Help wanted please.

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Hi

i have recently been diagnosed with chiari and had my MRI.  I've been having symptoms for 2 years now my eyes have started to do that weird movement and so I've had to stop driving, amongst other symptoms... I feel like my life's on hold.. I just wanted to know if how long it has took for most people to get the treatment they needed and if anyone has had the symptoms stop after treatment... I want my life back 😢 I'm feeling down about it all now. 

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  • Posted

    Get to a neurosurgeon and schedule decompression surgery. Sometimes it takes people a long time to get treatment because doctors don't refer them to surgery. They go around and around and prescribe drugs. Bottom line: if you have an MRI showing Chiari, it is not fixable with drugs. It is not fixable unless you have your skull opened up and make more room for the cerebellum. If your cerebellum is being squished and pushed through the foramen magnum, it will not get better. It may stay that way for awhile. Eventually it may get worse. But it will not get better without being decompressed- making more room. So it will continue to push against the brain stem and that causes your symptoms. 

    If your neurosurgeon doesn't recommend surgery, get a second opinion.

     

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    • Posted

      Hi I'm under a neurosurgeon now just wanted to know how long it has took people to get through all this don't wanna be waiting for months or years to get it sorted! 

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    • Posted

      I found out 3 months ago then debated for a month whether or not to do surgery. I finally decided to do it. So within 6 weeks I had a surgery date scheduled. I had surgery Tuesday. I was back home Thursday. I'm nit going to lie it hurls but they gave me more than enough pain meds to help with that. Hope all goes well for you!

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    • Posted

      I got diagnosed & saw first NS 12- 4. Surgery June 2nd- about 6 months. Surgery is the only treatment to prevent symptoms getting worse- you may still have some symptoms due to damage that has already occurred. It can take 1-2 months to get in to see a NS. If you live in a city, you will have more choices.

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    • Posted

      My surgery took 5 hours. They cut out a piece of bone in the back of my skull and part of C1 vertebrae. They cauterized my tonsils so they shrunk back up into my skull. And put a dura patch on top of the opening. After the surgery they said my CSF flow was fantastic and there was fluid around the cerebellum.  

      Worst problem post surgery was nausea/vomiting from the medication. Had to take lots of nausea meds.  Best thing was having perfect eyesight immediately!!!  Had to learn to walk with a walker. Kept sitting up in the bed and my bed alarm would go off. Had swelling on my lip from lying on an endotracheal tube while lying on my stomach with my head through a hole. So had to get lots of chapstick. Takes a few days for you to get over the sore throat. It's great to be able to take a shower after a few days!! They don't release you until you are off the IV meds and able to pee and move around. 

      Favorite thing in the hospital was Chocolate Cake on my last day. Went home after 4 1/2 days. Since my surgery, it took a week and lots of nausea meds to be able to eat much. Then had to get back to walking and strengthening muscles. By week 3,  I was back to working on paintings. By week 4, I was on a flight to Colorado for a wedding. Now it took me awhile to get around the airport, but I could see 20/20 again, didn't have the dizzy/balance issues and most of all no more Zomble Head. I did have some dizzy/balance in about 2 1/2 months which may have been due to other issues, like sleep apnea, which they pointed out to me after surgery and it is totally connected to the Chiari. Anyway, I am now 6 months post surgery and apart from other issues, my head is doing pretty well!!!   

      It is different for everybody. But I think from what I have read from other people and studied, you won't get any better without making more room for your cerebellum. So hopefully this helps a little with your decision. 

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  • Posted

    Hi Helen. Some Chiari patients take years to get a diagnosis, let alone be under the care of a NS, so try and be positive in the whirlwind world of Chiari. You are doing well to be under a specialist. However, it is imperative your NS specialises in Chiari, if not, ask to be referred to one that it is.

    If your NS has suggested you have Chiari decompression surgery, the time it will take to do the op will very much depend on their waiting list. You will need full brain & spine MRI and a pre-op assessment carried out first. This can take time.

    The important thing is you understand the surgery is not a cure. It can, however help prevent symptoms from worsening, help reduce any syrinx (if one is present). Mostly, it helps with the posterior headaches.

    Here if I can help in any other way. 

    (I was diagnosed 8 years ago, fobbed off for years as symptoms worsened, had decompression surgery last year. Doing well, not cured, but learning to live with a neuro condition) happy to help & support you if I can.  

    Be positive, x

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    • Posted

      Thank you..... Did you have involuntary eye movement?? If so has it resolved? It sounds only a small thing but that's the main thing I can't cope with... I can live with headaches and the fatigue. 😢

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    • Posted

      Not a small thing at all, our eyes play a huge part in how we feel. Gosh my symptoms list is endless 😬but it started with headaches, and severe pain behind eyes & balance problems -this was 8 years ago.

      The pain behind my eyes was unbearable some days, couldn't drive etc, but as the years went on, for me personally, my symptoms got much worse, the time in between flare ups shortened and the symptomatic periods lasted longer.

      My GP said I still have nystagmus? But, it is not all the time & only with movement, especially sudden ones. How about you!

      I am not symptom free by any stretch, but I know the surgery was definitely needed, I also had part of c1 & c2 removed, my CSF flow is really good now, but I do have good & bad days. Got to take the rough with the smooth! 

      Have you seen your optician recently? Really important to have regular check ups & explain your diagnosis. Have your eye pressure tested too. 

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    • Posted

      Went opticians last year I have full vision. Just hoping that if I can have surgery I can have some sort of normality in my life.. Thank you sorry I am ranting xx
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    • Posted

      No Hun, your not ranting at all. I would go again, before Christmas if you can. Really important they keep checking your eyes. My NS recommended I go regularly, especially if your eyes are troubling you. It is amazing the tests they can do and reassuring if the optician is happy! When are you back at the NS? Are you booked in for surgery then? Just waiting on a date
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    • Posted

      Just waiting on an appointment for the NS again...I'm thinking of ringing the NS secutery and getting it sorted for that way 

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  • Posted

    Hi there,

    I was like you and up to 6 months ago, I could not walk became a house bound. I have to resign from work, but after surgery 6 months ago, I have my life back, you can have yourlife back, ust afgter surgery do not rush - I am still not going back to work now, I am recovery but slowly - I will be seen again by my NS in March 17, I am drug and pain free - SO THERE IS HOPE ....just be positive - listen to your body  lat but not least ask your heavenly father through his begotten son to help healing you either its through the right NS or the right medication , but I understand with CM...the only thing that can help you is surgery _ GOD LUCK-BUT DO NOT WORRY - life will ge better

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    • Posted

      Thank you... I am trying to think positive as I have my children to think of...I just hope all will go back to normal when I get it sorted 
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    • Posted

      I promise you Helen, i my opinion you should get decompression as soon as possible, prolong of utilising medicine and delay the surgery will made it worst, its happen to me, I even kept thinking to myself and brought in my prayed thata I wanted GOD to take my life away because I was suffering that but, if you love your family..then do not delay - its seems that you have what I had expereinces.. BELIEVE ME..I am back to 99% normal now - I don't do any cardio exercise anymore, I just do yoga each morning -  Please ..get some help to go through your health care professional - print out some information - showed it to them..express how you feel ''ASSERTIVELY'' doctors have no time and a bit dubious about this condition, so if you get involve and take charge of your health, they will appreciate that...

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  • Posted

    Hi! Try to keep your chin up, I know, it's bloody hard, but try.

    I had symptoms for 5 years, they started to really bother me during last two years.

    The first time I sought medical help because of CM symptoms was in July of 2014.

    Five neurologists, numerous appointments and 3 hospitalisations later, in September of 2016, I was diagnosed.

    During those 2 years tried a lot of different medication from painkillers to antidepressants. Nothing helped.

    Had surgery in October 2016. 

    I'm 7 weeks post-op now, feeling great. Headaches and the rest of my symptoms are gone. 

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    • Posted

      Hi Madara, you just recovery so do not be too confidnet and feel you are going to normal life now, TAKE IT EASY!!!! that is the issue with chiarian, they feel better a bit, then they start to do running, jogging, hovering, shopping..and no wonder they have the symptomps again and had to have another decompression, so take your time, be kind to yourself...but small walk, magnesium, MSM supplement is great...
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