I have a huge lump like feeling in my right neck area and they cannot find anything wrong on the ultrasound. Or the MRI (except the Chiari I of 6mm). Is this symptom of feeling a lump that "grows" in pressure part of the Chiari? I feel miserable and the pain radiates to my face and eye as the day progresses. I sound like I have a cold too.
I forgot to say that the pressure is in my ears and goes further down the throat area (really feels like something is behind the throat pushing on it) as the day goes on.
I feel nauseous and have heart burn too.
Feeling pretty bad right now.
Hi Abby,
No, the lump has been there awhile now but is getting worse.
The Dr. said she cannot see anything there. First they said it was an enlarged lymph node and then they called back to say it was not even enlarged at all. So, no one seems to know what it is. I don't have a cold: I just sound as though I do. The allergist said I don't even have allergies. The lump hurts really badly. And the pressure is so bad it feels like it will explode my head. I told the Dr's Office and they said they would call me back. The pain is in my right side of my head now too. I wish they would just fix it! Lol This is really bad. I can swallow though it's in the area where you swallow but doesn't affect it at all. Weird. Well, I may just try to go and rest. I dunno what else to do.
Thanks for the reply! I appreciate it. :-)
Thanks Abby. You are very kind to respond. I am just so mad at the Dr right now. I feel crappy. I will try to keep my chin up. Thanks for your support! I didn't know that it was part of Chiari. They won't see me til Nov so I have no idea. Google is confusing when you try to look up symptoms. I did not find any that mention it. But all the people who have it say it is! Weird, huh? Sometimes Drs get on my nerves. Please forgive me if I have been rude. It means the world to me to have someone just listen. Thank you so much!
:-)
I have this as well and I am 1 year post op. Not one doctor or chiropractor has ever been able to tell me what it is with absolute certainty. Out of all the opinions, the most common was that it was simply a neck bone. This is what I think now as well. I have also recently found out how to resolve it but I don't think that I was able to do this pre-op.
Anyways, try this... put your finger on the bump so you can keep track of it. Then sit up straight with proper posture. And lastly (this is where I noticed the big difference) lift your chin up. If this worked then you are probably like me and have bad forward head posture. My only question is... Is this bump actually getting bigger or just becoming more pronounced and tender? I am going to see my NS on Sept.16th about this because i think this is a sign that I should be wearing some sort of collar like an Aspen-Vista because that posture i just described to you feels great and yet no matter what I do, I can't maintain it for more than a minute. Hope this helps, and I'll be back to share the results of my NS visit :) much love<3
No, the bump is not getting bigger it just seems to get worse in terms of pressure. When I wake up it's not too bad and then by noon it starts to really hurt!
I am so glad to know that it helped you to do that. I will try it. I know that so far some ibuprofen has helped take the edge off. I just tried what you said and I still feel it but not as much. I dunno if I did it right though so I will keep trying out various ways. It feels really heavy and has a lot of pressure. I was so amazed that they did not find anything! They found stuff wrong with my vertebrae on the right side (where the lump is) but no one has discussed it with me and I dunno what all that means on the report (sometimes they sound bad and are quite normal so...). I look forward to future posts and updates . Thanks! I will also write this down and ask my Dr. about it.
Bill Zern said:
I have this as well and I am 1 year post op. Not one doctor or chiropractor has ever been able to tell me what it is with absolute certainty. Out of all the opinions, the most common was that it was simply a neck bone. This is what I think now as well. I have also recently found out how to resolve it but I don't think that I was able to do this pre-op.
Anyways, try this... put your finger on the bump so you can keep track of it. Then sit up straight with proper posture. And lastly (this is where I noticed the big difference) lift your chin up. If this worked then you are probably like me and have bad forward head posture. My only question is... Is this bump actually getting bigger or just becoming more pronounced and tender? I am going to see my NS on Sept.16th about this because i think this is a sign that I should be wearing some sort of collar like an Aspen-Vista because that posture i just described to you feels great and yet no matter what I do, I can't maintain it for more than a minute. Hope this helps, and I'll be back to share the results of my NS visit :) much love<3
Wow! I have so many of these things and the lump in my throat and pain and pressure in the lump are def'n on this list. I am hopeful that this will help when trying to explain to the NL my symptoms. I will check off all the things that are bothering me. This is really horrible and seems to migrate a little bit from where it start off in the morning. Weird. Thanks so much for this it's so helpful! :-)
Abby said:
CM1 (Chiari Malformation) Symptoms List
The list below attempts to put symptoms in the order of importance but, it is difficult to say with certainty which symptoms are more common than others. There have been no formal or controlled studies of the percentages of patients that suffer from each symptom. In addition, symptoms may differ from patient to patient depending on where pressure is exerted (i.e. whether tonsillar descent is causing pressure on the brainstem or not, whether syrinx exists, etc).
In general, people without herniation may not suffer symptoms associated with brainstem compression but, rather, with lack of CSF flow and raised ICP. These symptoms tend to mirror those of PTC and include some of the ones listed below.Kriss notes that she's made the symptoms she's experienced/is experiencing bold & green in this list. Obviously some things in this list could also be attributed to other things...but they all are attributable to Chiari Malformations and related issues as well. She also notes that this list was put together from multiple sources on the internet, & while no Chiari knowledgable doctor has ever told her this list had incorrect info on it, it isn't a substitute for any other official website, just an attempt to make what is often a very chaotic thing to try & get a handle on, a little easier to look at & think about.
_ Headache (esp. if daily or at lower back of head)
_ Painful tension in neck
_ Fatigue
_ Migraines
_ Dizziness
_ Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
_ Tingling / numbness in the extremities
_ General imbalance / clumsiness
_ Memory loss
_ Restricted movement
_ Intolerance to bright light / difficulty adjusting to light change
_ Vertigo from position change or sudden standing
_ Difficulty walking on uneven ground / feeling ground under feet
_ Poor / degraded motor skills
_ Difficulty driving
_ Difficulty negotiating steps
_ Pressure / pain in the neck
_ Pressure / pain behind the eyes (soreness in the eyeballs)
_ Back pain
_ Neck spasms
_ Insomnia
_ Ringing in ears (like the tone heard in a hearing test)
_ Swaying
_ Pain when changing position
_ Tingling / crawling feeling on scalp
_ Intolerance to loud / confusing sounds_ Decreased sensation to touch in extremities
_ Decreased sensitivity to temperature
_ Pain & tension along ear / eye / jawline
_ Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
_ Drooling
_ Spontaneous vertigo
_ Hand tremors
_ Poor blood circulation / cold hands & feet
_ Sinus / mucous problems
_ Sleep apnea
_ Decreased muscle tone
_ Pressure in ears / ears feel stopped up
_ Nausea
_ Difficulty reading / focusing on text
_ Depth perception problems
_ Burning sensation in extremities / shoulder blades
_ Menstrual problems / severe cramping during period
_ Fluid-like sound in ears (like water running)
_ Loss of sexual interest / lack of sensation in pelvic area
_ Pulling sensation while sitting / standing
_ Intense itchiness w/profuse sweating
_ Slurred speech
_ Gag reflex problems / lack of gag reflex
_ Pressure / tightness in chest
_ Loss of bladder control
_ Frequent urination
_ Dehydration / excessive thirst
_ Electric like burning sensations
_ Unequal pupil size
_ Loss of taste
_ Popping / cracking sounds in neck or upper back when stretching
_ Dizziness
_ Loss of smell / problems with sense of smell
_ Dry skin and lips
_ Sudden / abrupt changes in blood pressure due to awkward position of head
_ Hiccups associated with drinking carbonated beverages
_ Skin problems
Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astigmatism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints.
Lump Update: traveled down the esophagus and then stayed waaay down there and I felt okay.
The lump stayed tolerable for 3 days!
Now it's climbing back up my throat. This is odd.
I am taking a 14 day course of Prilosec (my Dr wants me to anyway) to see if it's from heartburn or reflux or whatever.
I just hope it works cuz it really hurts.
I also hope this helps someone else. So, I will report back in 14 days (or if it gets worse or better sooner).
Thanks so much to all of you who posted regarding this: I appreciate a venue where I can be heard without judgment. :-))
No, not yet. I just called cuz it is really starting to feel like I am strangling (except I can breathe and swallow just fine).
It is a weird feeling.
So, I have an ENT appt on Mon @ 4pm.
And I asked about bumping up my Neuro Appt.
And also asked why I was not referred to the Chiari Specialist in my area.
The Dr. will call back with answers to those questions. They are very good about that usually.
Okay, now the lump is causing me to feel like I have to throw up and I keep burping little tiny burps every so often.
But, they don't relieve the choking/lump feeling.
Ugh..appt with ENT on Monday.
I am going to call and see if they can take me tomorrow.
I also have a headache and my ears hurt.
I have an appt with a different neurosurgeon tomorrow!
Wow! That is quick! Dr Bejji I think is his name.
Supposed to be very good. I am lucky he has an office 15 min away from my house.
My bf will be coming with me as I tend to forget things I want to say and questions I want to ask.
Never been to this type of appt.
What should I expect? Any suggestions?
I hope we can get rid of the lump/strangle sensation in my throat. I can't eat well, head hurts, ears hurt and burping with nausea. Ugh...only on the right side which is weird. Except the burps: they are kinda from both sides. ;-)
So, I went to the Chiari Neurosurgeon and he said the lump could or could not be Chiari.
I have started Prilosec and have an appt with the ENT Dr. Monday.
I think in my case it may either be the Chiari or it is Silent Reflux.
I am only 2 days into the 14 day course of Prilosec and the lump is almost entirely gone.
Not so with the rest of the stuff: headaches, dizzy etc...you know the Chiari symptoms.
I am scheduled for surgery on Nov 4th (I could have taken next Wed but I am REALLY into Halloween and I have been planning my party for over 2 years! Finally got the money and my sister is flying out for it from CA so...gone grin and bear it for that). :-)