22 year old daughter diagnosed with cerebral venous thrombosis
I have just come home from being with my 22 year old daughter who was finally admitted to the care of a neurologist at the hospital last night. We have been battling the causes of her severe headache, vomiting and double vision. We went to our local ER not once but THREE times and were told she had a tension headache or a virus. When the head and neck pain was not subsiding and I became VERY concerned of her double vision. We took her to a opthamalogist who noted the papilledema. She was immediately referred to an internal medicine doctor who did the lumbar puncture who diagnosed her with pseudotumor cerebri because her spinal fluid pressures were greater than 550 (normal is 20) Thinking we had finally found some answers, we took her home. A few hours later she woke up crying with the headache being worse than it being worse than before the spinal tap. having enough of the local ER doctors telling her she needed to calm down and get a grip then sitting her in the waiting room for 2 hours, We took her 45 miles to a larger hospital. The ER doctor there talked to the neurologist on call who ordered an MRI (MRV) The whole picture has now changed.
My daughter has CEREBRAL VENOUS THROMBOSIS, three deep vein blood clots in the sagital sinus area of her brain!!! The neurologist feels this is due to her being on oral contraceptives.
She is now in the hospital on IV thrombolytics. the hope is the clots that are in her brain will eventually reabsorb and she will need to be on anticoagulants for life. the double vision may not subside for 2 or 3 months.
I feel like I have been thrown out on the interstate and waiting for a car to run over me. We fought this for 8 days. She had a CT scan on the 2nd ER visit which was reported as "normal" Filled up with tons of different medications (morphine, compazine,phenergan,toradol,zofran, percocet, Ibuprofen, dramamine and tylenol) She hasn't been able to be out of bed for more than a few minutes for a week. The neurologist at the ER did the MRI and had her diagnosed within an hour!!! We have a long wait ahead of us and I will fight the battle with her. I am wondering about the life ahead of her and my head is spinning with all the "what ifs" like will her vision be permanently impaired?? will she be able to have children? I am sure she has lost her job. She will not be able to drive for who knows how long.
Has anyone else been through this???
Last edited by Administrator; 01-28-2013 at 10:15 AM.
Reason: misspelled word