does anyone ever or did anyone ever have a tight/pressure feeling on the side where surgery was? Just wondering I do today and I dont know if its cause I have been over doing it, and I have been stressed, or if its cause I had 3 surgeries in that spot, and its part of the healing process I am calling my neurosurgeon tomorrow, but I wanted to know if anyone else had/has experienced this

You are not alone!! I get the pressure like my brain is trying to squeese out my soft spot. I have a perminate small soft spot because of one of the types of surgey I had. I had the EMS - indirect bypass -> muscle (and it's bloody supply) is laid down on the surface of the brain and left to grow, and the STA-MCA. Because of the EMS I have the soft spot.  It doesn't matter what i am doing (adult couple thing, excersizing, or stress) anything that your blood pressure can go up. I get it. I did talk to my nuologest about if I need to go on any blood pressure medication. I did not but I do have to watch myself, and pause during strenous activites.

Talk to you nurologest abouth the blood pressure medication. Relax.
Becky

Luca had the same as Becky, i.e. both direct and indirect bypass on the same side, and she has pressure on her 'soft spot' too. To the extent that if she gets upset or sick, etc it blows up like a small balloon on the side of her head. We've been told that this is just something we'll have to manage and live with for awhile.

The pressure in Luca's case isn't blood pressure, but cerebro-spinal fluid pressure. CSF pressure should be maintained/contained between the spine and around the brain and it's normal for it's pressure to fluctuate a bit if you get upset, sick,etc. But if you've made a hole in the skull, you've effectively given this CSF a place to escape when the pressure builds up a bit.

It's called a pseudomenegoceole (spelling?).

I can't remember the exact figures, but apparently the human body is capable of producing quite a bit of CSF quite quickly to maintain a constant pressure if some is 'leaking'; and likewise it is capable of re-absorbing the excess CSF when the pressure situation subsides.

There are a number of procedures to assist your body to drain the excess CSF if the pressure is not subsiding on it's own i.e. lumbar punch or, in Luca's case, putting a tube subcutaneously from her spine to her stomach to drain the CSF.

Good luck

Mark (Luca's Dad)

Throbbing pressure on the sides, sometimes in the back too, daily.  It's like feeling the blood flow, like no one else feels their blood flowing.

I have constant pain/pressure at the base of my neck (back of my head) but of course I didn't have surgery..so I don't know if thats from the moyamoya vessels or what!  :'(

Michele,
I believe you are the one having trouble getting the surgery? The surgery should help a bit. It could be in your case you need to take blood pressure medication. Everyone is diffrent. That is why it is so important to find a nurologest who KNOWS MM. Have you sent you infromation to Dr.Stineberg? Maybe his team could help work something out so you can get the surgey. Or ask your church of a bake sale or you community center if there is anything they can do as a fund raiser for you. I will say a prayer for you.
Becky

Thanks Becky for the encouragement.  I am working on a few things for the surgery.  Yes, I do need a new doctor with experience with MM and yes I did send my info to Dr. Steinburg.  I really don't want to re-hash all that again so I will leave it at that  :-X  I am trying to stay more upbeat about all of this and I know things will happen however they are meant to happen!  
Thanks for the prayers!
God Bless You All
Michele