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Anyone has had these strange symptoms as well? Chiari Malformation...

Hi,

I am new to this.

I was diagnosed with Chari back in 2019 and the neuro doctor I had thought nothing of it. My ENT was the one who ordered the MRI because I kept complaining I was losing my taste or smell or at least a decrease in sensation. He thought that was abnormal so he ordered an MRI and I am glad he did  because he was the doctor who truly took the right steps into where I am at now.

The mri came back showing a posterior pituitary tumor, right side ventricle is larger than the other but within normal limits, and Chiari herniation of 4.5mm below the magnum.

He was amazed by the results since it was such rare thing for him and he said this is what’s causing your smell and taste issues. I also need to mention I have had reflux since I was 21 now and I am 30. I thought that was the reason I was losing my smell and taste. Instead, it was probably all the reflux coming back up and activating my already fragile nerves.

He said go see a neurologist which I did and the neuro ordered some tests and said everything came back normal. I never saw that doctor again btw. He ordered eng, c-spine to look for syrinx and pituitary study. No syrinx was found, pituitary cyst was 7mm & he said Chiari was too small to cause any of this.

I went about my life from 2019 to now-- things have changed so much since then and I found myself researching more about this rare condition only to find out how much the medical system can fail us sometimes. I wish I had done something about it earlier, but I am here now with new strange symptoms.

Once, I put the pieces together and it all made sense-- I think I’ve been symptomatic for a long time and I came here to see if some of my symptoms are Chiari related or is it something else. Because I noticed a lot of chiarians have other illnesses as well.

2016—
I always had weird pain in the back of my throat, mostly right side. Thought it was a sore throat or reflux. Saw an Ent about it for years, kept taking antibiotics because we suspected it was an infection. No improvement, the pain would just come and go. Looking back I think it was the neuropathy instead because the pain was mild and brief that it could be confused with a sore throat. That pain started to play games with me over the years.

It was in the back of my throat, where the first numbness started, the back of my throat is somewhat numb now. My right cheek was numb as well or the inside of it, again thought it was reflux. The pain progressed to behind my right ear, thinking it was an infection, more antibiotics were prescribed. Looking back the pain was the same as the one in my throat.

2017-2019:  The pain moved down to my right shoulder where I thought my lymph nodes were swollen and it went away on its own like all the other pain, but it was the same type of pain. Brief and neuropathic like. Then the right side of my head started to hurt. I thought it was a headache and I think it was the pain that’s started in my throat, but it moved its way up and now I am here sitting with stranger symptoms.

2021—Where everything changed…

I went for CT of the neck with contrast to check on my lymph nodes this where all hell broke loose lol.

A week prior to that I must mention I had right sided ear pain then moved up to tingling on top  right side of my head and middle of head. Went away on its own.

After the CT—I came home and started having headaches, vision started to do funny stuff, seeing spots, lights would shake from my side vision, lost vision sometimes, and over the weeks stranger things happened (lights would shake upon head turns, always had shaky vison here and there). I sometimes bend over my neck and feel shock like sensations (down to my limbs, thought it was chills but became so frequent it was weird) and then I noticed my body would break out in goosebumps. The goosebumps have stayed and would react to things such as cold or clicking of key board, etc. Now the right side of my face, arm, back of neck, thigh, leg and some parts on my left side experienced prickling sensations at first then tingling then now numbness or decrease in sensation to cold, feeling air, etc.  

The nerve started with burning hands that healed on their own, then my soles started to tingle or numb then everything just moved its way around. I did get my thyroid checked by accident & was diagnosed with subclinical hyperthyroidism, but my levels are back to normal.

Now I am sitting here going crazy thinking to myself what happened in a matter of t3 months and is this related to my Chiari, etc. My biggest concern is I noticed the goosebumps respond by either having a weird burning feeling to covers or change in the weather. My skin numbness will come and go depending on the day and time and what I do. Sitting at this computer and typing fuels it even more. So, sorry for the 2 page introduction, but I wanted to see if someone had similar symptoms?

Things I’ve had over the years, when I wake up sometimes like once every 3 months I would get random loss of vision upon standing in morning and I thought it’s due to me not eating sometimes. I don’t know if I was born with it, I know with this condition you shouldn’t get on roller coasters and such and I have in the past. I actually got my reflux right after a roller coaster ride. I think I was born with it and things have exacerbated over the years. In the last months, I’ve been experiencing strange things such as nightmares, can’t fully close my right eye or lost the sense of it, lost the feeling of telling my body is in pain inside at least but can still feel needle pricks. I can control my right eye normally just slight difference of feeling compared to my left. Blurry vision, trouble with lights, visual trailing and worse of all upon neck rotations stranger symptoms. I also have rare symptoms like palatal myoclonus, this was going on for years until I caught it the other day. Used to happen at night sometimes during the day, neck tremor since I was 21, body sakes and twitches at night—thought it was due to lack of sleep, but now I think its progressing.

So, has anyone else suffered such strange symptoms…  Only people on my care team who are concerned are my eye doctor and Ent, can’t find a good neuro and I am seeing my PCP to get the cine study done… I don’t want it with contrast because I feel like I react to contrast strangely.. As well as other tests I want to rule out before I head to NS.

Hoping this new neuro doctor is my last hope of helping me rule out things.. I know my body and I am on game of clue… I just need someone to listen to me, order the right tests, rule things out then I can consider surgery… I am on Medicaid and I am so limited in Virginia to doctors with this… I know who I want to see, but I need to get a job with better insurance to see a good NS….but the way things are progressing… I am so scared I won’t have much time… if you have read all of this I thank you. You can tell I’ve been under a lot of stress, anxiety, and lacking some sleep because of disabling this can make you feel. Thank you.
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992677 tn?1537668903
Selma said things well already but I wanted to take a sec and let you know how much I appreciate your story. See Selma is 9000% correct in that “ Having a condition that is not well known even in the medical community is frustrating to say the least”.

JMHO - Doctors are conditioned by their patients to show no weakness. We should respect the time that they spent learning their profession. However, sometimes they also need tactfully reminded that as their customer it is our choice if we wish to allow them to be in our employ.

Anyway, having a foggy day so I am sorry if this isn’t coherent. Nothing wrong I just have bad habit of listening to my brain that still thinks it is 20. Lol

CW
Helpful - 1
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LOL, right finally someone who gets it. It sucks, but i have become numb to their ways as they are trying to do their jobs. Now I just match their energy, stick to the facts and back up the science with extensive evidence. Hope you are feeling better!
Avatar universal
I should mention.. I had to urge the same doctor to do a MRI of brain, c-spine, t-spine and I wanted a lumbar one (with chiari  you should look at the whole spine), but he wouldn't budge..... Same Neurologist I stopped seeing now. Mri in August showed same herniation, same cyst, no synrix...I had MRI of brain prior to that in July. This one showed small posterior fossa volume, cony shaped cerebellum and cony shaped tonsils.. this MRI guy was much bette than the other testsI had in august... I also think where we get our imaging done matters......
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Hi and welcome to the Chiari forum.

Having a condition that is not well known even in the medical community is frustrating to say the least....and you find that you will know more about it then the Drs you are visiting....and some will tell you that it is not what is causing your issues...and I can not tell you why, I can speculate it is ego, they do not like us knowing about it and they won't admit that they are not up to speed on it to treat us .
All that aside, you will also find that we do not all share the same symptoms and issues....some have had multiple surgeries , while other having had any or just one surgery....

Educate yourself , and research Drs.....finding the right Dr is key....I know you are limited to who you can see and we do not have a Dr listed for your state....we do have one listed for West Virginia....not sure if you can venture there with your insurance....so, you may want to look into Clinical trials....sometimes if they are running one and you fit the category you may be able to get treatment at no cost....only thing is, you have to participate in the studies, and it is not the same as just going to get treatment.....but some have opted to try it....or look into it.

You have mentioned some symptoms I have not heard before, and like I said we are all different....family history is part of that even if they do not have Chiari, we can have other unrelated issues or should I say uncommon for others with Chiari to also have...so do some research into your families medical history as well, it may help you figure out what all is Chiari and what is part of your genes from your family....and you may find  another family member with Chiari or a related condition.

For example,  I found out recently that my father also has Ehlers-Danlos...a related Chiari condition which I also have , as well as my siblings....I have a cousin with spina bifida, another Chiari related condition and my nieces have POTS< yup another related condition....so look at your family you may be surprised to find out whom else has some related issues to yours.

Keep pushing for those MRI's , they are important and ask for copies when you go for the testing , they should supply you with a disk and you can also request a copy of the written report so you have it to take to any Dr you want to see....but be sure to ask at the facility doing the testing, your Dr will charge you for making copies, the facility usually does not.

I know I have not responded to all you posted above, it is quite the list....so after reading my reply, please feel free to ask questions I missed.....it will be easier to do one or two at a time....

Remember you are not alone in all of this....and keep pushing for answers.
Avatar universal
Thank you selma for getting back to me. I am definitely going to advocate for myself and rule out all possibilities until I figure out what's wrong with me. Thank you for taking the time to read all of this. I have couple hunches on what is going on. I am lucky to have PCP who is willing to listen to me and help me as much as she can.
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2 Comments
Please keep us posted in what you find out....and how you are doing.
Hi Selma, Update is below. I do not think I have EDS, just after reading the symptoms and matching mine. Some do correlate, but I am not hypermobile, or bruise easily, or have collagen affect. But I am planning to get a x ray, the digital moving kind before any surgeries. This will rule out craniocervical instability, which i notice a lot of bone diseases (RA, pagets, etc) or connective tissue disordered pts (eds, etc.) have. Not all, but some just incase I need to consider adding the cervical fusion, though the outcomes are not always favorable. Thank you for always being a listening ear on these forums!
Avatar universal
Update: Symptoms are crazy wild. Chiari is crazy lol. Sorry I have to laugh because this disease is a beast. After lurking through the forums here and running through extensive research on the internet. I realized. Yes, I think it's all related to chiari.

Only reason why is because I am having vision issues: block dots, floaters, strobing lights, jumping objects, etc.

Also, my newest symptom is hearing loss. It comes and goes, or i think its getting worse. I notice in the tv, the same levels I used to hear I no longer can hear at those levels. My ears get numb when I lie down, it all started when I felt a heaviness or fullness in them. Always thought it was my ear wax, but this is different.

I also have myoclonus. I always had this to be honest, always heard strange sounds when asleep, but finally caught it. It was in my soft palate and palate, now it moved onto my ears and lower throat.  Its bothersome, but i have lived with it.

I got the cine flow study done. The doctors here can't seem to understand anything. I am stuck on medicaid and limited to resources. With the sensory loss and hearing problems, my chiari is progressing at fast rate. I need a good NS who can read these images and detect csf leak or syrinx, etc.

Also, I suspect I have what they call pistoning tonsils. Now it makes sense, I get these throbbing pumps like headaches from the back of my head and it matches my myoclonus and neck tremor, chiari is so complex, I know its all related.

Question: does anyone symptoms ever get worse with heat or cold temperatures? I noticed that's when the numbness in ky head and ears come on.

Anyone know a good NS in the Virginia Area? Limited to medicaid. I have read so much on surgery, I wanted to see Dr Gilmer in Michigan or Dr Oro, but the way things are speeding up and not being able to find a job before my hearing becomes so impaired I won't be able to do most jobs. I tried to get job so I can get insurance to go out of state to see the top specialist, but luck is not on my side, unfortunately.

Also, for pistoning chiari--what's the best surgery?

So far, I wanted a doctor who had intraoperative MRI, surgeries done under that have better outcome.  I also heard duraplasty has better outcome, but it depends on the graft material, I wanted get one done where they use something from your own body, less chances of getting syrinx.  I got my notes, research and **** together, I just need doctor who is on the same page as me and listens to me. LOL as you can see I am detail freak so hopefully they answer all my questions. It's my brain we are talking about.
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Hi.....I am going to try to answer your questions, but I may miss one or two....

As  for the dura patch, IF you also have Ehlers-Danlos Syndrome you can have an issue with the patch if it is made of something other than your own tissues.....the patch using your own tissues does not give a lesser chance of a syrinx, but less of a chance of your body rejecting it as it is foreign material. Our bodies (those with EDS) will over produce CSF to flush the foreign material out....and many Drs think we have developed ICP and then the "fix" is a shunt....which can continue to cause more issues...as it is more foreign material and they block and can malfunction.

Surgery to unblock the CSF flow is what can reduce the  formation of a syrinx.

We do not have any Drs listed for Virginia....we have one for W. Virginia....DO you know if you can  go to another state? If not, you may want to look into clinical trials.

There is one surgery, and it is for those that have a CSF obstruction.....most times that could be why your tonsils piston. It is the disruption of CSF flow.

Many things can affect symptoms and the temp is one that always affected me.

I get a lot of different visual disturbances too.

When you are in a flare ( Chiari symptoms cycle/flare) it is best to do your best to relax...the more stressed you become the worse your flare will be.

Hope I got most of them...and I hope this helps you.
Selma,

You answered all my questions. Not missing one :) Thank YOU!

I am shopping around in the next two weeks for NS, I have seen some reviews via google comments about people having success with some of these doctors regarding PFD, but I am interested to know their processes are they dura or not? Will the consider the other morbidities that go along with this complex disease such as EDS, BI, CCI, etc.

But knowing my thorough mind--- I will be able to tell from how they answer my questions.

I see my PCP Friday, I want to talk to her about EDS, how do most people get diagnosed? What was your journey in ruling this out?

Yeah, I get stressed super quick. I can feel the back of my head vibrating or going numb when I do that. I think I may have progressed things due to sometimes dealing with anxiety due to this.

I wish I can go outside of state, but medicaid won't let me. I tried, still looking for job but my hearing has been issue. So, I'm just praying time is kind to me, worried I can loose hearing. I can hear fine, it just goes numb sometimes, and when it does, I notice certain levels of noise I do not hear the same as before. It started with the ringing in my ear, but that has decreased--as if my own ear cannot hear the ringing itself.

Thank you for everything! Did you get a dura or know others who did?
The decompression surgery that is done with out opening the dura is typically done on children as they feel it is a less invasive for the age to do one without opening the dura......
Once open, a patch is needed. And as I mentioned above, those with EDS are more likely to have an issue with the dura patch that is not their own tissue but one of either bovine, synthetic or cadaver.
The neurologist that worked with my surgeon during the testing process diagnosed me with EDS.

I have had ringing in my ears and continue to have it ....my surgery was in '09 so I do not think it will ever go away....and that is something you must also realize , is that surgery may not relieve you of your current symptoms, surgery is only done to restore CSF flow and reduce the possibility of a syrinx forming....some symptoms may lessen or go away, and they may not.

I am not sure what you mean did I get dura....but my dura was opened and I did have my own tissues harvested for my dura patch.

Have you looked into clinical trials?
Okay, that makes since. Sorry, for the weird typo-- I meant did you get a patch or not, or know others who have?

I am actually googling clinical trials right now.

Yeah, I know most of my symptoms will not go away. The point of the surgery is to stop the progression of the symptoms, that's only if I need it.

I think what is going to help is once I meet with someone who can explain the images to me thoroughly then that will drive me to either do surgery or not.

I also should mention--

I only had shooting pains in the past but after this summer.  I got the covid vaccine and then my ENT and I have been monitoring my lymph nodes. So, I was due for a CT scan and it was with contrast.

Ever since I got home from that scan, I have been having such issues, still do not know if the vaccine triggered further chiari symptoms or something else entirely.

I also developed thyroid issues, my ENDO and I have been monitoring my blood work... no immune issues, but i started from subclinical hyperthyroidism  during june-sept (symptoms started in june,) Then september is when it went into sub-hypothyroidism. I am due for test soon.  (That's when the ringing started).

My doctor thinks I got thyroid inflammation that might resolve itself and probably was triggered by the vaccine, no evidence on that yet, but she had a lot of patients who developed thyroid issues after the vaccine.

I know hypothyroidism can cause ringing in ears. So, there is chance my subclinical hypothyroidism can become full on hypothyroidism... Hence another reason why I am not in rush for surgery because hypothyroidism can do a lot strange things. Like ear issues, tingling and numbness, etc.

If I do need treatment and maybe it helps that would be great if not, it could be something else.

I will keep you updated and update this thread if I find good NS if anyone who needs it. Thanks again!



Avatar universal
Question: can you have sensory issues without a synrix?

I been loosing my ability to tell if things are hot or cold. Temperature issues, touch is decreasing, sharpness decreasing.

It all started in late august with shooting pains here and there, then it became eltric shock sensations from the neck down to limbs, then prickling sensations, then tingling, now I can't process sensory things the same like: touch, temp. etc.

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From what I understand as a layman, it is typically a syrinx or something compressing the spinal cord that causes those sensory issues....the other issue can also be deferred....coming from a different area/location of the spine.....??
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