Living With Cavernous Angioma

Frustrated to say the least...

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Ok... so here is my story.. in 1996 I was having terrible headaches, I mean killer headaches, but assumed they were always migraines (my Mother suffered with Migraines) so I loaded up on Advil, and toughed them out.  Well, when they became bad, a friend suggested I tell a doctor ,who questioned my self diagnosis, and sent me for a CT scan.  Well, that was scary enough, because they wouldn't let me leave when it was done, and kept staring at me, and calling people to the window, and they kept staring at me, and every once in a while would ask if I were ok.  The next day I go for an MRI.  Later that day the doctor calls me in.  So he said, have you had a headache recently, so I said yes this past weekend...while having company over for dinner.  So he said, yes well you were probably having a bleed.  Off I go to Neurosurgeons, and he puts me through the battery of Neuro tests... touch your nose, follow my finger...(we all know the grill) and tells me that what I have, I have had my whole life... It is called and Angioma, not to worry, and I probably do have migraines... so I will send you to an Neurologist.  The Neurologist said the same thing.  Offers to prescribe Imitrex, injectable (I think that was all that was available).  The family practice guy gives me Fioricet. Which just made me feel numb.  Fast Forward to 2005.  In the meantime, I was given high blood pressure medicine, which helpled tremendously, and Imitrex Tablets.  But one day in August of 2005, I woke up on a Saturday morning, feeling dizzy.  I mean real dizzy.  (a feeling I have come to learn to live with)  Let me add that I was going through an especially rough period with my family, my Dad was very ill, was over 500 miles away in a rural part of NC, and I was being pressured by family to quit my job, and leave my home, and move there to help my sister care for my Dad.  There were usually fights, I mean bad fights on the phone with my sister once or twice a week, with an occasional fight with my Mom.  As a matter of fact, that Friday before, we had an especially bad fight, while I was at work.  
I go to the doctor, and he diagnosed an inner ear infection.  I go back a week later, and he said my blood pressure meds were too high, so he tells me to stay off of them.  (You want to know why he said that... I was standing up in my court yard, took a step because I saw two clay pots, didn't know which one was real, and took my chances, and the one I stepped was the real one, so I fell.)  I did that for a week, felt no different, so I thought, he is nuts, I am going back on.  So then he is at a loss, and he said to my boyfriend, (now my husband), well the one thing it isn't is a stroke. So I asked him if I should have an CT, remembering back to 1995, and he said, If you want I won't argue... so I have the CT, which I had to schedule, and get approved from the Insurance company, and then had to tell the Doctors office to send the Rx to the CT facility... The doctor calls me the next day to tell me that they need an MRI.  So off I go for an MRI.  The doctor calls me the next day again, sounding very worried.  Tells me that I will probably need brain surgery, and sends me to a Neurosurgeon.  Now this was about 2 months after I first went to him.  The surgeon tells me that I have many Angioma's, and the one causing the issue is on my brainstem, and he isn't anxious to operate in that area.  The Neurosurgeon sends me for an Cerebral Angiogram.  The first thing the Neuro-radiologist said when I told him what brought me to this point was... Well, you had a stroke, you realize that, right?  So my husband said, actually, we were told that the one thing it wasn't was a stroke.
Needless to say, here I am 5 years from that point.  I have seen the Neurosurgeon about 4 times... always the same thing... things look about the same, except once, he sent me to the University of Tampa, to see a Neurosurgeon, who said, he could operate on me, he has done it before, but chances are I won't have another problem, and this stuff usually happens in clusters.  I managed to get his notes on my visit, which were not clear, had lots of __ and even said that I had carcinoma... No correction was ever made, and the doctors here never persued it... so if anyone thought I would even remotely consider this guy cutting my head open, they were sadly mistaken.  
So to make a not so short story even longer... I am again having issues, and all I get are blank stares from my Doctors.  I haven't made an appointment with the Neurosurgeon, since I will not go to the guy in Tampa again... my neurosurgeon admittedly doesn't want to venture in my Brainstem.  I am going for another MRI tomorrow, my last one was a year ago.  If the radiologist says there is marked changes since last year, the Dr. will send me to a Neuro-Opthamalogist.  I will send my films to Dr. Spetzler.  No matter what the radiologist, the Dr., or the Neuro-Opthamalogist says.  I have decided I have suffered enough, and my husband and I are taking matters into our own hands.
I have had ringing in my ears for over 20 years... they told me it was tinnutis, and offered to fit me with a masker, the headaches are migraines, the dizziness well, it will go away, and the nystagmus, well that nobody says anything about.  I find myself being constantly tired, because I am fighting with my eyes to see.
Sorry this is so long.. but it felt good just to write it all down.  Even if no one reads it... since I am used to telling people, being cut off, and then just getting blank stares.  The next step is a shrink... because I am obviously just a hypochondriac.
In case anyone does read it... thanks for listening...
Heidi,

Welcome. Sorry to hear your problems. But it's pretty much par for the course, at least for a brainstem CA. I've had tinnitus as long as I can remember, and get dizzy pretty often. I fortunately don't get migraines, but do get headaches a lot. Nystagmus is another common problem (though I don't have it, fortunately.)

The brainstem, as you seem to understand, is a very delicate area (neurosurgeons use the word "eloquent" to describe areas where any damage can have serious effects). Surgery there is very risky, and there are chances that recovery will be long. (We've got several people who post here who have had surgery.)

It's hard to give advice, but do take as much time as you can and get Spetzler's opinion. If it's operable, given the problems it's causing you, it could certainly be a solution. (Personally, mine isn't operable, but if it were, I don't know what I'd do...)

You're not a hypochondriac, though a therapist might help you deal with this. At a minimum, try and simplify your life as much as possible. Are you working?

Feel free to ask any questions you have here. There are lots of people who have gone through what you have.

All the best,

Kirk
Hi Kirk, Yes, I am working, although I did have off for 3 months back in 2005, and it helped alot.  I work for the phone company, specifically big accounts, for example a State Government.  It in itself is not difficult for the most part, but when I get into the many systems, and now many new systems, I find it to be very confusing, and not a whole lot of wiggle room of understanding...  I feel like I am on a vicious cyle...  
I do remember one of the many radiologists who have read on of my many MRI's, state that you might as well get surgery, since you will just have re-curring issues.
I am not anxious for surgery.. believe me... but it gets difficult dealing with these issues while working, and caring for my 86 year old mother, and my husband who suffered a stroke 3 years ago.
One of my biggest fears is not enjoying my life, and having struggled with these issues, while juggling my roles as care taker, housewife, phone company employee, etc.  I am not a complainer, and have always been able to do it all... and that is probably why I am having trouble accepting this...
Thanks for listening...really, I was pleasantly surprised to see someone replied.  I will keep you posted.
Yes, it's tough. But I wouldn't assume that you will necessarily have "recurring issues." Many people here have had one or two bleeds and no more. (But in my case, I've had a number of smallish bleeds since my big one in 2005.) No one simply knows why they happen. So the need to weigh the risks of surgery, and recovery, are necessary.

This said, if I had the problems you had, I'd lean in that direction... But I don't have that option. You need first, of course, to make sure that yours is indeed operable; if it's not accessible without cutting the brainstem tissue, then it's not operable (though Spetzler has been known to do some pretty impressive stuff).
I just wanted you to know I read your story and I am so sorry.  This website is filled with people who really do care-people who not only believe you but know from personal experience what you're going through.  It seems like having a Dr. who knows what's going on with cavernomas is the exception, not the rule.  The people here have helped me with questions, advice and a shoulder to cry on.  People here are definitely listening when you need to talk.  Lots of love and prayers!
Thanks Otownmoma...:)  I realized that when I visited a few times... and I am finding that out...
You know my Dad had his first stroke in 1998, and he used to tell me that most of the Dr's out there don't know anything when it comes to the brain, and are only experimenting.  That was 12 years ago, he is gone now, and my husband had a stroke 3 years ago, and my experiences tell me that nothing has really changed.  It is a shame... !  At least we have each other!!!  Thanks again!
It's true that there's a lot of guesswork in neurology. My neurologist is honest when he tells me what he doesn't know. I don't know if enough doctors are that honest; I suspect that they're not.

Did your father ever have a brain MRI? Did he have CAs? Since you have multiples, that's a sign of a strong possibility of a genetic predisposition.
To be honest Kirk, when I asked, because I had just been diagnosed, they just laughed (that was his Doctor in NY).  My Dad had many MRI's and CT's.  The first stroke was a hemorrhagic stroke.  The second was a blockage, but not from a clot, it was because the blood pressure medicine he was on was too stong, or so that is what they told us, and the vessel in his brain collapsed.. and the third was a major bleed and he passed 18 months later.  I asked a doctor of mine (the neurosurgeon in Tampa) and he also laughed and said, I am sure it wasn't, it is probably just a bad bleed from high blood pressure...  Anyway, my experience with doctors has been that I have been amusing to them at least....  But I still have hope that someone will listen...Oh and my Mom, she has Parkinsons, and my niece, she has epilepsy.  But... no one has what I have... so I am told.  It really is pretty amazing...
Wow, Heidi, you've certainly had tough times. I really hope you can find a doctor who will help you. You should make a post here asking if anyone can recommend a doctor near where you live.

I've been very lucky. While I saw a first neurologist who was clueless, right after my initial MRI (far from where I live), the one who follows me now, even though I'm one of only two patients he has with CAs, is very good, and knows a lot about CAs. And he's also very happy with me knowing what I know - some doctors feel threatened by patients with knowledge.
I contacted Dr. Spetzler this week, and heard back from his secretary yesterday... they were very nice, and their responsiveness was better than I have ever experienced from any Doctor.  Needless to say I was very impressed.  So... my CD is going, probably tomorrow... !!!
Quote (Heidi Ripke-Curcio @ June 24 2010,08:42)
I contacted Dr. Spetzler this week, and heard back from his secretary yesterday... they were very nice, and their responsiveness was better than I have ever experienced from any Doctor.  Needless to say I was very impressed.  So... my CD is going, probably tomorrow... !!!

Hi Heidi,

Welcome to the forum. I have learned a lot from this forum since my first bleed in January. Neurologists are indeed just learning themselves, and as Kirk said some are intimidated by your own knowledge. Don't let that scare you and keep learning. Knowledge is the best medicine.

I had mailed my films on May 31st and a week later on June 8th, they already called me that Dr. Spetzler had reviewed the films. Amazing service and a really caring staff. I highly recommend that you send in your films and get some proper answers for your challenges.

Again welcome and our prayers are with you.

Henk :cool:
Hi Heidi,

I think we can pretty much all share in your frustration. I was first diagnosised in 08/09 and have been frustrated most of the time by the many, many "good" doctors that I have seen along the way. I live in Los Angeles and supposedly have seen very good doctors. Too bad they all tell me something different and are all very dismissive about my ccm causing my problems (dizziness, eye problems, etc.) I too felt I wasn't getting answers and have done a ton of my own research. I sent my films to Spetzler and he recommended surgery. I couldn't believe it (although deep down I suspected he might recommend surgery even though the 3 prior surgeons I saw said they wouldn't touch me)! I have been working through this whole surgery/no surgery decision ever since Spetzler gave his recommendation in March or April. I actually went and saw him...just to get a feel...and he was so great...so nice, patient...and he actually answered all my questions (a first since I've been diagnosed). I am nearly 100% certain I'm going to have the surgery and am just trying to get everything ready for a smooth recovery. I still need to find a good neurologist too. Really hard so far and very frustrating!! My theory is that I'll see as many doctors as it takes...eventually I'm gonna find one that works for me. I feel like it was sort of bad luck that we got stuck with these things in our heads but we don't have to see these crappy doctors. I'm gonna do everything I can to see the best people and live the best that I can despite what I've been delt. I'm sort of a control freak and while I can't control this thing in my head...I can control what I do about it and who I see to help me be my best...what ever that looks like :)

Good luck and don't give up trying to find the best care you can...I do think it's out there somewhere!
Thank you for all your replys and sharing your experiences...  No one can understand what we go through when we need to see someone, except one of us.  My latest fiasco was today... just to share... I had an MRI on Tuesday, report (apparently) was never sent to my referring physician, I picked up my films and a CD to send to Dr. Spetzler, and they left out the report.  Had to go back for the report, yesterday, which said the CM increased in size since 2006 from 6 MM to 1.5 CM.  That was the one in the PONS area... the other two had a blossoming affect of hemisderin (sp).  I called the referring physician, and today, Friday, they said they didn't have the report yet.  I called the MRI facility, they said they sent it, but they will send it again.  I then called my Neurosurgeon, or the doctor who has been following me since 2005.  The Neurosurgeons office (woman not sure who) called me back and asked who referred me for the MRI, when I told her my GP, she said, sorry, we will not look at the MRI, the report, or make an appointment for you, unless the GP's office calls and asks for us to see you... I call the GP office, they confirmed the the report arrived today, but the doctor was seeing patients and wouldn't review them till she is done.  Just one put off after another... Personally I find this absolutely unbelievable.  Then about 30 minutes later I get a call from the GP's office who tells me there has only been a very small increase in size, and I need to call my Neurosurgeon.  At which point I grill the nurse on the report, and correct each of her answers.  Then I said, I picked the report, I know what it said so I tell her that she has to call the Neurosurgeon, and she acts surprised.  She calls me back to tell me the Neurosurgeon's office went home for the weekend... (it is 2:00 PM) but she left a message and faxed the report...  I guarantee that I will probably hear from Dr. Spetzler before I get an appointment with this guy.  Which is fine, because this local Neurosurgeon has told me in the past he doesn't know what to do for me, because he doesn't want to operate on the brainstem.  It is just a battle at every step, along with working a full time job, driving 45 minutes one way (12 miles away), caregiver, and housewife...Someone please tell me that this will make me stronger in the long run, because I am feeling awfully beat down...
ok, just filling you in... I sent my report and films to Dr. Spetzler who is on vacation presently, and should be back later this month.  I also heard from the local Neurosurgeons office and they suggested I be seen by the PA.  I agreed, and actually was very pleasantly surprised.  He was kind, understanding, and extremely patient.  He didn't have any, recommendations, other than repeat a suggestion of Gama Knife Surgery... I told him I wasn't to anxious about that.  I did tell him that I contacted Dr. Spetzler, and sent him my latest MRI.   I came back early from a vacation, so that I could get in to see the PA so I wouldn't have to take time off from work for the appointment. So now I will  wait to see what the Dr. says, after the PA reviews everything with him.  Also expecting to hear back from AZ in about 2-3 weeks.
Hi, wow you have had a tough time. I did too. I had a major bleed in 08  and have had 3 small bleeds. I have been unable to go back to work in my profession because the least bit of stress gives me slurred speech, facial numbness and balance issues. I too saw numerous neurologists. Whenever I see my current one I feel like a guinea pig and feel that he learns more from me than I learn from him. I saw 3 neurosurgeons all whom declined to operate due to the location in the pons. I have sent my info to Dr. Spetzler and if the time is right he will do the surgery. (he is the 4th nurosurgeon). The point of all this is you are not alone and this forum is a great place to find folks who can understand your frustrations.  :)
Thanks Becky... the latest is my Neurosurgeon in Orlando would like to do GKS (Gamma Knife Surgery), which I told him I was not in favor of... he is bringing my films and report to the Tumor Board at Florida Hospital, to present to see what they suggest... It is just that I have not heard from one person that has found improvement after GKS... and if I can wait for that to work, I might as well wait for more opinions.

Now my problem will be work... I think they will give me a hard time...

It never ends... I know we are all the same...  Found lots of support here!
I know what you mean about work.

Every specialist thinks I can just return back to normal, and go back to work. But if I see how I am with tiredness, mental/cognitive fatigue, some lightheadedness, headaches and still some double vision and lots of numbness in different areas, I don't know how I would have to deal with work. My daily commute is 50 minutes one way, and doing that would wear me out. How would I work after that if I am already tired?

And what is back to normal anyway? Is there a normal after being diagnosed? I don't think so. I see being diagnosed with multiple ccm's in this way:  "I am living with a tire that has many bulges on it; bulges that can pop any minute". Would you drive your car at 80km/hr if you knew your tires had many bulges on them? I doubt it. A life style adjustment is needed and this may have to be without work or just part time work. I am still recovering from my first bleed, and after 6 months I have found that most symptoms are still the same.

Henk  :cool:
Ok, I feel kind of different about working- but you have to do what is right for you.  I have had trouble all my life.  It was a very unusual day if I didn't have a bad headache.  After the winter of my discontent (bleed and operation in cerebellum) I went back to work in about 6 months.  Back to teaching special ed.  I could not use my right leg, I have always had vision problems, and the fatigue.  But you see, I always knew that I would have a better life if I was busy.  Doing something so I didn't just think about how bad my head hurt.  I had my own children go to a babysitter after school so I could take a nap and my husband would pick them up on his way home.  Then I would be in good shape for making dinner and spending quality time with my kids.    I taught for 12 more years before I had my big thalamus bleed.  Then I couldn't teach.  Can't multitask, no short term memory, little attention span,  real high anxiety, trouble putting all the pieces together, spontaneous crying.  None of that is good for special ed kids!  I was a good teacher.  That absolutely isn't possible anymore.  But if I had the attention span for it, I would even be a greeter at walmart.  I miss working so much (and it has been 11 years)  I am as disabled at home as I am at work.  I have no choice now, but the 7 years they offered me disability before the thalamus bleed, I wouldn't  take it.  I just knew it wasn't right for me.
       Bleeds very very rarely kill you.    I wouldn't drive 80,  but I would surely drive if I could. (wink)
Quote (vandy @ July 21 2010,23:50)
I know what you mean about work.

Every specialist thinks I can just return back to normal, and go back to work. But if I see how I am with tiredness, mental/cognitive fatigue, some lightheadedness, headaches and still some double vision and lots of numbness in different areas, I don't know how I would have to deal with work. My daily commute is 50 minutes one way, and doing that would wear me out. How would I work after that if I am already tired?

And what is back to normal anyway? Is there a normal after being diagnosed? I don't think so. I see being diagnosed with multiple ccm's in this way:  "I am living with a tire that has many bulges on it; bulges that can pop any minute". Would you drive your car at 80km/hr if you knew your tires had many bulges on them? I doubt it. A life style adjustment is needed and this may have to be without work or just part time work. I am still recovering from my first bleed, and after 6 months I have found that most symptoms are still they same.

Henk  :cool:

I wouldn't worry so much about the bulges on the tire popping - after all, if you do, you'll never use that tire - but as for normal, it's a new normal, and one that takes a while to get used to.

In my case, with a pretty big brainstem bleed, it was roughly 18 months before the symptoms really started to subside. The first two months I slept a lot, but I had dizziness, extreme numbness, and discomfort for a year and a half. The numbness has since faded away (I'm a week shy of the five-year mark right now), but the dizziness is pretty much permanent if I walk too much, or if I have a very busy work day.

I was put on partial disability after six months. This was a Good Thing, because I don't have to force myself to work as hard as I did in the past, and it means I have fewer days where I really feel tired. But tiredness in general is my lot in life now; not that I sleep a lot, just that I don't have much "pep."
Quote (kirkmc @ July 22 2010,02:35)
I wouldn't worry so much about the bulges on the tire popping - after all, if you do, you'll never use that tire - but as for normal, it's a new normal, and one that takes a while to get used to.

I was put on partial disability after six months. This was a Good Thing, because I don't have to force myself to work as hard as I did in the past, and it means I have fewer days where I really feel tired. But tiredness in general is my lot in life now; not that I sleep a lot, just that I don't have much "pep."

Kirk,

You can't tell me that you did not worry about a new bleed after the major one you had. You have mentioned before that you have figured out that you had bleeds before and you were not diagnosed at that time. In those days you must have thought:"What did I just have?" You always have questions when you get sick, especially if they can`t precisely tell you what you have.

Everyone that has these things in their head and had a bleed will think "Boy oh Boy, I hope this doesn't happen to me again" And if you are diagnosed with multiple (big) ones, and one in a very eloquent area, you cannot say: "well lets go back to normal and pretend this didn't happen and I don't have these lesions in my head".

I didn`t say I was not going to use that "tire" anymore, I said: "Ė doubt that you will be driving at 80 km/hr when you know the tire is bulging like that". I am taking it easy and will make the necessary life changes. This will include reducing my stress levels and most definitely a change of jobs. I love teaching but I love my life and quality of life more.

But you are not using your tires at 80 km/hr anymore either..

You even agreed when you mentioned going on partial disability, and I understand you work at home. My work is 60 km away from home.

No I don't think the majority of people that went back to normal had a normal life. I have read that many that tried ended up with new bleeds and more problems. I like to be on the cautious side. But that is just me..

Henk :cool:
I actually didn't worry about new bleeds for quite a while, and I'm not that worried now. I've had several small bleeds since the big one, and my neurologist is pretty much convinced that I'll continue having small bleeds, but that none will be as big as the one I had in 2005. At the time, I had been taking aspirin for a few weeks because of back pain, as well as an arthritis med that has a blood-thinning effect.

I am on partial disability, and that's a very good thing, because I don't have to push myself to the point at which I get tired. And I don't have to drive.

But my point was also that you have to accept a) that you have these deficits, and b) that it's way, way too soon to think about whether they will go away or not. As I said below, mine didn't start going away until 18 months post-bleed. Some stayed until 3 years, and I still have issues with fatigue and dizziness.

I don't know your work situation, but if you're as worried as you are, I'd strongly recommend getting put on long-term illness or temporary disability, if you have those possibilities. That commute of yours is not going to be easy.
Henk,

If you have the choice to slow down and change jobs that is great.  Others don't have that choice.  I went on sheer will power for the first six months to a year after my brainstem bleed.  I had no choice but to continue working as I had to support myself and my elderly mother.  Every day was a bad day, but I got through it.  Work was pretty understanding, but I was still working full time looking at a computer all day.  My deficits have improved some since the bleed and medication helps with some.  I will never be the person that I was before the bleed.

It took me at least two years to accept that things were not goint to get better and accept the new normal.  I have learned what I can do and can't do (limited driving, avoid visually busy environments, etc.)  I have finally been able to change jobs in my company to have less stress and an easier work environment.

As, Libby said, though, I would rather work than not.  I feel better when I am doing something and not dwelling on my problems.  As Kirk said, I do live in a continual state of tiredness.  That is just part of it along with the other deficits.  You can't spend the rest of your life worrying constantly about another bleed.  You avoid the things that you can like blood thinners and rollercoasters.  Life does move on, thouugh, and you have to live as much as you can.

I am in the process of trying to adopt an older child from the state that I live in.  This has been a long and stressful process.  I know that having a child will also be a long and stressful process, but it is something that I want to do.  

I also still do limited dog rescue and have dogs of my own.  These guys keep me busy and keep me moving.  If I hadn't had them, I don't know if I would have kept on as well as I did with walking everyday and staying healthy.

I am not say that you are wrong in making adjustments in your life.  Just try not to let the CA define your life.  It is a part of your life now, yes, but not your entire life.  You have to live the best that you can with what you have been given.  Easier said than done, but what is the alternative really?

JMO,
Kathy
My husband has a brainstem bleed that left him disabled- completely unable to work.  It has been 3 years now.  Some of his defecits have seen improvement, but nothing for him went completely away except numbness that was replaced by neuropathic pain.  I believe that if working was a possiblity for him, he would jump at it.  Being disabled has resulted in a huge focus on his bleed & CA.  It is very hard for a young man to go from active to not and then trying to make your gremlins not define you.  I wish you all the best.  Only you really know what you are feeling and going through.  I wish you good health.
Thank you to all that posted.

This forum has given me a lot of knowledge and insight into how others are dealing with their struggles. I don't try to judge or criticize anyone.

I have observed that everyones journey is different and that the majority of members have it a lot worse than I do.

I am in the very lucky situation that my neurologist was on the ball from the beginning, that I received the best medical attention there is, and that I am in the fortunate situation to be home on disability for now.

As indicated before I am taking it easy and work on my recovery, and yes that has been frustrated to say the least. I have had worries and am dealing with this new reality. I have 4 children between the ages of 3 and 10 years old. What is their fate? Do I have the genetic version? Having multiples, most likely. So what are the chances that they have what I have - 50%. You cannot tell me not to worry. It comes with the illness.

Of course I would like things to go back to normal. Teaching was my passion, and I loved my job (still do), but knowing what I did for a living and the energy I poured into that, I know now that it is impossible to return to that same level. I will have to continue my recovery and carefully analyze what I am still able to do with pleasure, and without putting myself at risk for further bleeds or re-bleeds. My kids at home, my wife still need me....a lot. I want to ensure that I am there for them when they need me, and that is each and every day.

Kathy wrote: "I am not say that you are wrong in making adjustments in your life.  Just try not to let the CA define your life".

Now tell me honestly how any illness that has life changing effects, like ccm's do, can not define your life?

If your health is adversely affected by an illness you want to work on getting better, it's the logical thing to do. Then if you have discovered your weakness, you try to make sure you avoid doing anything that could lead to new health issues. To use another analogy: "If you know a bridge is crumbling and weak, would you still walk on it? or even jump on it?

I am very involved in my faith and my church. I will continue that path and ask God for his guidance and ask Him what direction I should take now. I now He will show me the light as He has done before. There are reasons why we are lead from the path we are on, I know a new path is awaiting me.....

My prayers and best of health wishes are with you all.

Henk




:cool:
Quote (vandy @ July 22 2010,16:17)
Now tell me honestly how any illness that has life changing effects, like ccm's do, can not define your life?

Everyone's experience is different. Vern's wife posted about her husband who's on full disability, and, in a case like that, with serious deficits, it's hard not to allow the illness to define his life. In my case, it did define my life for several months, maybe ever a year or so. But it's slowly gotten better, and there are many other things in my life that are important. It's not like I'm going to forget about it - in part because I do work with Angioma Alliance, so am very often thinking about the illness (in general; not so much my case) - but one can get used to a lot of things.

BTW, regarding your children, if you're anxious about them, get the genetic testing done; first for yourself, then, if it's positive, for your kids. I have two CAs, and here in France they're hesitant about doing genetic testing for such a case, so my son (he's 19) had an MRI just to make sure. It turns out that my largest CA is attached to a DVA, and doctors have found that they often lead to multiples but in a limited area around the DVA, which seems to be my case.

How many do you have? (I'm sure you've said in another thread, but I'm too lazy to go look... And it's the big stage of the Tour de France today :-) )
I am working on the genetic testing right now. I have signed up with the Angioma Alliance DNA/Tissue bank.
I received the blood kit this week and will be sending that out next week.

They have found many but won't say exactly how many. You might remember that I was wanting a list of all the major ones and what possible effects they could cause. I have counted myself at least 13 bigger ones with the one in the pons and the one in the temporal lobe being the major concern. They are at least 2 cm in size. Dr. Spetzler has identified them as well as possible candidates for resection, but only with new bleeding and/or when the symptoms become too much to deal with.

Enjoy the Tour...

Henk  :cool:
Hi Everyone... sorry to pipe up at the last minute... this is my 2 cents on the whole thing... I am married to a man that was active, working and had a wonderful, patient, kind demeanor, and still does... I see it anyway... but a stroke affecting the PONS area 3 years ago changed him... He appears to be the same person, but inside I know between the stroke, his job and his recovery he is different.  
The medical field today tries to make everyone into a cookie, from the standard cookie cutter.  They are encouraged to do this by corporate america.  6 months after his stroke, which by the way almost killed him at the age of 47, he boss sent him a threatening letter about getting back to work.  Amazingly the same letter she sent to another employee 1 year earlier, she just changed the dates and name...(now that is a competent employee in a position of authority...)  He has since taken early retirement, and is getting a reduced pension, but not enough to support our family.  
My point being... each job is different, and each person is different.  I know that at my job the expectation is that I go back at 100% productivity.  And, I have to prove that...coming from a corporate structure that says I make 25% more than I am worth...
So here I am walking around with one eye closed 50% of the time, limiting my depth perception, the other 50 % of the time seeing double, cutting corners short when walking, being laughed at by my co-workers since I am acting drunk, and then let's talk about the fatigue...  
I am lucky enough to have STD so my salary is ok right now... but you can bet your bottom dollar they will expect me to go back to work next month... and the problems will be the same, and I know from experience... if I don't allow them to get better, they never will....  But that isn't the concern of my employer, because they are not going home with me... and when they have had enough they will lay me off.... and then what happens.  
The bottom line is if you have a job, or a boss that is understanding, you are two steps ahead of the game... but in todays economy, and the way of medicine and the world, we each have to take care of ourselves the best way possible, and we might as well support each other along the way....  I only wish that I could drive, and I was able to do my job...but I am not, and I don't know what else I can do...right now...  So I will keep an open mind, try to be productive where ever I end up, and mostly hope that I get better...with out having surgery...
Thanks to everyone for you comments... they truly are a help to me...
Quote (vandy @ July 21 2010,16:50)
And what is back to normal anyway? Is there a normal after being diagnosed? I don't think so. I see being diagnosed with multiple ccm's in this way:  "I am living with a tire that has many bulges on it; bulges that can pop any minute". Would you drive your car at 80km/hr if you knew your tires had many bulges on them? I doubt it. A life style adjustment is needed and this may have to be without work or just part time work. I am still recovering from my first bleed, and after 6 months I have found that most symptoms are still the same.

Hi Henk,
For me it's only been two years since being diagnosed as opposed to many others here who have lived with CA's for years. But you were only diagnosed in January with multiples so I understand how the feelings are still so raw for you. I only had to deal with one CA, but regardless, I have gone through my own set own emotions, mainly fear of the unknown, worry, depression, adjusting to medications, etc. People would tell me that I just had to learn to live with it. But I asked, "how"?? Like there was some magic answer I was missing! It was easy for them to say that. But I knew they were right or the rest of my life would be lost....That was what I had to figure out. Knowledge was key. At first everything about CA's terrified me but I forced myself to learn as much as I could because I knew fear of the unknown would be worse. Just as you are doing and I commend you for that. As you know that it doesn't just happen and it does take time. But learning to live with this unbelievable diagnoses you were just given, is a major process. I still don't know how anyone can let go of the fear of another bleed. Especially if they were traumitized by a previous one, like I was. The last time I saw doctor Spetzler I asked him if he got it all out, he said to me, "yes, but it is possible that it can come back  (the Ca)... So I still consider my self living with this for the rest of my life.
This diagnoses has turned your life upside down and your trying to make sense of it and fix it as best as you can, not only for yourself but for your 4 children. I to am a teacher and I don't know if or when I will be able to work again. I too worry about my kids future-that's the scariest part. So, if you want to akin this to "living with a tire that has many bulges on it; bulges that can pop any minute", then do so. We all have to find our own path through this journey, no one else can tell us how to do it, it's up to us. Best of luck.
I never meanty to imply that any of this is easy.  It is a very emotional and life changing ride.  But at some point, everyone has to accept their diagnosis, deficits, etc. and try to get on with life as the new normal.  

Working is not easy after a CA bleed, but necessary for a lot of us.  I understand completely if you are too bad off to work.  My co-workers make fun of me all of the time due to not being able to see straight, walking in to things when I am dizzy, generally having no balance.  I am lucky in that my company knows what is wrong with me.  I am sure to speak up when I can't do certain things.  I can't travel and I can't work long hours.  I remind folks that I have had a brain injury and am not all fixed just because I look normal.  It is the best that I can do.  

It is different for everyone.  It is life changing.  It's just my opinion that you have to live your new life the best that you can.  Be your best advocate.

Best of luck to all,
Kathy

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