For several years I have had HA and have gone to numerous doctors for various conditions. Last year I had my tonsils and adnoids removed and deviated septum to try to help with my sleep apnea and it didnt help so they refered me to a neurologist and they had me do an MRI and it showed that I had chiari malformation I. So now Imgoing to Dr Menezes in Iowa City. Its like every day ice packs on the head to calm the HA. But the last couple of days it seems better. My herniation is 13 mm and when it gets real bad the only thing that will ease it is to go to bed. My wife says I should but Im just nervous about the surgery. Thanks for any help.
Well u do have a chiari expert, and if he feels surgery will help u, then that is who u should be listening to.
As for being scared, we all know about that, I had surgery, it will be 3 yrs ago in May....yes, I was scared I wanted to jump up off the gurney and go home...but, I also thought about all that got me to that point.
The fact u r feeling a bit better right now, could be the fact chiari symptoms cycle.....so right now u r not in a flare, but just try doing something and u will be reminded of what u can not do without pain.
Many of us do have our experience of our surgery in a journal, just click on our name to go to our profile page and feel free to read mine,.
We do have a Health Page with tips for the hospital stay and neway we can offer u help and support at this time let us know : )
I can't tell you if surgery is right for you but I am 2 months post op and it was absolutely right for me. I was s cared and if I had a do over I would without hesitation. That being said I went to one of the top chiari specialists n the country and had very thorough testing prior and I did have a csf blockage.
hi there and welcome to the forum. Nobody can to tell you what is best for you. That decision is up to you and your DR and what you both feel is best for you individually. The surgery is not a cure, as there is none, but is used to stop the progression and in the process hopefully relieve some symptoms by decompressing nerves and the brainstem. Do you know if you have a synrix? Tethered cord? is your csf flow blocked or diminished? Do you have any of the related conditions like Ehlers Danlos? DDD? These are imporatant to know as they will effect the way you heal and feel before and after surgery if you so choose. I am pre-op so I personally cannot speak about the surgery. I have a surgery consult on the 25th. I do plan to have the surgery and I am very frightened, however....I do not want permanent damage to occur, and would like stop it from progressing anymore. Last year mine was 12mm. and this year it more than 2 cm or (22mm) . I have went downhill in the last 6 months and I can no longer take care of myself and my children without help. So, I feel I have no choice in the matter. Best of luck to you, and do make sure that you be seen by a true Chiari specialist.
Thanks for all the comments. I am new to this and just get nevous somtimes. I go back to see Dr Menezes May 9th and that day I also have to get 2 MRIs and a CT. He should be able to tell me more that day i quess. But Im just tired of all the HAs, neck pain, numbness all over. My Dr also said I have bone spurs so i wil have to have another surgery after the chiari is taken care of. But thanks again for the comments.
Remember this is your health and your body. Your family can most def help you decide if you have the surgery, but at the end it is up to you. Its not an easy decision to make but it helps when your ns reccomends it if needed now. You take your time. Its alot to handle. What do you feel you should do is the question? Good luck and please keep us updated.
We all know what u r feeling, and understand...and u and ur Dr r the only ones they can decide if and when surgery is right for u.This is a major surgery and some do have adverse affects from it, the meds or develop a new issue as a result and there is no way to know b4....this is y it is best to have all these tests done now, and I know u do not like feeling as u do, but some can feel worse post op...and not everyone feels completely better after this surgery either....
Chiari is life altering and we do need to learn patience...and I am adding acceptance too.
Do let us know what Dr Menezes tells u on the 9th of May....as I said I did hear him speak and found him informative and enjoyable....
In the meantime...do not do things that may trigger ur symptoms to flare...try and relax too, as stress will make ur symptoms worse.
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