DOES ANY ONE HAVE A SUCCESS STORY TO SHARE

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Hi there,

I am chiarian and waiting for my surgery...I read this story..seems that majority of this members although they are having surgery but they still having symptom ...is there any of you..that have symptom free at all or what you call it..SUCCESS STORY?? can you please share with us..or even you have your life back after decompression surgery..I really would like to hear from any of you...thank you in advance..

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  • Posted

    HI there!

    so i had a laminectomy and decompression back in december. I had about 5 months of freedom after the month recovery from the incision. The surgery itself went really well. cerebral spinal fluid is flowing well. they dont suspect i will need surgery in the future. I am happy i had the surgery. I am happy i had such a great recovery.

    For 5 months i was headache free and i felt amazing and that was wonderful since my wedding was in that time period.

    i was so thankful for that time.

    I have headaches again, not the same as previous but jut as strong. I am learning how to deal with them.

    BUT my success, is being thankful for the time i had without headaches and making the best of it. I felt the closest to normal i had ever been and it was amazing.

    I want to wish you good luck with your surgery and i hope it gives you some relief, no matter how long it may be for. it sure is worth it.

    let us know how it goes. God bless and speedy recovery!

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    • Posted

      Thank you for your advice, i am sorry 6hat you are having symtom again, are you going to have another operation if that was significant in chnaging your quality of life?
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    • Posted

      Hi there,

      17 months after surgery, I am fine setting up my own business to help others like us...providing body massage, reiki and reflexology...how are you

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  • Posted

    Hey....

    I had Chiari decompression surgery in May. I am doing well....I am 2 months symptom free & SO grateful that I was able to have the surgery.

    I will be honest that the recovery is tough. Give yourself at least 3 months of feeling like sh*t! Keep up your fluid intake, it will help with the headaches. If you want any advice or support, please do pm me, I would be more than happy to give you some support. Remember, you are brave & remember how lucky we are that such incredible surgery can be performed. Positive attitude is key to recovery.

    The successful ones often don't post as they are recovering well & getting on with life, not everyone is as fortunate, the surgery is not a cure, but is aimed at preventing symptoms from getting worse & hopefully will stop the headaches.

    I wish you all the luck with your op...

    Hails x

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    • Posted

      Dear Hayleybell, Thank you for your prompt response, I am glad to hear it, just curious though, are you drug free as well?, do you still under your neurologist/neuro surgeon? are you going back for more check up?, when you said the recovery is the tough one..what do you mean by that?, I was quite worry when I read s ome of the story from the other support group majority of them still have the symptom, and also some of them have 2 or 3 times operation.few of them getting worse...ashame the one who ar successful would not share their success stories with us hence that will help other people who are suffering so for you sharing your exerience will encourage people like myself who previously terrify of undergo oepration...so who is your surgeon,,you are the lucky one..count your blessing..how long you had to wait after you were diagnosed?, do you have to be careful now in doing any exercise or activity..can you go back to work?, did you stop working?..I am really please for you..I will keep you informed of what is happening with me..but my local surgeon has referred me to other..but he is too busy I have to wait God knows for how long..in the mean time I feel my condition is not getting better..I just keep praying hopefully there is cancellation somehow..
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    • Posted

      I was diagnosed about 7 years ago, was a "wait & see" case as I had no syringomyelia. (went from a 5mm to 9mm herniation within the 7years)

      My neurologist blamed all my symptoms on migraine, tension headaches & stress.

      As the years went on my symptoms got worse & worse. Neurologist wouldn't offer much help.

      I did a whole lot of research as your symptoms must affect your quality of life significantly enough to warrant such major brain & spine surgery.

      I found n amazing neurosurgeon at The Walton Centre in Liverpool that my gp happily referred me to. I didn't have to wait long, from 1st appointment to surgery was only 4 months. 

      Regarding recovery....of course it is going to be painful.....where they cut in, it goes through your sickness senses, I was very, very sick for about 4 weeks, the brain has to adjust to new pressure so moving around was tricky- very wobbly. I was in hospital for a week. In bed at home for 3 weeks. Then gentle gentle with lots of rest. The trick is not to over do it. Not to carry anything heavy etc. Even though it will hurt, you must do your neck exercises & be positive. 

      There were 3 ladies on my ward having Chiari surgery, we all had a very different story to tell & have all recovered differently.

      i was on a lot of pain relief for 3 months, but as time went on after surgery of course it reduced. High weather pressure made me feel worse, drink lots of water! Be sure you have laxatives as your pain relief will give you constipation, take it from me, not what you want!

      Are you having duraplasty? (A patch sewn into dura)

      I didn't, my dura was opened, but left to heal on its own, hence my minor leak, which is normal and resolved by itself.

      I am pain free & on no meds & very very pleased. I was on tablets to protect my tummy too from the ibuprofen, which did cause damage anyway to the lining of my tummy, that has now healed too.

      I am a mum to 3 kids, the op was hard for them too, I can play more games with them now than before the op. I still have trouble looking up for a long time when my neck is over stretched (eg looking up at the stars), but maybe that is because I have no cervical 1 and half a cervical 2, but I feel a whole lot better and I am reassured by that.

      I have regular check ups with my neuro nurse.

      Hope that answers everything & offers you some reassurance. The success of the surgery depends on so many different things, I know it can be so very scary. If I can offer you any more support, please just ask.

       

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    • Posted

      Hi

      I have been diagnosed with Cerebellar tonsil ectopia and am really suffering. I have an MRI next week and CSF flow study but not doctor. Who did you see at the Walton centre.

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    • Posted

      I just read your post. I'm glad to hear your surgery was a sucess. I am so afraid of the surgery. Although, I had my bran anyersm clipped. The doctor thought that wold help the migraines. It did! But, I still need the other surgery. God bless you# I wish you continued good health! ?

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    • Posted

       Hi Hayley,

      I'm 25 years old from Australia, its so great to be able to read success stories and also be able to have a chat to some one about it. 

      Unfortunately I was diagnosed with Chiari Malformation about 6 months. Since then I have gone in once for the op, but unfortunately was so scared with the procedure I called it off. I am scheduled in to go back in the coming weeks. As my symptoms are extreme headaches I need to get this done. Do you mind sending me a PM to have a chat just want to ask some questions about you're surgery. 

      Thanks so much

      KC 

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      Dear Kasey,

      I just read your post, please not to worry to much as it make you stress..I think you have done the right decision by putting back your surgery. In my opinion, I wished I had done it the soonest they advice me to do it..but after unable to cope I had done it, and that is the best thing I have made decision.

      I am drug and pain free and get my life back.

      If I were you, I make sure the NS experience, prepare for it, once you have done it, take it easy at least 4 - 5 months instead of rushing to go back to work..ending up going back again for second operation.

      Good Luck

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    • Posted

      Thanks so much for getting back to me, I was starting to honk no one uses this page anymore. I am due in 3 weeks to go back in for my op. Everyone is telling me not to worry, yes it's hard not too. But I am so scared about not waking up, I'm scared if I do wake up how much pain will I be in? 

      I have read so many unsuccessful stories ( whatI wish I never did) where they are now worse off. I just don't want that to happen. They tell me they do about 1 every month down here. (Tho that dose not make me feel any better) I just want to know the pain you are in when you wake up? Knowing they are going into my head freaks me out. They are talking about giving me some medication to relax me a few hours before I go in for my op,  did you have anything like that? 

      Thanks so much for you're response I'll look forward to hearing back from you. 

      Thanks

      KC

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    • Posted

      Dear Kasey,

      I am unsure who is your consultant, did you check with Ann Conroy Trust??, the specialist dealing with Cm normally registered there..once a month that is good..to be honest Kasey, I had a night mare prior opt. one minute when I woke up from decompression - all my horrendous headache disappear...but I have morphine/steroid so many more pain killer after waking up..because the first 1 month was hell for me..it was unbelievable (the pain) but I am glad..because I know the pain i felt was the pain from cutting my skull not these dizziness, imbalance, headache, fain, blacking out..pressure..after 2 months..I started to enjoy my life, and now 13 months post operation, I am able to walk 2 miles..drug and pain free..but I have back pain due too much lumber puncture.

      Look, the most important thing is..you have made the right decision..you do not want to leave it too late as me..as you are damaging your nerv..(like my back)..so..my advice would be take it easy even after operation when you feel better, wait at least 3 - 4 months before you do your normal daily life....other wise you ending up bad again..it does not matter what every told you..just listen to your body and your health care professional...bring lots of cordial, water, dont worry about pyjamas, just use hospital gown they are more comfortable...have massage or reflexology after (bad no - HEAD MASSAGE) AND KEEP MOVING GENTLY.....

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    • Posted

      oH.. yes< PRIO AND AFTER OPERATION THEY WILL LOOK AFTER YOU, YOU WILL NOT FEEL A THING...BUT GET THEM PRESCRIBE YOU ANY PAIN KILLER ..YOU CAN HAVE STEROID, MORPHINE ETC...I AM SURE YOU WILL BE OK..DONT WORRY, THINK POSITIVE..YOU ARE AT THE RIGHT HAND..WHO IS YOUR NEUROSURGEON? WHERE?

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    • Posted

      Hi, 

      Thanks so much for all that information.

      I will be having my surgery done in Tasmania (Australia) dr Tahn he will be preforming the surgery. He says he usually does 1 a month and all the recoverys have been good. I'm just so scared of getting out to sleep knowing they are going to be in my head. I am a manager of a clothing store so I have taken 2 months of work. Do you think that is enough time? Or too much? 

      How long until you feel like normal again and do the things in every day life? They said I will be in hospital for around a week, do you think that is long enough? I know I have the support and car of family /partner around me. But I would hate for something to happen post op. 

      I guess what I am most worried about is going to sleep and not knowing how I am going to be when I wake up. It's so god damn scary I wish I didn't have to do it! 

      They measured how far it has grown and they said anything more then 5mm is abnormal mine is currently at 28. 

      Side affects is having head aces every day, strain,laughing/ coffing that all sets it off. 

      Thank you so much for taking the time to chat to me and answer all my questions, it makes me feel a lot better :-) 

      Thanks

      KC

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    • Posted

      Dear Kasey..woooowwww 28mm??..how do you cope with that for so long???, mine was 7 mm, I was debilatated..look your surgeon seems confident , so he must has lots of experiences with surgery. Generally speaking the operation last 1 -1.50 hours, then you will be kept at the observation area for 3 - 4 hours (depending how you are coping with G.A.) then they took you to a single room treatment for another extra care for 2 - 3 days, then if your hospital busy , you will be put to a general area where you mix with others who similar neuro issue in one room (In the uK - this will be around 4 in one room or 6 in one room), majority of them going home on the 7th - 8th days, and you will feel like hell for the first 2 - 3 weeks but keep getting pain killer..but then its getting better each week - my NS who is specialist in this case  warned me not to be like others (they feel better after 2 months) and start doing the daily routine: hoovering; carry heavy shopping stuff, juggling their work with family..then they ended up having 2nd-3rd or 7th operation. They said that their body telling them how they feel, how would they if they are on medication..the drugs control the pain, the symptom etc...I  gone off drugs because I really would like my body told me (without the help of the drugs: morphine, cocodamol, tramadol, etc..etc) ..it took me around 3.5 months when I started to pick my self..I realised i could not ever go back to my old type of job (Medical Executive Field Sales for Pharmaceutical company) because the job is long hour then need to carry lots of heavy things plus travels a lot..so I resign for my role, I used to feel pain on my back, leg not headache like that..but mostly feeling aching on my body..it is my own fault..I left it too long to accept the surgery..if only I took my neurologist advise straight away..it will not damage my nerve ...so I done lots of deep tissue massage and reflexoly therapy..I got better each day..now I have my quality lif back..and thank you for the surgery and the alternative therapy such as massage, reiiki, reflexology..plus I tak lots of supplements that contain high antioxidant as well as eating the right stuff (Kale, Brocolli, Moca,vits) so I am setting up my own business now , providing alternative therapy to people like as ; Deep tissue massage, Reiki, Reflexology..,..but you are doing the wright step..SURGERY first..do not comeback to work after 2 months, get another extension near the time like: another month or a month and a half, beleive me..it is worth it to let your body settle , let your brain in normal function..the surgery itself..its a big thing..do not listen to any one but your gut and instinct, if I were you..I will go back to wokr much later then 2 - 3 months.... but you will have your life back - GOOD LUCK
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    • Posted

      Hey there,

      Sorry for the long delay in a reply, but I have undergone my surgery. I am now 2.5 weeks post op.  I was in hospital for 8 days had a few minor issues. 

      Tho I do have a question, and I am not sure if you can relate at all (as every one recovers differently) but one side of my head it quiet sore still, not where the op was but on the side of my head like it hurts to touch,  kids like it feeling numb also? Did you have this as well? My follow up appt is not for Another month, and unfortunately my GP was unsure if that’s normal for after that kind of op. To be honest I feel like I’m just panicking over that, and eveything is fine. 

      Still on some heavy pain killers for pain but I will slowly come of them soon I reckon. 

      Again I just want to thank you, for being able to chat with you! Talking to someone that has been threw it is amazing. Everything you said about the surgery was pretty much on point. 

      Thanks

      KC 

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    • Posted

      Hi dear, I am glad you come off that surgery..but don't you feel great that you have done it?, I know its too early yet, but if you think of a balloon with water you normally have pressure on the other part due to a blockage..so your left one  its seems flowing freely and got ore water then the right one, suddenly after so many months/years the blockage being removed from the right one..then now water flowing exactly the same from both side, the left one now getting lesser..hence you feel a bit like that..I don't know how to describe it even clearer, but don't worry after 2 months you will feel much better and normality..don't forget you just have a traumatic surgery..what you expect??..ha..ha..we are not super human, but please take it easy even if you already feel better..I have done it..following my NS advice..I m now OK, I will start my own business providing alternative therapy like health massage and reflexology..because that was helped me a lot combine with the medication and support from my Health Care Team, it would be ideal to give a feed back to your Neurologist and NeuroSurgeon how you are getting on..they will appreciate that very - very much, as they would like to know more and mostly from the patient that being treated by them, I still giving my NS and Neurologist my feed back..they really  appreciate my feed back. If  have you a friend who has got a vine leaf..get some..boil it and have it as vegetables, its good for our brain and I recover so quick with that...because they contain resveratrol food which is good for our body. 

      DONT MOVE TOO QUICKLY....take your time..drink plenty of fluids..walk each day gently then increase it each week...write it down every single pain you feel, so when you see your surgeon, you tell him every thing....Good ..to hear from you..

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    • Posted

      Hi Hayleybell, my name is Isabella , and I was just diagnosed with Chiari in June of this year . I started getting symptoms of it in april and since then its been ongoing . Iv’e recently met my surgeon at the beginning of october and am going back in 2 months for a second MRI and meeting with him .  Did you wait as long between appointments as well ? The surgeon was very nice and hes the best for Chiari in Canada , I guess Im just worried because mu symptoms really hurt and sometimes Im not sure how to deal with them . Also, not very many people have Chiari so I always feel alone in my pain and dont know how to explain how bad it is to my surrounding.  Now I know your not a doctor and you cant answer me but Im just wondering if maybe I could compare symptoms with you and see that Im not crazy lol . I just found this group today , and it feels good to see Im not alone . Thanks in advance xx 

      Isabella

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    • Posted

      Hey,

      Yes!!! I’m so happy I have had the surgery, :-) 

      3 and a half weeks post op and I am feeling much better. It feels great to finally have the weight of my surgery of my shoulder. 

      Look at you go! That sounds amazing what you are doing! Have you got your business up and running yet? Website etc: ? 

      Definitely having the surgery gives us a hole new outlook on life I feel. 

      I am writing too you at 12:30am “my time” I’m not sure what time zone your self is in. 

      But did you have trouble sleeping? I usually doze off about 3am and I’m up and out of bed by 6am / 7am at the latest. I can’t sleep not even tierd. (This was not a problem before surgery) just wondering if you exsperienced the same thing? 

      So good to hear from you

      Thanks

      KC :-) 

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    • Posted

      Yes..I am pleased to hear from you.but hey girl...take it easy ok?.... its normal //I am still doing it..wake up always too early..but I just lay down, listen to you tube..or just take a deep brath..ust lay there... I am seeing my web design next Friday..
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