Hello everyone, I had a MVD three months ago..... I was feeling great...No pain, could feel my face again, seemed my life was looking up. Last week I started getting them same feelings as i did before the MVD, so i just waited to see if it would go away. But It has come back full on all the same as I was before my surgery. During my MVD they found two vains wrapped around my nerves, so now Im wondering if something is now touching them again??? Also I have a very deep indent on my skull where her opened up that just started to get deeper, did the skull piece move? Anyways Please someone help me out. Connie
I was a little disappointed in my surgeon because I too have an indent which is deep. Go back to the surgeon and discuss it with him/her. We can't tell you if it is something is "normal" or needs attention. When in doubt, go back to the surgeon. I know this may cost you money, but can't think of any other reasonable action to take.
Hi Connie,
Dejavu same thing with me, I did greT until 6 months post-op. then the sx’s returned and thensome. My craniotomy site is deeply indented, that does not bother so much as after18 months its extremely uncomfortable to lie on. It should not be like this. Still having issues. My doctor wanted to do a rhiziotomy , I cancelled twice. Mine also was a. Extra large petrosal vein causing the compression. In Jan I found out right side has compression also. Surgery was scheduled in Feb. I cancelled because of two reasons, first I had a bone infection and secondly what if this happens that I have an issue like the left side then what do I do. Going for a second opinion. Already called one doctor said he will not do a redo.
Connie have you. Brought this to your doctors attention and what was his answer or recommendation? Dont loose hope Connie there has to be someone out there to help you. Also they usually like to wait al least year for healing so you may have to give it more time. I know its frustrating when your in so much pain. Talk to your doctor and let us know how you made out
My Best
Joanne
I was in so much pain my surgeon didn’t want to wait a year to redo. Now I’m being told to just wait this out though. They say my nerve has undergone a lot of trauma in the last year or so. It’s easy for them to say wait if out. I’m the one balled up on my bed crying from the pain. Even though I love my surgeon I’m going to go have my case reviewed by the head of the UT Medical School’s Neurosurgery Institute on Tuesday. It never hurts to get a fresh pair of eyes if you have an unusual case.
You need to contact your surgeon immediately about the part that seemed to !!!!
As far as your pain -- it is supposed to take a year for all nerves and cranial stuff to heal on the inside -- but your skull is a different story.
Some people wake up with pain, some get it pain again after a few months, some a few years..... you should be checking with your neurologist on this part.
Keep Posting!
Luckily I don’t have a dent, but I have a squishy pocket of csf back there from a leak that they say will resolve itself in the next two to three weeks. Never a dull moment! I’d be really on my surgeons ass about any big indentations back there. That doesn’t seem right to me.
TY guys.... I just don't understand why I felt great after MVD for awhile and out of the blue it came back to haunt me, but I taking it one day at a time and i have put a call in for my doc to figure out what to do, whats wrong and so forth. It feels like mt fore head and temple, cheek are stiff and I'm all dizzy, of course with the grinding pain again but this makes no sense to me. Maybe I got happy to soon. I just hope it is something touching my nerves again in my brain because then i know it can be fixed again. I did nothing to cause it like over doing it or nothing to that matter. The day it started again I was out with my daughter shopping for my grandchild and a shock went through my head and face that dang near knocked me down.... and i have not been the same since .....Anyone have a second MVD? and what did they find?? please please message me.... I'm trying to stay calm. I almost feel disappointed in myself. I refuse to take any sort of pain medication anymore for the simple fact It is not good for me. If I have to I will start taking Tramadol again but I would have to be way worse then I am now.... Also looks like iv been punched in the eye.... so weird.
Have you made an appt. to see Anybody????
about the seemingly moving skull piece????
What if it were to move into a vital area.... I think that is priority one -- I left some words out in my post -- this is what I had meant to say.
I also don't think you should be looking like you were punched in the eye -- if it was your daughter with this -- what would you do? Tell her to go to ER?
1st Tackle this - Then worry about the rest
Waiting for the doc to call...... I hope its just a giant dent. I think I was scared to call my doc because I did not want to see any disappointment in his eyes or did not even want to hear it from his voice, and to be honest I thought maybe it would pass. But I did call yesterday and I will call again after they have lunch. I hope he does not give up on me.
Connie, you need to see your neurosurgeon ASAP, otherwise go to ER if you can’t get in with NS or your doc. It sounds like something only the NS can really respond too…or the ER.
Huge (((( hugs )))) try not to worry, put on some calm music, take a warm bath, pot of tea, a good book, something to relax you.
It’s going to be ok, thinking of you, Mimi xx
Connie Adams,
I went back to my surgeon to ask about the indent on my skull which I noticed appearing to get deeper around 6 months after my surgery. He said that it is typical. He said the skin and muscles tend to take a good deal of time to settle. (Since I had surgery for a CSF leak within 2 weeks of the MVD, extra muscle was removed) Anyway, around 6 months post surgery I noticed the more pronounced deeper indent. The surgeon used a titanium plate mesh to cover the area of skull he removed. In doing so he did not match the shape of the curvature of the skull portion he removed, which was about the size of a silver dollar. It was molded in a different shape than the same mirror area on the other side of my head. He says the titanium plate mesh did not move. He said there was no indication that there was a problem and he is most assured that a CSF will not develop at any time in the future and my brain in not being smooshed in. The area of my scar and indent feel good now, the first 6 months or so it was tender and sore. I hope this helps.
Don