Okay guys, Im starting to have a mental breakdown. For those that already gave me opinions.. I Need more. I feel like no one around me understands what im going through.. My husband and co-workers, are all for and supporting me to have the surgery. BUT my family ( parents, siblings) are not.
I just dont know. im so scared things are going to get worse if I have surgery, or something is going to happen to me, Or that I dont really need it.
Right now I dont feel any pain. My main symptoms were neck pain, pain at the base of skull and left sided numbness. I was originally going to wait on surgery, but I started to feel worse. Now I feel like my pain is tolerable, and im just being a wimp. I keep trying to go with my gut, but my gut doesnt seem to know! ( yeah, ive lost it. lol)
Before surgery, did all of you guys have symptoms every day? or did they come and go? I know I do always seem worse the day after I try to do anything (cleaning, playing with the kids, etc)
Hi Beeba. I decided to stick with the first Dr. I saw. Dr Caruso. I went back for a second appointment to see him again to re-evaluate and talk over options. I know he's not a Chiari specialist, but he came highly recommend by alot of people in this area. He seems very educated on chiari too. Hes the founder of Parkway neuroscience and spine institute in hagerstown so I have some faith in him.. just not the surgery itself. He said he will also do duraplasty with the decompression to eliminate the need for further surgeries..
Well, I decided To go ahead and go through with the surgery.. and so far feel great! I hope I dont end up having to do it again though!
The Dr. ended up doing the craniectomy, duraplasty, and laminectomy. It apparently was worse than expected, and he said my CSF flow was like a straw with a paper ball in it. He was very glad I did it instead of doing the watch and wait to see if things got worse. He did say, it'll take about a year to get back to "normal" ( like any of us know what that is!)
Thank you so much for the support, and the warnings. My family did finally come around after I gave them a print out on the condition, and saw why i choose to go ahead with surgery. Fingers crossed things stay on the up side!
I hope all is well on your end :)
Beeba said:
To be honest you sound on the fence. He sounds knowledgable and you feel comfortable. But I am aware of the size of Hagerstown and know it is a fairly isolated community. "Some faith" is not something that makes me want to say "go for it" can you possibly delay the surgery and take advantage of the huge resources you have in driving distance? If you are not debilitated - not saying wait until then - but if an extra couple weeks won't make or brake you can you please get a second opinion. You have described to your friends and coworkers your physical condition. IE - my brain is out of my skull - of course that sounds like something you should fix. But your family seems to have reservations - and they are who take on the fall-out. Perhaps if you have other opinions from drs who are highly revered and they agree then they will be able to be more supportive. The last thing you want to do is go ahead with your plan and have any complications - and then have those around you feel the "I told you so' attitude. This is your brain,nervous system and all the muscles and nerves that run through your neck. If it was a foot - what the heck ... I had my gall bladder taken out in Berlin at Atlantic general (basically a stitches hospital) and it was the best operation I have had with the best outcome. But I want to reiterate this is so much more than a structural issue. Dr Henderson in Bethesda,dr Jallo at Hopkins and of course a world known dr weingart. It sounds like you are having more than the normal pre surgical jitters - and without family support - this can really make for a tough path. I went the easy convenient way the FIRST time. My husband had an ambulance ordered to take me to Hopkins and I turned it down - it is far,I was there, and they were going to get it over with. One year later I had my second. Please only do this once with the best support you can have. I have made mistakes in this process and that is my misfortune but if anything good can come of it - it will be stopping someone else from my mistake. I will support whatever decision you make and wish you only the best no matter what. But I won't be the one caring g for you,paying your bills or advocating if you have a problem. Please consider that.
My 8 year old son would tell you to only have the surgery if you can’t live with the pain…he’s had two surgeries and still lives in almost daily pain however, the pain before both surgeries was pain he could not live with, as opposed to the pain be has now that he has to