Jack_(Angioma_Alliance): Hi Connie
 
Sues: great
 
Jack_(Angioma_Alliance): Ok....here we go
 
Connie: Hi all
 
kelly entered the room.
 
Connie: Hi Kelly
 
Jack_(Angioma_Alliance): Q.When following the conservative approach with a brainstem angioma, how can we be best prepared when surgery becomes more of a possibility? I am comfortable with my diagnosis and my approach but the doctors I am with may not be the ones I want to perform the surgery.
 
Jack_(Angioma_Alliance): A. If you haven't already, you may wish to field a second or third opinion. Many neurosurgeons will offer a by mail or telephone consult free of charge. It would be best to contact them by phone first and inquire about a second opinion after briefly relating your diagnosis. You'd be responsible for the cost of mailing your MRI slides and radiologist report to the neurosurgeon of your choice. Sometimes this can take awhile and you may need to be proactive in following up. In our healthcare system, the squeaky wheel gets the grease!
 
kelly: hi connie I am new to this
 
Jack_(Angioma_Alliance): grease
 
Jack_(Angioma_Alliance): Any additional comments on this question?
 
Michelle: Do you believe some of the presenters at the June conference would be willing to consult by mail/phone like that?
 
NJ_Girl: Jack, I have done this with two other opinions over the years. Neurosurgeons seem to like hearing about other cases.
 
Jack_(Angioma_Alliance): Michelle, yes, depending upon case load
 
Sues: I consulted by mail in Arizona but do not think my insurance will cover surgery there.
 
Jack_(Angioma_Alliance): You can always ask. All they can say is no.
 
Jack_(Angioma_Alliance): Insurance is a big concern for a lot of folks.
 
Connie: They always add a caveat that their input is not a "medical opinion" as they can't give that without actually seeing you.
 
Guest4095 has left the room.
 
Michelle: It is hard to really see anything from the outside. The MRI is kind of "me"!
 
Jack_(Angioma_Alliance): Any other comments on this question?
 
debra entered the room.
 
Simon entered the room.
 
Jack_(Angioma_Alliance): Hi debra and simon...welcome
 
debra: hello everyone
 
Simon: Hello
 
Jack_(Angioma_Alliance): We're just going through questions and answers 1 by 1 as I received them earlier this week.
 
Jack_(Angioma_Alliance): After each question/answer, I solicit additional comments.
 
Simon: Okay
 
Jack_(Angioma_Alliance): If we have time at the end, we can open it up for general discussion.
 
debra: ok
 
Jack_(Angioma_Alliance): Ok, next question and answer.
 
Jack_(Angioma_Alliance): Q. I am wondering if any one else is experiencing the feeling of their eyeball being squeezed, droopy or migraines in their eye? Are there any explanations for why caffeine would help? I know caffeine is supposed to shrink blood vessels, does this make sense?
 
Jack_(Angioma_Alliance): Part 2: Does anyone know the connection? When I get stressed is my blood pressure going up and pushing extra blood through this angioma to make a tiny, tiny bleed, to cause these short term symptoms? If yes, should I discuss with my doctor possibly lowering my base-line blood pressure a bit so the highs wouldn't be able to get so high? My blood pressure is always in the normal range.
 
Simon: I don't have this sensation. But, I have been told to stay away from caffeine. Has anyone else?
 
NJ_Girl: Yes, no/limited caffeine.
 
Jack_(Angioma_Alliance): A. The caffeine explanation sounds logical to me, but I'll have to defer to our panel of experts on this. Once I get a reply back, I'll let you know. Has anyone else noticed this? What is your "normal" blood pressure? When you have a cold or get sinus congestion, do your neurological symptoms worsen?
 
debra: NO but i do find after my blood pressure goes up with stress i suffer and feel terrible after
 
Connie: I'm just guessing, but caffeine probably has the double effect of constricting blood vessels to reduce migraine pain while raising vital signs (not necessarily good for angiomas)
 
debra: Stress I find sure adds to symptoms
 
Simon: Whenever I get stressed all of my symptoms become worse.
 
debra: me too and it can last for days
 
kelly: mine too pre and post surgery
 
Michelle: So what do you suppose the stress is really doing to these angiomas? Jack- thanks for passing my question to the panel.
 
Sues: my double vision becomes triple when really stressed!
 
Jack_(Angioma_Alliance): We know that lesions are dynamic
 
Michelle: Don't you need 3 eyes for triple vision?
 
Jack_(Angioma_Alliance): they can change size and volume
 
Jack_(Angioma_Alliance): over time
 
debra: I get unbalanced and shaky and very tired
 
Jack_(Angioma_Alliance): the exact mechanism behind the stress factor is something I don't have an answer for.
 
Jack_(Angioma_Alliance): but maybe one of our big guns can explain it
 
Michelle: Blood pressure was never discussed at the angioma alliance conference in my memory
 
Jack_(Angioma_Alliance): Just so you know, the chat transcript will be published on the site, with expert answers to come once we get them.
 
Michelle: Excellent!
 
debra: My doctor does not believe me about the stress
 
Jack_(Angioma_Alliance): So, Michelle has stumped us for the time being.
 
Jack_(Angioma_Alliance): any other comments on this question?
 
Connie: Doesn't stress also release extra hormones? I don't think enough is known yet, but maybe we could ask if the experts if they think this may have an impact.
 
debra: that would be great Connie
 
Jack_(Angioma_Alliance): At any rate, it seems like all of us have had this experience to some degree.
 
Simon: Why do common minor stressors become so much more significant to me?
 
Connie: In what way?
 
Michelle: I'm guessing all of us Simon
 
Connie: Symptoms or reactions?
 
Michelle: For me symptoms.
 
Simon: Conversations in a group is an example.
 
NormaVilla: How so, Simon?
 
Simon: Symptoms and reactions. I tend to sleep poorly and obsess on minor issues such as getting my medication on time.
 
Simon: I have a hard time communicating quickly and find I sit back and don't express myself within a group. I used to be in high end sales so this has been a huge change in my personality.
 
NormaVilla: I am not an angioma patient-=-my daughter is and I see in her what you might be experiencing. That is a delay in processing information and reacting.
 
Sues: I am experiencing the same thing. I can't seem to think fast enough, or concentrate fully.
 
Simon: Yes, that is true. By the time I want to say something, the conversation has moved on.
 
debra: I find that too Simon a delay I mean
 
Michelle: I'm 1.5 years past my dramatic bleed and feel my brain is still healing every day. This was also very hard for me 6 months ago. And I was in a similar type of job. Our neurons aren't firing fast enough to keep up.
 
kelly: I experience that now too
 
Jack_(Angioma_Alliance): I'm not sure there's an easy answer to these observations
 
Simon: I find that this sucks. And it has put a damper on my and my wife's social life.
 
Jack_(Angioma_Alliance): since the cognitive portion of our brains isn't really located in the brainstem
 
Michelle: Time is healing me. I have seen a serious improvement just this month.
 
Jack_(Angioma_Alliance): Ok, I'll jot this one down for the experts
 
Jack_(Angioma_Alliance): Next question...
 
Jack_(Angioma_Alliance): Q. What preventative measures (to prevent lesion hemorrhage) can/should be taken?
 
Jack_(Angioma_Alliance): A. Keep blood pressure as low as possible in the normal range. Don't take blood thinning medication such as aspirin. Don't subject yourself to violent forces such as those found in rollercoasters, etc. Otherwise, until the mechanism by which these lesions bleed is found, don't alter your normal routine.
 
Jack_(Angioma_Alliance): Are there any other precautions any of you have been given by your doctors?
 
Simon: How much alcohol is too much?
 
Jack_(Angioma_Alliance): Funny that wasn't really brought up at the conference
 
NJ_Girl: my doc said " a glass of wine with dinner on occasion" I've found, however, that it's easier to refrain.
 
Jack_(Angioma_Alliance): But I got the feeling that light to moderate drinking is ok
 
Simon: I have been told to watch my alcohol intake to even just 1 glass of wine once in a while for fear of thinning the blood.
 
Michelle: That was my impression too.
 
Michelle: Oops - my impression was the same as Jack's.
 
debra: Good question Simon
 
Jack_(Angioma_Alliance): I can ask if there is any specific alcohol intake guidance
 
NJ_Girl: other preventative measures include a low fat diet, regular moderate exercise and no smoking.
 
Jack_(Angioma_Alliance): any other input on this question?
 
Aussie: Input from Australian doctors (experienced!) is that
 
Michelle: I actually take blood thinning medication for a herniated disc and find that I can correlate stress to my episodes, but not the occasional use of this blood thinning med.
 
Aussie: drinking is fine but you must stay hydrated...most of the bleeds
 
Aussie: he has seen is from dehydration on flights, farm work on tractors etc....
 
Jack_(Angioma_Alliance): interesting...did the doc explain how hydration affects this?
 
Aussie: still doing research, but this guy has been into the brain stem MANY times...
 
Jack_(Angioma_Alliance): which doc is it?
 
Aussie: prof Michael Morgan.
 
Jack_(Angioma_Alliance): I'll see if I can pull up anything on that
 
Jack_(Angioma_Alliance): ok, anything else on this one?
 
Michelle: Another preventative...I was told to keep my heart rate below 85% of my max while exercising.
 
Simon: Where is he in Australia?
 
Aussie: Sydney
 
Simon: Thank you.
 
Aussie: Exercise...aerobic is fine...but heavy lifting is out.
 
Aussie: I am a triathlete.
 
Michelle: Before and after your bleed?
 
Aussie: before...don't know after. sorry
 
Jack_(Angioma_Alliance): what about push-ups?
 
Jack_(Angioma_Alliance): is that considered heavy lifting?
 
Aussie: no probs...just no headstands eh!
 
Aussie: no valsalva (sp?) motions.
 
Michelle: What's that?
 
Aussie: Hold your breath and push.
 
kelly: I was told no straining
 
Simon: Is sex a risk?
 
Aussie: I have never held my breath during that
 
Jack_(Angioma_Alliance): lol...
 
Michelle: I guess you better breath!!!
 
Jack_(Angioma_Alliance): sex was not singled out as a risk
 
Jack_(Angioma_Alliance): even childbirth is ok as long as you are monitored
 
Simon: I mean the rushing of blood to the head, 
 
Jack_(Angioma_Alliance): hahaha...ok next question b4 we get into trouble here...
 
Michelle: Childbirth is full of valsalva motions
 
Jack_(Angioma_Alliance): Q. What surgical procedures are effective? What are their benefits and risks? Are there any new technologies in development?
 
Jack_(Angioma_Alliance): A. Microsurgery which removes 100% of the lesion is the most effective treatment. "Expectant management" is the modality of treatment in those cases where the lesion is considered not surgically accessible. As far as non-invasive technologies go, "Gamma Knife" studies are controversial. The majority of research literature shows that Gamma Knife can cause latent, radiation-related symptoms 6 to 9 months post procedure. Gamma Knife does not result in lesion obliteration. The University of Pittsburgh continues to study Gamma Knife and cavernous malformations.
 
Simon: I have heard that the Cyberknife is good for lesions outside of the brainstem.
 
Jack_(Angioma_Alliance): Cyberknife is something I've recently come across but haven't delved into it too much yet.
 
NJ_Girl: Are certain centers more on the leading edge of research than others?
 
Jack_(Angioma_Alliance): Pittsburgh is radiation central
 
Jack_(Angioma_Alliance): Barrow in Arizona is microsurgery central
 
Michelle_2 entered the room.
 
Jack_(Angioma_Alliance): Hi Michelle 2
 
Simon: My knewest bleed is in the Pons (I had one 4 years ago in the brainstem and had the blood vessels removed). Has anyone had surgery in this area of the brain?
 
Michelle_2: It is just me. This isn't working well from my Mac so I've switched to my Windows machine.
 
debra: has anyone here had the angioma removed and noticed considerable difference
 
Jack_(Angioma_Alliance): Michelle 2: It's probably Mac-related. This uses a form of java which may only run ok on Windows.
 
NJ_Girl: No surgery here, just 'watch and wait.'
 
Aussie: Me too.
 
Sues: same here
 
Jack_(Angioma_Alliance): waiting here
 
Michelle_2: Angioma in my pons - also watch and wait - no surgery
 
Simon: Since Dr. Neil Martin at UCLA and Dr. Heros in Miami both studied under Barrow, is it okay to go to one of them or better to go to Arizona?
 
Jack_(Angioma_Alliance): Heros comes highly recommended from others
 
Jack_(Angioma_Alliance): There are a bunch of Barrow trainees out there now
 
debra: Are any operable
 
Simon: To Debra: Yes, I had the angioma removed 4 years ago and the only lasting problems I had were the double vision which was corrected with glasses and some numbness in my left side.
 
Aussie: Mine is. It is on the forward outside, right side of pons.
 
Connie: Usually what determines if an angioma is operable is how close to the surface of the brain it is.
 
kelly: I had my ca removed - I am not sure what the question was about this-
 
Michelle_2: Or if it is touching the wall of the brain stem from what they said at the conference
 
Jack_(Angioma_Alliance): The breakpoint is usually within 2mm of the brainstem surface
 
Simon: Can one die from not having it removed?
 
debra: I am fumbling with a choice of operation or not. operation could cause more probs
 
Jack_(Angioma_Alliance): debra...how many bleeds have you had?
 
Michelle_2: As far as can one die from not having it removed...They told me mine will keep bleeding in the same spot which didn't kill me the first time and won't kill me - just irritate me
 
debra: I have had 2 so far and had another mri on saturday
 
Sues: mine is, but my neuro from Cleveland and one from Arizona want to wait.
 
Jack_(Angioma_Alliance): Mortality is a possibility, but morbidity is more likely.
 
debra: I have multiples
 
Jack_(Angioma_Alliance): The more aggressive the lesion, the higher the chance of death will be.
 
Connie: Docs also look at how old you are, how severe your symptoms are, etc in determining whether to do surgery.
 
Jack_(Angioma_Alliance): I'm going to move on due to time constraints...
 
Simon: Are there any statistics available regarding ca on the pons and mortality?
 
Jack_(Angioma_Alliance): There's a mortality question coming up in a bit.
 
Connie: Jack, do you know of anyone who has died directly from a pons hemorrhage?
 
Jack_(Angioma_Alliance): Not off the top of my head.
 
Jack_(Angioma_Alliance): But there are research reports documenting mortality.
 
Jack_(Angioma_Alliance): ok...next question
 
Jack_(Angioma_Alliance): Q. Are there experts who specialize in brain stem cavernomas?
 
Jack_(Angioma_Alliance): A. Yes. Spetzler, Steinberg, Heros, Ogilvy, and plenty of others. It's probably best to read our community forum to get recommendations from patients who have undergone successful surgery.
 
Jack_(Angioma_Alliance): Q. What recommendations are there for patients in relation to childbirth and work? Any experience with disability?
 
Jack_(Angioma_Alliance): A. Childbirth can go forward with close monitoring. A few Angioma Alliance patients have successfully delivered children without suffering a lesion hemorrhage. I'm not sure what you mean about "any experience with disability".
 
Jack_(Angioma_Alliance): Not sure if the poser of this question is here tonight.
 
Simon: Watch out for those who receive money to "study" this. We had a major problem where the surgeon wanted to wait so he could study the effects of a major bleed on me. Meanwhile, there are really only about 5 people who can do such a sensitive surgery and they don't just study it.
 
Michelle_2: I would definitely go for the c-section and not risk a bleed as I welcome my new baby into the world.
 
Connie: Some docs also recommend an MRI at some point during pregnancy
 
Aussie: What about anti clotting drugs during operations?
 
NormaVilla has left the room.
 
Jack_(Angioma_Alliance): Usually you declare pre-existing conditions
 
NJ_Girl: My docs ordered c-sections for me as well. I bled six weeks after the first, but not the second. No MRIs ordered.
 
Jack_(Angioma_Alliance): prior to surgery
 
Jack_(Angioma_Alliance): They should know the risks with blood thinning and lesion history
 
Nvilla entered the room.
 
Jack_(Angioma_Alliance): If not, make sure to bring it up.
 
Aussie: Ok. Jack you mentioned
 
Michelle has left the room.
 
Aussie: anti inflamitories (sp?). Can you recommend any I can take????
 
Aussie: short term.
 
Jack_(Angioma_Alliance): Sorry, I can't. I'm pretty ignorant on the drug scene.
 
debra: Has anyone stopped working due to their condition or find that it is harder than it was before
 
Jack_(Angioma_Alliance): I can send that up to the experts though.
 
Aussie: thanks
 
Michelle_2: Ask your doctor to prescribe the one with the lowest occurance of bleeding ulcers.
 
Simon: I tried to start working again 3 years after my brain stem surgery and then got knocked down with my latest bleed. It doesn't look very promosing at this point.
 
debra: You had surgery and a bleed again
 
Simon: Yes.
 
Aussie: Was it a separate lesion?
 
Simon: Both in the brain stem. I have other lesions as well throughout the brain.
 
kelly: from another angioma?
 
Simon: It seems that blood vessels can grow back even after the surgery which removed them.
 
Simon: So, now, it is even more dangerous to go in because of how deep the blood vessels are.
 
debra: Oh that is interesting to know and speak with the surgeon about
 
Jack_(Angioma_Alliance): Simon, do you havea family history of CCM?
 
Simon: Yes, we have just found that my mother has it as well. She just got diagnosed this past January.
 
Sues: I have not worked for the past year due to symptoms rearing and affecting my position at work.
 
Michelle_2: I stopped working for a year and am now only working 10-15 hours a week, which feels like 40 since I have to work harder to think than I used to.
 
Simon: Yes, it is exhausting trying to concentrate like I did before the bleed.
 
Simon: I nap.
 
Simon: Naps are good.
 
Jack_(Angioma_Alliance): I think those that have the familial form may have a continual problem with lesion genesis even post surgery.
 
debra: I am having great difficulty at work as I am pushing myself and in my position the stress level is getting to mke
 
Sues: I am grateful to my workplace for the Long Term Disability.
 
NJ_Girl: I stopped working about 2 years ago. My company doctor was concerned that the stress was causing the frequency of rebleeds to increase. I haven't bled since I stopped working.
 
Jack_(Angioma_Alliance): Ok, we have 6 more scripted questions left
 
Michelle_2: Long term disability -You lucky dog!!!
 
Simon: Debra, it is not worth the stress and putting yourself at risk.
 
fsarwatka has left the room.
 
debra: taht is what i am considering but $$$$
 
fsarwatka entered the room.
 
debra: Ok sorry Jack
 
Simon: Check into all the government support, etc. available.
 
Jack_(Angioma_Alliance): No problem...we can continue with a general discussion at the end.
Jack_(Angioma_Alliance): Q. What protocol do you recommend when a patient first feels symptoms of a re-bleed?
 
Jack_(Angioma_Alliance): A. Immediately contact the neurosurgeon. They'll order an MRI and depending upon the severity of the symptoms and the MRI scan, they may recommend surgery.
 
Jack_(Angioma_Alliance): Don't wait.
 
Jack_(Angioma_Alliance): Q) What is the likelihood of repeat bleeds?
 
Jack_(Angioma_Alliance): A. It depends on the research study! It's been suggested that lesions which have bled once have a higher chance to bleed again than a stable lesion. General consensus is 3% per year, cumulative.
 
Jack_(Angioma_Alliance): Some studies have shown a ridiculous rebleed rate...like 30% per year
 
Jack_(Angioma_Alliance): But some of these have patient selection biases
 
Jack_(Angioma_Alliance): which skew the results.
 
debra: Your chance is only 3%
 
Jack_(Angioma_Alliance): 3% per year, cumulative
 
Jack_(Angioma_Alliance): so over 10 years
 
Jack_(Angioma_Alliance): you have a 30% chance
 
Michelle_2: A neurosurgeon in New York explained to me that these CA ooze every week, sometimes a lot, sometimes a little. When it is a little you have a bad day, a bad headache, more numbness, on a big bleed, bigger symptoms. I thought that was an interesting theory and seems to jive with what I feel.
 
Jack_(Angioma_Alliance): Believe it or not, some neurosurgeons disagree on the definition of "hemorrhage"
 
Michelle_2: You may not have any symptoms for months or years if it is oozing very little.
 
Jack_(Angioma_Alliance): Q. What is the mortality rate is for someone who has brainstem angiomas?
 
Jack_(Angioma_Alliance): A. It depends on the study. There really isn't a very good overall number. Earlier studies had relatively high post-surgical mortality rates. Recently, mortality rates have been relatively low, but morbidity is quite high. Surgery in such "eloquent" brain areas has become much more successful over the past 5 years as techniques have been refined. The important criteria for a successful surgical outcome is the condition of the patient just prior to surgery, as well as how deeply seated the lesion is.
 
Connie: Also, there's an incredible amount of variability in rebleeding - some folks never have a second bleed, while others have major rebleeds yearly. It's hard to interpret the statistic.
 
debra: I feel they don't know enough about them at this point
 
NJ_Girl: what are the different definitions of hemorrhage
 
Jack_(Angioma_Alliance): they don't, but we know more than we did 10 years ago
 
Jack_(Angioma_Alliance): internal hemorrhage, external (exophytic) hemorrhage
 
Jack_(Angioma_Alliance): hemorrhage must present with clinical symptoms
 
Connie: There is the kind of hemorrhage that makes the angioma grow, and the kind that bleeds outside of the angioma
 
Jack_(Angioma_Alliance): Dr. Awad has practically written an entire chapter on this topic alone.
 
Jack_(Angioma_Alliance): Q. I am a 34 year old male. I have had one brain stem surgery 4 years ago and recovered quite well. My main problems have been with my eyesight. Is "twisted" double-vision something that is being dealt with successfully?
 
Simon: Is it better to keep having bleeds that cause damage such as loss of sight, motor skills, memory, etc. than to operate?
 
Jack_(Angioma_Alliance): I would say no.
 
Connie: At the conference we learned that there is a definite "right time" to do surgery.
 
Jack_(Angioma_Alliance): but again it depends
 
Connie: It's before the symptoms get too bad
 
Jack_(Angioma_Alliance): if neurological deficits are progressive and permanent
 
Nvilla has left the room.
 
Jack_(Angioma_Alliance): surgery is almost a must
 
kelly: what is "twisted" double vision?
 
Jack_(Angioma_Alliance): I have no idea...I was hoping the questioner could explain that
 
Jack_(Angioma_Alliance): A. I'm not sure what "twisted" means in this case. Depending upon the type of visual impairment, there are special prizms (Franzel prizms) that can be used to correct for double vision. If you haven't, you might wish to consult with a neuro-ophthalmologist who is trained in this area.
 
Simon: We had the neuro-opthamologist do surgery to correct both a vertical as well as a horizontal double vision. That's why it's twisted.
 
kelly: I just scheduled eye muscle surgery this week for nov
 
Simon: The double vision is up and down, side to side and a bit twisted. The Frenels cannot correct the twist.
 
Michelle_2: I'm an advocate for vision therapy - physical therapy for your eyes.
 
Michelle_2: My eyes work better than before my one became paralyzed. It is a bit hard to find a truly qualified practitioner. Lots of quacks out there.
 
Sues: Sounds like most of us have double vision here.
 
Jack_(Angioma_Alliance): yes, it does seem very common
 
Jack_(Angioma_Alliance): regardless of where in the brainstem the lesion is located
 
Michelle_2: Did anyone not have double vision at some point?
 
debra: i did not,
 
Aussie: Neither did I
 
kelly: mine came only after surgery
 
Connie has left the room.
 
connie entered the room.
 
debra: I get what I call waves of vision
 
Michelle_2: What does that mean?
 
debra: I feel it waves when I look from one thing to another
 
NJ_Girl: I haven't experienced double vision but it does get blurry.
 
kelly: could that be nystagmus?
 
Jack_(Angioma_Alliance): anyone here have nystagmus?
 
kelly: me
 
Sues: yes..I also have that
 
kelly: mine is actually al;most gone
 
Michelle_2: what does that mean?
 
Jack_(Angioma_Alliance): what type of nystagmus?
 
NJ_Girl: what is it?
 
Jack_(Angioma_Alliance): involuntary eye movement
 
Sues: I just developed that 4 mo ago.
 
Jack_(Angioma_Alliance): usually in a particular direction
 
kelly: one eye is up and down and the other rotates
 
Sues: up and down
 
Jack_(Angioma_Alliance): the eye movement is continuous
 
debra: From the angioma Sues
 
Sues: yes
 
Jack_(Angioma_Alliance): it's a nasty symptom
 
debra: Very
 
Sues: hard to drive!
 
debra: And it is off and on
 
Jack_(Angioma_Alliance): hard to do anything
 
kelly: was terrible before and after surgery and many months later started to ease
 
kelly: right
 
Sues: very hard to drive. motion makes it worse
 
debra: Yes
 
Jack_(Angioma_Alliance): there are many types of nystagmus
 
debra: I'm frightend to drive
 
Jack_(Angioma_Alliance): upbeat
 
Jack_(Angioma_Alliance): downbeat
 
kelly: fluorescent lights are the main thing that still bothers mine
 
Jack_(Angioma_Alliance): rotary
 
Jack_(Angioma_Alliance): horizontal
 
Sues: upbeat
 
Jack_(Angioma_Alliance): that's what I had as well
 
Jack_(Angioma_Alliance): Sues...where is your angioma in the brainstem?
 
Sues: did yours ease
 
Jack_(Angioma_Alliance): mine is gone, but i still have trouble with relative motion during head movement
 
Sues: pontomedularry
 
Jack_(Angioma_Alliance): mine is caudal medulla
 
kelly: same as mine
 
kelly: pontomedulary
 
debra: Is that the outter pons
 
Jack_(Angioma_Alliance): bottom of the pons
 
Jack_(Angioma_Alliance): ok...last scripted question
 
Jack_(Angioma_Alliance): then it's a free 4 all
 
Jack_(Angioma_Alliance): Q. I have had a new bleed in my brain stem this past April. The blood vessels are deeper within the brain stem (the pons) and I have chosen not to operate to remove them at this time. Is there a study I can be a part of that will also help subsidize costs for rehab, etc.?
 
Jack_(Angioma_Alliance): A. I am not aware of any studies targeting this specific problem. All the studies with which I am familiar are concentrating on the genetic component of this disease. Do you have any idea whether your case is sporadic or genetically based? In other words, are there others in your family tree who have been diagnosed with a cavernous malformation? A few of the studies in progress are listed at http://www.angiomaalliance.org/Ongoing_Research.html.
 
Jack_(Angioma_Alliance): Simon, I guess this was your question
 
Simon: Yes, it is.
 
EFER entered the room.
 
Jack_(Angioma_Alliance): Ok...have you enrolled in any of the genetic studies?
 
Simon: Yes, the one in Colorado
 
Jack_(Angioma_Alliance): Do they just take blood and/or tissue?
 
Simon: Blood.
 
Simon: My mother contacted them a few times and no one has gotten back to her so that she and others in my family can also get involved.
 
Jack_(Angioma_Alliance): connie...do you know of any other research that would address Simon's question?
 
Simon: The hospital suggested we get involved with a study and ask to have our medical bills paid for. Is that reality?
 
NJ_Girl: I'm not surre if it will address the question, but Duke is studying familia ccms. They respond very quickly and require only a blood test.
 
Jack_(Angioma_Alliance): Connie and I toured the Duke lab a year ago
 
debra: That is where my family is going
 
Jack_(Angioma_Alliance): I don't know of any program that will cover all of the expenses.
 
Michelle_2: They have my blood!
 
Jack_(Angioma_Alliance): Most just take the samples to do the genetic research
 
Jack_(Angioma_Alliance): as that's where the real research push is these days
 
Simon: Does it look like there are any answers coming????
 
Simon: Is there hope of stopping the bleeds?
 
Jack_(Angioma_Alliance): They need to find the CCM3 gene
 
Jack_(Angioma_Alliance): They've isolated 1 & 2
 
Jack_(Angioma_Alliance): Then they have to figure out exactly what proteins are encoded by these genes
 
Jack_(Angioma_Alliance): and then figure out their function
 
Jack_(Angioma_Alliance): and where that function goes awry
 
Jack_(Angioma_Alliance): At that point, they can start working on preventative measures
 
Jack_(Angioma_Alliance): It's gonna be awhile unforutnately...
 
Jack_(Angioma_Alliance): at the family conference
 
Jack_(Angioma_Alliance): the idea was suggested
 
NJ_Girl: and I thought rocket science was hard ....
 
Jack_(Angioma_Alliance): that at some point in the future
 
Jack_(Angioma_Alliance): a pill would be created
 
Jack_(Angioma_Alliance): to interrupt the malformation process
 
Jack_(Angioma_Alliance): They think this is a real possibility
 
Jack_(Angioma_Alliance): but we're talking years.
 
Jack_(Angioma_Alliance): Of course,
 
Jack_(Angioma_Alliance): there could always be unanticipated breakthroughs
 
Jack_(Angioma_Alliance): Let's hope.
 
NJ_Girl: I think I heard that in relation to cancer treatment. Exciting stuff.
 
Simon: Are other countries ahead in any way?
 
Jack_(Angioma_Alliance): In terms of the genetic question?
 
Michelle_2: Are you in the US Simon?
 
Simon: Yes, but I am Canadian and also Australian.
 
Aussie: Cool...so am I Simon.
 
Jack_(Angioma_Alliance): Duke and Yale are right on the cutting edge of this research
 
Simon: Cool... I was born in Newcastle.
 
Simon: What about UCLA?
 
Jack_(Angioma_Alliance): I believe there are some researchers in France that are right on it too
 
Jack_(Angioma_Alliance): Don't know.
 
connie: Sorry guys, I stepped out for a minute or two
 
Jack_(Angioma_Alliance): Johns Hopkins in Baltimore is also running some research on this.
 
Diana_George entered the room.
 
Michelle_2: I noticed NJ Girl and I are both 39. Are most of you (with the CA) in your 30's?
 
Aussie: 46
 
Simon: How about surgery techniques? I am afraid I may need to move forward with my second brain stem surgery sooner rather than later. Anything going on in the world?
 
kelly: 42
 
Jack_(Angioma_Alliance): 42
 
Sues: 47
 
debra: I'm 47 and just found out in May of this yr
 
connie: Simon, in terms of your question - there isn't a study I know of. However, Chris Ogilvy at Harvard likes to keep track of outcomes for those who don't choose surgery
 
Diana_George: 59
 
Simon: 34. It started when I was 28
 
Aussie: Jack...question re. age...
 
Simon: Thanks Connie, I'll look him up.
 
Aussie: I read that as you get
 
connie: I was referring to your first question about subsidized rehab
 
debra: Has anyone ever had a feeling of falling while just sitting or standing
 
Jack_(Angioma_Alliance): Spetzler at Barrow is one of the big wigs.
 
Aussie: older...if you have not bled, the chances of a bleed decrease...ist this your understanding
 
connie: my daughter julia has that vertigo - it's awful
 
Jack_(Angioma_Alliance): I don't know how he has openings for new patients tho (the site indicates he does).
 
Michelle_2: My balance center was completely screwed up for 6 weeks following the big bleed, but then corrected over time after that.
 
debra: It is awful and makes you feel sick all the time
 
Sues: anyone else have the constant vertigo?
 
Jack_(Angioma_Alliance): Aussie: yes, that's true
 
Simon: Yes.
 
kelly: yes-getting much much better
 
Jack_(Angioma_Alliance): but it may be a case of statistical games
 
Jack_(Angioma_Alliance): since the bleed rate for stable lesions is roughly 1% per year, cumulative
 
Sues: kelly.. did you have surgery?
 
Jack_(Angioma_Alliance): If you're 80 and just diagnosed, then you'll onlhy have a 10% chance of a bleed by age 90
 
kelly: yes
 
Jack_(Angioma_Alliance): theoretically...
 
NJ_Girl: What's the difference between stable and unstable lesions?
 
Aussie: I love theory...
 
Jack_(Angioma_Alliance): but the numbers are just that...numbers
 
Jack_(Angioma_Alliance): stable = no hemorrhage
 
Jack_(Angioma_Alliance): unstable = a bleeder
 
connie: Jack, I think that lesions are supposed to get more stable with age even if diagnosed early
 
Diana_George: I am having surgery to removed the angioma on my right brachium pons on Sept 17 with Dr. Spetzler in AZ. I have had two bleeds, one in the fall 2002 and another in the fall 2003. My firest bleed was in 1985 and that one which is on the medulla has been dormant.
 
debra: I have heard people have had 2 bleeds in 1 year
 
NJ_Girl: Connie, I hope you are right!
 
Simon: Yes, it happened to me this year. One in the frontal lobe in March and the brain stem in April.
 
Sues: anyone ever have an episode where you feel as if something is pushing you to the floor while trying to walk or get up?
 
kelly: debra-while I am not the normal case-whatever that is- I had 2 major bleeds within 3 weeks of each other
 
debra: for us that have multiples that have bleed more than once now chances are they will rebleed again sooner than later
 
debra: so Jack is right numbers are only that numbers
 
Simon: For rebleeds, should we be thinking about surgery?
 
connie: Diana_George, best of luck with your surgery. Please let us know (through the forum or listserv) how you are afterward.
 
kelly: yes good luck diana george!
 
Jack_(Angioma_Alliance): Simon: absolutely, if in conjunction with additional or worsened deficits
 
debra: Kelly did you know you had 2 bleeds
 
Jack_(Angioma_Alliance): Diana--how has communication with Barrow been so far?
 
kelly: absolutely
 
debra: could you tell
 
Simon: But, it is so serious, being on the pons and all.
 
Simon: Would a second recommendation at Arizona be something y'all would suggest?
 
Jack_(Angioma_Alliance): Yup
 
Jack_(Angioma_Alliance): your case sounds very complicated
 
Jack_(Angioma_Alliance): especially given multiples and other members of your family being affected.
 
Aussie: Jack...I need to leave, but would like to thank you for organising this and look forward to more chats in the future!!
 
Jack_(Angioma_Alliance): have you gotten additional opinions?
 
Simon: Yes. I had a seizure about 6 weeks ago and it caused my bleed to leak and I have been learning to walk. It took my ability to walk away from me.
 
Jack_(Angioma_Alliance): Thanks, Aussie!
 
connie: Bye Aussie
 
Jack_(Angioma_Alliance): Hope you found it useful.
 
Aussie: c ya connie
 
Simon: Bye Aussie. Hope we get to speak again soon.
 
Diana_George: Spetzler told me that once they start to bleed you have a higher risk of more bleeds. Also with each bleed a little more damage is done to the surrounding tissue and I know from my experience with my last two bleeds I have had more damage to the fifth trigeminal nerve on teh right side of my face.
 
Diana_George: Bye Aussie.
 
Aussie: No worries mate...hit me at pwoods43@hotmail.com
 
Jack_(Angioma_Alliance): good on ya! 
 
Sues: bye bye aussie
 
Aussie has left the room.
 
Michelle_2: by Aussie! Nice talking with you!
 
debra: Good Luck Diana_George, let us all know how you are doing, Thank You Jack for the timeThe site is amazing and so helpful to all of us
 
Simon: I need to go as well. I have someone typing for me and we are getting tired. Best of luck on your surgery in September. I will try contacting Spetzler's office as well. Many thanks for the great information. good night.
 
Jack_(Angioma_Alliance): You're welcome, debra.
 
Jack_(Angioma_Alliance): Take care Simon...please keep us posted.
 
debra has left the room.
 
Michelle_2: Good luck Simon, I hope you find some help.
 
kelly: take care simon
 
Jack_(Angioma_Alliance): Debra, did Spetzler focus on the risks of surgery at all, or was he more or less cavalier about it? I know he's very aggressive when it comes to making decisions which are pro-surgery.
 
Michelle_2: Diana - I hope your surgery is successful in September and that you heal quickly.
 
Sues: Thank you Jack as well. I look forward to the next chat. Good luck to all.
 
Jack_(Angioma_Alliance): er....Diana...sorry.
 
Diana_George: Thanks, will keep youposted on my recovery.Spetzler recommended a book written by one of his former patients, Dipped into Ovlivion, by Saha Bonser... very good describes her surgery and recovery. Thanks jack.
 
connie: We love that book also. So far, it's not available in the US - you have to order from amazon.com.uk.
 
Simon has left the room.
 
Diana_George: Yes, that's right.
 
Michelle_2: Dipped into Oblivion was quite upsetting to me. If you have symptoms easily, I don't recommend rushing into reading it. Stress!
 
Jack_(Angioma_Alliance): I need to read it.
 
NJ_Girl: Thanks for the insight Michelle _2. I'll wait awhile.
 
Diana_George: It is upsetting; however, I found the book to be validating as well as inspiring for me.
 
Michelle_2: Yes - it was very validating. I shared so many symptoms with the writer.
 
kelly: I have never heard of the book- now I want to read it
 
Jack_(Angioma_Alliance): Anyone ever hear of Jean-Dominique Bauby?
 
connie: Sasha Bonsor's angioma was also in the medulla - lower and even more serious than the pons
 
kelly: no
 
connie: No, I don't know him either
 
Diana_George: No. Who is she/he?
 
Jack_(Angioma_Alliance): he was the owner of Elle magazine in France
 
Jack_(Angioma_Alliance): he suffered from a major bleed in the pons
 
Jack_(Angioma_Alliance): and became "locked in"
 
Jack_(Angioma_Alliance): the only thing he could move was one eyelid
 
Jack_(Angioma_Alliance): and he dictated an entire book using that one eyelid
 
Diana_George: What is locked in?
 
Jack_(Angioma_Alliance): locked in syndrome
 
Jack_(Angioma_Alliance): total paralysis
 
Jack_(Angioma_Alliance): except you are cogntively intact
 
Michelle_2: Is the book about his experience?
 
connie: His lesion was in the pons? not the medulla?
 
Jack_(Angioma_Alliance): pons
 
Jack_(Angioma_Alliance): BUT
 
Jack_(Angioma_Alliance): I don't know what type of lesion it was
 
kelly: wow- makes me feel like I am lazy-
 
Diana_George: was his venous or arterial?
 
Jack_(Angioma_Alliance): I haven't read his book yet...only the condensed version in reader's digest
 
Jack_(Angioma_Alliance): I was hoping someone might know what type of stroke he had
 
Jack_(Angioma_Alliance): they used the non-specific term "stroke"
 
Jack_(Angioma_Alliance): so, it could have been an AVM
 
Diana_George: Spetzler told me the brain could heal from minor bleeds, but not the major ones.
 
Jack_(Angioma_Alliance): or something else
 
connie: There is also Bonnie Sherr-Klein. We have her book in our Bookstore section. She had medulla surgery for CCM, became locked in, but then recovered.
 
Jack_(Angioma_Alliance): anyway....there's a movie coming out in 2006
 
Jack_(Angioma_Alliance): starring Johnny Depp as the protagonist
 
connie: bonnie klein is a documentary film maker who is now making her first film since her surgery in 1987
 
connie: Her's is a great story of family support and learning to live with disability
 
Jack_(Angioma_Alliance): well...I've gotta run
 
Michelle_2: Everyone take a drink of something - dehydration may cause bleeds... we have been talking almost 2 hours.
 
Diana_George: I decided to take the chance on surgery as Spetzler said he thought I had a 95% chance of recovery with minimal side effects. I like those odds better than the unknown risk involved in more bleeds.
 
Jack_(Angioma_Alliance): I hope everyone found this chat helpful to some degree
 
kelly: thank you so much Jack!
 
Michelle_2: Thanks Jack - it was very helpful.
 
Jack_(Angioma_Alliance): I'll be happy to entertain suggestions on format, etc.
 
connie: Jack, we can keep the room open awhile, for those who want to stay awhile
 
Jack_(Angioma_Alliance): Sure
 
Diana_George: Very helpful sorry I arrive a little late... thanks to all.
 
Jack_(Angioma_Alliance): Diana...we'll be posting the transcript
 
Jack_(Angioma_Alliance): later on the website
 
Diana_George: Thanks ...
 
NJ_Girl: Jacck, thank you so much for hosting this chat. It was helpful.
 
Jack_(Angioma_Alliance): I enjoyed it....goodnight all, and best of luck on your surgery, Diana.