Chiari Endoscopic Decompression - Say Goodbye to the 8 inch Scar! (Chiari Endoscopy)
Tue, 10/27/2009 - 02:25 | 
Chris Well,blow me down with a feather If I haven't found something about Chiari Malformation that hasn't excited me for once in a positive way?
I have come across a blog by a woman in the USA called Lori....I don't know many details as her blog is fairly sparse of personal detail. I can't even see where to contact her to ask more about the blog title.......
Basically it has grabbed my attention because of the teeny weeny operation scars that a patient is left with after undergoing "Chiari Endoscopic Decompression Surgery"
I will get some more research done on this and report back.
I have just received information that Mr Malluci at The Walton Centre for Neurology actually performs endoscopic surgery for Chiari and Syringomyelia in the UK.
There are quite specific requirements to be considered for this type of surgery, but at least its great to know that this is being practised in the UK!
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Hi Chris,
I just found this whilst searching out of curiosity to see what was out there for Chiari Endoscopic Decompression these days. I am the Lori you speak of; this link is to my blog. I have recently begun to update it again. It has been three years since my surgery with Dr. Di. I am doing fabulous! I still have my issues but Posterior Fossa Decompression is not a cure, it just stops the progression (knock on wood).
Thank you so much for helping so many! I love the way your blog is laid out. Very user friendly. I need to keep reading!
Sincerely,
Lori Dingus
lori.dingus@gmail.com
mychiaribooboo.blogspot.com
Hi! I'm not the Lori you refer to here, but I will be having this procedure done by Dr. Xiao Di at the Cleveland Clinic in April. I was actually doing a search to see if I could find more technical information on it, as everyone is asking questions. I'm not real good with all the details, though Dr. Di did explain it well to me... I just have a hard time explaining it to others!
The long and short is: smaller incision, less invasive, less chance for infection, dura (most of the time) is not opened, thus less chance for leaks, quicker healing, etc.
Dr. Di has been performing this surgery since 2003. Prior to that time, he performed the more invasive decompression surgery.
I have spoken to several people who have had this surgery with him... with success. One of these people was 3 years symptom-free. She is just now having some recurrence of symptoms... but actually woke up from surgery with pain ONLY at her surgical site.
I would encourage you to have your doctors find out more about this procedure!
Blessings to you, my UK Chiari Family!
Lori
p.s. feel free to contact me at laratterman@yahoo.com if you have any questions.
Hi Lori
Thank you for visiting and for your kind comments, and the best of luck with your surgery!!!
It's great to know that there are advances in the procedure, it took me around 8 months to get over my own (non endoscopic) and just wish that it was available in the UK. I know lots of people that would have benefited from it.
Please keep us informed, and would love to get your story on the site too?
Speak soon and good luck ;)
Chris
Well, i have to say that i like the big zipper on the back of my head, i wear it with pride, so to speak. It is also the only evidential thing we have to show people, meaning getting people to acknowledge that , yes we have had brain surgery, especialy when it comes to DWP.
Darren
Hi mate, I have to agree with you. There are some people tho that are put off by it. But also with the small scar goes a shorter recoup afterwards.
Hi, the name of this mini blog caught my attention. I have a 7mm herniation that has been missed on my MRI's for the last 13 years(!) and was finally diagnosed on Sept 19, 09. I am scheduled for the Chiari Endoscopic Surgery a week from today, 12/3/09 surgery date. My surgeon, Dr. Xiao Di (Cleveland Clinic in Ohio, USA), has a patent on doing the surgery via endoscopy. Dr.Di has performed over 200 of the surgeries, 92% success rate, and the incision only being about 2cm. He is going to do the decompression, remove part of C1, and do a dura scoring instead of the full duraplasty. I have read a lot of promising studies on the dura scoring. Although, if there is a lot of scar tissue, he is going to open up the dura and do a tonsilectomy. The recovery time is considerably less than traditional surgery, only about 4-6 week or less without the tonsilectomy and 6-8 weeks with tonsilectomy. Dr Di did mention to me that one woman was back to 100% of duties within 1 week. Wow, is all I can say to that!
I will try to let you know how things go, email me if you wish, sjflecke@gmail.com.
Keep up the good work on the website!!
Sarajo
Thank you very much for that information, and for your kind comments about the site.
I am enthralled by the endoscopic surgery so will try and get some more research done.
Good luck with your own surgery, I hope that it all goes well for you.
If you feel up to it when you have recovered, would you mind writing a guest post about it for this blog please? I am sure that lots of people would benefit from learning about it?
Thanks again and speak soon
Chris
Hello! I am back, 9 days post op from endo surgery. I realize that some people wear their zipper with pride, and I would have too - it is like a badge of honor I realize. I must say, though, that I chose the endo surgery because of the decreased recovery time, decreased chance of problems/risks, and the decreased dependance on others during my recovery. I am a bit of an independent person. *wink* My surgery was wonderful, went like clockwork. My incision is literally an inch long, I only lost a little bit of my hair, which isn't a big deal to me, but a nice trade off. I did have 5 staples in my right temple/scalp area where they placed the arterial probe, and I have a couple (6) locations on my scalp that are a bit sore/tender from the halo/frame they placed me in during surgery. I am 9 days post op today, healing wonderfully - since day 2 post op, i have been showering/dressing on my own, up and around. Day 3 I came home (4hour drive from hospital, I sat in front seat and was co-pilot!), and day 5 I made dinner for my family. Day 6 I stopped all of the pain meds, just took one when I got the staples out yesterday. Went to the store today - supervised of course. I haven't done any chores around the house - my family is being very protective. I have done lots of resting too - usually sleeping about 10 hours a night and about an hour nap during the day. My symptoms are starting to disapate, no headache in 9 days, and the numbness is gone. Still a little pressure in the head, but I have to remember the brain is still swollen from surgery trauma, as is my neck. I took 3 months off work, but will probably be released for work at my 4 week follow up. There is lots more info I could share with you if you wish.....email me sjflecke@gmail.com and i will respond. Love the site, keep it up, and hope to talk to you all soon.
Hey!!!! Thank you for letting us know about your progress and a very big well done to you for getting through your surgery so brilliantly!
I am really glad that you have done so well and that you are benefiting from having the Endo done. Sounds absolutely amazing ;)
I reckon the biggest benefit is being able to sleep a lot better and not having all that discomfort compared to the traditional surgery. The quality rest will certainly help lots from my own experience.
Absolutely well done and thank you for your continued support of this site too and your kind comments. This place wouldn't be half what it is without people like you and the huge effort that you have made to keep in touch and provide an insight into what is an amazing breakthrough in surgical techniques.
I am sure you can be regarded as a fully fledged member of the "zipper heads club" and you do have a badge that you can wear with pride. You should be very proud of yours ;)
I would love to hear more, and would also love it if you could get your whole story down for us to post here please? I would love to post it alongside all of the others and I am sure it will add a massive amount of positivity.
Thank you again and I do wish you all of the best for an amazing recovery. To say that I am a little jealous would also be an understatement.
Thanks hunny and hope to hear from you soon.
TC
Chris
Does anyone have any insight on what to do about scar tissue that develops after surgery? My daughter had a synthetic graft and it leaked, then another surgery and got a bovine graft. Now 5 years later, she has scar tissue that is causing some of the same symptoms that she had before surgery. Her doctor said there is not much that can be done. He is not going to do another surgery unless the syrinx grows.