Chiari Symptoms

http://www.chiarione.org/symptoms.html

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.

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 extremeties
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 extremeties
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 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
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, astymosism, 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.

Final approval for surgery....

I got an email, late last night, from Dr B. in New York. The medical review board at The Chiari Institute has approved my surgery. I have to do two things before we can schedule. They require a psych review and they want another spinal tap to make sure that there is no lingering infection. Remember, I had some kind of infection on 4-29-2010? The dr's in NY thought that maybe it could have been fungal? So they want to make sure that is all gone before opening up the dura mater. So let me give you a quick and dirty on the surgery that I will have. They will be doing a release of the connective tissue at the base of the spinal cord. They will cut externally approx 2 inches. Internally, the dura mater will be cut approx 1 cm. This is much improved over just two short years ago. My surgery will be approx 2.5 hours. When my sister had the surgery, it was about 8 hours long, her external incision was approx 6 inches and internal incision was about 2 inches. Boy, what a change in two years! Imagine in another two years! I will be in a medically induced coma for 24 hours, be in the ICU for approx 3 days, and on the regular medical ward for another few days. Then I will fly home go directly into Mountain Valley Rehab. I will be there as long as I am improving daily. So, one-two weeks?

I have a call into my neurologist for the spinal tap and have an appointment for a psychologist workup in the AM. So, as soon as I have both completed, I will call to have my surgery scheduled. Woo Hoo! We are really on the fast track now!

Last night I could not sleep so I went online to search more on the diagnosis of Ehlers-Danlos Syndrome. I was able to find that the Mayo Clinic in the Valley has specialists in EDS. So, I requested an appointment. Hopefully, I can get in to see them soon for braces to keep my knees and fingers from dislocating. That will be a great relief from pain. Another upside, is that the doctors with treat my pain with this diagnosis! Yay! Sometimes it is nice to have answers to a long life of pain. I read a shocking statistic last night. 70% of suicide victims are due to chronic pain. That is a major problem. Please, if you are a healthcare provider, a nurse, or in any position to help, please believe people when they say they are in pain. When I would say I hurt, It was a 10/10. I never complained because I was always told I was just tired, I was a busy mother, I just needed to rest, I was anxious, the mind is a powerful thing, etc....So I NEVER SAID ANYTHING. I did not want the stigma of being CRAZY!

If you would like to make a donation to the Kelli Carter Medical Donation Fund, click ont he button below:

PayPal donation button!

When you click on the above button, you can make a donation directly into my medical donation account! Just figured it out. Sorry it took me so long. It is very difficult for me to read through it. Normal things take me three times as long as they used too. Many people have asked me to do this. So here goes.....

Benefit fun

Below: Todd, Memphis, and I. She is riding on my walker and loving it! (I also put the flower in her hair, too cute.)

I am not sure of the exact number but I think there was near 70 people at my medical benefit dinner. WOW! I am also not sure of the number of items I had for silent auction but they helped out tremendously. That is where I really made the most money towards my medical fund. The Tim Cox painting brought in $400.00. Amazing that those nice people were kind enough to donate it to our family. My mother-in-law bought it and will proudly display it in the house on our family ranch, Square M Ranch in Kirkland, AZ. My daddy also made a really cool wok out of a plow disk and horse shoes. People were really excited about that. My friend Christie got it and is torn between putting it up on the wall or actually using it. Maybe she can do both but not at the same time. hee hee. Here is a big THANK YOU for all the hard work of my family and friends, for all the donations, and for all those that showed up in support of our family! The Wyndham in Prescott is beautiful. The rooms have been remodeled and are really a good size. They went above and beyond to treat us like ROCK STARS! When you stay there, you get one free drink in the bar, 15% off your dinner in the restaurant, and a free real breakfast of your choice! Please support them if you have any family coming into town. They did great! They even donated 4 rooms to us. AMAZING! They are already working with Christie and Traci about a bike run sometime in October as a fundraiser. I stayed up until 2:45 with close friends chatting up a storm. However, I am still paying for that. I have not gotten out of bed much in the last 30 hours. Every joint in my body is screaming at me! That is okay though, it was so worth it!

Tomorrow is the medical benefit dinner!

PrescottNightOut.com
(A website that promotes bands and plans events. Please go check out their website and use them for any events you may have coming up)

PrescottNightOut.com is having it’s official launch party and a medical benefit for

Kelli Carter, a local VA nurse

Wyndham Garden Hotel in Prescott, AZ
Call today for special room rates of $69! But hurry, rooms will be going fast!
4499 East State Route 69Prescott, AZ 86301(928) 777-0770

Saturday August 28th, 2010

Dinner Party- 7pm-?
$20/person
Dancing
Live entertainment
Three coarse meal with soft drink Silent auction
Door Prizes
Much, much, more!

Entertainment line up…..
Cory Speight
Brooke James
Sarah McCallister
Random Temple
Ikaika Beamer (Fying in all the way from Hawaii) *check him out on YouTube
Who knows who else may just show up?

Thank you to the following sponsors!
Wyndham Garden Hotel Prescott
PrescottNightOut.Com
Windmill Boys Catering
Arizona Screen Printing LLC
High Dessert Automotive Repair
**Without our sponsors, this event could not have happened.

If you would like to donate items to the silent auction, please call 623-221-3356 or email Kelli at KNitschke@hotmail.com. As always, Thank you! *ALL PROCEEDS WILL GO TO KELLI CARTER’S MEDICAL FUND. Kelli Carter is a local VA nurse that suffers from a congenital disorder that was aggravated by meningitis and must travel to New York for pre-op evaluation and neurosurgery. This condition is so rare that it is an out-of-network surgery. We would like to thank you , in advance, for your support.

If you are unable to attend but would like to contribute:
An account has been set up at Arizona State Savings and Credit Union
Account # 450139781

1335 Gail Gardner Way Prescott, AZ 86305

NYC trip continued....

Kristi, me, Dondi, Traci

NYC trip continued...

We finally got in bed around 0245 am New York time. I think we were asleep before our head hit the pillow. But, before that, we stripped the beds and sprayed everything with Lysol. Of coarse, there is a huge breakout of bedbugs right now in NYC. WTH? Luckily, we did not have bed bugs, that we know of.... But our phone, remote, tables, etc where cleaned with Lysol. Dondi and I are two peas in a pod in more ways than one. Then the next morning, we wake up, sit up, look at one another and just giggle. We both have very stiff backs and necks. It was like looking in a flippin mirror. "You girls don't mind if I drive today" Justin says kind of quietly and timidly. Dondi and I just find that the funniest thing in the world. Did he accidentally spill water on me and I multiplied in the middle of the night, like the Gremlins? See, I talk to Dondi a lot on the phone but I have not seen her but once or twice in two years. It did not take me long to realize that I FOR SURE HAD THE SAME THING AS SHE DOES. We have the same protective mannerisms. For example, we both hold our heads near our ears in an upward position to relieve pressure. That helps with the cerebral spinal fluid flow in the back of the skull. We both hold our heads above our eyes. And many other things that we do the same. Frankly, I think it scared the hell out of Justin from the first few minutes that we were around Dondi. He also realized quickly that I had the same thing. He did not need all the fancy tests to tell us that. Now, keep in mind that my sister suffered for a much longer time in silence without help before she finally got to the Chiari Institute. She was much sicker than I am. Although, at times, it does not feel like it. I have some other weird, rare, symptoms that the doctor's are not sure about. They think that maybe I may have had a fungal meningitis or have an autoimmune illness along with Chiari and Tethered cord. OK. So back to Day one of testing. We are in the waiting room. Dondi and I are waiting room and we are so similar looking and in mannerisms that a man asked us if we are twins! She was very happy. She is 10 years older but we do look a lot alike. One time I was asleep on her couch and I awoke to her kids arguing if I was their mom or aunt Kelli. So, we must really look alike for her kids to think that.

I had to have tons and tons of testing. I had MRI's after MRI's, CSF fluid flow checks, 3d checks, x-rays that cross referenced to MRI's. It was about 3 hours of testing. This equipment blows any equipment in AZ out of the water. And, thank goodness, the medical facility was clean and open, unlike the prison looking airport. As many of you know, my body has tremors that I can not control. Much of the testing was flat on my back. A lot of the testing has to be re-done due to the uncontrolled body movement. The medical staff was really nice about it though.

The next day was the day I had been waiting for! When people finally get to the Chiari Institute, they are usually on their death bed. Luckily, I am not. I am in bed 24/7 though. That is because of my sister and my pure pushiness and nursing background. When I looked around at the other patients, they looked so bad. It is really sad. They have to wait on dr referrals or someone to help them. The sad part is that the dr's that are supposed to help them, know nothing about this illness. I have to do something about this! Anyway, as sick as I am, I am not as sick as them. Both the senior neurologist and senior neurosurgeon recommended surgery. They diagnosed me with Arnold Chiari 1 and tethered cord both. Just as I suspected 4 months ago. It is the same thing my sister has and it is genetic! I also have Ehlers-Danlos Syndrome. It is a inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels and other organs. It is makes your chances of having tethered cord, much higher. Finally, an explanation of why I have been a "circus freak" my whole life. :) I am hyperflexible. The doctors were really getting a kick out of this and I really did not know this was weird! ha ha ha. It also explains why my knees hurt. The ligaments are loose so the joints hurt, all the time! Wow, now I understand why I have not felt good my whole stinkin life!!!!! I know it is weird that I am happy they found something but it is just justification that it is not in my head.

So the medical board will be reviewing my case in two weeks. The neurosurgeon believes I will have a very good outcome. He said a positive outlook increases the outcome. Here comes the queen of positive!!!!!! Although, I do owe my husband and my sister a huge apology. I was so stressed out and upset. The whole trip I was a mess and grumpy. Hopefully they will forgive me and find it in their hearts to understand that. I have had a huge weight lifted. Now I am excited, I know that is weird, but I am excited for surgery! I can't wait!!

Have a wonderful and safe weekend. See some of you Saturday night at the Wyndham! I just got a signed Cardinal football and 4 really good D-backs tickets (with a choice of home games) for the silent auction to go along with the other really good stuff I already have!!!! Thanks everyone!!!!!

New York arrival

We made it! We made it to and from New York, in a marathon visit. We woke up Sunday morning at 0500, left at 0600 for a 1000 flight out of Phoenix. We had a planned 4 hour layover in Milwaukee that turned into 7. Two of which were on the tar mack. We arrived in NYC LaGuardia airport at 0130. LONG FREAKIN, FLIPPIN, DAY! When I was wheeled off the plane, I thought they had made a mistake and took me to a prison. The airport was small, dirty, and overcrowded at 0130! Oh, and it smelled like a sewer, forgot to mention that. So, we only had carry on, thank goodness. We head out to find our cabby that we had reserved. Wow, there are a sea of cabs....Which one is ours? "I am in the parking garage on the second floor". So my sister pushes me in the wheelchair like a real life frogger game accross the street. Horns are honking, cars are flying by, people everywhere. Did I mention this is 1:30 in the flippin morning? Why are this many people awake? We get in the elevator and get up to the second level of the parking garage and there is one other live person, what do you know--a cabby, but not our cabby. That would be too easy. "Why would a cab be meeting you here?" he said. What the hell? "You are a cabby" I thought....I start to tear up and cry...The cabby said pointing across the road and over back into the airport, "I think he means over there". Shit.....I have to play frogger again and risk my life! "I am at the end of my rope" I say in robot fashion. "Give me some back so I can just hang myself". Mind you, my sister is sick too. She does not feel that much better than me. Poor Justin, my hubby has two peas in a freakin pod. "Give me your phone!" I am going to call before we play frogger again and get all the way over there and find out we went to the wrong place again." I said almost incoherently (speech problem gets really bad when my I am tired and stressed, which I am both at this point). Dondi is almost in tears too. We go and find the cabby and he says, "I can tell you are not New Yorkers and you are not freaking out". The funny thing is that Dondi and I were so freaked and frazzled on the inside but apparently it did not show on the outside and we don't yell at others when we are stressed like New Yorkers might. To tell you the truth, that may be one of the most stressful times in my life! But we finally made it safe and sound to our hotel without much incident. And, much to my surprise, the hotel was pretty nice.

Tomorrow I will tell you more about the dr visits. Thank goodness the medical facilities did not look like the airport!