Cranio-cervical fusion ahhhhh

[billyz123]

Has anyone had this done? or can anyone direct me to more information about patient outcomes or patient blogs (besides this one poor girl with a billion other problems). I wasn't freaked out about it until recently because I know that it's pretty obvious that I need to have it done, but there seems to be at least a couple different ways that Neurosurgeons are doing this procedure. For example, I searched this forum for "fusion" and there was a post from 2009 about how this woman was going to get her decompression done at TCI and her fusion done with Dr. Henderson( i think) and that was the last post that person ever made. I mean it seems like, for the most part, the only people on the internet talking about our conditions are the ones who are currently suffering. Don't get me wrong, I love this and other forums sooo much and love everyone that's a part of them for being so open, honest, and full of love and compassion... but where are the people who have gone through it? Where are the patients who have actually had cranio-cervical fusion???

-thanks, I love you<3

[sweetboyroy]

I  went to the Chiari Institute in Great Neck, NY.   I agree with you SelmaS, I don't think I can expect NO PAIN...although that would be lovely, but I didn't expect a slammer every day either.   I liked Dr Insinga...I hope they have some answers when I skype with them on thursday.

[selmaS]

  Not sure if there is no pain after these surgeries...should be less pain and I am grateful for that...but no pain....???

I did not have the fusion and was told I would need it as I would also need to be de-tethered....only had decompression and happy that is all the further I went....does not mean I may need to get one or both down the road.

BTW- Dr Insinga did my decompression....

[Nellan12]

Hi, sorry to hear that your going thru do much pain especially after having all those Surgeries. I had my decompression done in October 2011, and now I need to get also to fusion of the C1& C2, I am just waiting on my insurance... I was just wondering, where are your doctors from? Did you have a lot of dizziness before your surgery ? My doctors seem to be very confused ,when it comes to this dizziness ,but it has increased drastically since I first got diagnosed.. Your not the first person that I have hear of that has had problems with the after CCI  surgery ...but the person I had spoke to was going to see my doctor to see if he can help her ...good luck keep us posted  

[sweetboyroy]

I also had Dr Rekate, who did my decompression Aug 2012, with Dr Latefi doing my fusion, C1,2,3.   The following March, Dr Rekate had to remove bone that had regrown between the rods.........then last October, Dr Rekate and Dr Insinga removed even more bone.
I fell in aug 2011, that was the injury that caused my Chiari, I wasn't born with it.  I have had a headache EVERY DAY now for 3 years.   I have some good days, when it is tolerable, but I have lots and lots of sucky days.  And I have developed migraines on TOP of my regular headaches.  I say headaches, but the pain is from my hairline to the tip of my nose, and temple to temple, so it is more FACE pain.  I am skyping with both doctors next week.  I am very frustrated, and discouraged.  I need a break.  I don't want any more surgeries.  But I am wondering if I would feel better without these rods in my head.  I am glad to have found this forum topic.  I want to know if there is anyone out there who has had the decompression and fusion who has NO PAIN.  

[Nellan12]

Thank you for listening and being so supportive ...I have been reading all your post to everyone your so good to all that need suuport

[selmaS]

  My surgery was 7.5 hours...was only supposed to be 3 to 4...not sure why it was longer....I did have tissue harvested for my dura patch and not sure if that along with me having EDS played a role there....

I am older then you and if I had to have a fusion I would,,,,but for now I am fine with out it,...you on the other hand had one that needs to be re-done...

The time frames may feel long now and while you are in the middle of it all, but once you are feeling better  it should feel like it  was a flash in the pan....fast and not as bad....I pray that is how it works out for you. <3