Living With Multiple Cavernous Malformations (Patti's Journey)

[philipdx]

Thanks for sharing your story. I also have multiple CM's in my brain and brain stem (7) which I found out about after having a scan due to ringing in my ears. I have had no other symptoms or problems. But it is very worrying as you just don't know if anything will happen. Just have to live in hope.. Good luck with everything.

[acline1000]

Thanks for sharing your story!  I had a CM removed 21 days ago. What an experience! I went from no medical problems to having brain surgery in a matter of days. I feel very fortunate that the surgery was easy, the recovery has gone well, & there doesn't seem to any long term side effects (yet). I have had great support to get through this & pray that I don't have to go through it again. I wish the best of luck to you and hope that your journey of dealing with this odd disease ends soon!

[jtdds]

I'm a survivor of 3 craniotomies for Cavernous Malformations. One was in 1978 and the other two were in 1982. I had several varieties of seizures, mostly nonrefractive to anticonvulsants. Rather than let it beat me, I set my goal to become a dentist. I dropped out of school twice because of complications but kept going back. I just found out that I have a new lesion on my occipital lobe which is causing seizures and may result in partial blindness. I may have to give up the career I've loved.

[HCsonicfan8888]

bands name?

cavernous?

[kidzombie]

i had my surgery for cavernous malformation in san fransisco too. when i was 13 might have to go back in january due to similar symptoms.

[MrsPattiG1]

@kidzombie,

So sorry you're having to go back, but I hope you'll hear good news then!

MrsPattiG1

[tacoinblanket]

hope it all goes well with every one

thanks for the storys

[Rdoran63]

We have been dealing with CVM's with our daughter for five years. It all started with a seizure when she was six. She ended up having a larger bleed in the pons of her brain stem. She had brain stem surgery on 8/15/2010 and spent 8 weeks in a rehab hospital for children. She had to learn how to walk, talk, eat, and still has many stroke like problems. We just had a MRI that showed another CVM in the frontal lobe that needs to come out. We pray for a cure.

[TheDeistGuy]

Hope your life is still awesome.

[Bobbigirl100]

IHello, I am 34 years old and also had a resection of a CVM in Sept. 09, unfortunately I had a stroke and am still recovering. I am noe seizure free but I have since had to re-learn how to walk..etc.. I am happy to be alive but I will now have to live with this traumatic Brain Injury caused by the stroke.

[Lavenderinscence]

I have terrible headaches and it has sent me into a spiraling depression. My daughter was born 4/20/10 and she has great big ones all over her body. I honestly want to blow my head off over this STUPID STUPID DISEASE!@W@W@

[Lavenderinscence]

I have multiple hemangiomas as well. I have had 4 bleeds in the past 4 years. all due to pregnancy (or so i was told). The one that gives me trouble is located on the anterior part of my brainstem. None of mine are surgical candidates (or so i've been told). The bleed that i'm going through right now is just terrible. it is the worst so far. I have double vision, terrible ringing in my ears, and complete body numbness (i can move everything but all of my skin is numb) my balance is terrible

[mikenfla100]

Excellent video and story. Thanks for sharing it with the world and thanks for your friendship.

[tabber05]

Hope all is well.

Thanks for sharing