Angioma Alliance

Cristina: I got your response... thank you...
Cristina: I was waiting to e-mail back until I met with some doctors and reached a conclusion, but unfortunately my visits with them this past week were not too helpful

Amy: Have you come here tonight with some additional questions that Kelly and I can try to answer?

Cristina: in the right parietal lobe of my brain

Amy: Did the doctors complicate things more for you?

kelly: what are they telling you

Cristina: it has hemorrhaged twice now, once last month

kelly: what are your deficits

Cristina: they said that it is entirely up to me, there has been no permanent damage to my vision yet (according to the neuor-opthamologist), but my symptoms were worse the second time

kelly: do you have nystagmus?

Cristina: i have no noticable permanent deficits, other than the problems associated with the hemorrhage (usually they last about a month)

Amy: How much time was there between your first and second bleeds?

Cristina: what is nystagmus?

kelly: a jumpiness of the eyes that causes it to be hard to focus

Cristina: about 2.5 years. there were some symptoms off and on between those times, but nothing that I was certain was a hemorrhage

kelly: often a short term deficit when there is brain related trauma

Cristina: well, I have had many vision problems that have made it impossible to read a book or concentrate on words, computer screen, etc. But nothing is permanent, it lasts temporarily

kelly: sounds like you are in a difficult spot deciding on surgery.

Cristina: my doctor seems to think that surgery might affect my vision
Cristina: Where were your cavernomas?

Amy: Mine was in my basal ganglia

kelly: mine was between the pons and medula of the brain stem

Ruth entered the room.

kelly: hi ruth!

Amy: Hi Ruth

Cristina: Hi Ruth

Ruth: Hi all

kelly: appears to be starting time. we have no presubmitted questions. my husband greg is helping me type this.

Amy: Maybe we can start by trying to address some of Cristina's questions?

kelly: to continue with cristina, i had no choice for surgery
Ruth: Can anybody tell me how to increase the font on this site?

Amy: Looking....

kelly: i looked at settings but did not see it

Ruth: Thanks anyway, I got magnifying glasses

Amy: Hi Bill12

kelly: so we just decreased the resolution of our desktop

Bill12: Hello

kelly: hi bill12

Ruth: Hi Bill12

Bill12: That's my mother-in-kaw's name !!

Amy: Ruth, can you try increasing the resolution on your PC itself? I can't see a place within the chat room to increase the font...Sorry!

Connie entered the room.

kelly: hi connie

Connie: Hi!

Amy: Hi Connie

kelly: we are trying to find a way to increase the font size for ruth

Ruth: Thanks...I'm ok now. Hi Connie

kelly: great

Connie: It's good to see everyone here.

Amy: thats good, Ruth.

DeniMom entered the room.

Ruth: May I ask what Christina's question was?

Amy: Cristina is faced with the option of surgery

kelly: we were just talking about cristina's choices for surgery

Amy: Her doctors fear the surgery may affect her vision - right now her deficits are temporary.

Ruth: Is this the second bleed?

Cristina: I didn't have a specific question I suppose, I have to voluntarily decide whether or not to have surgery (following a second hemorrhage)

kelly: hi denimom

Cristina: And the doctors have really left it up to me to decide

DeniMom: Hello
DeniMom: Sorry, I started reading. I should have said hello to everyone.

Ruth: Hi Denimom

Amy: Bill 12 and DeniMom: Are have you or someone close to you had surgery or faced with the decision of surgery?

Ruth: Cristina: I had my second bleed in February and had surgery in April.

Bill12: Yeah, I Cristina's dad.

kelly: ok

Cristina: Hi Dad, I thought maybe that was you

Amy: Well, welcome.

DeniMom: I am Sarah's Mom and wanted to hear everyone elses surgery and post surgery stories. Sarah had surgery on November 5th and is doing very well.

Cristina: Ruth, where was your cavernoma?

kelly: where was saray's ca?
kelly: sarah

Amy: Denimom: I just spoke with Sarah today

kelly: glad she is doing well

DeniMom: Sarah's CA was on the right side of her brain stem. It affected her 6th and 7th craniel nerves

Amy: Didn't they also find an AVM during the surgery?

DeniMom: I wondered if that was you Amy. Thank you for the great support you've been to Sarah. She thinks you're great!

kelly: is sarah home?

Ruth: Mine was on the right side of the brain stem also. It was on a nerve cluser...primarily laying on the 8th nerve

Amy: My pleasure...

DeniMom: Yes, they think they found an AVM, but they also think it may be thrombosed
DeniMom: Yes Sarah is home

kelly: is she left with deficits?

DeniMom: What does the 8th nerve effect?

Cristina: Did any of you have a choice about surgery? Or did your doctors recommend it?

DeniMom: Yes, Sarah has paralysis on the right side of her face. She also has some vision issues related to eye movement.

kelly: in my case i had a second bleed that dictated surgery
kelly: i also have vision related to eye movement

Amy: ultimately, I had a choice, but because mine had bled 3 times in 4 months, my doctor strongly recommended the surgery because of my age and because of how aggressive my CA was.

kelly: neiter eye moves out from center

DeniMom: 3 doctors recommended it. Dr. Batger in Chicago said "That thing has to come out, it can hurt her"

Ruth: The choice to have surgery was left to me, but the doctor strongly urged having it

DeniMom: How is it now Kelly?

Jack entered the room.

Connie: Hi Jack

kelly: in the process of eye surgeries
kelly: hi jack

Jack: hi every1

DeniMom: How long ago was your surgery Kelly and have you seen any improvement in your eye movement?

kelly: we just did a surgery that turned out to be a botox injection

Amy: Cristina: As I recall, you are about my age, correct?

kelly: into the muscles of the eye

DeniMom: How about you Amy, do you have any lasting effects (for lack of a better word)

kelly: it temporarily paralyses the muscle

Amy: Nothing major. I only notice things when I'm very tired - my speech and fine motor skills.

kelly: it caused my eye to start turning back to center
kelly: and moving again

Cristina: yes, i am 23... was 20 at the time of the first bleed, but felt symptoms for the first time when I was 19

Amy: Following my surgery, I had more speech problems, having problems getting my mouth to move the way I wanted/needed it to
Amy: Cristina: Well, thats to your advantage...

DeniMom: How long did it take everyone post surgery, to begin healing

kelly: thats a hard question
kelly: it is slow but steady

Amy: I really didn't feel "good" again for about 6 months. Although, I had my wedding six weeks following my surgery. But, yes, like Kelly said, that is a hard question.

kelly: it began right away and i know i am still continuing to heal more than a year later

DeniMom: I'm sorry Kelly if I missed it, but how long ago did you have your surgery?

Ruth: I am still healing

Amy: I noticed improvements for quite a while following surgery.

kelly: 1 1/2 years

DeniMom: Ah, you just answered. The surgery left you clairvoyant!

kelly: i knew you were going to say that

DeniMom: LOL

kelly: we have read that healing can continue for years if you work at it

Amy: I don't know what research says, but I continued to notice things for up to two years following my surgery.

kelly: i have seen people on the forum mention several years past surgery they are still improving

DeniMom: 2 years, that's great! I hope Sarah reads this tomorrow. I think she is going to join the chat tomorrow.

kelly: it did slow down for me

Cristina: do any of you wish you hadn't had surgery?

kelly: i'm glad i had surgery because i wouldn't be here otherwise
kelly: but i hate the deficits and the recovery is very hard

Amy: Not me, I'm glad I went with it - it definitely wasn't easy, but I'm glad that I don't have to worry about each and every headache now.

kelly: i feel for most of you facing the choice for surgery
kelly: i lived like that for about 3 weeks after the first bleed

Ruth: There are days that I wish I did not have the surgery. However, the affects of the 2nd bleed were more debilitaing than the first and I was told that the bleeds would only get worse. So it was best for me to take the chance

kelly: and the second bleed gave me no choice

Amy: I made the decision to have the surgery during/right after my third bleed. I was in pain and wanted to be done with it all - similar to Ruth and Kelly. I knew that things were going to continue to get worse.

Bill12: Kelly: the 2nd bleed gave you no choice - according to whom? Your doctor?

kelly: we did a lot of homework to find a good surgeon and he said another bleed would be devastating. we got a second opinion who said the same
kelly: both specialized in ca's
kelly: plus i had 2 major bleeds within a month

Cristina: well now I have had two bleeds (the second was worse, symptoms were more painful and debilitating) but my doctor said surgery is still my choice. Now that the symptoms have stopped, it is hard to make the choice for surgery since I feel fine today

kelly: i can see that
kelly: technically the doctor said it was our choice

Ruth: What were your symptoms?

kelly: but he made it clear that it was not much of a choice
kelly: we found out it was bleeding when he removed it
kelly: so i would have died he believes

Amy: Its hard to say what I would have done if I had recovered from my third bleed and felt fine at the time, thats a tough place to be in Cristina.

Ruth: Christina, how long ago did your second bleed occur?

kelly: it's hard because even people who have ca's in the same place, surgery and recovery can be quite different

Amy: Thats a very good point, Kelly.

kelly: at the family conference they were told that surgery deficits would be similar to another bleed

Cristina: I had painful headaches, numbness and weakness in left side, could not move my arm and leg without picking them up, could not read, lost vision in my left eye, lost my hand-eye cooridination so I could not pick things up, could not focus on words or anything
Cristina: It bled again last month

kelly: but we were encouraged that they should fade over time

Jack: Cristina, where is your lesion? (sorry if you have to repeat the answer since I came in late)

Cristina: THat's fine, right parietal lobe

Jack: In both cases, you've recovered 100%?

Cristina: Kelly - did they mean those deficits would be permanent or temporary?

kelly: there is no way to know and i understand that it is very common to at least get back to where i was pre surgery

Cristina: With the exception of a very slight loss of vision in left eye, noticable only from field of vision tests at the neuro-opthamologist

kelly: i would say i am better than pre surgery

Jack: has yours grown in size with time, or stayed about the same?

kelly: that is great that you recovered that much but it makes your decision difficult

Cristina: stayed about the same, it is ~ 1.5 cm in diameter... my doctors have all used the word "lucky" when referring to my complete recovery from the two bleeds

kelly: have the assessed how difficult the surgery is? is it accessible?

Jack: Yes, you're very fortunate. Glad to hear it.

Cristina: Jack: where is (was) yours?

Jack: Still have it. Medulla oblongata.

DeniMom: Just my opinion and obviously, I am not a doctor, but in Sarah's case, it was a good thing she had the surgery, as she would have been at a greater risk, had she not. They found the AVM and was not completely sure when they removed her CA, that it was in fact a CA. They thought it might have been an anurysm. That was with 3 doctors saying it was a CA, judging from the films. The doctor's included the doctor considered to be "the best".

kelly: fyi, we had different opinions from different surgeons about how operable it was

Cristina: Kelly - it is definitely accessible, on a scale of easy to difficult, would be more on the side of difficult based on the adjacent areas, but doctor said i have a "good chance" of being 100% functional (not 100% normal) after the surgery

kelly: when we searched for a doc who had a lot of experience with brainstem ca's he was more comfortable with the odds of a good outcome

Amy: In my case, my first neurosurgeon said my CA was inoperatble.

DeniMom: They did not even know Sarah had an AVM until they got in there.

kelly: how many opinions have you gotten cristina

Cristina: Jack - are you considering surgery at all?

Amy: DeniMom: good point - sarah's could have been so much worse had her AVM or or aneurysm burst.

Ruth: My first bleed didn't come to the surface. They could only do surgery after the second bleed.

Jack: I'm currently not a candidate for surgery. Mine is buried almost dead center in the medulla. Also, I've been fortunate to have only a solitary bleed, and most of my symptoms have resolved.
Jack: DeniMom, did they to an angiogram prior to surgery?

Cristina: I had two opinions 2.5 years ago, now I am relying on my dr at UVa solely to perform the surgery and consult with me about it, though I have considered going to Duke for another opinion

kelly: we fedexed the mri films to 2 other surgeons around the country who had experience at this and got a concensus

DeniMom: Yes, she had 2 angiograms

Jack: wow, and they couldn't tell definitively from either?

Cristina: Jack, glad to hear that your symptoms have mostly resolved

Amy: Denimom: When I talked with sarah tonight, she said she has to have another angiogram again, right?

Jack: thanks...so am I.

DeniMom: No, because of the placement of it, in relation to the CA. The CA was actually covering it somehow.
DeniMom: Yes, she will have another angiogram in 4-6 months.
DeniMom: That is why I feel if you are a candiate for surgery, you should seriously think about doing it. Once they got in there with Sarah, they found much more than what they originally thought was going on.

kelly: to be honest we had the same
kelly: they wondered if it had stopped bleeding

Amy: DeniMom: Sarah sounded great when I talked to her on the phone

kelly: when they got in it was hemoraghing, was larger than thought and was growing into floor of the 4th ventrical

DeniMom: She is doing great, now that she is eating. Her little sister just changed my colors.

Cristina: How old is Sarah?

DeniMom: She had a hard time keeping food down. Something about the nerve that causes motion sickness. Sarah is 25
DeniMom: Interestingly, she thinks a trip to Cedar Point last June may have started her symptoms

Jack: Cristina...I take it you are in Virginia?

Amy: What is Cedar Point? I thought a trip to Six Flags may have irritated mine.

DeniMom: She began having paralysis on the right side of her face in July and was dianosed with Bells Palsy first.
DeniMom: Cedar Point is an amusement park, like Six Flags

Amy: Interesting...

DeniMom: Yep, that might have to go on a list of things NOT to do

Cristina: Actually, I am in NC right now, was in VA at the time of my diagnosis and initial hemorrhage, but I have kept my doctor at UVa

Jack: Who's your doc? (I'm in Northern VA)

Cristina: Dr. Neal Kassell

DeniMom: Her recovery nurse told me that some of those rides are very dangerous even for people with no issues. Your brain actually moves inside of your skull during the big rollar coaster rides. I'm not sure to what degree or what she meant, but made me think twice about rollar coasters.

Cristina: maybe I should cancel my trip to Disney World

Amy: yes, I won't do roller coasters anymore either.

Jack: Cristina, has radiosurgery ever come up in discussions with your doctor?

kelly: or just not got on any thrill rides while you are there

DeniMom: Don't cancel Disney! There are a lot of things to do there, without being on a coaster
Cristina )

Cristina: radiosurgery was never presented as an option, it was always either intrusive surgery or nothing at all, he reiterated that when I saw him 2 days ago

Jack: good for him!

kelly: our doc said we could do radio surgery but we probably would not survive it

DeniMom: Why did your doctor say that Kelly?
DeniMom: Is it because of where your's is located?

kelly: in that area of the brain stem they have had very little success as we understand it
kelly: very dangerous

DeniMom: Really?

Jack: for CCMs, yes
Jack: for AVMs, it's a whole different story

DeniMom: Sarah's doctor told us, that if her AVM was not thrombosed, they would use radio surgery to kill it (for lack of better word)
DeniMom: Thanks Jack

Jack: radiosurgery works great on AVMs

Bill12: One of Dr Kassel's specialties is radiosurgery, but he doesn't recommend it for CAs

Jack: many of them, anyway

DeniMom: I read you do not do radio surgery for CA's

kelly: curious if sarah is doing any kind of rehab?

DeniMom: No she's not in re-hab

kelly: that is great

DeniMom: The paralysis is only on the right side of her face and vision.

Cristina: do they suspect that it will be temporary?

DeniMom: I don't know if there is anything she could do to expedite the healing of her face

kelly: i did speach therapy to strengthen my mouth
kelly: and there is facial retraining that i may do at some point

DeniMom: They are hoping it is temporary. Her mass (CA or whatever) was sticky on the 6th and 7th nerve. That worried her doctor

kelly: but i have been told it is not time yet.

Amy: Didn't they think the paralysis of her face is from the blood products and swelling of her brain. I think she mentioned that following her surgery, her face was fine?

DeniMom: I'd like to know about the facial retraining

kelly: my balance therapist does it
kelly: she indicated that you do not start it for some time after surgery

DeniMom: Immediately after surgery, Sarah had no paralysis. But within about 2-3 hours it began showing up.

kelly: she told us that she works with people to learn new ways to move facial muscles

DeniMom: I'll have to look into that.
DeniMom: You guys are all so brave and strong!

Jack: For those of you who have had surgery what, if anything, would you do differently given what you know now?
Jack: do differently

kelly: get in shape before hand
kelly: if we knew were were doing it i would have gotten into better shape before

Jack: aerobic? strength?

kelly: after all that time in a hospital bed weakness was my worst enemy
kelly: strength

Amy: Umm, I'm not sure. I think I would have pushed to get off the anti-seizure meds sooner - they made me SO tired.

Ruth: My doctor had me take physical and occupational therapy in the few weeks prior to my surgery. That was a very good plan and I would recommend it!

kelly: we met people in rehab who were doing hip replacements and their docs had them do strength training first

DeniMom: Sarah took minerals, vitamins and natural supplements to promote nerve regeneration

Amy: When I saw a neurologist he explained that obviously my EEG's were going to be abnormal because I had a hole in my head so he took me off the meds and I felt so much better.

DeniMom: She of course got the go-ahead from her doctor first

kelly: the muscle attrophy from laying in bed for so long is why i had to do rehab
kelly: that is great amy

Jack: the meds thing can really be a negative feedback spiral
Jack: i hate medication

Cristina: ditto

Amy: The other thing I would have changed (but didn't have control) would have been to actually been eating and drinking before my surgery.

kelly: me too

Cristina: what do you mean?

Amy: Due to my third bleed - I wasn't keeping food or water down. I thought it was the flu or something because my head wasn't hurting.
Amy: But, after a week of this, I finally decided to bit the bullet and see my doctor.
Amy: I was so dehydrated they had a hard time starting an IV.

Jack: that'll make ya weak

Amy: Yup!

Jack: ok, so lift weights, eat and drink, and get a real comfy bed...

DeniMom: Yes Amy, that's a good point. Sarah lost at least 8 pounds, maybe more, from being so sick afterward

Amy: I remember how weak I was after my shower following my surgery. I thought I was going to pass out.

kelly: this is kelly's husband. i would say one thing we did right was do surgery close to home

Amy: DeniMom: yes, I think I lost like 10 pounds during my surgery and stay in the hospital. It was great afterwards eating whatever I wanted to try to put weight on - and man, with that anti-seizure medicine the pounds came on fast!

kelly: we considered going out of town and that is good for some we talked to but for us
kelly: it was good to have the support structure
kelly: of friends, family, church, etc

DeniMom: Why is it better to be close to home? I wanted Sarah to go to AZ and she wouldn't

kelly: i lost 35 lbs in the hospital
kelly: i looked at barrows institute
kelly: and mayfield clinic
kelly: and cleveland

DeniMom: Wow, 35 pounds!

kelly: but we happened to have a very well known surgeon here
kelly: the head of nerosurg at cleveland clinic said he would take his wife to him

Ruth: Actually, they had me in therapy because I was having tremors in my right arm and leg and because I have dbl rotating nystagmus'. I'm still in physical therapy for another week. I'm older than most of you, so I don't heal as fast. I would mention the steroid treatment sooner also. They had me on steroids from April to July...my reaction was to gain 48 lbs

kelly: so we stayed close

DeniMom: We also got an opinion from Barrow, and Chicago

kelly: we were in the hospital for some time

Amy: Thats a good point - My surgery was about 2 hours away and it was an inconvenient having to find hotel rooms for our family members - it took an extra amount of planning.

kelly: and it was huge for us to be close to the kids

DeniMom: That was the steriods Ruth, are you still taking them?

kelly: but keep in mind kelly's surgery was in the brain stem and was somewhat difficult

Ruth: No, they took me off of them in July.

Jack: Ruth, you still have the nystagmus problem?

Cristina: Did any of you have complications due to psot-surgery swelling or infections? I have read about that being a big setback sometimes...

Ruth: Yes. One eye rotates 1/4 turn clockwise (slowly) the other rotates 1/4 turn counter clockwise...more rapidly.

Amy: No, no infections or swelling. I did have an allergic reaction to one of the anti-seizure meds and that was nasty.

kelly: no on setbacks for us

DeniMom: What about emotions after the surgery? Was everyone pretty happy it was over, were you feeling down, still scared,,,etc?

Jack: Ugh...sorry to hear that.

Amy: I had hives and my throat was swelling.

Jack: Shunts can be a problem
Jack: they get infected a lot

kelly: emotions is a whole other topic

Amy: DeniMom: That was one of my other major problems - I felt down because I wanted to be "back to normal".

kelly: it is a rollercoater

Ruth: No infections or swelling.

kelly: rollercoaster

Amy: And, being newly married, it wasn't always pretty

DeniMom: I'm listening

Ruth: I'm with Kelly ... rollercoaster

DeniMom: That's not true Amy, I saw your pic

kelly: kelly's husband here. i watched her go through a lot of emotions
kelly: she struggled with slow progress
kelly: went from thrilled to be alive to struggling to get going

Amy: I often got frustrated that I didn't have the stamina and strength I had before.

DeniMom: Oh I see you said "It" wasn't always pretty

kelly: just reached a point where she wanted her life back like it was
kelly: she had very low energy after surgery
kelly: and had to build back up again

DeniMom: How long was the low energy and was that the surgery, or was that emotions?

Cristina: Did most of you find that your doctors underestimated the recovery time? My doctor has said it would be ~ 6 weeks... seems like a short amount of time to me...

Amy: DeniMom: yes, there were stressful times between us. Sometimes he'd come home from work and I'd be a basketcase.

kelly: docs estimated 2 days in icu and a week on the floor

DeniMom: Did you have anyone staying with you during the day?

Amy: I went back to work 9 months following my surgery and really had to push myself to do that.

kelly: kelly had 8 days icu and2 weeks on the floor
kelly: followed by 2 weeks of inpatient rehab

Amy: Yes, my sister stayed with me before she had to go back to school.

Cristina: wow

kelly: yes i was babysat as ruth and i call it

DeniMom: I second that Cristina

Connie: on the other hand Cristina, some folks with frontal lobe surgery have amazingly fast recoveries

Ruth: My doctor estimated 6 weeks to get back to before the 2nd bleed. I had surgery April 12 and didn't get out of the hospital until May 4...and as I said, I'm still in physical therapy

Connie: parietal lobe is usually much easier than brainstem

kelly: i have heard this
kelly: location, location, location
kelly: our neighbor's son had a ca about the same time we did

Connie: my daughter Julia had surgery in left parietal and in right parietal - she's just a little one, but her recovery times were quite short

kelly: he was home in a day and a half
kelly: and they had to keep telling him to stop running

Cristina: that's good to hear

Amy: I thought that area was to your advantage as well...

Ruth: I had an aneurysm clipped behind the left optical nerve in the carotid artery. With that surgery, I was tired and had short term memory loss. I did fully recover from that surgery

kelly: our surgeon described it by saying that in other areas of the brain if they accidently damage some healthy tissue it is not that noticable

DeniMom: That must be so hard for you Connie

kelly: but in the brain stem it is all so highly concentrated it is more difficult

Amy: Did anyone else have a functional MRI before their surgery?

kelly: what is a functional mri?

Ruth: No, I had a regular MRI and a gradient echo MRI

kelly: we had a gradient echo as well

Connie: thanks denimom - she's an amazing little girl

Amy: While I had an MRI, I had to perform certain functions and then stop and not think about anything else - they could tell what part of the brain was stimulated and controled that function.
Amy: For example, I had to do math problems, move certain body parts on command - it was actually a long procedure, but important. It helped my surgeon map out the route to get to my cavernous angioma.
Amy: They had to cut through "healthy " brain tissue to get to my CA.

Jack: everyone's "functions" originate in slightly different places of the brain compared to others
Jack: so a functional MRI is great for making sure they don't cut into something valuable

Amy: Right - that was the background info they gave us.
Amy: Why don't more hospitals/doctors use Functional MRIs?

Jack: cost maybe? dunno.
Jack: it should become a standard

Connie: i could find out from Dr. Awad

Ruth: In the case of the brainstem CAs, the area is so condensed , They did the MRIs for location, but when they did the surgery they used a "stelth"

Amy: I thought perhaps its a relatively new technology and since I was at a teaching university, they felt it important. I found that they were very thorough at UW-Madison. At first, they weren't sure I had a CA, so they actually had done a chest X-ray in case it was cancer - looking for the primary tumor

Connie: I don't understand all the latest technology, but fMRI isn't all that new

Ruth: They attached 10 electrodes to my head. The was it was explained is that they can then place like a wand in an area and they can see exactly where the safest route to the CA is.

Amy: yes, could you maybe check with Dr. Awad, Connie?

Connie: Dr batjer talked about stealth at the conference. I could ask Dr. A about both

kelly: before we run out of time does anyone have a question that they want to ask the group?

Amy: Not me.

Ruth: Does anyone have the nystagmus problem? They are trying to slow mine with medication, but it doesn't seem to be slowing it very much

kelly: i still have some

Jack: mine resolved on its own, fortunately

kelly: not often

Connie: What medications do they use for nystagmus?

Ruth: The doctor has me taking Baclofen and Neurotin

Connie: Thanks ruth

Ruth: It has slowed the rotation some, but I still have trouble with any fine focusing

Cristina: did anyone notice increased frequency (and worsening symptoms) of hemorrhage as time went on? My doctor said it is possible that mine will never hemorrhage again but that seems very unlikely to me

kelly: they believe i had one 2 years before

Cristina: if I knew that I would have future hemorrhages, I would definitely opt for surgery, but I guess there is always the possibility that I will never have a problem with it again

kelly: then had a second and third withing weeks

Amy: Yes, my third bleed was worse than my first. I don't know when I had my second bleed but they could tell by the blood products.

Ruth: I had no additional symptoms until my second bleed. I knew I was in trouble when I couldn't put the "t" stroke in my name

kelly: each bleed left me with worse deficits

Jack: some lesions are extremely aggressive; others bleed once and are never heard from again. It's all lesion and location dependent.
Jack: the ones that bleed within a short time span are the ones that need immediate attention

DeniMom: I would find it interesting to know if anyone has any symptoms in hind-sight, that they did not know was a symptom until they were diagnosed.

Ruth: The second bleed left me with the dbl nystagmus', tremors on my right side, and my right foot turns under. They said the next one would problably leave me a vegetable if it didn't take my life

Cristina: short as in weeks and days?

Amy: Like 3 times in 4 months...?

Jack: weeks to a few months
Jack: yes, Amy

kelly: denimom - yes.

Connie: Cristina, lots of times decisions are based in part on how young a person is - the younger you are, the more likely you'll have another bleed in your lifetime.

Jack: that would qualify

kelly: i had blurred vision that we now know was nystagmus, difficulty breathing that we thought was asthma, etc

DeniMom: Sarah had some fainting during her early teens around her cycle

kelly: that is a whole other track to go down

DeniMom: She also had a prism in her glasses when she was very young.

kelly: a lot of theories and speculation about cycles

Amy: DeniMom: I have heard from other women that symptoms are worse during certain parts of their cycles.

kelly: mine were

Cristina: Connie: after having two (maybe more) between the ages of 20 and 23, I am skeptical that it will not bleed for the rest of my life

DeniMom: It just makes you wonder how long these things hang around before they become symptomatic

Amy: In my case, looking back, I had lots of headaches in college which may have been attributed to my CA.

DeniMom: And if there is anything one can look for way ahead of the major bleeds

kelly: i always will wonder if i was born with it or got it when i was pregnant

Cristina: I had some symptoms (ringing in ear and tingling on left side) when I was 19 a year and a half before they found it

DeniMom: That's interesting Kelly, but my understanding is it is at least somewhat genetic

Connie: kelly - you were born with it

DeniMom: How about siblings?

Ruth: I was born with bilateral venous brainstem angiomas...my vessels developed through them. The cavernoma is a result of them. As I got older I began having headaches, they just kept increasing in severity. Then I started losing my balance and weaving when I walked or drove

DeniMom: Sarah's doctor said I should not worry about her 2 sisters

kelly: jack or connie could elaborate but i understand they can be inherited or sporadic

Connie: if sarah only has one cavernous angioma and there aren't any odd neurological things in other family members, the doc is probably right

DeniMom: Nosebleeds?

Connie: Doesn't count
Connie: Seizures, unexplained deaths
Connie: hemorrhagic strokes, MS

DeniMom: No, nothing like that.

Connie: No worries

Amy: DeniMom: My mom struggled with this after my experience - I have two younger sisters. When one of them began having migraine-like headaches, then she had an MRI to check it out, but was okay.
Amy: So, unless there are major symptoms - nothing to worry about.

Ruth: Actually, I was first diagnosed as having depression. Then an optomitrist told me that my lenses were smaller and so I must be seeing double because my nose was in the way. I was misdiagnosed for about 6 months

Connie: Had your nose ever been in the way before?

kelly: lol

Ruth: No. Just an Irish pug nose.

kelly: we had the same types of misdiagnosis
kelly: brain bleeding is just not the first thing they think of

DeniMom: and it's usually the last thing we think of

Ruth: I guess what I'm trying to say is that I don't really believe that you can look for any one thing as a trigger. Although...nystagmus' are indicative of a brain stem problem they tell me

kelly: any other questions or comments?

DeniMom: None here

Ruth: None here

Amy: nope

DeniMom: I take that back. Thank you to everyone for sharing tonight. Be well and be happy.

Bill12: No questions - this was great

Amy: Happy Thanksgiving!

Connie: Kelly, you and Greg did a great job. Thanks so much!

Jack: thanks for the chat, everyone

kelly: cristina - i hope we have not scared you about surgery
kelly: we all have different situations and i know we cannot always help make a difficult decision like yours

Ruth: Cristina: good luck with your decision

Amy: Yes, good job Kelly and Greg - great teamwork.

kelly: but we wish you best of luck with your decision

Ruth: Thanks to all of you.

kelly: and if we can help you know where to find us

DeniMom has left the room.

kelly: goodbye to all of you and thanks for a good chat

Connie: Good to hear from you Ruth

Cristina: thank you all, I have learned a lot and I am still making my decision, but appreciate your supprt and advice

Connie has left the room.

Amy: Cristina: If I can answer anything else, don't hesitate to contact me (you have my email)

Cristina: I will, thank you again for your answers earlier and tonight, they are much appreciated

Cristina: how do i sign off ????

kelly: close the browser window will do it

Bill12 has left the room.

Amy: You can just close your browser or click the icon at the bottom with the little guy and the door.

Ruth has left the room.

Cristina has left the room.

Amy: You guys can head out - I'm going to save the chat...