Hello everyone...
My friend found this group for me after she read on my blog of how lonely i felt... I have a deep brainstem bleeding cavernoma, and a abnormal vein in the same area that could be a AVM but not yet confirmed. Not sure how possible or rare it is to have both.... anyhow,
I am 34 years old. I have 4 wonderful children and a loving husband of 12 years. I am french canadian but now lives in Cincinnati Ohio.
I had to quit working since my diagnostic. My Neurologist couldnt believe I was still working (my job was physical) after we found out how bad my condition was. We initial thought I had MS.
I have had 2 bleeds so far and was told last week that I am a ticking time bomb and can "drop dead" at any time. After being told by 2 different Neurosurgeons that this was totally inoperable, I realized how important it was to find a neurosurgeon that specialize in this specific area. I have since gotten a third opinion from one of the best Doctor in the country , who immediately told me i can have surgery anytime, its up to me to schedule it with him. I was also told that the risk of surgery and the risk of doing nothing is the same, i just have to pick which one.
Needless to say I am somewhat confused but mostly not sure what is best.
I am hoping to find similar stories. I have not found anybody that has the same condition in the same location yet.
Hi again, dandelionwishes!
Wow, both a cavernoma & possibly an AVM?!
I believe there's several brainstem CM'ers @ our sub-group.
I do have a brainstem CM, but fortunately it's 'quiet.'
My deepest surgery was in the thalamus (on top of brainstem).
It sounds like you've done your 'homework.' Yay! :)
Some CM (cavernoma) pts. opt for surgery, while others 'wait & see.'
Only you know what's right for you & I wish you all the very best in your journey!
Thank you Patti! I do find it very unlikely that i could possibly have both. Sounds impossible right? I have been having conflicting opinions from different doctors! oH, yes about homeworks! i have been amazed of how little "regular" neuro surgeons know about this!! i f it was not from my 2 best friends , one being a nurse and the other a surgery technicien, i would of never digged deeper. We all trust what a neurosurgeon will say to us. 10 neuro surgeons that do not specialise in this will all say that surgery is not an option! I am waiting on a second and third opinion to make my final choice .
I'm with Patti dandelionwishes, that is awesome that you have and continue to do your homework about AVMs. It is amazing to me as well that Most neurosurgeons don't know anything about AVMs in the brain. It is often the case with extremity AVM Docs as well that if they don't know what an AVM is they say nothing can be done on it. As you have already seen, you must be your own best advocate. Nice to see that you have some great friends and a beautiful family that you can count on. Hugs!!.
Bonjour Dandelion...i am actually an english quebecer living in the boston area.
I have a cavernoma in the brainstem (inoperable) that has bled 3 times...
the last one was this past may/june-
i also have kids and an intense job as a research professor-
i also had another area in the cerebellum that was removed 7 years ago=
that area bled and grew over a period of a few months and they thought it was
a tumor but it was not...if you want to connect more, let me know
take care- Heidi
Oh My!!! This is quite a diagnosis Dandelionwishes!!! Yet it sounds like you are doing all that is needed by seeking out multiple opinions from various neurosurgeons - you go girl :)!!
While I can't offer anything on the cavernoma diagnosis, the one thing that that I have learned is that AVMs are like snowflakes; meaning there are no two that are alike. I do remember many conversations with my medical team of all of the dreadful risks they have to explain to you associated with the different surgical procedures/treatments for treating my AVM and felt just as you do now - very confused as to how to proceed. What I did know is that I needed to proceed with something and "doing nothing" just wasn't an option for me -- I wanted this beast out of my brain and went with the risky treatments vs. having to walk around feeling like that ticking time bomb.
Hang in there and know that answers are coming that will help you make the final decision on what's best for you!
Michele
Wish you good luck Dandelion....keep trying to reach out to as many people & some where some miraculous solution will come up....keep faith :) & you must be blessed to have a loving & caring family :)
- Santhosh
so you had surgery? how did it all go and what was the outcome? was it in your brainstem?
Thank you Heidi!
How far in between did your brainstem bleed? I am glad your first surgery went well! what is yoru surgeon tellign you about your current brainstem cavernoma?
Hello and Welcome to the group. I am glad you are doing your research and you are right reg neuros are not qualified to diagnose us. I also have learned that we can have more than one rare thing and you know your body and you have to find the right doctor/hospital. I went to Dr. Marks at Stanford who is the founder and head of neuro radiology at Stanford. I had a DAVF but I know others on here have seen him for their AVM's. You have lots of life to live. This group is fantastic with sharing experiences and support
Angela
Thank you Debra! I do have amazing friends. 3 of them, who dont even know one another, made sure to get me in touch with the best neurology centers in the country Mayo, Barrow and Hopkins. I heard from Barrow and Hopkins so far(my friends mailed my scans) but i am travelling to mayo next month.
Sorry i was so short at first, kids needed things. haha My husband feels the way you do about proceeding. I am such a yo yo when it comes to make a decision. one minute i want to have the surgery and risk it all now, the next minute i want to wait for the bomb to explode on its own... because what if it only happens in 1-3-5 years from now? every day is a blessing ... i want to see my children! I am just really torned and just simply DONT know what to do. There are no better solution in my case and im just waiting for a side to look slightly better than the other. How can i make a decision based on 2 bad outcomes? I was told i will not come out of this surgery as myself, and will most likely be paralyzed on the entire left side. So... do i want that now (thats the best case scenario) or do i want to drop dead who knows when. Then i also tell myself that Surgeons are not gods and i could do well. Then i tell myself that i rather died and wake up blind, but that's selfish. I am such a happy positive person, but a mess right now :)
Thank you Santhosh,
I do have a family that loves me :) I still remain the one that takes care of everyone in all this, because that is what i am. It is a scary time for my entire family.
Thank you Angela.
I am glad my friend found that blog for me. It is helpful to read all the differnet stories :) maybe it will help me make a decision. I have heard from 2 qualified surgeons and will travel to see a third one, one of the best, in march. I just need some clarity and more direction!
Maybe the surgeon can connect you with others that have/had similar issues as you. I know it does help to talk to people doctors dont always tell us stuff and of course they can not know exactly. I gave my husband my login to the site so if after my angio and embolism he needed support as well. You will get your clarity all you can do is take it one day at a time and here is a safe place to share your story, fears and hope. Make sure to get enough rest and know your limits. I think we get used to pushing through our tough days but our brains and bodies are trying to tell us to slow down.
Angela
You are so right Angela,
somehow, my cavernoma is so sensitive that if i elevate my heart rate even so slighly as to clean my house, i get instant weakness on my left side and feel like im going to faint. I also experience cardiac arrythmia and shortness of breath. It is all related to the blood flow. I was such a active person.... and my job was physical as well. I could also function on 5 hours of sleep (not that i liked it, but it didnt affect me once i had my cup of coffee :) Now, i have to sleep at least the 8 hours. If i have 2 bad night sleep in a row, i get physically ill and have severe vertigo. I dont know why my body is so sensitive because its not supposed to be bleeidng right now. I did ask Dr.Spetzler how many people he saw that has a case like mine, and even tho he made over 6000 brain surgeries and removes cavernomas all the time, he only saw and did 5 like mine.... I am truly living one day at a time right now, but as soon as i do too much (and beleive me, its not "much") all my symptoms are so much worse. I have always been a "tough it up, dont complain and do what you ahve to do" person when it comes to myself. I cant so much do that anymore.
Is your cavernoma on your right side? Did you have an MRA/MRI?
I was like you and only needed 4-5 hours of sleep. Then I had a massive stroke a rare one and almost died. Then a few months I started to feel worse but the doctors just gave me more meds. Then I started to pass out and a few more months they found the DAVF which had retro grade blood flow which they said was rare. You get used to being rare is normal for us...I know its very hard being okay one day and then you are not. And being so young it is easy to get depressed. I think for me I needed to mourn the old me. The good news is I am doing so much better and back to work full time but I know I cant push it and I listen to my body. I also have a pain neuro who is great and told me to eat protein with each meal and to eat each meal even though I am not hungry. With your doctor at least he has done some and hopefully the other doctor you are seeing in March has done more of them It might be worth a call to Dr Marks to see if they have done any. You can ask for his nurse Mary who is a sweat heart.
Oh no need for any Sorries Dandelionwishes!!! You sound a lot like me when it comes to making major decisions :)! Yet, our AVM experiences are so different in that I didn't have any time to think this one thru as the bomb exploded on its own before I even knew I had an AVM. It was 2 years ago tonight (2/10) when my AVM torpedoed into my life, without any warning. I was med-flighted from a local hospital in NH to Boston and the surgical procedure I initially had was an "embolization" to stop the bleeding which saved my life!!! They kept me heavily sedated and on some powerful meds to monitor the brain damage/swelling from the hemorrhage. About a week later is when my family and I first heard the word AVM and we had no idea what that even was!!! To make a long story very short, my AVM was in the right, temporal lobe area of my brain and was scheduled for open brain surgery on 2/24 as they had to wait for some of the blood to be reabsorbed before the surgery. I was petrified for this surgery given all of the risks associated with this, but was going to do whatever I needed to so that this beast would be destroyed. As part of pre-op the day before surgery, I had an angiogram which showed that the embolization reduced the AVM by 85+% and that it posed more severe, additional risks given that the residual AVM was so small. I then proceeded with the CyberKnife treatment which is stereotactic radiation which also came with some dreadful side effects that the doctors have to explain to us. There were a lot of pre-tests in planning for this treatment which I had done in June, 2011 and have not yet experienced one of the dreadful side effects I needed to know about :)! I am so grateful for my medical team and am now able to enjoy my life even moreso then I was doing before this AVM reared its ugly head :)!!
I will tell you that you will not come out of this surgery "yourself" and you will have a "new normal" in your life which is an even more stronger, happy and positive woman!!! Feeling like you're a mess right now is so normal and I know that this happy/positive side of YOU will never change IN you will only get better thru this trial that was placed on your journey thru life. Keep weighing all of the pros and cons and one day you will wake up and the answer will come to you and you will know the decision that is BEST for YOU!!!
Till then, enjoy your beautiful children to the fullest, stay strong and know that it's "ok" to feel like your a mess but promise me that "you will always be kind to yourself" thru this.
God Bless You!
Michele
Now it's my turn to say sorry to you Dandelionwishes...I should have also told you that my open brain surgery was cancelled given all of the additional risks and that is when I started to prep for the CyberKnife radiation treatment :)!
Thank you so much for your encouraging words Michele, as well as all the information. you really made my day :) I know I am a strong person, but it is just so scary :( There are so many things that changed in my life because of this and the thought of having not only more, but harder changes, just for me to have a better chance at living, just scares me to death. I have always been this happy strong positive person and I am terrorized that i wont be able to deal with the bads if I wake up so different. I am afraid I wont be this happy strong person anymore!
I am so glad your embolization worked. Are you being followed closely now? did it bleed again after that?