I've scheduled craniocervical fusion surgery at TCI for June but I'm really not comfortable with it lately. I posted about this in another forum but nobody was really "getting it." I really think this is a serious discussion worth having for those of us facing fusion surgery...so here was my last post:
I'm scared but I feel like it would help people like us if we could see the results of these surgeries. They do them on a regular basis right? How are these folks doing? Where are they? I mean I am totally confident in Dr. B and I completely understand why this is all necessary, but for a place that does thousands of these surgeries... they only have 3 testimonials on their website? And I haven't found anybody anywhere else online (blogs, youtube, etc) coming out and saying how successful their surgery was. This frightens me the most. Right now I'm thinking that there's so much money going into research and what not, that it might actually be a better idea to wait this out as long as I possibly can.
To be honest I had fusion at C5,6 and 7. I had electric shocks going down right arm (dominant side) and into back and chest. Was so painful I could not concentrate let alone do homework. Within day of it I only had slight pain in the neck (not oxymoron lol) and could use my arm with no issues. Only problem that I've had is because the pain that was causing was is now gone but i feel everything else.
Personally I am happy I had the fusion but wish it took away all the pain. I only spent the night in the hospital and he said if you have surgery early in day you can go home same day. It isnt't that bad atleast my experience wasnt
However, I am talking about Craniocervical-fusion. This means fusing several vertebrae to the skull with screws and rods. This changes my first option of only having a decompression surgery to a 7+ hour surgery that involves extracting the skull and repositioning it permanently. I was told the loss of mobility would be about 50% but have read that it can be up to 100%. I'm 29 years old and this is all just insane. Of course things could be worse so that's something (*_o).
But I mean there must be at least hundreds of people out there who have had this done. I guess I'll just speak with my neurosurgeon.
It does not make sense to me, but when we had our first support group meeting on Tuesday, a young lady (approx 30y/o give or take) stated she had it with her decompression. She said she had it cause she was told that she need it for the decompression to be successful due to her having Ether Danlos (SP) [connective tissue disorder]. She said it went well. she has a good range of motion from what I saw during the discussion of the group. Sorry, I couldn't help more, but my fusion was completely different and what I am telling you is what I saw and heard.
Do you happen to know where/who did her fusion? I've been looking up occipitocervical fusion which looks like it would be more favorable to post-op mobility but not sure if it even applies to my case. Thanks for sharing this story because you're probably right, the decompression will probably not do much without the fusion.
Michael Salasky said:
Bill,
It does not make sense to me, but when we had our first support group meeting on Tuesday...
My Husband has also been told by Dr B that he needs the craniocervical fusion (C1-3) with the decompression surgery. We're also looking for feedback from people who have had the procedure. It's awful how little feedback there is from people whose surgeries went well....
Hope you (and we) find the info we need. Look forward to hearing how your surgery goes (if you have it).
I'm meeting with my psychiatrist tomorrow and I'm going try and set up a phone session for her and Dr.B so they can speak doctor to doctor. She'll know all the right questions to ask :) so I'll make sure to post all the info that comes from that.
Roxi... this video might help put you at ease a bit if you haven't already seen it - http://vimeo.com/38189654
Thank you for backing me up on the lack of feedback issue. The only reasons I can think of for this, is that the usual patients that undergo this procedure are either much younger than us, or patients that simply had no choice other than to have the procedure done. Anyways, you can be damn sure I'll be sharing my experience when this is all over :)
BokkieNYC said:
Hi Bill
My Husband has also been told by Dr B that he needs the craniocervical fusion ...
I will get a message to her and see if I can get the information. All I know is she does not go locally (Pittsburgh, PA area)
Bill Zern said:
Thank you for your reply Michael :)
Do you happen to know where/who did her fusion? I've been looking up occipitocervical fusion which looks like it would be more favorable to post-op mobility but not sure if it even applies to my case. Thanks for sharing this story because you're probably right, the decompression will probably not do much without the fusion.
I will get a message to her and see if I can get the information. All I know is she does not go locally (Pittsburgh, PA area)
Bill Zern said:
Thank you for your reply Michael :)
Do you happen to know where/who did her fusion? I've been looking up occipitocervical fusion which looks like it would be more favorable to post-op mobility but not sure if it even applies to my case. Thanks for sharing this story because you're probably right, the decompression will probably not do much without the fusion.
Craniocervical - Fusion from what you have written & what I have read is very controversial. A 50% mobility loss is a Huge challenge. Is it possible to get a second opinion or is there a treatment for your T Spine that isn't as invasive? I hope you get some pain relief. I really do.... I just don't want you to possibly become paralysed. I was 100% paralysed for about 5 min. It was a lifetime. I felt like I know what stroke patients feel. You are totally aware but can't move. I wish you strength in making this decision.
Tracy z.
Thank for sharing your experience :)
However, I am talking about Craniocervical-fusion. This means fusing several vertebrae to the skull with screws and rods. This changes my first option of only having a decompression surgery to a 7+ hour surgery that involves extracting the skull and repositioning it permanently. I was told the loss of mobility would be about 50% but have read that it can be up to 100%. I'm 29 years old and this is all just insane. Of course things could be worse so that's something (*_o).
But I mean there must be at least hundreds of people out there who have had this done. I guess I'll just speak with my neurosurgeon.
HI Bill, My name is Kendra. I Just saw Dr. B last week and he suggested both a decompression surgery and the fusion of the top vertebrae to the skull. I was prepared for the decompression possibility, but the fusion was a shock to me. All those bars and screws seem crazy. I also cant seem to find any info about people who have had success with this. I certainly saw, on my mri, the place where the odontoid process is poking my brain stem and it does make sense, Im just still so surprised and afraid. What have you decided to do? It seems we are in a similar situation. I also wonder if it might be better to wait until they get better at this technique, but my symptoms are completely debilitating and sometimes I just feel that I need to trust the doctor and do what he thinks will help. Thank You!! Kendra
They are the only ones in the country who do this routinely from what I can determine. That raised a red flag to me and is why I didn't go there. They couldn't answer why no one else does it.
This isn't completely true. There are a lot of NS's around the country that do fusion regularly. I think the main problem comes back to the awareness issue, and also the experience of the Neurosurgeon because obviously, cranio-cervical fusion is a lot more complicated than just the decompression. One NS that comes to mind besides the Chiari Institute that does fusion is Dr. Frasier Henderson. They are both part of an organization that can be found here: http://www.csfinfo.org/
There are also different reasons that a person might need fusion. Besides Ehlers-Danlos-Syndrome and/or to relieve brainstem pressure (basilar invagination, basilar impression - when the odontoid actually may enter the foramen-magnum) ... besides those issues I'm not very certain on why one might need this fusion. When I get some answers I'll be sure to post them here, unless anybody else has some answers.
chiarigirl12 said:
They are the only ones in the country who do this routinely from what I can determine. That raised a red flag to me and is why I didn't go there. They couldn't answer why no one else does it.
My psychiatrist decided to start running the show and I trust her the most out of anybody, so she got into contact with my NS and came up with a plan.
The surgery requires a "psych-clearance" so I needed her for that as well. So i had to get some tests done to come up with more objective evidence that I would benefit from CM surgery... a 24-hour holter monitor test, a sleep apnea test, and a swallow test. The swallow test was really the only one that came back positive for issues, but my sleep test was horrible. I slept less than 2 hours at the clinic, only one stage of sleep and had an average of about 7-8 arousals per hour, which is relative to waking up or something. I've had a sleep test before and it showed that I never reach "deep sleep." So basically, it was a consistent showing of my poor ability to sleep... in way that test would be positive as well.
Anyways, I recently got a 2nd opinion and this NS strongly urged me not to get fusion. I still have a lot of conversations with doctors ahead of me now, but basically I would like to avoid fusion and any other unnecessary surgery...or even risking having to have additional surgery after the first haha... this is ridiculous isn't it.