ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Mei Mei on April 07, 2014, 08:36:06 am
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Hi!
I haven't been writing to you much because I've been in so much pain with the mesh in my suboccipital area. The pain went down the side of my neck and across the back of my shoulder...all on the surgical side since the Jan 2010 AN surgery.
The doctor was trying to back out of the surgery as he said it was high risk with little return of relief. I was grateful for his hesitation and concern, but I had to do it. We went ahead with the surgery that involved the neurosurgeon and the plastic surgeon. All was successful. No more pain on the surgical side for the first time since 2010.
I am writing this here in the pre op section for you Newbies. I really don't understand why they need the mesh when they can use the skull bone they've taken from the initial incision to commence the surgery.
Keep the faith and make sure you don't pursue more health issues than you've bargained for. Keep your surgery as simple as possible and stay well.
Gentle hugs,
Mei Mei
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Mei Mei, I am so happy for you! I hope you continue to be pain-free!
-Tod
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Congratulations, Mei Mei.
I know you've suffered from the titanium mesh and I'm delighted to know that it has finally been successfully removed and your pain has subsided.
Jim
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Yayyy Mei Mei!! I am so glad you finally after all this time got resolution! Life goes on now, eh? :)
Jay
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Yes life is going on. I felt better the moment I woke up in recovery. The pressure was no longer there. I've been having an outbreak of hives all over my body and the dermatologist says it is from the mesh and I have Mast Cell Disease. It's rare and if you are going to get Titanium or any metal put in your body it's worth a trip to Denver to get the testing done first but frankly I really don't see the purpose of using the mesh at all when you can just close with the skull bone that your parents gave you. I've been through some pretty dark times trying to figure this out over the past 4 + years and I feel grateful and humble knowing how much all of you have done to help me out of the Dark
God Bless all of you FORUMites!
Gentle hugs ,
Mei Mei
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Glad you got some relief from this issue.
Regarding why the mesh. Sometimes there is no bone to put back in. I have seen procedures that basically grind the bone away with a rotary tool. Once the bone layer becomes thin they can just peel it away.
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Thanks, Rupert. I just wish they had saved my skull bone to put it back after the tumor was taken. I can't tell you how wonderful I feel now. Don't need to microwave a hot wrap first thing in the orning and no more icing from 3pm till midnight. Life is good now for me and Kathy near Cincinnati, the only other person I know to have had this done.
Sincerely,
Mei Mei
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Did they replace it with something, or just removed it?
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Hi! They replaced is with something. One doctor from two years ago said he would replace is with a custom made plastic plate, but the neurosurgeon at Georgetown sent me to a plastic surgeon who is also a dentist (Dr. Baker) and he said the plastic wouldn't do because they would have to use Titanium screws to put it in. He instead had a custom made plate made of Methylmethacrolate which my allergy testing in Denver showed no problem for me. He made notches like a jigsaw puzzle so he wouldn't need any hardware. Dr. Kalhorn and Dr. Baker make a great team approach. I'm still having hives all over my body and am very itchy. I'm trying to find out how long it takes to get the Titanium out of my system. The Meth... came off in two easy pieces and the Titanium having been in there so long was to be expected to have many broken pieces but no, it came out in one piece. The doctor were very happy as was I. No CSF leak, meningitis, anesthesia complications. I told them to write it up. This will be the second time I was written up from the complications due to the 2010 retrosigmoid. We had a great coming out party on April 1st and our team was no fool. Thank you Georgetown! ;D I now feel 30 years younger than I did last month!
Thanks for your interest!
Mei Mei
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The titanium plate from my surgery became infected 1.5 years after surgery. My surgeon removed the plate and did not replace it with anything, I am missing a portion of my skull the size of a ping pong ball. I have done fine without it. I did have Gamma Knife last summer and am having horrible headaches and migraines now that I think are related to the radiation.
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That was considered but was not an option because my defect was a large rectangle about 2 in. high and extended from behind my ear all the way to the middle of my head...about 5 inches long. It took four surgeries to get it right and I am so thankful to the docs at Georgetown.
I was there for my first Post Op and one more on June 2. They gave me my mesh and 18 screws so I could take a look at it.
I'd like to share the pics. I took on my cell phone but can't figure out how to attach them here from my downloads. It was so nice to see them in a plastic bag and taken out for good. It was a beautiful site.
I feel 30 years younger.
Mei Mei
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Mei Mei I had read many of your posts when I was doing my research and I always felt so bad for you. I am so happy now to see your pain is gone. It is a good lesson that in the end we must advocate for ourselves, and keep searching when that is needed. Your story is a great example of personal triumph. God bless and all the best.
Rich
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Thank you, Rich. I am glad you went to House. I was going to go there but someone here said I needed to get the surgery right away or I would have a stroke. I don't know how I could have believed that person with all the knowledge I have. I've been to California before for another surgery correction in 1989 and going to House was no problem for me. Another doctor in the midwest told me to come there and he would take out the mesh but once he saw it, he backed out and told me to leave it in because the defect was too large. I've see you've lost all your hearing. I lost mine because of the surgery. I'm used to SSD and don't use the hearing aid as it doesn't help with direction and balance.
I'm posting here because I want all the newbies not to make the mistakes I did. Putting these in post op would not help the newbies I so care about.
Thank you for reading my posts before your surgery
Sincerely,
Mei Mei
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Thanks Mei Mei. House was awesome. Your posts are such a good example that we have to advocate and search for ourselves. I greatly admire your courage for going forward even when the doctor told you the chances were so slim. You trusted yourself. It is definitely great for people to see your experience. So they know if they are suffering, or not comfortable with what they have heard so far, they should keep looking for an answer, even if the doctors they spoke to say there is not one.
You rock!!!
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Thanks again, Rich. I always regret I listened to a doctor that said I was going to have a stroke if I didn't schedule the surgery right away. He put me in panic mode and so I didn't go to HEI. I am so glad that you went and that the outcome was good for you.
I have had four brain surgeries. The first three showed no problem with the incision but my poor skull is tired of the cutting so this one is harder to heal. It's lumpy and swollen but at least the pressure is gone.
I don't know that I rock. My surgeons on the last three surgeries rock. They got me out of this. I really couldn't continue with this thing in my head. It put me in some pretty dark places but with everyone's help including my own inner strength, I got through. Be careful of who you listen to.
Mei Mei
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So glad you have found relief, Mei Mei :)
Mary
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Great advice. God bless and good luck.