ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: RosemaryG on November 03, 2006, 09:37:24 am
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My 15 year old daughter had a 3.5 cm Right side Acoustic Neuroma sub occipital surgery 7/15/06. they removed the hearing nerve and both balance nerves. 7/27/06 she had a second surgery to plug her middle ear w/abdominal fat for a CSF leak. She also developed Meningitus. She has had constant progressively worsening headaches since the second surgery. 9/22/06 we had a follow up MRI and bloodwork. Does not appear to be a low pressure leak from the Spinal tap or a high pressure leak. Does not appear to be any infection left from the meningitus. They put her on 75 mg of Indomethacin twice a day. It helped some and she was able to attend some 1/2 days of school. The Dr. here (not her specialist) took her off the Indomethecin 10/30 as the headaches have increased in frequency (daily); and put her on 120 mg of Verapamil. (and back on Tylenol and Ibuprofin). The headaches are bad - every morning around 3:00 am she wakes up with intense pain in the back of her head - She gets really hot and we have to pack her in ice - she vomits - then gets really cold and we have to put heated blankets on her. This morning she vomited blood.
I know there are some threads out here on headaches and I will try to read them when I have some more time. Right now I am wondering if anyone has had an experience similar to this; and what worked for you.
We have a appointment with a Neurologist that is a headache specialist back at Mayo on 11/13/06. They want to put her on Nortriptyline, but I am reluctant as there are so many studies of anti-depressents and teenagers - and she is already so depressed because of all of this.
Any assistance would be greatly appreciated!!!
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Hi Rosemary, sorry to hear of your daughter's troubles (& such a young sweetheart!). I had very bad headaches post AN surg., but they were immediately post op for approx. 2 months. It sounds like vascular headaches, what with the vomiting. Glad you're going to see a headache neurologist. But to have to wait 10 days!!! - I would suggest calling the doctor for an appt. ASAP due to her severity - maybe her surgeon can even call the neurologist to get an appt. sooner - I can't imagine waiting 10 days. I wouldn't worry about the Nortriptylline for headaches if that's what the neurologist would prescribe ( adolescents with Major Depression & history of suicide need extra monitoring to prevent suicide attempt while on antidepressants, your daughter has a situational depression, that is depression due to her situation - & rightly so - we all get/got depressed with this diagnosis). Oh, if she's vomiting blood either her capillaries are breaking down from the violence of the vomiting, or something else - call the dr. immediately if there is blood in her vomitus!. My thoughts and prayers are with you both. Keep us posted. I'm sure others will reply soon. Nancy
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Dear Rosemary,
How horrible for you to have to see your day-ughter go through all of this. If there is blood in her vomit, I would get her to a ER immediately. By now I whink you may have been to see the specialist. What was the outcome?
I have tried the Noritriptilyne , as well as Amitriptilyne, and Topomax,()nickname Dopemax) all for the headabhes, and all formaer anti depresent drugs. I have horrible headaches still 2 years post op and none of the drugs have helped, they made me feel much worse. But then everyone reacts to drugs differently. They made me feel very altered, and since I already feel very altered from the balance and hearing nerve gone?shot I didn't like adding to the problem. I hope they can find some relief for her. What an ordeal at such a young age.
Keeping you both in my thoughts and prayers.
Patti Ut
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I am sorry to hear of your troubles
I have two areas of confusion here
1. The original note spoke of a right sided AN - but both balance nerves removed
- the other balance nerve would be left side
Perhaps that was from an earlier surgery ?
perhaps you can advise
2. I am also unclear about the Docs concerns
Headaches per se, whilst unpleasent, are not always that serious
(sorry to all the headache clan here)
When you add the sickness as well
it is time for some further investigation
The symptoms suggest issues around the CFS fluids either leaks or too much pressure
(for example - is the shunt working properly ?)
I think I might be pushing for into Hospital
"under observation"
Basically stay a week until something is found,
and if needs must get a second opinion
Wish you all well
Best regards
Tony
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Tony -
I mis-typed. Originally when we found out about Ana's AN, we were told the nerve bundle that went throught the top of the tumor had 4 nerves; 2 balance, 1 hearing, 1 facial. I thini its really 1 balance, 1 hearing, 2 facial? Is this correct?
We leave today for the specialist. Thanks to everyone for your help.
Rosemary
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Yes I think so - it means she still has a balance nerve, some hearing, and one sided
facial movement.
And yes smart move - maybe nothing serious but its always worth to check twice
with something like this
Good luck
Tony
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Dear Rosemary,
My daughter was 17 years old when she was diagnosed in June with what turned out to be a 6 cm AN with severe hydrocephalus.
She was in the hospital from June 16 - Sept. 16, 2006. She had 2 surgeries to remove 75-80% of the tumor and 4 shunt surgeries to drain the CSF. During the time that the shunts would fail she would suffer terrible headaches and non-stop vomiting. She also vomited blood. It was finally determined that the medications she was given for her pain and vomiting was actually making her worse. After a 10 day period of this happening the doctor discontinued all narcotics and within 10-12 hours she was no longer vomiting and the head pain was down to a level 5. They still had to revise the shunt as they felt this still was part of the problem. I'm just wondering if they have checked your daughter for enlarged ventricles as this could be a sign of hydrocephalus. Every time my daughters shunt failed she started out with increased headache pain and eventually vomiting. We were also told that the daily headaches that she woke up with prior to her diagnoses was due to the pressure of the hydocephalus. Just a thought as to why your daughter wakes up with intense headaches.
I hope all goes well tomorrow at Mayo. I pray that your daughter gets relief soon and back to a normal teenage life.
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The balance nerve has 2 branches. The superior branch and inferior branch. I think I have read most AN's are on the inferior branch. So this could be why it is called 2 balance nerves. If one branch is severed in surgery but the other isn't then you can get problems with vestibular function and the brain thinking both are still working. That is why it is said that you are better off with having them cut entirely,so the brain takes over on the good side and compensates.
Cheryl R.
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Rosemary,
I hope things settle down and you have some possible answers re the blood in the vomit. I don'y have those symptoms apart from the headaches.
I was going to suggest to get your daughter off those anti-inflamatory drugs coz they damage your stomach really badlly. Especially Indocid (thats what its called in OZ).
I have had chronic headaches since surgery and the pain has nothing to do with the AN (in my case). It was down to the surgical procedure. I take Neurontin which is a nerve ending pain reliever and i find that helps better than the others.
Everyone is different and it is trial and error but if you can, keep away from tanti-inflams - if you can't, i would suggest you also have a drug called Losec which counteracts the ulcer causing properties of anti inflam meds.
regards
Laz