Comments for My Daily Walk with CCM

Comment on More understanding into my life with CCM by melessia

melessia — Wed, 04 Apr 2012 22:20:15 +0000

Hey, Tina,

I did try to reply to your post as soon as I got it. I did it on WordPress iphone app, and totally lost it when I tried to send it to you. I will have to learn a little more about WordPress i-Phone app before I try to use it again. I hope I can use it because it was so confenient to write on the go.
Thanks so much for the info on your neurologists. I will make an appointment as soon as possible.

So, how are you and the family doing? I can’t wait to see you all again!
It was not Dave that I talked to in CA. Is he the Dave that started the Facebook page for Stemmies? It is a FB page for people who have Brainstem CCM’s only.

Again, I am so excited about having a Doctor who actually knows about this disease.

I am planning to have a fundraiser this summer for Awareness of this disease. Maybe we could have the Doctors come and speak from a professional point of view on CCM’s. I would also love to have family members present to help people understand how the specific hereditary type of this disease works.

I will let you know more about the fundraiser later.

Much love to you,

Melessia

Comment on More understanding into my life with CCM by Tina

Tina — Sat, 31 Mar 2012 03:30:04 +0000

Melessia,
Dr Frank Cullicchia is a neurovascular surgeon at West Jefferson Medical Center in Marrerro (Cullicchia Neurological Center). He knows alot about CCM’s. He did both of my brain surgeries….the first one being in my spinal cord at c1 c2 and the second on on the left parietal lobe. He did my sister Susan’s brain surgery (you met her at the dinner with Connie Lee. He also did out cousin Nicole’s surgery. (Aunt Joanne’s youngest daughter).
Also, I see Dr. Rex Houser in LaCombe. He is a neurologist I’ve seen for years now. I love both these doctors now! I remember that when I first came to Dr. Houser for the “seizure disorder” I told him…”I am just coming to you for maintenance”…I guess I turned out to be a little more then that. LOL!!
Hope this helps…Love from your CCM 2-10 deletion cousin!
Bettina
PS Who did you speak to in California…it wasn’t Dava was it?

Comment on 4:05 am and I feel like posting! by melessia

melessia — Thu, 29 Mar 2012 04:45:24 +0000

Heidi, I can identify with so much you are describing. I am glad your ccm has been removed, but I don’t think everyone knows how you can suffer even after a CCM is removed. I have been on several antiseizure drugs, but not Keppra.
Still my seizures are not controlled. I have been ordered not to drive and I feel so dependant on others to get me where I need to be. It is a good thing that I am not a natural road runner or I really would feel isolated.
I am always thinking of ways to get the word out about this disease.
I have come up with a design to print on just about anything that will bring awareness of this disease. It still amazes me that we are basically being ignored by just about anyone we share our daily life with. There mentality is, if they can’t see it, is must not be that big of a deal. My own Mother recently apologized for not being there for me after I had my surgery.
Heidi, I just don’t have any answers to the many questions most of us have, when our own neurologist don’t have any answers. Mine has never even taken the time to learn about this disease after four years of seeing him. It make me and I imagine all of us with CCM very frustrated. I have even tried to find any neurologist with in driving range who knows and understands how debilating our symtons are. My seizures are becoming worse and more often than ever. I had one this week that left me unable to open my left eye for hours. It really scared me! My doctor got a new eeg done which showed that my brain is slowing down. What the heck does that mean? He did not take the time to explain it to me.
He just ups my antiseizure med. I hope that everything went well at your own Dr. appointment and I’m sorry that I did not read your post sooner. I have just been so busy trying to get my temporary disability from my job until maybe I can find another Dr. who actually knows anything about CCM. I have 4 more CCM’s, one of which is in the center of the pons of my brainstem. I pray that you get better soon. Please comment again and we can at least hold each others hand while we go thru this mess. Hugs!!!

Comment on 4:05 am and I feel like posting! by Heidi

Heidi — Mon, 05 Mar 2012 06:39:34 +0000

Hey just wanted to say thankyou for this and that I still have leg problems that come and go most come right now. I see my Neuro on Mar 8th and a Neuro Vasc specialist too. I just don’t know what’s going on. My legs are weak and they hurt so it makes for a very long day… I take Keppra 2000mg per day , I wonder if it’s even working. You may not remember my story. I am Heidi and 1 yr 9 mo. ago my ccm bled into my brain that we know of 2x’s in one wk. I had to have emergency surg at UCSF Dr. Lawton and all went well, I could move my legs after and did well and my legs have not been the same since. My Neuro is thinking seizures and the weak legs are the after math, I am having seizure activity that I am not totally convinced or understand, my arm will vibrate and fingers shake, feel dazed after like in a fog. Same side as are Left eye is winking shut a lot this is new. I hate all this and it’s very hard to keep goign backwords. My CCM is gone and it was rather large ove 3 cm to exact. There is a large DVA left behind in the parietal occiptal lobe of course there is nothing they can do about it but I am at a point that I want answers, clarification and poss. get off of Keppra. Keppra helped at one point but may not be helping an more I think or I need to think of adding another med at this point. I don’t know but I sure don’t want this to be excused. I choose not to drive due to my “loosing focus” foggy brain that comes on at times. Do you have any thoughts on any of this? Anything would help for my appt Mar 8 this week , thankyou and God Bless for doing this, it’s awesome!

Comment on 4:05 am and I feel like posting! by melessia

melessia — Thu, 01 Mar 2012 17:03:39 +0000

Hey Lisa,
First of all, thank you for your prayers! If you don’t mind and when you have time, could you send me a picture of Michael and his story. I would love to share it with my readers. I feel so strongly about bringing Awareness of this disease for everyone, especially for the sake of the children dealing with this. I was once one of those children who suffered without any knowledge of my condition. I feel blessed to have survived the symptoms I suffered as a child. My email is sonjabass59@gmail.com if you want to email me a story to share. Give your Michael a big hug from me!

Comment on 4:05 am and I feel like posting! by melessia

melessia — Thu, 01 Mar 2012 16:45:40 +0000

Thank you, Eddie! Your friendship means so much to me. And you are so right about Jesus. He is my best friend as well as my Saviour. All of my hopes and dreams are safe in His Hands. Hugs!

Comment on 4:05 am and I feel like posting! by Lisa Vasquez-Ruiz

Lisa Vasquez-Ruiz — Thu, 01 Mar 2012 13:46:45 +0000

This is a stranger praying for you. I read your post in Angioma Alliance. I am the mother of Michael. He had a stroke and craniotomy at the age of 8 this past December. Love and Prayers to you Mellesia.

Comment on 4:05 am and I feel like posting! by Eddie Jeansonne

Eddie Jeansonne — Thu, 01 Mar 2012 12:16:37 +0000

You are a very strong woman and besides family and friends you have Jesus with you. The greatest power of comfort and healing is in Jesus Christ. Stay strong and never give up the fight, We l:ove you Mellesia.

Comment on A Sleepless Night! by Sleepless Nights | NosyAss®.com

Sleepless Nights | NosyAss®.com — Tue, 24 Jan 2012 08:19:16 +0000

[...] A Sleepless Night! (mydailywalkwithccm.com) [...]

Comment on Do It Anyway! by todays date

todays date — Sat, 21 Jan 2012 09:51:26 +0000

7 years ago, Contador got his 1st win only a few months after cerebral cavernoma and risky surgery left his life hanging in the balance.