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DOES ANY ONE HAVE A SUCCESS STORY TO SHARE

Posted , 16 users are following.

b2wc97455
b2wc97455

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..

0 likes, 62 replies

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  • jon98439
    jon98439 b2wc97455

    Posted

    Hi there

    I was diagnosed with Chari at 19 and had the decompression surgery and a second operation to have a shunt fitted as the Chari had reduced the flow of fluid to my brain. I am 26 now and the symptoms of migraines, balance, vision, speech, neck strian have mostly gone. However I have been fortunate enough to never have a headache since I still have some issues with balance, vision and some speech which if I am honest will never go away. But it is better than it was. I now live a normal life and work in a stock room lifting heavy boxses and things. I also acjlhiwved a psycholog degree and am currently on an msc.

    Advice I can give you us what my neurosurgeon said to me which is "time will only tell how the chiari has affected you".

    I still have double vision and the room moves/ tilts when looking through my eyes. I can walk but it is a little different from when I used walk before 19. I sometimes can say my words. I either mumble or it comes out as a 'word salad'. But overall I am living the best I can make out of life.

    I wish you all the best

    • b2wc97455
      b2wc97455 jon98439

      Posted

      Hi Jon, thank you for sharing with us, did you glad you had surgery?, are you drug free?, do you still seeing your specialist for check up?, I thought you are not allow to lift heavy stuff once you diagnose chiari?..anyway..if the headache gone..do you still feel dizziness?..your balance still affected by your condition?..so its never be the same?, do you drive.. do you think that you are partially disable? so your surgeon said its only time can tell..well i hope it will recovered completely..but thanks again for your information..I appreciate greatly
    • jon98439
      jon98439 b2wc97455

      Posted

      Hi b2wc97455

      Although at the time I didnt want to go through it I knew i had too. To get a chance of been better. As we all know on here you cant live life with those symptoms. So yeah 9 years later I am happy I went through two operations. I am also drug free and was fully discharged from the hospital couple or three years ago. Luckily the surgeons had never seen someone recover as well or as quickly as me. So I was very lucky.

      If i am honest chances are I won't recover anymore because my body doesn't need too if that makes sense. It's done all it can. Oh no not partially disabled or anything just some of the symptoms are still there very slightly I.e my balance lets say rate it as 10 (really bad) it is now down to a score of 1 (IT'S good). Vision is a little different though can still see and its not affecting my life too much.

      I don't drive but I nearly passed my test a few times. Stop learning due to lack of confidence. But going back to it end of this year. So yes it's not stopping me but might tell dvla.

      In regards to lifting I was told to lead a normal life. I used to box and could possibly go back to that if I wanted. Wright training, heavy lifting you name it i can do it. Heights I don't do though due to vision.

      Overall is was really lucky. Again like it has been said the operation is something that can help. How much it helps depends on your body and etc unfortunately.

      Fingers crossed and i fully wish you all the best and hope all goes well with your recovery.

      If you want to know anything else just say.

      All the best

      Jon

    • jon98439
      jon98439

      Posted

      Oh yes and the headaches well migraine I prefer to call them are gone. Haven't had a full blown one for ages. Do get bouts of lightheadness now and then. It's hard to tell if it's because of the Chari though if it is nust a normal thing everyone experinces.

      I have never suffered from low moods either and i have read that chiari can cause that. I was depressed at the time of my recovery but got over it. However about once or twice a year I'll be low in mood for a month or so.

      So again overall what happens faster depends of the operation and your recovery. Everyone is different. Listen to your surgeon, get some support and try to stay positive.

      All the best

      Jon

    • b2wc97455
      b2wc97455 jon98439

      Posted

      Hi Jon, Thank you for every message you have done for me, please do not discourage about your driving lesson, if I have to re-take exampt I don't think I pass (LOL) as I have such a bad habbit...so keep applying it..and just for that 45 minutes just be vry carefull follow that instruction..you will be ok..I still think you should not do any lifting..as you getting older and older your body have to be looked after..eventhough you are fit..hence the athlete can only do their role up to certain age..mostly with chiari condition..you might not see it but it is very vita organ it is the central of our system..so..I wish you luck in what every you are going to persue in the future..as for me..I just wait ..and I hope I would be the 80% of that success strory..I am positive of it..then I will set up a proper group in my area where I can provide education for our local health care professional to increase the level of awareness in this field so that they are able to help people like us... so I will update you how I am getting on..wish me luck
  • doreenP
    doreenP b2wc97455

    Posted

    100%!

    My son was diagnosed with Chiari type one when he was almost 4 yrs old. Terrible headache and arching of head when coughing, sneezing, etc. Surgery done by Dr Fred Epstein @Beth Israel, NYC. He did decompression and electrocoagulation of the tonsils which brought them into a near normal anatomic position. Wenter home after 4 days and back to daycare after 6 weeks. At follow with Dr Epstein, we were told to just go on with life as usual (except no neck adjustments as tips of first vertebra were removed). Dr. Even said he could play whatever sports he wanted, including karate or football. My son chose ice hockey from 8 yrs old till after his first year of college. (Stopped because PT job in career field was more appealing.) 10 years travel hockey, 4 yrs varsity HS. First year of checking had me a bit nervious, but I quickly became more concerned for the boys making contact with my son, than for my son. Lol.

    I actually only checking out this forum because he is in his senior year at a Maritime Academy and they reviewed his application for licensing in the Maritime industry, and rejected him because of the Chiari. He now needs a recent (12 month) neurology consult, and I was like 'what for?'

    He has not seen a neurologist since the surgery and is fine...

    I am so sorry to read when people are still having problems after surgery. I was not aware that still went on...I know Dr Fred Epstein was a forerunner as far as innovative procedures, and was, as far as I know, the only one doing the electrocoagulation at the time, as I think he invented it....He has since passed away and his records at the hospital are gone. I wish you well in your surgery. Make sure you have more than one consult, and feel comfortable with the surgeon and the procedure he says he will do. I took a chance on the new procedure but it has been the right decision for my son....

    Now off to find a neurologist that will see my son to clear him for a career at sea...

    To any needing surgery, stay positive, that is HUGE...

    Have never written on a forum like this so don't know exactly how it works but if I can be of help, I will....God Bless...

    • b2wc97455
      b2wc97455 doreenP

      Posted

      Dear Doreen,

      Your story helped me a lot..I am sure people who are scare like me will be more positive when reading this post...the problem is..if they are successful they are not writing it and sharing it..and this condition is really such a terrififying for all of us...so appreciated..I hope your son will find the best specialist who are able to provide a great statement for him. Go Luck

    • doreenP
      doreenP b2wc97455

      Posted

      Unfortunately, you are probably right. Those whose surgery is a success probably don't write about it because it is just part of their 'past'....I am guilty of that too, so forgive me...it's days like this that I have to stop and thank God for what He has gotten us through. It was a short period in our lives...he started with the pain as allergy season began in May/June, first assumption was migraines, as I has a severe history of them and family history. Pediatrician said 'give it 6 months and let's see', after 2 more weeks of watching my son, I said NO! One neurologist, one MRI, an appt with Neurosurgeon, then a second opinion (always 2nd opinion before surgery, especially Brain surgery on my baby) and that's when I met Dr Epstein. Surgery was beginning of November and 6 weeks later he was back in daycare....and basically that was it, except for my 'mommy fears'...a total of 8 months or so out of our lives....other than the scar on his neck....

      Of course those that are having problems are the ones still out there giving their story, hoping for answers...and the success stories stay silent....

      All Dr's involved said surgery was only option and 100% necessary, so my only decision was who to do the surgery. I know recovery stinks, but I can't imagine not being at least somewhat better after surgery...but it is a decision each person must make....will say a prayer for you....and again, sorry for my silence...

      Doreen

    • hayley-85
      hayley-85 doreenP

      Posted

      Hi Doreen, 

      my son is 5years old and been diagnosed with chiari malformation, we have been told he will have surgery in January and as he's so young the procedure is a new procedure where they will fit a plate to the skull to support the brain, instead of removing anything, he also has scoliosis curvature of the spine due to blocked fluid in the spinal column.

      can I please ask how did you stay strong when you saw your baby in that bed?

      how did you tell him what was happening?

      please any advise as I'm lost and don't know where to start.

      thank you Hayley

    • doreenP
      doreenP hayley-85

      Posted

      Hi Haley! All I can do is tell you my story, and I pray you can find some bits and pieces to help you...

      As a child my son had constant sore throats and ear infections, so finally when he was about 3 1/2, he had his tonsils and adenoids taken out and rubes put in his ears. Even though it is not major surgery, it was still hard to do. But I thank God for it because it set us up for the Chiari surgery.

      My son was diagnosed with Chiari because had terrible allergies. He would sneeze or cough and then arch his neck back and cry in pain. What would get to me was not the look of pain in his eyes, but the look of absolute fear. Six months after the tonsillectomy, we were heading in for Chiari surgery. He was 2 months shy of his 4th birthday. His father and I were allowed to walk with him to the OR door. His father was carrying him, but would not keep a positive happy face, so I took DJ from him. (Your child will feed off of you. If you believe all will be ok, then he will believe it too. I know it will be hard, and this may sound harsh, as we don't even know each other, but plain and simple, suck it up, and be postitive, until he is no longer with you. You will have a few hours to cry all you want away from him.) They had me place him down on a stretcher in the hallway, as we waiting for them to finish doing something in the room. They I said to him something that I believe set everything on the right path foe healing. I don't know where it came from but I said,'DJ, your head hurts bad alot huh?', he shook his head and said yeah. I said ,'We'll the doctor is gonna fix it. Remember after the doctor fixed your throught? After he fixed it, it hurt the worst ever?' 'Yeah', he said. 'BUT after THAT pain was gone, it never hurt again?' ...'yeah'....'Well, the Dr is gonna fix your headaches, and after he does, just like your throat, it's gonna hurt the WORST ever! But just remember, when THAT pain goes away, it will never hurt again, ok?' 'Ok'.

      When surgery was over and I was called into recovery, he had a netting over his whole head, down over his full neck, with the face cut out. (Realize that is just because there is no easy way to bandage the back of the neck, they can't just take around his neck and his throat....lol) He heard me, could not move his neck and just looked at me with his eyes, I could see fear and pain. I said 'hey, baby, does it hurt bad?' He whimpered 'yes'...I said, remember what mommy said, it was gonna hurt REALLY bad, but when THIS pain goes away, it will never hurt again....ok?' 'Ok'....and that was the last he complained about the pain...

      Here is my thing, and only you know if this is best for your child...I personally don't believe in lying to your child....they been to know that you will always tell them the truth, even if the truth isn't fun....I could not lie to him and say, This won't hurt at all. Or it won't hurt when u wake up. He would never trust me in the future. And we have an awesome relationship now. Always have. I don't know how much pain he is in and I don't know, since he has other things going on, how much pain or problems he will have long term. That is something you should find out specifically from your doctor. Guage from knowing your child, how much you should tell him, but try not to outright lie to him...the truth is the truth whether you tell him before or he finds out later by experience, but if his experience does not line up with what you told him, your integrity will be in question for a long time...I am no expert, and I only have the one child, so take it for what it's worth.

      As far as 'how did I handle it or how did I stay strong?' Well, for one I have my faith in God. And I got to a place where I said 'this is what it is'. There are things I can do about it and there are parts that are out of my hands. I did my part in that I searched out till I found the surgeon and the procedure I was satisfied with. And then I left the rest of it in the hands of the Surgeon and God. Stressing over something that I can do nothing about has only a negative impact on the whole situation. Worrying, or stressing, or 'losing it' in no way helps the surgeon or my son, and I committed myself to doing whatever it took to give my son the best possible outcome. Staying positive would help my son heal faster because he would feed off my positivity.

      And that's what happened. He was supposed to go home in 5 days from the hospital, and he went home in 4. He went back to daycare 2 weeks before originally planned.

      Being positive may not heal your son, but being negative can definitely slow his healing process....forgive me again for being stern, but here is what I did. When I got in a bad place, I would remind myself that this wasn't about me, and to not make it all about me. It was about my son, and I would ask myself what would help him, and then do that...

      I wish you well on the surgery. You have between now and January to decide how to handle things, ask the doctor what he will experience after surgery. And tell your son as much as you feel he can handle, while staying positive....after all, there is something wrong now and the doctor is going in to fix it...maybe ask the doctor what will be one or two of the positive changes he will most likely experience soon after surgery (less pain, more mobility, etc) and focus on that with him, but of coure explain it won't be as soon as he wakes up....so he understands...

      There might be some children's books about going through surgery...find one you agree with. And read it to him...a few times...and you can refer to it when he is recovering....'Hey, remember?'...

      I hope some of this helps....my heart and my prayers go out to you and your son...

      Doreen

      Any other questions....please write back...

    • doreenP
      doreenP hayley-85

      Posted

      Btw, just asking but have you spoken to more than one surgeon (i.e. second opinion)?

      I did, and it was the second surgeon, and his procedure that I chose. Much different than the first. It too was a new procedure that I opted for, because he was able to tell me how his procedure was far better than what was commonly done.

      And for you, if you like to read, there is a book written by my son'spent surgeon, Dr Fred Epstein, called 'The Gift of Time'. He not only came up with a new procedure for chiari, but he mainly did surgery on children with brain stem and spinal cord tumors, the ones most Dr's refused to do surgery on and would tell the parents 'he has 6 months, take him to Disney.' He invented a new procedure and gave them years, if not a full life! It's an incredible read....might be therapeutic for you....Maybe find it on Amazon....Dr Fred has passed away, and the book is all I have of the man that saved my son. That book will go to my child and then my grandchildren.

    • hayley-85
      hayley-85 doreenP

      Posted

      Wow, Doreen that's a powerful and strong read. I was hooked on every word. The hospital we are under is amazing and has some great/best in the country I feel we're in great hands but being a new procedure you always will have doughs I fully agree with everything you said about truth and honesty and that's how me an Archie are with each other, I just needed to hear stories from mothers prospective as I'm the one I feel my son, husband and family will turn to even if I have 101 emotions of my own. I know I will be strong for Archie but the overwhelming feeling of sadness I feel for him and wish I could take it away hurts every second of the day but trying to be NORMAL until that surgery date is hard sometimes/most of the time. It's the only option we have to make him better and we are strong knowing that. Thank you so much for your story and words have brought more comfort than you ever relies. My son is brave, strong and a little fighter and I will tell him when he's old enough of your story, to show he's able to achieve anything he dreams of.

      thanks again Hayley

    • doreenP
      doreenP hayley-85

      Posted

      Hi Haley!

      Just thought I would check in and see how you and your son are doing....I know that the waiting for surgery can be so hard, and seem like forever....

      Just wanted you know I was still thinking of you and praying for you guys (as well as the others on this site)....

      While you go through the holidays, stay strong, knowing the new year will bring new hope, and a new future....

      After connecting with you all for the first time on this site a few months ago, after not thinking of Chiari in years, I looked at my son differently when he came home for winder break for his last time....I am truly counting my blessings....God Bless you....stay strong....stay positive....

      HUGS...

      Doreen

    • b2wc97455
      b2wc97455 doreenP

      Posted

      Dear Doreen,

      it has been awhile since we last communicated to each others, nearly 17 months after surgery I am OK, I am blessed I have got the best Chiari Surgeon Mr Flint of Queen Elisabeth hospital, but I am careful of what i am doing..anyway..how is your son getting on with his life?? please share with us

    • lisa50263
      lisa50263 doreenP

      Posted

      What a wonderful mommy you are Doreen. God Bless you.... how is your son now ?
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