No surgery?

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Hello, 

I am 20 years old and have recently (this year) been diagnosed with Chiari type 1 at 7mm. My symptoms have been ongoing for around 6/7 years. They include awful headaches, dizziness, tiredness and some disturbed vision. I have seen a neurologist and have now been referred to a neurosurgeon, however, neurologist doesn't think I will need surgery.

Has anyone not had surgery? If not, how do you cope with your symptoms?

Thank you!  

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14 Replies

  • Posted

    I am super interested in this question. I just had my decompression, and still healing from surgery about 4 weeks ago...I have only came across one or two people on different forums who said they chose not to get the surgery but it was because they were retired and older in their 50s-60s and decided they didn’t want to take a chance making things worse at that stage in their life and they were able to cope at home by just taking it really easy. It’s much more difficult for a young person who is still employed, paying a mortgage, and has a wife and new born (that’s my scenario). I needed to do something cause I couldn’t go 30more years feeling like this...however there is no gaurentee my surgery will work or not, time will tell, but I took the gamble.

    I feel like most young people decide to have the surgery because they still have a whole lot of things to do that require feeling better such as raising children and keeping employed. I also feel young people get the surgery because they are more likely to have a smoother quicker recovery. The older u get the harder surgeries are to bounce back from.

    As far as coping with this....my guess is it’s more suffering than coping, at least in my case it is. I just willed myself for the past 3 years to go to work and never quit. I willed myself to do housework and be social...but I suffered everyday through to it all...it’s really just determination unless u have medications that actually help u, but most people say meds don’t help them that much or have side effects like drowsiness.

    It all depends on how bad your symptoms are...some people can’t walk or have weak extremities and it doesn’t even matter how determined they are, they still can’t cope with it because it’s physiologically effecting them. Mine is bad, but I have been able to grit my teeth so far, but I could tell that I couldn’t keep it up forever which is why I decided to get my surgery....now if I find the surgery doesn’t work for Me, then having to cope with this is going to become really initeresting. I’d imagine I would have to resign from my job, lose my house, move my family into an apartment or even back with my folks, fight for disability benefits, try to find a job that I could do with the way I feel, rest constantly, try to make up for it by being a loving father and husband and do everything I possibly can around the house and with the baby to make it as easy as possible for my wife who would still be working...coping...i think it’s just readjusting your life to live with ur disability, even if it’s as extreme as what I just described...

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    • Posted

      Thank you so much for your reply. I understand what your saying about being younger and suffering from symptoms. I’m currently at university, and my symptoms do make some aspects a bit more challenging.

      I personally wouldn’t rule out surgery, but I don’t believe it will be offered or suggested to me by the neurosurgeon.

      I’m sorry you had to deal with it all for so long, sounds like you’re very strong! 

      I’m also worried my symptoms may get worse, they are manageable at the moment. If you don’t mind me asking, did your symptoms get worse??

      Thank you very much for your input 😊

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    • Posted

      I maybe back to respond later, but after 7 yrs of hell,  failed thoracic outlet surgery, back surgery, 4 neck surgeries, lost a very good income... yes I’m old ^^^ comments lol above but at 52, I feel 92. Before all this happened at 45 I raised 4 kids born in 6 1/2 yrs then went back to work, sold cars successfully for 10 yrs, I could still do cartwheels, put my right leg behind my head standing up, I was no where near the ending of my life as I knew it, and I was so excited to be that young mom, getting ready to have my 1st grandchild, and because of one surgery gone wrong I’m disabled, sometimes wish I wouldn’t wake up. Get it over with. I have continually gotten worse... then 5 mos ago diagnosed with Chiari, what a JOKE THATS BEEN, woohoo. Anyway don’t let these drs assume anythin g about you. You live in that body and will have to forever. I have been to HE// because of drs....don’t let them make you think or do anything . You take care of you. Ok I hope to be back later but if not I got my RANT OUT  for today. But I have been doing this doc dance and they have stole so many yrs of my life away I feel like charging them. HAVE a wonderful day!! 
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  • Posted

    Hello... Sorry you're going through this. Diagnosis can be a scary thing!

    I was diagnosed back in 2015, and originally I made the decision to try and cope without surgery. Nothing really helped with the pain or symptoms though, although ice packs applied to the back of the head can feel nice. My symptoms started to get worse though and I had to start thinking about surgery. What made me finally make that decision was something someone told me in a FB group. Firstly, I wasn't going to get any younger (obviously!) and the younger you have the surgery, the better your chances of recovery. Secondly, the longer you are ill, the more your body loses its fitness and its ability to recover from surgery. You need to be as strong as possible! Thirdly, and this is a big one... The longer you wait, the more chance you have of permanent damage. This can be caused by direct compression of the cranial nerves and also by high CSF. If your body is symptomatic, then damage is being done. The earlier that surgery is done, the higher the chance of recovering in full. That being said, the choice to have surgery is something only you can decide. I am not a medical professional, I am only offering advice that was given to me!

    One thing I will say is that neurologists know nothing about chiari apart from the basics. I saw 2 of them who both tried to tell me it was just that I was stressed. They didn't even look at the MRIs I had done! I then saw a Neurosurgeon who told me that I was herniated 1.5cm and that even laying down in the optimal position, my CSF flow was almost entirely blocked. I then had surgery 9 months ago, and they told me I was even more crowded than the scan had showed them.

    So, don't trust neurologists! FB is full of groups, and in those groups there are thousands of people with the same stories about neurologists lol they are just not given enough training in Chiari.

    Good luck with everything! I'm sorry I can't tell you any tricks to help you cope... I found nothing really worked accept a small bit of relief from ice packs. I hope you get the help you need.

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    • Posted

      Thank you for your comment. Yes diagnoses can! I’ll have to try the ice packs, thanks! 

      They are all very good points. I’m not sure that I will be offer surgery, which worries me as I’m concerned it could all get worse! 

      Mmm yes I have heard many people say that neurologist tend to not know much about Chiari.

      Thank you so much,l.

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    • Posted

      Make another appointment with a neurosurgeon not a neurologist or ask your primary to refer u to a neuroseurgeon. If your primary thought it was necessary to see a neurologist then they should be willing to get u a second opinion from a neurosurgeon.

      I believe my symptoms slowly got worse, and my tolerance slowly was eaten away over a couple years to where I couldn’t stand it anymore and was willing to have the surgery.

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  • Posted

    Hi,

    Take a look at this site and take our conclusions.

    My daughter has the same diagnosis.

    We had this surgery and she stable must better then she was.

    It is a "new" thinking about this situation.

    I wish you all the best, take care.

    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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  • Posted

    Hi Marvel,

    Thank you for putting this post so hoping that others who has a like wise symptom will be able to read and get inside about chiari. Just like others have respond to you - I also  have some experience to tell you I was started with horrendous headache - 7 years ago - then 5 years ago its getting worse - until I collapsed and my son called the ambulance and they thought that I have mini stroke until I have X-Ray then MRI Scan that I had chiari - my neuro surgeon suggested decompression if I can't stand the pain any longer, but first any health care professionals obviously try to control or manage the condition without having to go through the surgery as again its depending on each individual..but I am very positive though, if the neurosurgeon understand about the issue then you bound to have positive outcome (successful result) that is why each patient have to sign about the result/side effect of the surgery - in order to find out (or have a piece of mind) please get the neurosurgeon tells you how many decompression he/she done - what is the successful rate for that. I was unable to walk, swallow, breath , properly - constant headache - I basically have no Quality Of life until I finally got decompressed - I am now drug and pain free - think positive - but listen to your body - even post surgery (I am now nearly 2 years) getting better - I have my loife back - I am able to walk, swimming - no stiff ness - perhaps I am one of the luckiest one - but what happen for some patients - why sometimes they suffer re-occurance - according to my surgeon you have to at least 3 - 5 months before you are trully healing - but lots of patient so impatience then they go back to work - I supppose due to financial pressue.. but believe me ..TRUST in GOD, think positive = YOU WILL BE FINE....

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  • Posted

    I’m just starting the Chiari parade, after having 4 neck and one failed back surgery. So I know what I’m living with and enduring, and I’m 52, don’t allow 1 dr. to dictate the future of your life. I have CT’s, mris and X-rays from 12 yrs ago, stating I had radiculapothy,  herniated discs, deg, disc disease, etc. stating they, the dr that read the test, recommend me, the patient,  to have it addressed immediately. I didn’t then know that you are  allowed to have a copy of each test with the person that read the test results on it. If I had been treated for my nerve damage then, I wouldn’t be numb from the top of my head to my toes, 24 hrs a day 365 days a year!!! These drs. not all, but a lot around where I live have taken nothing I have said or repeated to them non stop for this entire 12 yrs. serious, NOTHING....YOU need to demand they treat you with respect, not treat you like it’s in your head, and if they don’t, keep pushing forward. Fire them. Believe me, if they treat everyone the way you have been, or I have been, at some point they will have to not have a patient base, I would assume. I have had drs say you just  have a lil bit of neurapothy, because I come to your office, clean and dressed professionally doesn’t mean I don’t live in pain, then I go back after all my test then he has to eat his words, I needed  back surgery, my sciatic nerve was involved, I was continuously falling as I was walking, just dropping no warning. At your age this could determine the rest of your life,  how you live and participate as well.   If I had known what my life was going to end up like now, I wish so much that I demanded these drs to treat me as a human being not a number or a name on a file. Go to the next dr, they act a fool, fire them and go to the next. Until you find a dr with compassion and love for their job don’t settle.... take it from a 52 yr old that wishes that she listened to herself and others that had already walked in her shoes, but no I let them do that to me. I wish you nothing but the best. You have to take care of you, represent yourself until someone listens to you. 
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  • Posted

    Hi, I was diagnosed last year with Arnold Chiari Malformation I 5.5mm

    and very symptomatic. I have not had the surgery because I have several other neuro issues such as CIDP, Pots, Severe Herniated dusk at C4,5,6 Migraines etc. 

    kinda scared to have the surgery. Not coping well with all the symptoms and it’s hard to distinguish the s/s cause they overlap.

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    • Posted

      I am sorry you are going through this however I’m a neurological nightmare, if it’s not addressed it will never be fixed. I am numb from the top of my head to my toes 24/7, 365 days a yr., ** take care of you. **See neurosurgeons, neurologist can’t do surgery. See who can help you. I SO WISH THIS STUFF WAS AROUND when I got on my horse for this rodeo of HE//!!! Listen to your body, it talks to you more than you realize. My nerve damage I’m certain is permanent because no one was willing to address it on one of my first mris 12 yrs ago.... just take care of you cause no one else can do it. If I recall, Selma, and I don’t like speaking for her or out of turn but I believe she had a neck issue, all discs involved and after her surgery, her discs were good. But again I’m not trying to speak for her and I hope I concluded what she wrote to what I read. Wishing you the best of luck!!!
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  • Posted

    Dear Impulse, I detested surgery - however - the decision I made to have surgery is the best one - if you don't have surgery you might get it worse..so the sooner you can have it the better - it does not matter what your neurologist wants or not wants it is YOU the most important one - if you keep having symptom than you have to insist for him to refer you to the surgeon for surgery - they do not know how you feel ..but you have to listen to your body..there is no way chiari being able to be managed by drug..(I used to work in Pharmaceutical COmpany) so what ever the health care said..I suggest for you to have a surgery - the longer you leave it the worst could that be....

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