so much to think about!

[pdxmomof3boys]

I started getting really horrible headaches in June. The kind that start at the back of my head and shoot to my eyes and leave me on the floor sobbing. SO painful. I've labored with 3 kids, had a kidney stone and a 9 mm gall stone and NOTHING has ever caused me so much pain. I get numbness and pain in my arms with the headaches, and sometimes without. My face hurts and is tingling all the time, with lots of pressure. The NS I saw yesterday told me that I have Chiari 1, with 5 mm of herniation, but my c.tonsils are impacted all the way around, without relief. I am being scheduled for an MRI of my spine to check for any syrynxs. Dr. Gore at Providence Medical Center, and he seems pretty confident in what he knows about Chiari. But he can't tell me for sure if my other symptoms are caused by the chiari or not. That's what I need your help with. I am also looking to find out how much relief I will have after surgery.

Since I was a teen I have had otherwise unexplained pains in my arms, hands, neck, ears and face. The doctors told me sinusitis, muscle tension, arthritis, but not one of those things was accurate. 3 years ago after I had my 2nd son I saw the doctor about tingling in my back and she told me muscle tension. I've lived with that for 3 years with no relief. I also snore so horribly, but have no tonsils/adenoids. I am ALWAYS tired and can fall asleep anywhere (like in the waiting room yesterday). I used to be a super-energetic mommy who could play and run and bake cookies all day long -- I am so lethargic now! I would like to know if THESE symptoms are commonly associated with Chiari. From the research I have done, some list these as symptoms, others do not. I know it is hard to say, especially without the rest of the information about my spine, but I am just trying to prepare myself for my next appointment on 11/10.

I am also curious about the onset of symptoms. The headaches started in June, but all of my other symptoms have been around awhile. Is this common? Possible? The NS offered decompression surgery, and my husband wants me to do it (because he has seen me on the floor sobbing) but I am hesitant. My headaches are episodic, brought on my coughing, laughing, raising my voice (I'm a teacher, so I do that a lot!). But he will have to take out part of my skull all the way around my brain stem because of the way the compression is. I am really hesitant to do it, if it will not eliminate all of my symptoms. I'm considering it. Since I don't usually complain, my family is wondering why I suddenly need brain surgery for a headache.

I live in Portland, OR and have taken down 3 names for Chiari specialists in WA. Anyone know of a dr. in Portland that specializes? I'd love to hear from you :)

Thank you!

[selmaS]

Hi...we do have a thread here titled how many zipperheads...u can see who has had the surgery and read about their experiences.I also have a journal u can read on my experience.

No one can say what u may find as relief.....I am still finding out what mine benefits r.....still have the loss of words...ringing in my ears, I sleep better, but my symptoms are still cycling as I understand it is a normal thing...none r as bad as b4 surgery tho....I do feel clearer.Most of my reg HA's r gone...get a HA once ina while not as bad as they were b4.Not all symptoms go away....and it is an individual basis.

My jaw pain is not there on a reg basis...did notice it when I got stressed, but didn't last long.....not sure if that helps.

But do see the zipperhead thread and feel free to see my profile for my info....

"selma"

and u can ask direct questions to ne member,

[pdxmomof3boys]

Thank you so much for that list! It is so helpful! I've done a bit more research and it seems like all of my various symptoms are shared with at least a small group of others. My BIGGEST question is: if I do the decompression surgery, will these symptoms go away? I want the headaches gone, of course, but the other things too! I'd like to get a good night's sleep and feel RESTED in the morning. I'd like my ears and face to stop hurting so bad. And my throat to not be so swollen and my voice to stop going all croaky!I used to be quick witted and say the greatest things and now I find that words slur out of my mouth and dont sound nearly as clever + sometimes my words even come out in the wrong order! I used to think sleep deprivation :) Id really love to hear from people who have had the surgery regarding which symptoms were relieved and which remain

I feel so fortunate to have found this site!

[redkim]

List of symptoms I have found:

Chiari Symptoms


Things to Consider
Tethered Cord
Syringomyelia

 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 / jaw line
 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 extremeties / 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
 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

[rod44]

Hi,
I can identify with the feeling of relief, I felt the same when DX’t but was shocked that my gp and some of the other Doctors I was dealing with were not aware what CM was. Not very inspiring lol!!
Ray

[pdxmomof3boys]

Oh, and no trauma that brought the headaches on. I developed cough variant asthma, according to the pulmonologist I saw a month ago. The chronic dry cough brought on the headaches, and then they just kept coming. The cough was pretty traumatic at times, so I guess it must have been horrible enough to trigger symptoms.

My doctor told me I had anxiety that caused my cough, because it made me short of breath. She wanted to give me anti-anxiety meds. At least I knew enough to not take them. She even kind of scoffed at me for having a CT done when I went in the other day -- now she feels awful because she saw the MRI that showed the CM.

Have you ever heard of CM causing trouble breathing? Shortness of breath, etc? Did you see an ear specialist about the stabbing pains in your ears, or did the surgery help with that? Right now my head hurts and I feel like someone is taking an ice pick to my ears -- while sitting on my face. Ugh.

[pdxmomof3boys]

Thank you for your comments. Hopefully my MRI will be scheduled soon and after my appt with the ns I saw yesterday I will know more. I agree about finding a specialist, and I am searching for one right now. I will check with my insurance company about getting authorization to see Dr. Oro. Do you think he would do a consultation over the phone if I had my images sent? I work and have 3 small children. It would be really difficult for me to fly out.

I will check out your profile journal. Let me know if you come up with anything else! When I started to read about Chiari a few weeks ago I started crying because I felt RELIEVED that everything I had been experiencing my whole life had one answer. Even with the pain, it helps so much to have a name for it!

Thanks again to you both :)

[selmaS]

HI and welcome to the chiari forum.

Ray gave u some good things to consider....u deff want to get the MRI's and yes ur symptoms do sound like they r either chiari or chiari related.We tend to be prone to autoimmune disorders and some of the symptoms could be from those conditions as well.Like RA....DDD....hashimoto's thyroiditis....Ehlers-Danlos syndrome and more....

Many chiarians are suffering from insomnia...and sleep apnea.....which doesn't help when u have pain.

Did u have a CINE MRI as of yet?this looks for a CSF blockage, and with the overcrowding u described sounds like u may have a blockage.

As for a chiari specialist in WA...not really we have a member up in Portland and has not had successful with the drs there....can u get to CO to see Dr Oro?

Many of us do have to travel to get to a true chiari specialist...not all NS are specialists in chiari, but can and do the surgery.....I feel this is too specialized to leave to a novice and chose to see a chiari NS....and am happy woith my results. U can see my experience with my surgery in my profile journal.....

We will help u locate a dr and please research all drs names listed newhere as I said they can be a NS but u want a true chairi specialist.

"selma"

[rod44]

Hi and welcome,
You need those cervical MRI’s to rule out Syrinx and other issues related to your CM. surgery is NOT a cure but helps to prevent your symptoms from progressing.
Did you have an accident or trauma that may have caused your resent onset or worsening of your symptoms?
The symptoms you describe are common symptoms of CM, CM symptoms are many, varied and for the most part vague and come in cycles from my experience, this causes problems for doctors as it is hard to pin these symptoms to CM spiffily .

Ray