third surgery scheduled for March 16th at GW Hospital

[Mei Mei]

Dear Everybody out there,

I have scheduled a surgery for next Friday call Suoccipital Cranioplasty Methylmethacrylate.   This is the foam that lines the Titanium mesh from the Dura so I shouldn't have pain after then.   He said it would be much better than taking out the mesh at this point and even better than doing the surgery that Dr. Henderson suggested which was to take out the C 3-4 and 4-5 and cut the  C-2.   He said he saw no indication for that.   I'm still waiting for my nurse practitioner to get back to me because she was going to present my case to one of their neurosurgeons. 

Is there anyone out there that has done this?   I haven't heard much about it on the Forum.
As Janet said it is a long hard road to recovery.   I wish there were a super highway but this is the slow train. 

Sincerely,
Mei Mei

[Jim Scott]

Hi, Mei Mei ~

I'm sorry to learn that you have to undergo another operation but pray that it will be successful and give you the relief you've so diligently sought.

Although I know it's a big trip for you I hope you can attend the April 22nd ANA discussion group brunch in Worcester, Massachusetts. I mentioned your travails to my wife because she has had a similar experience (not AN-related).  She said she would like to meet you, if possible.  However, considering the distance and your impending surgery if you are unable to attend, we'll certainly understand why. 

Jim

[mk]

Hi Mei Mei,

I haven't heard about the procedure that you mentioned, but my neurosurgeon uses methylmethacrylate "bone cement" to put back the piece of the skull that he removes during retrosigmoid, without using a titanium mesh at all. That way it seems that he avoids lots of the related headache side-effects. It seems to me that what you describe is somewhat similar.

Good luck with your procedure and I hope you will find relief.

Marianna

[Mei Mei]

Thank you all for your words of support.  I really feel you are all out there and I will bring you with me to the hospital.   I will try to make it to the Wocester, MA meeting but am not sure if I can leave my father who is being transferred to Casey House   for Hospice.   They are worried that he won't be well taken care of by my current home health aide.    He leaves tomorrow and I will get some respite for that but not enough to get to the Mass meeting.   It will cost a lot to pay someone for 24 hours and I will try to work it out with Respite Care.

I don't know much about this brain cement and have sent him a list of questions.    He says he always closes with this and prevents headaches.   I don't know why no one speaks of him on the Forum but he does do ANs and was very said that I had a small tumor and did the retrosigmoid which is known to cause headaches.  He asked me if I had any word recognition and when I said no, his head sank down and looked angry about what they did at Hopkins.  His name is Frederic Schwartz in Chevy Chase, MD and at GW Hospital.

I will search the internet for stories about this.

Mei Mei

[Mei Mei]

Home from the surgery and the swelling has set in.   The doctor said it would continue to swell for 5 days and then come back down.   Before the surgery he said he might take the mesh out.   He didn't do it and said it was placed nicely.   He removed the muscle that had grown between the mesh which is what causes the headaches and pain.   He then painted as he said like putting plaster on the wall.  Now the dura is protected from the mesh and hopefully there will be no more pain.  He says he routinely does this and I don't know why our doctors  didn't dot it.   Stitches come out next Monday and I will keep you all updated as to whether or not this surgery made a difference but so far beneath the swelling  the old sub occipital pain that has been plaguing me since my first surgery is GONE!!!!   I am a happy camper.    Why did I have to get three surgeries to take care of this tumor?
Right before they put me under, the resident asked me what was the size of the tumor.   I said 1 cm x .7 mm  and he said:  a small one as he looked over at Dr. Schwartz.    This is what Dr. Schwartz said to me on my first visit to him a year ago.   Retrosigmoid was not necessary for this small tumor.    Buyer Beware!!
Mei Mei

[mindyandy]

Mei Mei
I am happy to hear your finally feeling some relief. Please keep us posted. 

[jaylogs]

Mei Mei...fingers crossed here in hopes that this will finally bring you relief! Take care and let us know how it goes!!
Jay

[Suu]

I'm really glad you posted about what's been happening to you as it will give other people who come here something to base their own experience on.

Goodluck with your progress.

Suu xxoo

[Mei Mei]

That's why I am posting.   I hate to see people suffer.   I will write a letter to my original surgeons and post it here as well as Dr. Ducic's new paper on his surgery for people with headaches.   I'm not sure if it is ready to be posted but the pre-publication version is available online:

http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2011.02068.x/abstract

I have the paper but he asked me not to pass it around until it is published.    Where would we be without Dr. Ducic and Dr. Schwartz to repair the problems I've been having from the first surgery?

Mei Mei

[Tod]

Mei Mei, I am delighted that this has gone so well and seems to have eliminated your pain. I do hope this is a permanent fix.

-Tod

[Mei Mei]

Thank you, Tod.     I remember that you didn't have a Titanium mesh placed even with your large tumor and long 32 hour surgery.   Then MK mentioned that her doctor uses methylmethacrylate to cement her original skull back instead of using the Titanium mesh.   How was I to know two years ago that it is possible to keep your original skull bone back into place and avoid using a foreign object to close up the surgery?   We do have choices but how do we make this decision on our own.   I am glad I had ANA to help me the last two years, but as we always say,  I wish I knew then what I know now.   When do we say I have enough information and proceed.   I was going to watch and wait but Dr. N said that I was at risk for a stroke.  He was the only doctor of the four opinions to say this and so I went for him.   Wonder why?
Mei Mei

[pjb]

Thank you, Tod.     I remember that you didn't have a Titanium mesh placed even with your large tumor and long 32 hour surgery.   Then MK mentioned that her doctor uses methylmethacrylate to cement her original skull back instead of using the Titanium mesh.   How was I to know two years ago that it is possible to keep your original skull bone back into place and avoid using a foreign object to close up the surgery?   We do have choices but how do we make this decision on our own.   I am glad I had ANA to help me the last two years, but as we always say,  I wish I knew then what I know now.   When do we say I have enough information and proceed.   I was going to watch and wait but Dr. N said that I was at risk for a stroke.  He was the only doctor of the four opinions to say this and so I went for him.   Wonder why?
Mei Mei

It seems as though I am having almost the same problems you had I to have no bone and a new surgeon asked me what the original surgeons did with it ? I had no clue I thought for 2 years something definitely was not right and the screws have been up to the surface right after the surgery. So now I will be going to a new neuro in May to see what he suggests but was wondering about your statement "being at risk for a stroke" why was that because of the mesh or for other medical reasons ?

Best Wishes,

Pat

[Mei Mei]

No, that was the first doctor back in Dec. 2009 when I was never operated on before.   All the other doctors said Middle Fossa but I didn't listen to them because this one said I was at risk for a stroke and the pushed me towards him.   I felt that he knew something the others didn't.   The tumor was entirely encased in the auditory canal and the other doctors including my doctors on Friday that did the third surgery said it was a small tumor and entirely inside the canal.
Mei Mei

[Mei Mei]

Hi All   ,

Just had my stitches out at 9:30 this morning and it all feels much better.   It's still swollen and tender but the doc said that would get better in time.   I see him again on Apr. 26th.

Glad there was this alternative to taking out the mesh.
Mei Mei

[pjb]

Hi All   ,

Just had my stitches out at 9:30 this morning and it all feels much better.   It's still swollen and tender but the doc said that would get better in time.   I see him again on Apr. 26th.

Glad there was this alternative to taking out the mesh.
Mei Mei

Glad everything went well looking like I am going to have the same thing the screws definitely up at the surface and hoping that is most of my problems too and once removed might start feeling a little better ...

Best Wishes,