Neurosurgeon - Monday

Hi everybody! I am new to this. I have had headaches since adolescence ... it's just been something I've lived with. After the birth of my daughter in April, they suddenly got terribly worse. I work for a hospital so I have wonderful insurance. Because of that I am blessed with not having to have a referral from a PCP to see a specialist. So instead of going to family medicine (whom I knew wouldn't be any help what so ever) I went ahead and made an appointment with neurology. In August I had a MRI done and they found a mild Chiari (as you can see in my profile picture). Since then I have taken Treximet and Amerge for pain. Both of which I had to stop immediately because my jaw hurt so bad I couldn't move it for hours (has anybody ever had this side effect from these drugs before??) Now the doctor gave me Fioricet. It helps maybe 5% of the pain. On top of that I am taking 100 mg of Topomax (topamax) a day. Nothing seems to be helping. So my neurologist referred me on Monday to a Neurosurgeon. I see him this coming Monday. The possibility of surgery scares me ... a lot.  I know that with mine being so mild that most of the time surgery isn't required, but my doctor says that sometimes people's side effects are worse than others. I have severe headaches at least 3 times a week. To the point were I can't get out of bed or move my head. I am beginning to have a difficult time finding words. My focus has gone down the toilet and I can't concentrate on anything. It's like I have developed ADD or something. I have a headache everyday almost guaranteed. That's the part that is starting to eat at me. I am snapping for no reason because I am in pain and I am so tired of it. But my husband understands and he supports me so much. So I almost feel like I hope I have to have surgery .... but at the same time I don't ... I am so confused. I know there are others out there who have been or who are going through what I am. I would really appreciate any advice or comments. Thanks guys!!

[selmaS]

Hi and welcome to the Chiari forum.

I saw ur MRI and yes it does look like a minimal herniation, but u do look like u have some overcrowding too.

Many NS will not do surgery for what has been termed chiari 0 ;a herniation under 5 mm.

It must be helpful to have an understanding of what is going on and where to turn next for help.Do make sure ur NS is a chiari specialist...all NS can do this surgery, but it isn't always the best route to take.

Most of us here can identify with ur symptoms of HA's and lack of concentration....

We welcome u r to our little family here and can offer info and support....

"selma"

[lu7997]

your story sounds so fimiliar from my own to everyone else on this forum that I have read.   I am so sorry you are dealing with all of this.  I hope that your docs are able to get you relief fast and you do not have to suffer much longer.


I have not heard of those particualr meds to know if you have had side effects from them.  However I had word problems and memory problems as well as concentration difficulties since mine all started  when I went on topamax  everything get twice as bad,   check with your doc to see if the side effects of the med is making this worse  maybe he can find you something with less chiaari like side effects so you can at least tell what is causing what.


good luck to you
Angie

[rod44]

Hi and welcome,
I understand just how you feel, the whole thing is quiet frightening knowing that the most likely treatment is brain surgery. Daunting prospect indeed.
You need to educate your self about this illness AND the other associated illnesses, make sure your NS is up on the latest information concerning CM and has good experience, to do this you need to know about your illness. There is good info here on the health pages so this is a good place to start.
There is good support here in what selma calls our little family,

I wish you well on your journey.

Rod44 (Ray)

[mrscox215]

Thank-you all so much for your kind words and guidance. Unfortunately when I went to see the neurosurgeon today I sat there for 2 hours and then finally saw the doctor. He came in a apologized and said that I am going to have to reschedule because he is not the right doctor for me to see. He said that his 'people' have been trying to call me since Thursday to tell me that.

Wow. Really?? If your people were so concerned then why wasn't someone alerted when I signed in so I didn't waste a total of 3 hours of the work day that I now have to make up. On top of that I have to try to make more time for the appointment on Thursday that I have with this new doctor. The only number listed on my account is my cell phone ... I highly doubt anyone tried to get ahold of me ... or they definately would have got me ... that thing doesn't leave my sight.

So on top of my daily headache I had that to deal with today. I asked around the office (since the company I work for does the billing for the doctors at the hospital I go to) and this new doctors seems to be an okay guy. Well let's hope so.

I also wanted to mention something else, the men might not be able to relate, but who know, you may know someone who can. I had a little girl back in April. Shortly after I had an IUD (Mirena) put in. Some of the side effects are headaches, I guess just like anything else. I haven't really thought much of it until now when we are talking brain surgery. I've done a little bit of online looking around and there are a number of forums dedicated to Mirena - the good and the bad. Out of the hundreds only a few people have experienced severe headaches and migranes (migraines). So I have e-mailed my OB/GYN to see what he thinks about this situation.

I really want to rule out everything possible before anybody puts a knife to my head! :o)

I hope everyone had a wonderful Halloween!

.:Megan:.

[selmaS]

Megan...well at least he told u he wasn't the right dr instead of trying to keep ur business like many others...sorry about it...I know how dissapointing it can be...who is this other dr u r going to see?

"selma"

[mrscox215]

His name is Dr. Samuel D. Macomson and apparently he has done this kind of surgery before. They work in the same office ... I just think the 1st doctor was an idiot and I am really glad this happened to be honest. That mess shows how much he cares about his patients.

[selmaS]

Well do let us know how this dr works for u.....I am not familiar with his name.....I pray all goes well and u will be able to add him to our specialist thread : )

"selma"

[chadry]

I would talk to your ob about the IUD thing especially if the headaches started to get worse after that was put in. Everyone reacts differently to everything so you may be one of the people that have some side effects from it.
May I ask if you had a vaginal delivery or c section. I was thinking that maybe if you had vaginal delivery the pushing and straining could have made things worse for for.
Best of luck with the new doctor. The part I don't understand when people say I tried to get a hold of you but couldn't, don't they realize that most people can see when they get calls and who they are from. that is just common sense in this day and age.
Chadry