5 months to the day since surgery!

Not sure who all remembers us so I started at the beginning to where we currently are.
DD was diagnosed on April 16, 2013. Her first MRI results were: “the cerebellar tonsils extend 12 mm below the foramen magum. There is mild to moderately restricted CSF flow anteriorly and moderately restricted flow posteriorly at the foramen magnum. 7mm linear area of bright signal in the spinal cord at the C3 level. This could represent a tiny syrinx." Her symptoms were nausea, double/blurry vision, tingle/burning in hands and feet, difficulty finding the words she wanted to use, swelling in her face and hands, balance issues, falling down, dizziness, lightheaded when raising hands over head (i.e. washing hair), neck and upper back/should pain.

Met with the Neurosurgeon on May 2, 2013 and had surgery on June 11, 2013.

After surgery she continued to have many of the same symptoms that she did before surgery which include nausea, double/blurry vision, balance issues, falling, swelling in her face and hands, and severe headaches (to the point of throwing up).

She was referred to Neurologist. He said she exhibited deficits which would correspond with the C3 level of the spine. He was also concerned about high pressures in her head because he could not see her optic nerve and sent her to be checked by an ophthalmologist.

He also sent her for another round of MRI’s, which I did not get a copy of. Those MRI’s said ‘everything was fine’ and the Neurologists answer was to put her on the below medications with NOTHING for pain, at all.

I used to be a professional dog trainer. When DD started having problems with balance and falling I started training a service dog for her for mobility and balance after coming home one day to find DD crawling to the bathroom because her head hurt so bad she could not see and no one was home to help her (she was left alone for 15 mintues). The Neuro told me that not only would he not give me a letter stating that DD had a medical disability but he did not want me to provide a service dog for DD because “she needs to learn to do it on her own with no help”

The ophthalmologist said her vision is 20/20 and he did not see any signs of high pressure but did say the only way to rule out high pressure is to do a spinal tap. He also said that some of her symptoms (sensitivity to light/sounds/smells, seeing rings around things) were due to migraines, which makes sense since we already have that diagnosis for her.

We self-referred DD to the Chiari Clinic in Seattle, WA. They sent her for a CINE MRI. The results of that were there is diminished CSF flow to her brain and the left frontal lobe of her brain appears to be slumping down towards the base of her skull. Hubby took that phone call so I’m not sure on the specifics of what they said and now you all know why I usually do doctor visits lol

We are currently waiting for the Chiari Clinic to call us about the date and time of our appointment with Dr. Ellensbogen

The only medications that she is currently taking is Amitriptaline, Zonisamide, and Zofran. I was told to give her up to 3,000 mg of Tylenol for pain, which I am not comfortable with and it does not work anyway.

I’m really tired of hearing “this is out of my scope of practice” or “I’m not comfortable providing pain relief” and I know DD is tired of being treated like she’s faking or not having as many problems as she is. As I am sure you have all experienced the MRI that said everything is fine basically had the Neurologist acting like she is fine with a little PT/OT and medication (but nothing for pain mind you) she’ll be fine to go to school and live her life.

Wow, I am so sorry that you have been through such an ordeal.

I think that an assistance dog would be wonderful for DD! Assistance dogs dont take over & do things without command! The interaction with the dog could help keep yoir DD's spirits up...can I say I dont agree with the neurologist re the dog!

I hope things go DD's way. I think I treated myself like a fake for a long time....people look at us & they say we look well! It is frustrating! I wish for good help for DD.

Oh my is right!!! (I do remember you guys)You must be so frustrated!!! I’m not related, I don’t even have kids and I’m ANGRY! I would not assume that the second round of MRIs were normal, according to the neurologist. You have a right to ask for the reports and I would so you have a clearer picture of her progression. You have done the right thing by self referring to The Chiari clinic. I assume they will see her soon and I hope so, she has been suffering. I have no words for these professionals who have been overseeing her, but I do have words for DD and you… I think help is definitely on the way. Just keep in there for bit longer. We all want to see her get the help she needs and can’t wait to hear that they’ve got it figured out and have a plan. For the interim, do you think the neurologist would be open to hearing that she needs pain medication- tylenol didn’t work for me either it was a waste of time. I’m so sorry for DD please give her a hug from me.

Jenn