ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Mei Mei on March 07, 2012, 12:56:27 pm
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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
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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
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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
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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
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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
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Mei Mei
I am happy to hear your finally feeling some relief. Please keep us posted. ;)
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Mei Mei...fingers crossed here in hopes that this will finally bring you relief! Take care and let us know how it goes!!
Jay
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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
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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
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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
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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
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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
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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
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Hi All ;D,
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
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Hi All ;D,
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,
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Hello All,
I had my stitches taken out this morning and came home to have that wonderful first shampoo after 10 days. Boy, does it feel good!
Will see the surgeon in a month and I'll have more information to tell. Right now it is too early to tell but so far so good. I don't feel that pressure in the titanium mesh area but still feel the pressure in the neck. The surgical area is still very sore and swollen. This was a more difficult surgery to recover from than the Dr. Ducic excision surgery last May. I think he did a lot more digging. I will ask them on my next visit. Also, with the excision surgery, I got up and could walk around and my incision site wasn't nearly this sore. With this surgery, my standing had to be assisted for the first 12 hours post, I was catheterized and had trouble in the bathroom and had a large floater that went away after a few hours. Also had really bad pins and needles in my right hand pinky and ring finger that went away also after 12 hours.
Sincerely,
Mei Mei
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Mei Mei ~
I just wanted to offer my congratulations on what appears to have been a successful surgery. I trust it will give you the relief you've sought for so long. If so, the post-op issues, while troublesome, are worth the inconvenience if you come through this with the pain resolved. I know you'll keep us updated and I look forward to reading about your recovery progress.
Jim
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For Jim Scott,
I would like more info on the AN support group meeting in Worcester, Ma. I live in CT. and Worcester isn't that far away.
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Hi, Bonnie ~
I think you're referring to the semi-annual ANA NE Discussion Forum Brunch held at Maxwell Silverman's Toolhouse restaurant in Worcester, Massachusetts. The next one is scheduled for Sunday, April 22nd. My wife and I intend to be there and hope you can, too. It's a 200-mile round trip for us but it's only twice per year and always enjoyable. Our group gets a private room and the food and service are excellent.
Here's a link to the restaurant's website with all the details about the Sunday brunch ($20. per person, cash only). http://www.maxwellmaxine.com/ (http://www.maxwellmaxine.com/)
You can 'sign up' in the thread Phyl started on this forum.
Jim
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Hi All,
I'm not so sure that the surgery worked. It's been since March 16th and it's very subjective. My original DC neurosurgeon was very skeptical about it. I saw Dr. Ducic on Thursday and he referred me to a pain specialist in DC, so I'm going to get another nerve block. If that nerve block in my neck doesn't give relief the information is that I need to cut the C2 nerve and take the C 3=4 4-5 which is big surgery again. This is what Dr. Henderson said. He is the doctor that is closely connected to my geneticist Dr. Clair Francomano. All the Ehlers Danlos patients come to see him and or get surgery with him. He's left Georgetown and moved to some small hospitals in Maryland. Dr. Ducic had me make an appointment with a doctor in the Gtown Neurosurgery Dept. All this is happening in the beginning to mid June so there will be a lot of running around. The pain is constant in my neck and lower skull. Wish I never had the Titanium mesh in my head.
Mei Mei