Just a update on everything that has happened to me since being diagnosed with my little friend in my brain. Yeah thats right it has now became my little friend, I have had it for 32 yrs. and it goes with me everywhere that I go. I know that I have had problems with it for some time but they never knew what it was and they would say that it was nothing. Really nothing thank god it gives off symptoms of a stroke or they would have never found it till it was to late. I seem to be dealing with it fairly good but my family is having a hard with it especially my boys. My husband is trying to stay positive about it all and get ready to leave for Afghanistan but I know that deep down until we start treatment that he really whats to stay here and take care of me.
Oh My Goodness Crystal! I am sorry you are having to go through all of this, and the pain. I am sure yall are scared about not getting an MRI or something to check out your head. I will be praying for you and your family.
I’m so sorry all of this happened. I’m shocked by how many mefdical I’ve encounted over the past year who didn’t know what an AVM was or minimized how problematic it could be. I think sometimes AVMs should be called “A-What?” because of the number of people who don’t know about them.
Sorry your insurace is not being very helpful in getting you the treatment you need, but it’s good that the neursurgeon is on your side. I will continue to keep your family in my prayers.
Oh the headaches! That is just horrible that they just shot you up and packed you off. There is treatment and they better pay for it. In your picture your husband is the gentleman in the fatigues? Where is he going? What insurance company do you have? Sorry for the list of questions I am just curious. I hope and pray you feel better and that the ball gets rolling in the right direction!
Debbie I so agree with renaming it A-WHAT? because that is the response I get from most people who I say those 3 letters to and forget about calling it an Arteriovenous malformation because that just confuses them more. If I add in the cerebral part they think it is a tumor. I can’t blame people for not knowing what it is because before I had a doctor tell me that is what is in my head I didn’t either. However, I think it is irresponsible for a doctor to tell you they don’t know what it is. Even if they don’t know what it is they should find out quickly or look for someone who does.
Oh, Crystal. I’m worried about you. Are your neurosurgeon’s services covered under your insurance? If so, your neurosurgeon can order an MRI. That’s what you need right now. Even your regular doctor can order an MRI, and that ought to be covered under insurance. Then, if you are having a bleed, it becomes an emergency situation that gets taken care of immediately. If you can, call today to see about what non-specialist (like your regular doctor) can order an MRI and it be covered. There’s more than one way to skin a cat.
I’m so concerned on what is going on with you right now, I cannot imagine they did not do an MRI last night at the hospital, you could be having a bleed. Since your Husband is a veteran, aren’t you allowed to go to a VA hospital, is one close by, or is that the insurance you speak of? My thought, prayers, and hopes for a quick response for you!
Hi Crystal, we haven’t spoken yet but I’ve just read your blog. I’m not religious but I’m sending you some positive vibes with hope that you can get this sorted as soon as possible.
James & Julie
I guess we are all wondering if VA is covering your medical…if so that is a sad representation of what our military families go through. I pray for you and your family. Just as a reference, my first neurosurgeon was very specific about telling me that if anything happens to me (I have not had a bleed or seizure yet), I must go the the nearest large city hospital, and to stay away from the smaller hospitals, as they will not have the more developed neuro department. I would also recommend you have digital records readily available in case of emergency, so the medical team have access to view your history and MRI records. This will save some valuable time in the ER. Take care, and keep us posted. If we all need to write to your local politician to help push the VA process, let us know. I for one will be happy to help. I have a very pro-active congresswoman who is great.
To those who have written a comment, my husband is active duty military and is getting ready for deployment with the 10th Mountain Division out of Fort Polk, La. Due to him being active duty we are not able to use the VA and we have to use the hospital here on base. The nearest largest city to us is Shreveport and that is almost 2 hrs away from where we are currently stationed at. I am currently waiting on my new neurosurgeon Dr. Nanda to call and get my appointment scheduled as soon as possible. Thank you all for your prayers and once again our prayers are also with you all.
We did find out today that Tricare (active duty insurance) will pay for my treatments thank god for that. And that is very true, I have alot of people who look at me when they ask me what the doctors have found out and they are like what, what is that and once again I have to explain it to them. So thought that I should let you all know that they finally figured out the insurance mishap.
Crystal, I am so sorry about the problems you are having. The stress of it just makes the physical problems worse. It is so true what others have said about when you are talking to someone about it-the first things is always “a what?”. Then it is (in their thoughts) she looks fine and acts fine so no really big deal. I am so lucky to live where I do as I don’t have to worry about medical coverage. We need something done and we have it (regular dental & eyeglasses not included) which takes all the added stress away and yes, we have choices as to who, what & where. My heart goes out to you all. I always think that if my husband and i lived in the states we would up **** creek as no one would insure us-me with this and him with third stage progressive MS. My thoughts are with you as with everyone. Strength in numbers!
I’m so happy that the insurance is all worked out now.
How did I know it was Military, we had the same problems when I was a child, they told my mother see imagined my having a seizure. LOL I’m glad you finally got through to them we had to finally see civilian docs! Good Luck and God Bless you and your Family!
I am so happy the insurance company finally approved treatment for you. It is so frustrating when docs who don’t understand just dismiss it instead of researching and finding out what the complications and side effects of an AVM is. Nothing to mess with! Good luck and I will be praying for you.