Hello all its been a while since I have been on here. Hope everyone is well and trying to make it a day at a time. We are trying to make it but it has been rough and unbearable at times. She went and seen her neurologist the 3rd of this month, after fighting with her neurosurgeon to get an appointment set up. He did not do a hole lot except the normal tests with eyes and reflexes but did put her on a prevention medicine and set her up for an EEG tomorrow the 14th, she is still in a lot of pain all the time. We have been to the ER 4 times in the past week. She has a tooth that has needed to be filled for a couple months now and her surgeon wouldn't sign off on it so now it is going to have to be pulled. Will try to keep updated more often but between all the Dr appointments that seem pointless, 3 kids, work, and everything else it has run me in the ground and I don't know how much more I can take. Best wishes to all.
I'm so sorry to hear your wife is still suffering -- I see her craniotomy was 3 months ago, and she has been in near-constant pain ever since? It is definitely time to consult a pain specialist. Your wife's pain is chronic, and it will take an expert to figure how how best to relieve it. It may be that a pain clinic can accomplish more than the neuro. Beware of pill mills; look for one that uses a variety of techniques rather than just handing out prescriptions.
Is there anyone else in your combined families who can offer support? It is easy to get caregiver burnout in a situation like yours. Even just to have a day off once in a while can make a difference. I hope things get better soon.
4 times to the ER? Yikes! I hope you get some answers soon!
I just want you to know i care. i hope things are getting better for your wife, the kids, and you. i know this must be the most difficult thing you have ever had to face and my heart goes out to you.Lea
Keep on keeping on. Bad times will pass, I promise.
Thank u all for all of your prayers and wishes! Things have still not got a hole lot better, she is still in as much pain as she was before if not worse at times. Every Dr we see tells us we need to follow up with the other, I am about to put all of them in one room and then they can tell each other this! All that any of them do give her for pain if she gets anything is preventatives and none of them seem to work, but why would they with a continuous migraine that seems to have to end in sight. She has had a Spinal Tap, MRI, and MRV in the past 2 days so maybe this will tell us something. She went to see her pain management Doctor this past Monday and ended up passing out in the room waiting for the doctor due to her blood pressure bottoming out, which it has been doing for the past week. So instead of seeing the doctor she ended up going to the ER across the road. We are hanging in there barely but "strongly" well trying anyway. Tonight was the first night since the kids were born that she wasn't able to take them out trick or treating, which tore everyone apart, all the oldest seems to say every time she has to go to the ER is "oh gosh not again" but he understands but doesn't, it makes him mad more than anything that they aren't doing anything to help his mom! Well best wishes to all.
I am so sorry :( Have you considered traveling a little bit to see more reknown doctor? I know its hard with kids... :( It sounds like you guys are an amazing strong and close bunch and I have no doubts you will get thru this :)
Well it seems like time just flys by between times that I get a chance to be on here. Since last time the wife has had many different tests run and been in and out of the hospital constantly due to her headaches and how severe they have been. We have learned that she is still having seizure activity and that this might be a slight cause of her headache. They have up her keppra from 1000mg a day to 2000mg a day now and it has seemed to help a little, but she stays on an emotional rollercoaster all the time and it is rough from one minute to the next. I hope to be able to get on here more real soon. Hope all is ok or getting by I know it can be rough trust me it’s been 8 months non stop for me.
Thank you for keeping us updated. It must be terribly difficult. Both of you are still on my prayer list!