I have recently been diagnosed with Chiari Malformation Type 1. I have had the short, yet VERY intense headaches for a little over a year and a half now. In December 2009 I went for my first MRI and was told my Cerebellar Tonsils protrude into my spinal canal, I then googled what the MRI read and "chiari" popped up everywhere. I went to my first neurologist and he confirmed my "self-diagnosis" was Chiari and reccommended I be referred to Seattle to the University for surgery as well as go to therapy to help with my swallowing and speach and hearing and he also ordered another MRI on my neck, etc..
Currently, I live in Montana but I am from the south (Im in school in montana) My family is all in down south so we asked to be referred to someone closer to home, in Alabama, Tennessee, Mississippi, Georgia, Kentucky.. etc.. (for recovery convenience/being close to home) I have another appointment in one week with my doctor to talk about who he is going to refer me to.
In my mind, I plan to get a referral to a doctor in Birmingham, Alabama and hopefully get the surgery done this summer while I am out of school and close to home with my family. Now, I am just so nervous. I am only 22 years old and I have researched Chiari more than anything I have ever researched and I have read dozens of success stories, as well as the bad. I am scared of the pain I am going to endure after surgery. I understand that everyone is different and the surgery will fix the most pain of all and that is the headaches, but im just nervous! I know its common, but I feel like I have so many questions I dont know where to begin...
How is it after surgery? How long is recovery? I know it takes a full year, but how will i be the day after surgery? 2 days after? 3 days? 4..5...10...20 days after? Do they give you pain medication BEFORE surgery? after? even with my age? I have long hair.. i understand they will have to shave some of it off... how is that? can I wear extensions/wig afterwards? driving? Will I be able to fly back to montana for school in August if my surgery is in June or July? Does anyone know of a good doctor to reccommend in Birmingham, alabama or anywhere else below the Mason Dixon line?! Is the surgery expensive? (not that it's a problem just curious!) What about smoking afterwards? Marijuana use? (I randomly, legally use marijuana for pain)
anything else you think I should know?
everybody is different and how one person's surgery goes may not be how yours go. i think the anticipation/suspense of the surgery date is kinda rough. afterwards, alot of pain and stiffness in the neck. you'll be in a neck brace for a while. hopefully, you will have a pain medication that will agree with you (some just tear my stomach up)
i wore my hair in a high ponytail (kinda piled it on top of my head, this is also useful after surgery, at home) when i went into surgery and they just shaved the underneath. my hair is thick enough, you can't even tell any hair is missing. they handed me my hair in a ziploc bag when i was released...(what was i supposed to do with it? glue it back on?)
you'll probably spend at least 3 days in the hospital. you won't be doing very much afterwards. just resting and TRYING to get comfortable so you CAN rest. i had almost immediate results from the surgery on some of my symptoms. i can now walk a straight line! (yay!) no more tingling and numbness in my hands and arms and feet. i still have horrible headaches though : / and horrible nausea and double vision. but it has only been 6 months since i have had my surgery. i have been told it may take time for the rest of the symptoms to go away, if they even will.
You are right it is scary but from what you have posted it looks like you are in good hands with the NL you have...it is a rare find to have one that understands Chiari.
Like you mentioned, it is different for everyone and a lot of the recovery after surgery depends on how far your symptoms progressed and how much damage has been done. That said, I can only tell you my experience. My symptoms had progressed very rapidly b4 anyone figured out what was wrong with me so when surgery was recommended I had already had a lot of damage especially to my gait.
They didn't give me any pain meds b4 surgery but they put you completely out so you don't really need to worry too much about that. When you come to, they will have already fed pain med through your IV so if you are one of the lucky ones and are not allergic to it like me..you won't feel too much pain right away. The only way that age matters with pain meds is the dosage and being 22 that shouldn't affect it in any way. For me the first two nights were really rough but that was largely due to my drug allergies and not having good pain management with the meds. I found that I needed help to do most daily activities (cooking, cleaning, taking care of the kids..) for the first two weeks. It took about 2 months to really feel like I was coming out of the surgery effects but I still had setbacks here and there, usually when I did too much. Now I am 4 months post op, definitely over the surgery pain but I am still dealing with several issues related to nerve damage from Chiari. Which reminds me...I hope that you NL or NS (not sure who you've seen) has let you know that they hope for improvement with surgery but it is not a guarantee...but it is a good way to stop the progression so things don't get any worse. I did see improvement in my gait almost right away but I am still struggling with the other issues. I started driving short distances around 3-4 weeks post op, once I could turn my neck....I still due that now but mainly due to my other symptoms.
As for the hair, my NS just flipped all my hair up and shaved a small patch near the base of my neck...with my hair down, you can't even tell I had surgery!! So I really don't think you will need to worry about extensions or wigs since you have such long hair to cover it! I can't give you an answer on flying b/c I haven't done it yet, I am planning to in the fall though and it is a question I am going to ask my NS at my post op appt.
I am from Canada so I can't comment on good DR's or surgery costs, I will however bump up the specialist thread for you....it is a list compiled by other ppl with Chiari of drs that they have had and liked. Still, you need to check out the dr's for yourself to make sure they are right for you.
Again, I don't smoke either thing :) not in a long time anyway...so I can't comment..
When you do see a NS make sure that you write down the questions you have asked here and make sure that you get the answers. Being nervous is a very normal response, this is a big thing!! It was the best thing I could have ever done for myself and for the reward it was worth it!!
Take care and good luck,
Thanks yall so much for replying.. scnhollins thanks for the pony tail advice :) I know my hair shouldnt really be a question considering the other problems im having and facing surgery, but it is a question.. my hair is really long and the thought of getting it shaved scared me to death but now ive heard its usually not the whole head and can't be seen so thats comforting.. hopefuly they'll do something with my hair though... i dont really have a need for it if its not attached to my head! ha!
and cmoeller thank you for all your answers.. I go to school out west and live down south and I have my cat and rent and bike and everything in montana so im just leaving it all here and going home not knowing when i'll be back to get my things, if i need to sign up for summer school or if i need to pack up and move out and all of this worrying about the things here and not knowingwhen my next referal appt is, etc is just all stressing me out and making the anticipation worse! your right! But as for now im just leaving everything in God's hands and hopefully things wil work out. Its just so nerve-racking.
I dont necessarly WANT surgery, but reading the success stories and seeing how surgery really helps others has also thrown another worry into my head... I have a weird feeling that the next dr i see will say that i do not need the sugery, yet anyhow. Then I'll be thrown for a loop and need ANOTHER opinion... But again, i shouldnt wory about that now!
I;m goin to look up the referral thread.. that didnt even cross my mind.. thanks for pointing that out!
Thanks again for yalls input, it means alot.. i know everyone is here for chiari and the answers to most of my questions are probably right infront of me but I just wanted someone to reply directly to me and hear my part so thanks alot , i really appreaciate it and good luck to both of you xx
HI and welcome...I did reply to ur other thread....and wanted to add many of us have posted pics from our surgery and journals in our profile page....mine is open if u want to view it...click on my name and that will link u to my info.
And both posters ahead of me told u the answers...everyone is different and that is so true, 2 people can have surgery the same day by the same surgeon and have different outcomes.
The one thing that u will hear that differs from one dr and chiarian to the next is recovery time.....do not over do b4 or after surgery as it will affect how u feel.....no one not even the dr can say how long it will take u to feel better or when some activities r ok for u to do again. Listen to ur body.
Hi! I had my surgery last August (2009) at 32 years old. The surgery took 5 hours. I woke up in an extreme amount of pain, but it was controlled within an hour of being in ICU. I was in the hospital for 7 days following the surgery, but that was mainly due to my intolerance to many of the pain meds I got. The pain of the incision lasts for a couple months, you have to be very gentle washing, combing your hair. As far as my hair, it is long and thick too, and my doctor just parted it down the middle and did not shave any of it. I was shocked by that, but also happy to not have a huge chunk of hair gone. It is almost a year later and after the initial recovery period (prob about a month) I have been free of my headaches and neck pain. I can look up at the stars without getting dizzy, I can cough without terrible pain in my head.... its better now. But it wasnt an easy road. Hopefully since you are young you will bounce back quickly. Just make sure you trust your doctors and I would def advise staying close to home, you will need help!!!! And just being around family helps! BEST OF LUCK!!
You just answered SO many of MY questions. I just found out last week that I have Chiari Malformation type 1, and a rather large Syrinx on my spinal cord. (Possibly coming from the Chiari) I am very shook up by this, and I have so many questions, with so little answers right now. But you mentioned alot of my concerns, as far as "how much hair will they shave" (I really don't want to sound vain, just curious) and how much pain. I had rotator cuff surgery in April for numbness in my right arm, it's December and still having problems, my ortho dr said "I fixed you.. your fixed" end of discussion. I went for a 2nd oppinion and he ordered an MRI of my cervix and that's when they found the Syrinx and Chiari Malformation. I'm still in shock of coarse, I always thaught that my ears were the cause of my "clumsiness" and hearing loss. I always joked..Please do a breatholizer, but DON'T ask me to walk a straight line! (: I just wanted to say Thank you for your info.
Dont be shocked...i know it is hard,be glad u found the reason and can get it treated before u get other damage.the operation sounds rough.but honestly it is uncomfortable,but i really imagined it worse.u get over it...i am 2months post op now,my neck is quite fine and i hardly have pain from the scar anymore.but get a specialist.they did not shave anything on my head,thats great...but that depends on the ns...ask before...and maybe u ll find someone only shaving a stripe...and dont google things beforehands...it does not make sense...find a good ns and trust him
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