Chiari Online Support Group

Help please! 🙏


#1

Hello all! Just reaching out to see if anybody has these same experiences or can provide any insight into what I am experiencing. I had my decompression surgery and C1 Laminectomy in January of this year. The surgery was removal of part of the skull and vertebrae to create room, no patch. I’ve posted since post op regarding constant dizziness and a strange shallow heavy breathing. Prior to surgery the dizziness was always there, but it was lighter, more like I had a cocktail or 2 with spells of lightheaded and near passing out. Since surgery, the dizziness is constant and quite pronounced, a drunk feeling. Its like my balance system is not communicating right with my brain. My eyes are off, they hurt, lots of pressure behind them, things look ‘off’. My brain feels like it’s in a bobblehead. I’ve just returned to work and so many of my pre op symptoms are flaring up, as if the dizziness wasnt enough! Since returning to work, I’ve now had frequent episodes where I get very lightheaded like I’m about to pass out. My coworker had to grab me during one of the times and the others I have to grab a chair quickly. I’m having to hold onto walls half the time while at work to guide myself because my balance, dizziness and lightheadedness gets so bad. I find that the longer I am upright and the longer I push through it the worse I am and by the time I get home my body is so weak, my legs are so weak, like jelly, but heavy at the same time. I feel a vibrating/Buzzing throughout my body, like every nerve fiber in my body is misfiring and miscommunicating. I have the most peculiar feeling throughout my body that I can’t put into words, but it leaves me feeling that I have no strength left in my body, like I’m fading out, during which times I can’t even interact and talk with my family, all I can do is rest my way through the misery and pray it passes. I’ve also had a heavy weak feeling with breathing since surgery, not sure if it’s from being intubated, perhaps it’s not related, I don’t know what is or isn’t at this point . I’m beginning to question whether the Chiari and CSF blockage were even the cause of my symptoms as surgery didn’t seem to give any relief, if anything I am worse off.
My neurosurgery team is ordering imaging, however as far as they are concerned, surgery post op care has been completed as it has been over 3 months and all follow-up care should be with my primary care doctor and neurologist. My primary doctor is at a loss on how to treat me and I can’t see neurology for another 2 months.
My apologies for the long post! I just feel scared and alone with these symptoms and my doctor doesn’t seem to have any answers. If anybody has any thoughts or advice I’d be so grateful. Blessings to all. :two_hearts:


#2

Hi there you are not alone I want you to know that what you went through in surgery is a very! traumatic thing its been 2 years since my cranial decompression and c1 laminectomy I unfortunately had every complication infection,csf leak requiring lumbar drain,meningitus and was in hospital a total of 7 weeks on steroids and iv antibiotics.In saying that though “good on you” for being back at work so early!.Recovery takes a lot!!! of time and I mean a lot!!! like its been 2 years and im still not 100% the dizzy spells do get easier its like your body shuts down and goes into survival mode after all you have had a trauma to the brain and your body is trying to repair it.Perhaps when you go to the docs next do some research on "CO MORBID’’ conditions of chiari malformation eg EDS,POTS,.There is loads!!! more it may or may not be related to chiari but the comorbid conditions is a great place to start if you are wanting answers.Sometimes things just happen that we cant explain and believe! me I get it everytime I go to the nuerologyst Its like im trying to tell the doc my house is on fire and he just stares at me blanky and says “where is the fire I cant see it”.One of the many things that just sucks about invisible illnesses its there you feel it but cant explain it or show it unless your falling over or passing out and then they believe you.But honestly try to Eliminate stress full situations as much as possible obviously not everyone has the luxury of not working like I do but you really need a strong! support system around you and honestly don’t be afraid to tell people you are struggling most people are pretty receptive and accommodating if they aren’t just educate them.I really hope things get easier for you but yeah the things I found to help me manage was getting a regular bed time,not pushing through and thouroughly! listening to my body resting.And setting clear boundaries with family and friends so they understand that I am chronically ill and I can only do what I can do.Its gonna take you a very long! time to feel yourself again but I promise it will happen.And honestly my best piece of advise take it or leave it!! CO MORBID CONDITIONS.Advocate for yourself as much as you can and if your not comfortable with your GP,NEURO,get a second option and don’t allow them to tell you its nothing when you know its not.Sending lots of positive vibes your way know that this disease can feel extremely isolating and confusing and misunderstood but you are not alone.And honestly when my brain shutsdown and I cant talk to people I simply don’t I turn my phone off and rest if its an emergency they know where I live haha.You have gone through hell be kind to yourself and take care.:brain::grinning::blush:


#3

Missyjo,

Sorry to hear that you’re still having such fierce symptoms. I know I didn’t really see any obvious healing until at least a year post-surgery. (But… I’m older. 52 yrs. at surgery. Lotsa things move slower when you’re older. :neutral_face: )

I am wondering if you are having low blood pressure issues. In Chiari’s, it is your brain stem that gets the ‘squish.’ With me, I was misdiagnosed for 10 years, so by then, I was told, the damage to the brain stem was irreversible. Permanent. The brain stem is responsible for your ‘automatic nervous system’ - all the things you don’t have to think about - including the cardiac system.

A month post-surgery, I had a tilt-table test. That’s one way to find out if the issue is really a blood pressure issue. Because of the permanent brain stem damage, I have re-occurring Chiari symptoms. Every 4th day, all my symptoms come back. The worst of those symptoms is the blood pressure drop. I have to lay flat on my back all day - 24 hours - because if I so much as sit up, I get dizzy and nearly pass out. Fortunately, I do get 3 very good, normal, days in between that bad one. Even so, stress of various sorts can bring the symptoms back real fast. USUALLY on those days, extremely salty snacks can salvage the blood pressure drop. Also, I get to liberally salt all my food - all to keep the blood pressure UP!!!

IF it is a blood pressure problem, you may need to be cautious with dental visits, also. :hushed: I just found this out! Novocaine with epinephrine tanked my blood pressure almost immediately after the shot!!! I had no idea this would happen! I had to stop the procedure (crown build-up and root canal. UGH!) and hang my head between my legs to keep from passing out. Epinephrine is adreneline - and gets a normal person’s heart racing. My brain stem reacted opposite from ‘normal.’ It’s hard getting to learn your new ‘normal.’ Hope you find out what’s the real cause to your dizzy.


#4

Hello Missyjo,

So sorry to read all that you are going through - you did a great job describing the feelings and sensations that you are experiencing. I can definitely relate and have been having similar symptoms since a concussion and whiplash injury this January. The underlying chiari had been largely “silent” until then, but since January it has hit with a vengeance. Initially, I was referred to a neurologist who recommended PT and conservative care to see if symptoms would resolve. Things slowly improved after 2 1/2 months but then a re injury occurred during a PT session and everything went back to square one. I am 6 weeks out from the re-injury and finally starting to feel human again. Needless to say, I have not returned to PT but have found amazing relief with both traditional acupuncture and osteopathic treatments. These two things together have reduced symptoms by about 75%. I’m scheduled for decompression surgery June 15 and am hopeful that with the combination of the surgery and the alternative therapies that I will be able to get back to some sense of normalcy. I also pay close attention to diet ( anti- inflammatory) , drink plenty of filtered water, and take supplements to support the neurological system. I know each person’s situation is unique and that not everything works for everyone … I hope you find some answers and the right combination of things that bring you relief and healing.


#5

Brianna my gosh, you really had a rough go with your recovery! Thank you so much for your response! I really appreciate everything you said! Yes, the blank stare from the doctors, the stare that makes you totally lose faith in medicine. :confused: Do you know the full body vibrating/buzzing I’m talking about? The weakness? Just wondering if other Chiarians get that? I will continue to hold out hope and pray for answers. :pray: Good luck on a full recovery throughout the rest of your Chiari journey!! Have a beautiful day!!


#6

Hi Beth! Thank you for your thoughts! :smile: I have considered dysfunction with my autonomic nervous system, I was going to bring it up to my new neurologist when I see her in June. I was misdiagnosed for years and put on heart medication for tachycardia, then taken off of it because the cardiologist said it wasn’t an issue from the heart. For the past few months my heart rate has been still high at times and very sluggish and slow at others. BP is always great though. I did have someone mention the vagus nerve too. Still, lots of theories from doctors, yet no action to provide relief. Just incase there is some kind of dysautonomia I started gatorade everyday, we’ll see if that helps. That is wonderful that you have days of relief between episodes! I hope that it continues to get better for you!! Have a great day!


#7

Hi Lulu! Similar symptoms as in you get the whole body vibrating/buzzing too? I just started PT so knowing that it aggravated your symptoms is good to know! I will pay attention to how it is affecting my body. So good to know about acupuncture! I have been seriously considering trying it, my insurance doesn’t cover it, but if it can provide any relief at all of even 1 symptom it’s definitely worth it! Perhaps looking into diet change is something I should try as well. Best of luck on your upcoming surgery! Prayers :pray: for a successful surgery and speedy recovery! Have a great Sunday!


#8

Hi again!

Yes, I have felt similar sensations … what I call a current like feeling that centers in the upper chest and radiates to the abdomen … sometimes to the arms and legs. It has mostly gone away after an acupuncture tx that included a technique called cupping. I still have arm and leg weakness but that too is improving.
As far as PT is concerned, the therapist working with me did prolonged manual cervical distraction and passive range of motion of/ mobilization of C1, C2. He had won my trust over several sessions but I never should have let him touch my neck… it’s a mistake I won’t make again. I’ve added the osteopathic tx in in place of PT and was lucky to have found doctors who are experienced with Chiari patients… I feel very blessed to have found them ( and insurance covers it ).
I hope you feel better soon …


#9

yes I experience the vibration/buzzing and the weakness its so sudden out of no were like it knocks me around a fair bit it kinda feels like anemia like that sort of fainting sensation like your gonna fall if you don’t sit down or my hands especially with fine motor activities like holding a pen,knife or shoelaces really challenge me like I have to focus extra hard.I think its caused by the chiari creating damage to my nervous system.I just had a thought it may be "peripheral neuropathy?’’ I have just had a blood test for that it can feel often times like mixed signles for example I often feel like there is pins being poked through my fingers like sudden jabs its so strange I thought as painful as it is that its normal apparently not haha.


#10

I know the “blank stare” from doctors (I was told to leave A&E just a few weeks ago, made 2 steps before going to the floor as either my heart rate dropped or something - weak legs/drop attack). A lot of doctors seem to think if there isn’t something visible then it must be okay… I have passed out and had blood pressure >200, heart rate varying from 40’s to 100’s without moving, although quite a few A&E doctors don’t bother reading medical histories either…

I’ve not had the full body buzzing, but I I have had an intense buzzing sensation in my hands, feet and sometimes stomach at the same time, normally just for a short while during a frequent “peak” of a headache. My heart rate normally dips very low at the same time (40’s) and then recovers back up to its normal (but high) 90-100’s before slowly going back down for the next “peak”. This happens again and again, I suspect that this is a build up and release of pressure as I always feel much better after the “peak”, although that causes the vomiting, passing out, drop attack etc

I have had a heart monitor fitted since I was originally seen by cardiology who decided my heart was fine so passed me over to neurology who questioned if my heart was the problem. Hopefully now they have some information from their own devices (I have loads from my own) they’ll have to accept the heart rate changes as a symptom of something neurological, rather than dismissing it as not related.

In the UK it does seem different how Chiari is treated, the Chiari malformation was spotted and diagnosed back in 2017, but without proof of CSF flow restriction (MRI’s performed when I didn’t have a headache showed no problem apparently) the NHS won’t do anything - so if no diagnosis can be proven it must be a migraine.


#11

Hey MissyJo,
For a start please do not be apologising for the length of your post, nor for your concerns. We all have concerns and we all need answers. Some of the best people to ask are people who have been there, US.
The human brain is a unique piece of equipment and although many dr’s make out they know all about it, they don’t. Even the specialists don’t know it all no matter how much they profess otherwise. For many years I was told ‘there’s nothing wrong’. I was given every diagnosis from hypochondria to Trigeminal neuralgia to migraine, it wasn’t until I had a major incident and collapsed that further investigation was undertaken and a cause established. But even after going through multiple brain surgeries still the medical profession has the theory “They operated, they fixed”.
I have queried the surgeon as to whether damage during surgery could be the cause of ongoing symptoms and was accused of trying to gain information on which to sue the dr’s. I am looking for answers, not $$$$$.
HINT: Dr’s DO NOT like being questioned.
As one specialist put it to me “…I am the professional, you, you are just the patient, you wouldn’t know. I have done years of studies to obtain my medical degree and I have the knowledge…” I have now learnt that I have to manage all of this for me and not them. I have daily sensations from tingles to visual distortions to headaches from hell. I’m photophobic (light sensitive) I have major issues with balance and my body temp is all over the place. Nobody has been able to give me a direct diagnosis for all of these sensations and if I took all the medication these so called professional want to give me I’d rattle like a pill bottle. So I’ve now come to accept that despite all their rhetoric regarding them having all of the knowledge, they don’t. I now look for a progression of symptoms, if things are getting worse, then I act. I have lost count of the number of times my wife has taken me to hospital as a precaution only to be sent home being told there’s nothing they can find and personally for me that’s fine. The problem would be if I didn’t act and then end up having another major incident. The medico’s want to make out that it’s all in my head, then fine (as if I don’t know that already lol ), but with the last incident I was grilled as to why I hadn’t been to see them sooner. So it’s a lose/lose situation. I go and see them and they send me home or I go and see them and they say I should have acted sooner. Grrrrrrrr

I say it again, we have to manage all of this for us, not them. They all want to judge, fine, but come walk in my shoes for a day… … now, judge. If they had to manage all of this for a day they’d be second guessing their judgements.

Merl from the Moderator Support Team


#12

Dear Missyjo, So sorry about your story. I also was misdiagnosed with heart issues for years before the Chiari’s was discovered. For me, it was a mitral valve prolapse misdiagnosis. I was on beta-blocker medicines for years. Of course, it didn’t do any good. Didn’t hurt, either, though. :roll_eyes:

What I thought so odd, though… doctors kept waffling with their diagnosis. Like, one would say, “Oh, yes. I hear the mitral valve making very soft clicking sounds. It’s so very, very slight.” Then the next doctor would listen to my chest and say, “I don’t hear anything wrong with your heart.” :thinking: Grrrrr. Back and forth it went. However, it rather rocked my world to shreds one day when my heart started to palpitate non-stop - for weeks!!! I was rushed to the ER in an ambulance. That particular hospital had a special Cardiac ER - where I was plugged to monitors for 24 hrs. In the end, I was socked with a large bill and told, “Everything looks normal! We can’t find anything wrong with your heart. Some people just plain have ‘jittery’ hearts.” GRrrrrr again! :scream_cat:

That’s when I noticed that not even the beta-blocker medicine was able to stop my heart from doing chaotic stuff! What was going on?!?! A cardiologist had me wear a Holter Monitor for 48 hours - and it did show my heart was beating 1,000 extra beats an hour. But, he said there was nothing more that could be done about it!!! He did give me some Xanax to stop the panic attacks that were provoked by the worst palpitation episodes. That’s all.

Since my surgery, I have never had palpitations that have gone on THAT long. If I have too much Pepsi or coffee, I might get 5-seconds of piddly-wops with my heart. But, that’s the extent of it now. (Besides the low BP which is a constant. Even on my ‘good’ days, I have to keep snacking on salty goodies - which I don’t mind at all. :stuck_out_tongue_winking_eye: I love salt!) Are you starting to see gradual improvements with your cardiac events since decompression surgery? I certainly hope so.


#13

Omg. I had the tilt table test done years ago n it was so awful. I started to pass out at the 2 and level they put the table at. They make you stay like that till you almost totally pass out. I had to drive home after that. I have had this most of my life n it’s worse when I get sick. Reading that others are having that body buzz is a relief to me because I felt so alone for so long. I pray we all recover from this.


#14

I have had those passing out spells most of my life but when I am sick they are more frequent. Really even when I just feel bad. There is a test they can do for that called a tilt table test. I had it done. They strap you to a table n stand the table up. They recline the table so many degrees and hold you there for so long. The 2nd level I was at I started to pass out. I scoffed at the thought of the test. I thought it was a joke. It really happens. I was so shocked. People are telling me it’s blood pressure related. I normally have low blood pressure. Since the chiari surgery my blood pressure has fluctuated in numerous occasions. Really high to really low. When I am sick these spells are more frequent. Trust me you are not alone. When I tell doctors what I am experiencing they look at me like yeah so. I call it the yeah right look. They don’t know the answers so they act like you are making this stuff up. None of us are crazy but the medical professoinals do try to make you feel that way. Good luck to you.


#15

Hi Wrumble! They sure do make you feel like your crazy :confused: hmmm, we can’t figure it out, so let’s give you some anxiety meds…I’m thinking if you guys could just make me better I wouldn’t have anything to get anxious about! I try telling them that I’m not having anxiety, that getting concerned/scared is a natural stress response to dang near passing out, hellloooo!! Lol, ugh 🤷 I’m glad to know somebody else experiences the body buzzing, but at the same time I’m sorry you have it! It’s awful. Good luck to you as well and thanks for the response! :blush:


#16

Hi Beth! Piddly-wops, lol :blush::laughing: cute term. Sounds like me, passed from cardiology to neurology back and fourth for years before figuring it out. I was also on beta blockers and calcium channel blockers before a new cardiologist said my heart was healthy and I didn’t need them. They found SVTs on previous holter tests, but for whatever reason the new cardiologist didn’t think that was my problem, idk. I haven’t noticed if surgery has helped with that aspect or not as mine seem to come and go in waves for weeks at a time and stop for months at a time. I do get palpitations often though. I have found the opposite since surgery though where my heart rate is quite slow for me at times in 50s vs 150 the week before surgery. The nurses did note I had quite a bit of tachycardia during recovery so time will tell. Im glad you are getting some relief as the ‘piddly wops’ can feel distressing on top of all the other Chiari symptoms. If they flare up on you, bearing down can help, like if you we’re blowing on a pinwheel. Same with if you make yourself cough or lay on your left side. Thanks for the response! Have a great day!:blush:


#17

Hi Merl! I’m sorry that you too have to suffer and I hope that somewhere in your journey you will find relief. Yes, I’ve heard they don’t like to be questioned as they are the experts, which yes, they are. With that said, when they dismiss us after our visit, their life goes on while we continue to suffer. Of course we’re going to look for answers, educate ourselves, research, reach out, and in doing so I think WE become experts as well and when trying to share the knowledge we’ve gained it’s not very welcomed. :neutral_face:
I notice you said you’ve had multiple brain surgeries. From your experience, and from what you’ve seen as modsupport, what are your thoughts on extradural vs duraplsty? I had the craniotomy with Laminectomy. I kept telling neurosurgery something isn’t right as I feel worse and they kept reassuring me it was part of recovery and be patient. After calling last week and explaining I’m having frequent near pass out episodes, falling against things, etc, they ordered a new mri and new cine mri. I have regular mri today but had cine last week and neurosurgeon called and wants me in his office regarding cine results. I read the report and while it shows some improvement with flow, there are some areas that are worse. The radiologist noted it was markedly abnormal. I have a feeling another surgery might be recommended, but the research I’ve done has shown duraplasty is only marginally more effective than extradural if at all and much more risky, yet I’ve also read that a large number of people who have extradural will not see improvement and will go on to have duraplasty. Thoughts? Guess anything is worth a try at this point. :blush: Have a great day!


#18

Hi Lomax! That’s awful you were told to leave and then collapsed! I’m glad it was in front of them at least so they’d believe you and so they could help you!! What a struggle. :pensive: Totally relate to the migraine comment, lol. I’m like, I don’t think migraines last 24/7 EVERY day! But, what do I know 🤷 I had a neurologist say yes, it can, and it can cause buzzing in the legs too.
Not sure if that was bs or not. The human body is pretty amazing and complex and can do some wacky things to us I suppose. Have a fantastic day and I hope that you get better too!!


#19

Hey Missyjo,
Through my experiences with neurologists, neurosurgeons, pcp’s and other specialists, they ALL have their own opinions/theories/practices. Some may recommend a specific course of action and another question why those recommendations were made in the first place. The contradictions in advice are huge and the confusion this can create for us, the patients, is enormous. Sometimes I do wonder if treating us like mushrooms (ie Keeping us in the dark and feeding us on bulls*&%) is taught in their university studies or whether it is a learnt skill, but it certainly does not assist the patients. As I say I have questioned them previously but to say the reaction was negative would be an understatement of massive proportions. I have gone and obtained 2nd, and 3rd opinions previously but this only adds to the confusion as often they will totally discredit the other opinions. My only advice here would be to find a dr who you trust and feel comfortable with and maintain that relationship as your treating practitioner.
I can assure you being told “it’s all part of the recovery…” is normal. My last surgery (x2) was in 2013, and I’m still in recovery (seemingly) because I’m still having weird/odd sensations. Now they have become my new ‘normal’, if you can call them normal.

Merl from the Moderator Support Team


#20

Hey, Missyjo! (“Hey” is what they say here in the South.) Sorry to hear that surgery hasn’t really helped abate the cardiac issues. It’s so hard to say how things will go post-surgery. I guess it all depends on how much permanent damage has been done to the brain stem.

I’m only guessing, but I think it has helped my cardiac issues to improve when I got into some pretty serious cardio-vascular exercise. Prior to my Chiari symptoms getting REAL bad in 2002, I was a very competitive runner. I ran - and won - marathons. (My best marathon time was 3:10.0) I had to quit running from 2002 - 2012 because I was starting to faint during workouts. The harder I pushed myself, the quicker the fainting spells came on. I had no idea what was going on - and freaked me out terribly :flushed:

Since my decompression surgery, I’ve gotten into race-walking. I will never jog or run again. I’m afraid the jarring will compress things all over again. With my permanent brain stem damage, I have regular re-occurring paralysis every 4th day and every 12th week. But, the three NORMAL days in between the 4th crash day allow me to do pretty hard exercise and cardio-vascular training. That’s how I was able to get into race- walking. I’m doing OK at it. But, it is hard competing against ‘normal’ people who don’t have CNS issues. I get beat time and again on the days where I start getting paralysis. But, I still want to compete! :face_with_thermometer:

Anyway - I am guessing this walking probably - and might - have helped my piddly-wops from occurring as frequently as they did prior to surgery. I only get palpitations now if I OD on Pepsi and coffee. :rofl: My brain and CNS sure love the caffeine. But, my cardio system kinda bucks about it!