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Old 06-22-2007, 11:50 PM   #1
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BabaLou HB User
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

 
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Old 06-24-2007, 11:09 AM   #2
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NerveEnding HB UserNerveEnding HB User
Re: 22 year old daughter diagnosed with cerebral venous thrombosis

Babalou,

I will tell you that your daughter is not alone with a misdiagnosis of SVT; this is often misdiagnosed as pseudo-tumor.

Now some good news:

1) Although nothing is certain, I would suspect her vision will return to fairly close to normal, if not completely normal.

2) There will be a lot of blood tests to determine if she has a genetic predisposition for clotting. If all of this comes back negative, she may not need to be on anticoagulation forever; it might be stopped after 6 months. This is very likely if it is thought to be due to the birth control pills.

3) She will be able to have children. If she needs to be on lifelong anticoagulation, the coumadin would need to be temporarily changed to heparin. There are forms of heparin in which your daughter would give herself daily shots to get the heparin. Uncomfortable for your daughter, but safe for the baby.

4) Even though sinus venous thrombosis is sort of like a "stroke" in the veins (as opposed to the arteries where strokes happen), there is likely to be very little if any residual.

I hope this makes you feel a little better. The headaches will be very bad right now and will make it difficult for you, but this, too, should pass.

 
Old 06-27-2007, 07:52 PM   #3
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Re: 22 year old daughter diagnosed with cerebral venous thrombosis

Thank you so much for your reply. My daughter is still in the hospital, hope to have her come home tomorrow or the next day. The Heparin is off she has started Coumadin and Dyamox. She was taken to Dean McGee Eye Institute today for at least a half dozen tests for her double vision. The Dr there was like an angel coming down to me from Heaven!!! He is a Neuro Opthamologist (only one of two in Oklahoma) He gave us tons of encouragement and feels very optimistic about her problems resolving. He sees 4 to 5 of these every year which was a relief because all of the neurologists at the hospital were "dropping by with one of their colleages" to see my daughter. I started feeling like she was on display for a class or something. The hospital has been giving her frequent doses of IV Dilaudid for the pressure in her head, I don't want her to be in pain but this medicine makes her look like Ozzie Osborne... She had massive vomiting on Morphine so they were reluctant to give her oral pain meds until she could tolerate them. The oral meds they are talking about is Oxycontin CR. I'm a bit concerned about this too but not as much as the dilaudid. I want my girl back, not a zombie... Anyway, I feel almost human this evening so I came home for the night, She will have to wear alternating eye patches for the next few weeks until the pressure comes down with the
dyamox, We were sitting in the waiting room for the neuro opthamalogist when she told me her left hand was going numb, I kept a straight face but thought "oh God NO!!" turns out this is an effect of the dyamox that the med is working and the neurologists consider it a compliance check if you don't have the numbness you are not taking your meds.,. that too was a relief. I am feelling very optimistic now and so is she. I now have to turn my attention to what I am going to do with her for 6 to 8 weeks sitting here in my house. She can't drive she can't work... how will she live??? her roommate already moved her out of their apartment. I have to go back to work I have used all my PTO days (I have only been there for a year) I will keep you posted. Thank you for your support and encouragement!!!

 
Old 07-16-2007, 09:31 PM   #4
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BabaLou HB User
Re: 22 year old daughter diagnosed with cerebral venous thrombosis

Still dealing with this huge mess. My daughter ended up spending 22 days in the hospital. She came home for 2 days and had to go back because the Depakote they were giving her caused laryngoedema. She spent 2 nights in ICU with an emergency tracheotomy tray at her bedside. Once the laryngoedema subsided, her PT/INR was way out of range. apparently the depakote was potentiating the coumadin so when the depakote was taken away the PT/INR crashed.
She then had to have Lovenox injections with the coumadin to get her level back to therapeutic. So...........after being discharged to home yesterday, we went to see the neuro opthamalogist and the neurologist for followup the opthamalogist noted the pressure was even worse than when we started this whole thing. Now we are back to "square one" The new plan is for a neuro surgeon to put a shunt in her brain to drain the spinal fluid which is causing the pressure into her stomach. This news has nearly knocked my husband and I off our feet not to mention the shock and fear to my little girl. She had another MRI and MRV of her brain tonight. Stopped the coumadin today. she is going to meet the neuro surgeon on Wednesday morning and surgery is scheduled for Friday. I can't think straight I am trying to cry but the fear is keeping the tears away and I have to be strong for my little girl. I shudder when I think about all that she has been through the past 2 months. She is apparently a difficult IV start and the poor baby has been stuck no less than 50 times. Her arms are covered with bruises, the fentanyl patch make her mind foggy and now she is going to have surgery on her brain.... I want this to stop and everything start going the right direction. For whatever reason we are not making any progress and I wonder how much a child can endure. They say the shunt will give immediate relief and will hasten the recovery the Diamox just wasn't working.

 
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