Hi All. So I had a NS appointment this morning. He basically said that he sees what some would consider a Chiari malformation but it is "borderline" and he wasn't sure surgery would provide me any relief so he wouldn't consider operating.
Now I know the first reaction would be to get a second opinion but my question is when does it stopped. At what point do I just decide that this is me, no-one can figure out anything so I should suck it up and move on? I am not looking for a decompression surgery or even a Chiari diagnoses I am simply looking for answers and considering my last MRI and how much Chiari lines up with my symptoms I was hoping Chiari would be it. I have been through the ringer and back again when it comes to tests and procedures. I have had a heart catheritization for angiogram, cerebral angiogram, plenty CT angiograms and countless normal CT scans and MRIs. Heck I even went to the Mayo clinic and simply got "It is unfortunate but we are unable to provide a definitive diagnoses". I give up!
I wouldn't give up unless you thought your symptoms were mild enough to live with for the rest of your life. If you aren't willing to feel the way you do now forever then keep looking for a specialist! Hang in there. It's a long process and there are times when giving up seems tempting!
Yeah I know. It is tempting. Sooo tempting. I mean my symptoms are not debilitating or anything like that. I am still able to function, hold a full time job and I am a full time college student, but I am MISERABLE doing it.
Emmaline, thanks but is that really a "diagnoses". He didn't say yes, you have a Chiari malformation. He said he seen what some would consider a Chiari malformation. I know I am hanging on his words but that is all I have. He didn't mention anything about the specific size or anything like that. He said yes I have a lot of symptoms that could be caused by Chiari but the symptoms are so non-specific there is no telling if they are from something else. I spoke with my Neurology nurse from the VA earlier and she said that I am getting too impatient and getting too focused. What if it is something else? And she said considering it is "borderline" she doesn't think anyone would be willing to operate, it is a serious operation and could cause more problems than it is worth. True "it" could be something else, but what in the world could "it" be. I have been poked and proded more than I can imagine. There are soo many variables when it comes to my medical mystery and whatever "it" could be. Every MRI I have had has been read as me having multiple lacunar infarcts in my inferior right cerebellar hemisphere, so the question comes up to why would a 30 year old be having strokes? The Mayo confirmed that I have a mild cognitive deficit in memory, learning and cognitive processing speed but that could be due to the strokes. My movement and weakness could be residual from the strokes. I have been evaluated for MS, Lyme, Lupus, Vasculitis and many, many more. While one test will be positive another test will not. While one symptom will indicate one thing, another won't coincide. I turn circles and get spun around so fast I can't see straight, both literally and figuratively. At one point I was told by a specialist (Rhuem I think) that they were certain I had a disease called CADASIL and I should go home and look it up, only to find out it is a degenerative and pratically terminal illness, but the genetic test for that was negative. Who knows. I am just as confused and fustrated as can be. My VA nurse says we should sit and wait to see if "it" blooms so more symptoms will develop and I will get worse so maybe they can figure it out. I DON'T want to get worse and I DON'T want to keep feeling the way I do. How many times do I have to watch my son playing outside and have a killer headache or can't keep my eyes open. How many times do I have to sit and think about all the stuff I need to be doing as the man of the house and have an endless honey-do list but I can't stand to get up and get it done after a full day of work. How long do I have to put up with this crap before enough is enough and someone, anyone figures out what in the world is wrong. I pray for a magic pill or an answer to it all, but mostly I pray to just have a normal day. Is that really too much to ask for? I am sorry, just had to vent. I hear all of your stories and feel saddend that so many of you have gone through so much and when I look at myself and my own plight it can't even compare to the things that you all have done. I don't know that Chiari is the answer and I have been told so much that I am cautious to become too focused. I have already taken time off of work and spent the money to travel to Rochester for the Mayo so I am cautious to drop everything and head to some of the well known Chiari specialist since as my previous experiences would dictate it would be for nothing. I just don't know where to turn. Sorry.
I just deleted my previous response after reading your second post.
Do you have a copy of your medical records or can you get them without great expense? I am not sure if the VA charges for Medical records. If you would let me I would like to send your records & copies of your MRI's to my NS. I will need your total records, from every Dr that has seen you and every test result. You do have something going on. Is it Chiari I don't know, but I do know my NS will find the answer when no one can. His name is Dr. Peter Jannetta. He is retired doing research in Pittsburgh. He still consults with me. I love & respect him dearly. After 4 years and 52 Specialist I was sent to him because he is the Best of the Best. He has done hundreds of studies & research. He is the god father of modern NS & has not only developed most currently used NS techniques, but he is the worlds authority on Trigeminal Neuralgia & it's treatment. He lectures all over the world & teaches other NS by observing him in surgery. He has also started many NS departments in facilities. Google him. He is the real deal. I would never offer you or anyone hope if I wasn't positive it was there waiting. Another Moderator on the Trigeminal Neuralgia forum also knows Dr. Jannetta well if you want to talk to him. I want you to have your life back. I spent many years in misery and don't want that for you. You are such a great guy. Please let me help you. I already feel like you are my brother. You have been so incredible to me. I know Dr. Janetta can help you and will.
I would take Tracy up on her offer. You have a very, very complex case. The nurse is incorrect - borderline chiari is a diagnosis and there are surgeons that operate on it. At the same time, the nurse is correct regarding patience. Although you have been through the mill already regarding doctors, the complexity of your situation does call for caution. If you had decompression surgery and it did not help, that would be really sad, frustrating, and even cause more problems by exacerbating your traumatic brain injury. I played football all the way through college and suffered several concussions in high school and in college. The physical trauma of the surgery has really triggered a lot of post-concussive symptoms that I am srtuggling with now - even though I have not had a concussion in over 20 years!
I think that as much as doctors profess science, we know so little about the brain and everyone's cerebral structure is so unique, that neurological diagnosis is more of an art than a science - especially diagnosing chiari. In that vain, Tracy sounds like she knows a beautiful artist! I have been praying for you man but I just cannot use a computer for very long and I am back working again - which exhausts my limited capacity to be on a computer. Hang in there, you are already sucking it up quite a bit although it may not feel like it. Take care of yourself - wishing you deep peace and healing, Fr. D
I wouldn't wish Chiari maformation on my worst enemy.... with that said, I do not think that decompression surgery should be the first thought. My husband has had 7 brain surgeries because his NS thought he HAD to do docompression surgery on my husband,I begged him not to have it, but it is his body... Now 2 years later my husband is in worse shape then he was... My life and my husbands life has forever changed and NOT for the good...I say pray about it, and take your time in finding a doc to do surgey...:-( I know no evey surgery is the same. this has just been my experience