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25 May 2006
My 8 year old daughter, Chelsea was very healthy until October 6, 2005. She had a headache so we went to the eye doctor. After many tests and a medivac to Seattle from Anchorage, Alaska I was told she had hydrocephalus and a syringomyleoma. She was also diagnosed with a sagital sinus thrombosis.
We thought everything would be fine, they placed her on blood thinner put in a VP shunt and we headed home. She was so tired and in November it was discovered that her shunt was not placed correctly and she had a small subdural hematoma. We had a new shunt placed and she was taken off the blood thinners.
She was still so sick, tired and had headaches. She couldn't go to school all day, and was basically miserable. She would vomit and not be able to go out. We spent Christmas 2005 in Seattle for yet another shunt revision. Chelsea told me, "I want a healthy body for Christmas."
During this trip she was diagnoses with mutiple dural AVMs after a MRI and cerberal angiogram. She had over 20 that they could see. She had another small hemmorhage prior to this. We were scheduled to start embolizations on January 10, 2006.
She went back to school January 3, 2006 and stayed part of the day. I picked her up early January 4, 2006 because she had a headache. This was nothing we had not see before. She attended Girl Scout that night. The morning of January 5, 2006 she woke up and screamed she was going to die. That was 5 am.
By 7:20 a.m. she was in the operating room undergoing an emergency craniotomy. This was at the hospital I have worked at for 12 years as a RN. The staff was great and Chelsea got through the surgery. She died the next day after we took her life support on January 6, 2006. The pressure in her brain was to high and there was nothing that could be done.
I wanted to tell her story because not many people in Alaska and Washington refering to doctors had seen this before. God Bless.
Update: 1 June 2006
I can't believe that the docs in Seattle and Alaska used AVM and DAVF interchangably!!! It is quite a surprise. Chelsea's narrative is wrong. She had over 20 DAVF branching off her superior sagital and straight sinuses in her brain. She had total occlusion of the superior sagital sinus with a "old" (per the doctor) and fibrotic clot. It was at least "two years" according to her neurosurgeon.
She was shunted like I said, 3 times, October 13, 2005, Nov 19, 2005 and December 19, 2005. She had 3 small subdural hematomas after each shunt that they just watched. She had a subarachnoid hem after her last shunt. Her first shunt was not placed correctly in October and this was only discovered after I pushed for a head CT up here in Anchorage due to her level of fatigue. Other than that she said she felt great.
They had done an MRI during our first trip to Seattle, but that was BEFORE they placed the orginal shunt. I am told that due to the high pressure that she had been living with in her brain, any AVM's would not have been seen. I distinctly remember her first neurosurgeon telling me right to my face.."no sign of AVM" and how good of news that was.
It was not until 12/26/05 after several surgerys and many days of Chelsea feeling bad and not being able to live her active life that the DAVF were found. At first I was angry at the doctors in Seattle, but now I am not. I understand that they just had not seen that before. I must reiterate that Chelsea had a blood clot and we have no idea how it came about. She had clotting defiencies and an elevated factor 8. It will never be know if the clotting issues were that significant as her homocysteine level was never checked and she did have a clot so the factor 8 elevation could have been due to that.
One symptom she did have since 9/05 other than the mild intermittant headaches and papiledema was a BOUNDING carotid pulses bilaterally. Her entire earlobe would move up and down when she slept and the doctors all told me that it was nothing to worry about. They never listened to her carotids. We know now that her carotids had everything to do with the DAVF in her brain and the pressure that her blood vessels were taking due to them.
I just want others to know what happened and be able to see Chelsea's symptoms so that maybe they can be helped. The only ones she had again that we could actually see or she told us was headaches and bounding carotid pulses. That is all. She had never had head trauma....the clot will forever remain a mystery. That is why I had my son tested. He had the same clotting defiency as Chelsea. I will forever be learning about this, that is what Chelsea would want. ALso my son tells me he is going to be a "brain doctor". There is hope for the future. :)
Update: 22 July 2006
I have read many posts talking about the doctors that don't have the best bed side manner. I wanted to let you all know something that I did regarding my daughter.
The interventional radiologist at Seattle Children's that did Chelsea's cerebral angiogram was considered to be one of the best. Skill wise he was. After he gave us the knews about her dural arterial venous fistulae the nurse in me started shooting questions. His response was (I kid you not), "...Mrs Tatakis it is not like this is a malignancy."
After the 6 month anniversary of her death, I placed a call to the "patient service" person in Seattle. I told him about the statement made by this doctor and asked that he tell this doctor about Chelsea and her death. I added to make sure this doctor knew how his comments affected both me and my husband. It is something that I will NEVER forget. Last week I received a typed letter of apology from that doctor. I hope that he will reflect like he said he would and never say something like that again. Doctors are people to and sometimes they need to be reminded of that.
Update: 22 December 2006
January 6, 2007, will be one year since Chelsea died from her brain bleed. I have had many conversations with her since then asking for many prayers to be answered by members of this family
I wanted all of you to know that we are doing well. My son has been checked again due to headaches and vomitting with no viral symptoms. His scans were ok other than his preexisting chiari 1 malformation and syrnix. Thanks for the kind emails I have received since posting her narrative.
Discussion, comments, or questions: Katherine Tatakis
© Copyright 2006 Katherine
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