Chiari malformation & pop rocks

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Pop rocks are going off in my head. I'm a 47 year old female and have been going downhill with this battle for too long. This most likely sounds crazy I thought I was at first I had decompression surgery for my chiari back in 2000 I was told by surgeon I would be fine it was gone surgery was successful and I truly believed that for almost 14 years in 2014 I Went from feeling fine to not being able to walk and hold my head up without supporting my neck with horrible pain in the lower back of my head where decompression was done feels as if the back of my head could and may just explode worst pressure pain I've ever felt I won't call it a headache bc it's crippling way beyond a headache or migraine and the cold makes it so much more intense and painful I've been getting the pop rocks about a month now they started off like maybe once a day now it's non stop off and on all day everyday it actually feels and sounds as if I put a handful of pop rocks candy in my mouth and their popping. Other people  near me can hear the noise if it's quiet at first I thought I was really going crazy the only information I can find on this symptom is what happens when spinal fluid is leaking from your skull and about a month ago I started complaining off having bad taste in my mouth all the time  i can not taste anything any more and no matter what I do I have a bad Taste left in my mouth my neck hurts all the time I've also had many spinal fusions and cage implants to my spine my mucus has a new bitter/sour sort of taste to it I know it all sounds very odd and gross but all

The info I have been able to find on these point to spinal fluid leak I no longer have a surgeon who is willing to treat me I've been told by a couple that I've had so much work done no other doctor would want to even attempt more surgeries as the risk is greater then the benefit i don't have private insurance I'm on Medicare so no one seems to offer much if any help I'm just hoping to find out if anyone else experiencing or has in the past any of theses especially curious about the pop rock sensation and if I will ever get my taste back and get rid of the bad taste in my mouth I'm told this is most likely from the fluid leak and that's what I'm tasting i have a heavy headed feeling all the time to the point I'm using my  hands to support my  neck because my  head feels way to heavy to hold up. I have the feeling of having to shrug my shoulders up all the time to balance the weight of my head I'm constantly doing this  And the bad back of the head pressure I've been getting for years now they explain it exactly how it feels it's like holding your hand over a hose and blocking the water from coming out it's gonna build up pressure till it blows any help advise or input will be greatly appreciated. God bless 

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  • Posted

    Wow Stacey, I really feel for you, it's strange but some of your symptoms, I have but mid compared to yours... I get a lot mucus which is bitter too, but been told it's down to acid and found I have a hiatius hernia.... And my back pain is due to bulging disc... When the pressure started in my head again I had an mri scan, but my neurosurgeon said there is still space at the back of head, therefore can't do anything more surgery wise ... Not that I want more surgery, but if the brain is getting squashed again it can cause a lot of damage... Have they done anymore scans to see what's going on? I'm in UK... Yes I get the popping too and tinnitus.. Keep pushing for answers hun xxxx

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    • Posted

      Thank you very much for your fast reply I've seen almost all surgeons in my area that my insurance will allow and I'm told I can not have another surgery because it would be too much of a risk durn my first surgery the de cut my artery and I almost bleed to death they had to clip it and he removed too much skull from the back of my head which actually caused my brain to drop down more and it rests on top  of my spine. I'm having a hard time getting used to the popping and it kind of freaks me out knowing what it actually is because what's going to happen to me eventually due to this my hands and feet swell up so much over night that I can not wear rings any more they say it's from slow blood flow o believe it from the artery that was cut and clamped off and will I ever be able to taste again or at least get rid of this horrible taste mine isn't from acid I've had that before and this is so much worse the only way I can explain it is like a sour metal taste. Thank you again and I wish you the best and hope you don't develope any of theses other issues. God bless Stacey Strong 

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    • Posted

      Omg Stacey how awful for you, sounds like they butchered you.... They should compensate you for the mistakes they made! Sounds like they have made your life worse instead of better.. It's sad they can't do anything else to help you.. I hope something positive can be done for you in the future hun.. Take care x

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      Thank you that's very nice of you and yes I feel I was butchered the same surgeon also replace the wrong disk durn my last surgery don't get me wrong Their all bad however he was supposed to do the top one and did the 3rd one by error the top was the worst I only have 2 disks left that haven't been replaced and they can't operate on them bc the brain stem rests on them this dr wouldn't even tell me what the clip in my head was he told me once I discovered it was their thru X-ray that it was a part of my hardwear and it is not he never told me after surgery that I almost bleed to death or that he cut my artery I'm only 47 years old and in worse health then most people I know into their 70s & 80s I don't pity or feel bad for myself I just wish I could find ways to better deal with the many things affected from all this I won't take pain pills only over the counter because I will become easily dependent on them so I'll refrain for now until I absolutely have to take them. Also I'm having part of my windpipe & thyroid gland removed on 10/11 I haven't been able to swallow food for over a year now that's due to a diff issue a 2 inch tumor sits in top of my windpipe and I sometimes even choke on liquids. I pretty much survive on chocolate milk I went from 257lbs down to 108 in less then a year my ins is Medicare which don't pay much to the drs so I feel I take a back seat to other patients they left my weight loss and trouble swallowing for over a year before sending me for any tests they just kept telling me it was Lyme disease. I was depressed for many years I've been going thru all this since 1999 when I was still only 29 I've learned to accept this was Gods will for me and I'm fine with that I tell everyone I'm lucky and special bc what I have is so rare that most people haven't even heard of it and that's something no body can ever take from me lol I have to tell myself things like this to keep me sane. For me once I've been up and moving around a couple hours sometimes less I'm having to hold my hands around my neck snug to support the weight of my head and then of course my arms get sore and tired. I had never heard of the popping sound and sensation before I started getting it the only thing the surgerys have helped was my balance I used to just fall down all the time at least that's better. I've tried to hold the dr responsible and even tho other drs have told me the surgery wasn't done as it should have been done and it was morally wrong for him to not tell me about the artery I can't get anyone to stand up against him. I'm not looking for his $ I just want him to acknowledge he made a mistake everyone is human and I can forgive this but he has never once offered an explanation for anything and now has me at the point no other dr wants to help. Does anyone know what the long term dangers of leaking spinal fluid are or could be? Thank you again for making time to discuss this with me. God bless you. Stacey 

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  • Posted

    Hi,

    Decompression 2014and continued to have neck pain.  I can still walk.   I'm 63 on ss and was in asst living 2 1/2 years.  I'm on cymbalta have horrible taste too.  Had one cervical fusion.  Neck very unstable hurts to sit.  I feel for you.  I just keep wondering when it will end.  Hard to do anything. Hope things get better.  🙏

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    • Posted

      Thank you very much I also will pray for you. For me I've never been a quiter but some days I can't find the fight in me and some of the things I do to support my head and release jaw pressure are embarrassing if seen by someone who has no idea what's wrong but they just look at you like you're crazy 

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