What are the chances? Sometimes you really wonder…Well in spite of the fact that Charlie received good news last week about his brainstem AVM having shrunk somewhat in the first 6 months after Gamma Knife, we’ve also discovered he has a Chiari Malformation. A whole new animal so to speak. This involves what they call the tonsils at the base of the cerebellum in the back of the head. Sometimes they have a tendency of lying low or extend into to the area where the brainstem extends down into and the spinal column begin. There is only so much room in this area. Plus you have the flow of the cerebral spinal fluid as well. Interestingly when Charlie had his very first MRI in Februrary 2007, the report indicated there was a Chiari Malformation which was not causing compression of the spine. His actually extends 9mm below what they call the foramen magnum. Despite the fact there is no compression, something else possibly associated with the Chiari could be causing some of the symptoms he is having. Flash Headaches, pain in the right shoulder which extends down the arm into his biceps and sometimes forearm. He also has pain behind the eyes, gets either douuble vision or blurred vision. The problem with Chiari’s is in some cases or many cases, they will cause compression of the spine which interefers with the flow of the cerebral spinal fluid and it can cause paralysis. Also, if there is enough pressure there regarding the CSF (Cerebral spinal fluid) , it can leak and creat a whole new set of problems. Right now we have no way of knowing whether there is any risk of any further problems for Charlie as we are now starting along the path of a new brand new journey called CHIARI Discovery. I find it so amazing that these things like the AVM’s are considered rare – the one in a hundreds of thousands thing. So my one of my questions is what on earth is the likelihood that you’d end up having both in lieu of one or the other. At any rate, my whole point was to put this out there in case, any one of the now 164 members has jeither had any exposure to or it actually having happened to them. All I can say is as a wife and mother with two teens and a preteen, 2 of which are hormonal girls, this is certainly one heck of a ride.
I have heard of them but know very little about them. Best wishes with it, keep us posted!
I went to the Dr in April 2002 for constant headaches and was sent for a CT scan where they found the AVM. This worried the dr. to send me for an MRI which found my Chiari I in May 2002. After trying many meds, I finally had decompression surgery for my chiari October 4, 2002 and immediately found relief. The past two - three years have found my headaches returning with all my other symptoms. Just the past year have they been coming back in full force and making me stop all activities until the major pain passes. When these occur, I am pretty much useless the rest of the day. Very tired, nauseated with a bad headache. The AVM was put on the back burner and forgotten about when the Chiari was found. I only recently remembered about it and started trying to research it. I’m sorry about Charlie and hope you find a good doc to help with the chiari. I am glad that I found this posting however, because I know I am not the only one. I hope I can find a good doc for my AVM.
Best wishes
Hi Nora,
I have never heard of such a thing. But neither have I heard of an AVM before it happened to me. Wow …IS ALL i can say. Hang in there …best of luck to you and Charlie. It must be so hard on all of you Thoughts and prayers are with you…
Sending angel light and love to all of you…d
Oh, Nora, I’m so sorry to hear that poor Charlie is now having to endure this too! I am so glad that you both have your strong faith to help you. I know that God was certainly carrying me through that fog of pain and nausea last week in the hospital…He will carry Charlie through too.
Love, Connie
I’m sorry to hear this what a double whammy. I have never heard of a Chiari something totally new to me. You are in my prayers. Keep me posted…best wishes.
My husband has chiari malformation. He found out at the age of 36 ,hes 50 this month wha a mess that was and still is for him. The ended up doing two major surgeries ,one on the brain and ne in the top spine of his back, he ended up with a shunt put in his back and two inches of hs spine removed from the malformation. And 15 years later I find out that I have an avm in the brain. I had radio surger for it in January of this year. I dont hear of many people with the chirir malformaton as my husband has. How did your husbands turn out. My husband does not have an avm as far as we know, but he had many mri and they never said anything about that.
Hello. My name is Tina. I’m new here. I have an AVM in the cerebellum and Chiari 1. (5mm) I would like to know who helped your hubby-I’m having a hard time finding a Neuro to really listen and take me seriously. (*apparently this is not uncommon for us Chiarians) I found out about the chiari 7-09, the avm 12-08, I went to the Mayo in Rochester had a million tests done, found quite a few other problems that seem to go with Chiari, but told basically “no big deal” I just need to find a good neurologist to listen, It even said on the reports that the cerebellar tonsills indicate they MAY BE COMPRESSED–but they have done nothing but give me meds. I would appreciate any helpful info. Thank u for your time, Tina Thai Minnesota
Caroline said:
My husband has chiari malformation. He found out at the age of 36 ,hes 50 this month wha a mess that was and still is for him. The ended up doing two major surgeries ,one on the brain and ne in the top spine of his back, he ended up with a shunt put in his back and two inches of hs spine removed from the malformation. And 15 years later I find out that I have an avm in the brain. I had radio surger for it in January of this year. I dont hear of many people with the chirir malformaton as my husband has. How did your husbands turn out. My husband does not have an avm as far as we know, but he had many mri and they never said anything about that.
Tina and Caroline :
Charlie had his Chiari surgically treated by Dr. Amin Kassam (former Chairman of Neurosurgery at UPMC now at St. John’s Health Center in Santa Monica, Calif. Charlie was briefly consulted by a neurologist. But to be frank, a neurologist is not what you may need in this instance. You need to determine whether surgical intervention is necessary. When the first group of radiologists read his report, they found that the Chiari was 9mm (Feb. 2007). When they finally operated, it was 15mm in length. Obviously the situation got worse. The surgery as performed by Kassam basically performing skull base surgery trimming off part of his C-1 at the top and “Patching up the dura” to allow for more space so that cerebral spinal fluid could flow adequately. They did not have to remove any part of the brain. This has been done in many cases (removing some of the brain). I think they steer away from that now (too risky sometimes). If in fact you are having compression of the spinal column, if left untreated over the long term, it could eventually lead to paralysis ( all depending on whether the cerebellar tonsils continue their descent into the spinal column space). So you may want to consider your options carefully by going to consult some neurosurgeons. They are typically the ones better suited to guide you. As for Charlie, his Chiari was quite successful. It’s my impression from him that the symptoms which were “unofficially” related to the Chiari are gone. Now he just deals with the finality in waiting for the complete involution of the AVM. In October 2010, he finds out how much of it is gone and whether he will need another treatment. He still gets tired quite a bit. Other than that, I think he’s in relatively good shape. I’m sorry for not responding sooner. I dont visit AVM’s network very often anymore. But I do hope and pray you all find the right kind of treatment for your situations.
Take Care,
Nora
Tina Marie Thai said:
Hello. My name is Tina. I’m new here. I have an AVM in the cerebellum and Chiari 1. (5mm) I would like to know who helped your hubby-I’m having a hard time finding a Neuro to really listen and take me seriously. (*apparently this is not uncommon for us Chiarians) I found out about the chiari 7-09, the avm 12-08, I went to the Mayo in Rochester had a million tests done, found quite a few other problems that seem to go with Chiari, but told basically “no big deal” I just need to find a good neurologist to listen, It even said on the reports that the cerebellar tonsills indicate they MAY BE COMPRESSED–but they have done nothing but give me meds. I would appreciate any helpful info. Thank u for your time, Tina Thai Minnesota
Caroline said:My husband has chiari malformation. He found out at the age of 36 ,hes 50 this month wha a mess that was and still is for him. The ended up doing two major surgeries ,one on the brain and ne in the top spine of his back, he ended up with a shunt put in his back and two inches of hs spine removed from the malformation. And 15 years later I find out that I have an avm in the brain. I had radio surger for it in January of this year. I dont hear of many people with the chirir malformaton as my husband has. How did your husbands turn out. My husband does not have an avm as far as we know, but he had many mri and they never said anything about that.
For anyone here who also has a chiari malformation, we now have a sister patient community at http://www.chiarisupport.org. Stop by if you would like to connect with others with chiari.