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.
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.