Author Topic: When is enough enough?  (Read 14548 times)

Mei Mei

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Re: When is enough enough?
« Reply #30 on: February 26, 2010, 11:19:06 am »
My surgery was on Jan 12 so I am about 5 weeks.  The AN side of my skull is still more swollen than the other and the neurosurg. keeps telling me the headaches are "normal" .    They are just so scary.   
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Larry

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Re: When is enough enough?
« Reply #31 on: February 28, 2010, 07:25:49 pm »
headaches are normal huh!!! - what a feeble excuse. Apologies for my tone here but having sufferred from severe headaches for 9 years post op, after numerous tests, drugs, therapies etc, I have come to the conclusion (not based on any facts or science) that the headaches are caused by the priority the surgeons have on attacking the tumor with disregard to anything else. That is, and i am only speaking for myself here, to the head position throughout the surgery, no regard to the yanking and prying apart of the skull etc.

My surgeon told me the headaches would go away in a few months - yeah right, more like decades. I don't see why there need to be headaches for anything more than a few weeks but hey, that is just my simple view


laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

bell

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Re: When is enough enough?
« Reply #32 on: March 06, 2010, 03:29:10 pm »
I do not think  these headaches are normal.  I did not have headaches a year ago and have never been on other drugs up until surgery.
I do like my Neourologists and we have tried several medications, he told me it would not be chronic and within 6 months we should have it cured, welll..my faith is losing out.  Now he thinks I am having rebound headaches, which maybe?, and I should tough it out for several days or a week, is he kidding?
This is what I am doing:
     Divalproex 1000mg(Depakote), Tizidine 4mg at , Doxepine 25mg all taken at night.
   I think Divalproex and Tizidine have helped the occiciptal headache behind one eye, but done nothing for the vice, throbing headaches that start at incision, neck area and throb every where in head.   
   Doxepine is new for 2 weeks and only gives side effects.
   Immitrex for onset of headache which is almost every day.
So  if I take 1 Alleve early afternoon I feel good all day, if I do not I will take Immitrex when headache starts to throb.   My cycle is Alleve one day, Immitrex the next and it is not good so now what?
Neurologist thinks I should tough it out before I do Botox,  I do not think I could handle that.  I takes 1 hour with Immitex and it is unbearable! 
When I get headache, the  AN side of neck and face gets hot, swollen and throbs anyone else?   Good luck to other suffers and if I get releif I will pass on.  Thank you , Bell
Go

epc1970

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Re: When is enough enough?
« Reply #33 on: March 07, 2010, 08:54:13 am »
Bell
Yes!My AN side of my face and neck-even my scalp- sometimes gets hot and throbs when I get a headache. I used to get swelling but not any longer as time has moved on since my surgery . Wonder what causes that??
Erin

Mei Mei

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Re: When is enough enough?
« Reply #34 on: March 09, 2010, 11:51:53 am »
Yes,  I agree with all of you that it is not normal.  But what to do?  As I told you before I am Topomax for the prevention of headaches and just now on the forum I discovered this link on Tinnitus posted by Denise that tells you which drugs have a side effect of Tinnitus.  Well I have Tinnitus and am taking Topomax and it is on the list.

Here is the link:
http://www.askdocweb.com/tinnitus.html

Taking all these drugs is not good for us.  I was taking so much Imitrix that the Pharmacist at Caremark called my doctor our of concern for my health and blood pressure.  I worry with every headache and every pill that I take about my brain and my liver what I am doing to myself.   I want to live a healthy life.

Sincerely,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh