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Chronic headaches post surgery (Read 12258 times)
mjmom
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My son was diagnosed with
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Chronic headaches post surgery
Jan 26th, 2009 at 8:37pm
 
Our son, now 13, suffers from chronic headaches.  He was diagnosed with MM and treated with surgery 10 years ago.  Has anyone had a child with this situation and if so, what has been done to help?  Thanks!
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Re: Chronic headaches post surgery
Reply #1 - Jan 26th, 2009 at 11:46pm
 
Hi Gretchen,

There could be several reasons for your sons’ headaches. First of all, did he have surgery on both sides of his brain? I ask that because this is a progressive disease and if he didn’t have surgery on both sides, it may have progressed to the other side and causing his headaches. Does he have yearly follow-up testing? Are his headaches just recent or has he always gotten them? If all is well with their follow-up and testing, some members say they get headaches most often because of stress, lack of sleep and if they don’t drink plenty of fluids, but without knowing more of his specifics, it’s really hard to give an opinion, cuz there could be so many different reason for his headaches.

Mar
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EmilysMom
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Re: Chronic headaches post surgery
Reply #2 - Jan 27th, 2009 at 10:11am
 
My daughter is six and had her surgery only on one side two years ago. She gets frequent headaches. Her surgeon said she's entitled to get headaches due to having had strokes and brain surgery. However, Emily gets checked yearly to make sure that the Moyamoya hasn't spread to her other side of her brain. I also keep a log of her headaches and any other problems. She does also have an aneurysm that they are keeping an eye on.
I would advise you to take your son for testing right away if you haven't already. Moyamoya as you know isn't something that will get better on its own if it is spreading to the other side of your son's brain and if left untreated can have devestating results.
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Becky
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Re: Chronic headaches post surgery
Reply #3 - Jan 27th, 2009 at 12:30pm
 
I was 23 when I had my surgery and I had cronic migraines for about 3 years after the surgery. I am now at years post surgery and I now have about one bad migraine every 2 to 3 months. During the 3 years my nurologest said I was trying to do to much and stressing about not being able to do the things I remembered doing. The only thing he could do was try to control my pain during this time. I was on a daily migrine surpessent called Topamax(anti seasure but also used for migraines), and a as needed medication a mix of 325mg of tylonal and caffeen and vicaden(sp?). I now only take the as needed medication. Everyone is diffrent so I would take your son to his nurologest and see if there is anything they can do. I was instruced by my nurologest to keep a journal of all my migrains. What I was doing before, when did I take my meds, and how long did it last. This way he is able to see how well I am doing for my anual exam. For about 3 years I was getting and angiogran to see if the MM was on my other side. To this day he has not seen anything but that doesnt mean it isn't there. I hope this helps. I will pray for you and your son.
Becky
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mjmom
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Re: Chronic headaches post surgery
Reply #4 - Jan 27th, 2009 at 4:05pm
 
Thanks to all of you for your thoughtful advice!  It is so nice to be able to reach out to people who unfortunately, know only first hand, what this is all about.  I guess that I originally did not elaborate on my son's situation.  When he was 4, he had surgery for both sides of his brain.  His case was rather advanced at the time of diagnoses and he had suffered from not only headaches but multiple TIAs and 2 major strokes (they told us at one point, not to expect him to make it).  He actually did very well post surgery with the exception of these headaches.  Only now starting the past several months have they become more severe and disabling.  We have had him checked frequently with the neurologist and several MRIs.  Nothing at this point has changed (thank God) but he is still battling the headaches.  The dr. just recently put him on a calcium channel blocker (Norvasc) for prevention since she had said that all of the anti migraine meds would not be indicated for our son.  I have to say that over the past couple of weeks, the headaches seem to be not quite as bad or at least he is handling them better. As you can well imagine, he is at a tough age (14yrs) anyway and I wonder how much puberty plays in all of this.  I was wondering how many of you have been battling these awful headaches and what you have done for relief.  I wish you all the best of luck in your struggles with MM!  Thanks again for your feedback!
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Becky
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Re: Chronic headaches post surgery
Reply #5 - Jan 28th, 2009 at 12:28pm
 
I would not recomend Triptan migrain supresents like iniatrex or relpax. I whould have your nuologest look into topamax. Do you have confidence this nurologest knows enough about MM? I would also recoment having an MRA or angiogram done insted of an MRI. The dye they use in the ango parts show blood flow better then in the MRI. There is the slight chance that your son's surgery did not take as well as it could have. I personaly whould call Dr.Stinberg and talk to him about what they can do or sugest for your nurologest do do to help your son! I will pray for you and your son.
Becky
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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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mjmom
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Re: Chronic headaches post surgery
Reply #6 - Jan 28th, 2009 at 9:42pm
 
Our son did just recently have an MRI which showed no changes.  We actually then sent the report down to his original neurosurgeon, Dr. Feldstein (who we absolutely LOVE) at Columbia Pres. in NYC who said that at this point, everything looks good and that no follow up angiogram is needed (thank God).  We will continue the Norvasc for now since it seems that it is somewhat working.  You know, it is so hard and I never know what each day will bring as far as how Matt is feeling.  That is what is so difficult.  We just want him to feel better right away because he has suffered so much.  People don't really seem to understand completely which is why I am so grateful for all of you!
Thanks for your input!
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hrsridermom
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Re: Chronic headaches post surgery
Reply #7 - Jan 29th, 2009 at 8:51am
 
My daughter had chronic migraines before her surgery in December of 2008.  Her surgeon explained that the surgery may not get rid of the headaches because there was a possibility that MMD had nothing to do with the headaches and we were just lucky that it alerted us and we found something.  So I guess it's possible that your 14 year old  (my daughter is also 14) has headaches for a completely different reason.  Good luck I know how hard it is to see them suffer with them every day.
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Becky
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Re: Chronic headaches post surgery
Reply #8 - Jan 29th, 2009 at 12:30pm
 
I do agree with hrsridermom, that the headachs could not be from MM. But since we have MM our pain management for the headachs may need to be diffrent. I had to dake a daily supressent and an "As needed" medication for about 3 years after my surgery. Now all I take is the "as needed" it still knocks down about once every 2 months. The longest I have gone with out a headach was 3 months. Then i got hit with a big one. I saw my nurologest and he had to prescribe me something stronger to manage my pain through that week long migrain.  Things will get better. Keep that positive atitude! I was instruced by my nurologest to keep a journal of all my migrains. What I was doing before, when did I take my meds, and how long did it last. This has realy helped him understand how my migrains are doing and what are some of the key things that might set off a migraine.
Good luck.
Becky
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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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mjmom
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My son was diagnosed with
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Re: Chronic headaches post surgery
Reply #9 - Jan 29th, 2009 at 8:41pm
 
To hrsridermom - does your dgt. still have the headaches now and if so, how does she deal with them? Also, how often and have you seen them get worse since entering puberty (always a "fun" time in our child's life, isn't it?) 
To Becky- would you happen to remember what meds that you were on for the headaches?
My son will just take Advil as needed for the pain but we worry about what that does to his stomach.  we have to make sure that he has eaten something.  I hope that this Norvasc helps him.  I asked him today how the headaches were and he said that on a scale from 1 - 10, that today is 3.  This is great considering that they got as high as 9 and that he would complain almost everyday of a headache.  I wonder too like you both said that maybe they are completely unrelated to MM.  I guess that we will never fully know.
Thanks and I wish you both good luck with what you deal with!
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Becky
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Re: Chronic headaches post surgery
Reply #10 - Jan 30th, 2009 at 12:18pm
 
I was on an "anti-seasure" medication called Topamax for my daily med. The "as needed" that i used with the Topamax and still use today is a mix of @325mg asprin+ caffeen+ vicaden. I have a generic so i don't know its real name but my nurologest said it is like Ecedrin for migeaines lased with vicaden. Please for give my spelling. MM is a vascular disorder and Migraines are caused by the vessels contracing or expanding more the "normal" causing added pressure in our heads that causes us pain. The medication I am on relaxes my teightened vessels to aleviate my pain. VS Triptans (relpax or imitrex) which teighten vessels to have the body "naturaly" relax them.

I had my stroke while on Relpax. The stroke may have been caused by the relpax teighting my already week vessels (my MM area) thus causing a water shead stroke. I spent 6 months being tested to find out why the relpax could have caused my stroke. The nurologest at the time did not even conceder MM since I am not Asian. I was exaused and getting worse with all the testing and medication (later found out it was not helping but making me worse) she decided to give me. This nurologest never even said MM otherwise I would have been here getting advise. One day this nurologest wanted me to get an angiogram done by a nuroradiologest. The nuroradiologest can give the nurologest a better idea since they have a nuro background can can rescan parts that a normal radiologest might look over. I was LUCKY!! This nororadiologest just came back from a convention that talked about MM. He imideatly said MM. We then looked it up and found this sight. I got a second opinion and 3 months after that opinion Since I had to have my body flushed of all the icky medication the bad nurologest had me on I had my surgery. I stayed with the second opinion nurologest. He said it doesn't matter what your background is  it is the conditon that defines the name.

I hope this helps.
Becky
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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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hrsridermom
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Re: Chronic headaches post surgery
Reply #11 - Jan 30th, 2009 at 2:17pm
 
Destin's headaches aren't nearly as bad since the surgery.  She hasn't been headache free but she hasn't been complaining or taking her migraine pills.  Her migraines started in first grade.  she would only have one every few months or so but they always made her nauseaus.  Over the years they got progressively worse.  We kept food diaries, watched the barometric pressure, all the puberty things...finally her pediatrician ordered an MRI.  No tumor so we continued with the pills as needed.  After 7 months they were worse so another MRI.  Doctor saw a change and sent her for a MRA and then to a neurologist that said he was going to send her for an angiogram.  that's when we were hit with the moyamoya diagnosis...last August.  Couldn't finda neurosurgeon here in Tampa that I liked so we looked into Dr. Steinberg and Dr. Lewis.  Decided to go with Lewis since he was close and he had gotten rave reviews.  Destin absolutely loves him.  I don't think she'd let anyone else touch her brain now.  anyway, gave you way more info than you asked for...guess I was feeling chatty today!  Hope your son finds a solution to his headaches.
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LisaH
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Re: Chronic headaches post surgery
Reply #12 - Feb 6th, 2009 at 9:57pm
 
mjmom,

I have suffered from headaches, of varying degrees and reasons, for my entire life.  It has been no different since my surgeries- actually they are probably more chronic now than ever. 

I have no words of wisdom but you do learn to live with them and adjust your life accordingly.  I have taken Butalbital (generic for Fioricet) for years now, both before and after diagnosis and surgery.  It helped me greatly for migraines but only so-so with the post-operative headaches. 

I have spoken to MANY MMers and your son is definitely not alone regarding the headaches.  I speak to another MMer almost daily and we compare headaches.  The support and understanding of someone else who has "been there, done that and still doing it" really helps me the most.  Maybe your son can find similar support?

Please tell your son he is in my thoughts and prayers.  Constant pain, of any degree, stinks!
Lisa
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mjmom
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Re: Chronic headaches post surgery
Reply #13 - Feb 7th, 2009 at 11:02am
 
Thanks to all of you for sharing your experiences with these awful headaches.  I am so glad that I have posted this because to be honest, I never realized how prevalent the headaches were.  I guess at this point, we will just continue the medication that he is on and hope that it at least keeps the headaches SOMEWHAT under control.  If any of you come up with a med that helps alot, please let me know.  I will also keep you all posted on our end. 
I will keep all of you in my thoughts and prayers!
Gretchen
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Re: Chronic headaches post surgery
Reply #14 - Feb 8th, 2009 at 11:14pm
 
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