Aa
Chiari post op
Scheduled for surgery next week, going to remove part of my skull and most of my top vertibrate.... Anyone have this done before and what do I expect post surgery?
I am a mother of four and two have some form of Autisum so need to really know whats coming.
I am a mother of four and two have some form of Autisum so need to really know whats coming.
Thank you so much. Im flying blind and blinded with pain. Im in a need to rush the surgery but need to also make sure my future will be good as well. I love my children more than life and need to be able to play and run and jump with them forever and ever till its really time the lord calls me home.
Im so grateful to have found this site.
Bless you all for investing in strangers.
Im so grateful to have found this site.
Bless you all for investing in strangers.
I highly suggest to start writing questions down. Selma mentioned this to me before my appt and having someone with you also helps so much. We forget and sometimes I didn't hear what they were saying so my DH and DD always went with me. Also because they see things we don't and they can vouche for you. Selmas thread of questions helped me so much at the time of my appt. Please know your not alone and we are here to help you though this. Wish you the best.
Linda :)
Linda :)
COMMUNITY LEADER
EDS= Ehlers-Danlos Syndrome...it is a related condition to chiari....it is a connective tissue disorder.
We r talking about it on another thread.....http://www.medhelp.org/posts/Chiari-Malformation/Symptoms-getting-worse/show/1711415
EDS?
COMMUNITY LEADER
The amount of bone that is shaved should be minimal...and unless u have other issues like EDS, u should be ok....this is one more reason to have that dx ruled out.
As for the patch, if u do in fact have EDS, u may have a issue with rejection of the patch, which can lead to a leak and infection....
We do have a list of questions to ask the NS in the Health Pages....scroll to the bottom of thi s page to locate a link to all health pages...here is a link to the list of ?'s for NS's-http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186
Notebook is great idea, I have balance issues that are worse when get headaches, trouble talking and walking get really bad. Have noticed memory issues lately also. Ay er last night dr asked what pain I was at from 1-10. I answered I live at a 3. Didnt really notice I am always in pain. When I cough I get a ringing type sound in my ears and vision goes out and extreme pain.
Never thought to ask what type of patch and cant say for sure Dr didnt say what type. Will be having my husband attend aptmnts from here on out. Without a neckbrace, like they used in my cervical surgery, how do you hold your neck still if they are removing the middle section of the top vert? How do I get a basic list of what to ask questions? Where do I get info about what to avoid and expect post surgery?
Any chance of a support group in my area?
Never thought to ask what type of patch and cant say for sure Dr didnt say what type. Will be having my husband attend aptmnts from here on out. Without a neckbrace, like they used in my cervical surgery, how do you hold your neck still if they are removing the middle section of the top vert? How do I get a basic list of what to ask questions? Where do I get info about what to avoid and expect post surgery?
Any chance of a support group in my area?
Hi Cholle,
I have been having problems with my memory as of late. While I haven't seen a NS as of yet (still bouncing through insurance and referral hoops), I have learned to write down things as they pop up (questions, symptoms, meds, etc). I bought myself a notebook that is totally dedicated to my Chiari journey and keep everything in one place. I helps me to make sense of the jumble of stuff that goes through my mind, as well as helps me keep track of meds that do and don't work plus any questions that pop up between visits so I remember to ask. That may be something that you might want to start doing, just so you can remember your questions for your appts.
It would probably help to have someone come along to your appts as well, to take notes and ask questions as necessary. This is a scary time and while no one is expecting you to remember everything, it helps to have back up and support for that piece of mind that your questions have been answered.
I have been having problems with my memory as of late. While I haven't seen a NS as of yet (still bouncing through insurance and referral hoops), I have learned to write down things as they pop up (questions, symptoms, meds, etc). I bought myself a notebook that is totally dedicated to my Chiari journey and keep everything in one place. I helps me to make sense of the jumble of stuff that goes through my mind, as well as helps me keep track of meds that do and don't work plus any questions that pop up between visits so I remember to ask. That may be something that you might want to start doing, just so you can remember your questions for your appts.
It would probably help to have someone come along to your appts as well, to take notes and ask questions as necessary. This is a scary time and while no one is expecting you to remember everything, it helps to have back up and support for that piece of mind that your questions have been answered.
COMMUNITY LEADER
I did not have a neck brace post op....
U really should know these things and ur Dr should have told u b4 u scheduled surgery....
Did u have a CSF obstruction.....what besides HA's r ur symptoms?
I have none of that information. Not sure what questions to ask my doctor. or what to request from him. He is the head of nero surgery in rockford illinois and the 3rd doc I have seen. Had headaches so bad for so many years. But I am adopted and have no history at all. I have had a 3day headache and last night in er...again. So any info on what to ask doctor or what to expect will be greatful for. I have no family except my husband and kids. I just has a C5-C6 cervical with fusion on Jan 26th of this year and now heading into this surgery. Cant find anyone in my area to talk with either... feel very alone. Dont know what to ask for or ask not to have.
Dont even know what to expect with missing parts of my neck and skull, will I get stuck back into neck brace again??? So many unanswered questions but mind goes blank when I talk to doctor.
Dont even know what to expect with missing parts of my neck and skull, will I get stuck back into neck brace again??? So many unanswered questions but mind goes blank when I talk to doctor.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Yes, next month it will be 3 yrs ago I had my surgery, this is called a Posterior Fossa decompression surgery.
Expect to have someone there for a month if u have that many little ones to help u.....and u may need help beyond that as well. This surgery has a different affect on each of us and there is no way to know for sure just how u will do until u r post op.
Have u been checked for all related conditions? A syrinx? Ehlers-danlos?
it is important that u know, as it can affect how u feel and heal post op.
Also, if u know u r having a laminectomy do u also know if u r having a duraplasty and what type of patch will be used?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
