Dx w/CM (6.5cm)and doc says it's nothing to worry @?

[skeetelmore65]

Dear All,
     I am so frustrated and in misery. I don't know what to do. I have been to two NL and the first one I asked if I had a CM and he said that he didn't think so. I later found in my records for disability that I did have what the Radiololgist called a mild chiari malformation w/6.5 cm and I have heard that there is no such thing as a mild one. I just know I have had MRI's and a CT scan of head and did have an ACD & F spinal diskectomy in '06 and was also left w/a T3-T4 compressed fracture that I didn't even know @ until I filed for disability. Why don't they tell you what you have anymore? I am in so much pain and agony and I don't understand how do I get someone to help me. I don't know what else to do. I am a driven outgoing young 44 yr. old that wants to have some life and I can't seem to get anyone to help me.
     I went to my newest NL yesterday bc I called him to tell him an incident that I had and to move my appt. date up sooner so he could do whatever he could to help me get to a better place. He, I guess, thought that it was important bc he called and wanted me to come in in a few days. What happened was that I was in bed resting and a pain hit me in my back(lower) and I reached up after I leaned back and closed my eyes...put my hands over my eyes and saw something like a strobe light effect. I thought I was having a stroke or something. It was more like ripples or waves of light. Like you would throw a rock into water but it was lights. I was so scared. He told me he wanted to do a brain scan. So, I got there(5 hr. round trip) and he is such a thorough doc. and I liked him, but he hurt my feelings bad. After reading off questions that I had and talking a small amount, he said, " I think a lot of this is contributed to stress". My reaction was slow. I put my head down on my tablet and I just couldn't help it the tears came. I just couldn't believe he said that. I told him ...no..what I was experiencing was definately PAIN and it was not coming from stress. Now, I told him that stress might aggrevate the pain. It makes it compounded. I know you know what I am talking @. HE did too. Afterwards he handed me a tissue and I told hia that I had to bind what it was$that is causing the everyday misery that I deal with.
     He dx me with Migraine and prescribed Topamax and Neurontin the last visit I was there @ 2 wks. ago. Well, I have to say I do like the Neurontin batter than Lyrica, bc it made me$blow up like a nalloon...I am tmlking 80+lbs. T`ere is one diffarence I have noticed and I don't know if it is from the Neur. or Top. is that my skin feels like it is on FIRE...and I mean fire. Does anyone else have this symptom. He couldn't understand that. He took me off the Top. and he said it was such a small dose(25mg.) So, do you think it was that? I wish it wouldn't do that to me for I was hoping for the benefits of the weight lose it has been known for right now. Oh well, I guess we'll see. I still am burning, but not as bad and I have been off the Top. for 2 days.
     I just want to ask you guys if you think that it could be the CM that is causing me to have all the pain,paralysis,parthesis,muscle weakness(arms,hands,and legs),cramps(severe-in hand and feet, but that could be due to the lasix I am taking for fluid retention and no one is giving me any kind of potassium replacement). I live in a one horse town so I have to travel and it is so hard to find a good doc to take good care of you. If you got one..hold onto 'em. I do have to say that my PCP, who is a DO prescribes me and keeps me out of a lot of pain. I could be a lot worse off...so I do feel blessed. I just want to know what in the world is causing all of this.
      OH, I forgot to tell you that I do have a Venous Angioma, in which now there are having concerns that ...and I quote from a website that is talking @ VA. "Even though the Neurological community has categorized DVA's(venous angioma-a.k.a. developemental venous anomaly) has received increased scrutiny in recent years. The Neurological community has categorized DVA's as benign lesions, there are burgeoning concerns that DVA's may be involved in the genesis or growth of cerebral caverness malformations(AVM)."  unquote....I don't know @ you, but that is scary. I have actually seen mine and it looks scary too. So, they are basically saying that they could be further rooted into the brain with other vein activity. spooky. Oh well, that is up to The Lord when my time comes it just comes. I just hope and pray that I am around a little while longer.
     Hey, I think I have said a mouthful and my hands are given out. I wish the best 4 all and pray that all of us get well...it's possible...4 nothing is impossible with The Lord...Take Care and always  GOD BLESS... Karen

[*Stormy*]

Hello Karen

Sounds like Chiari to me...I had all those symptoms and the muscle cramping and twitching was a major problem for me. I don't believe in a mild Chiari...it gets so tiring hearing these doctors dealing out that BS to everyone day after day..

I've had the same experience as you..a GP who kept telling my it was anxiety, a NL who didn't think it had significance...finally I found a NS who would finally listen. I remember the stress and misery that I went through and I'm really sorry that you are going through the same thing. My advice to you is to keep on looking for the right DR, one that will really listen to you. I know what it feels like to be told its "stress disorder", I was told that too and it was just unbelievable to me!! I was in so much pain and had so many troubling symptoms....I don't even think my psyche would be capable of producing and keeping track of them all!!

The stobe light effect....I had very, very often before surgery. Mine would happen when I would be in dim lighting, especially when going to bed...and as the light flashed it almost felt like my eye was twitching with it...

The closest I had to the skin burning was that I would get overcome with a intense feeling of itchiness...that I would scratch and scratch but get no relief.

I really hope that you get the attention you need!
Carolyn

[shanmomof3]

Hi karen! I would send your mri's to a chiari specialist for review, some of them do charge a small fee for reviewing the films. That is the only way i got any help. In my experience NLs know nothing about chiari or what they think they know is wrong, unless they work with a chiari NS (jmo) So sorry your going through the run around! Blessings ~ Shannon

[selmaS]

Hi Karen, haven't heard form u in a while, so the TOS is not a deff dx and it is now chiari?
It sounds like u may have drs that do not believe chiari can cause symptoms and we, chiarians all have had to deal with that....and the stress dx, or anxiety.....BTDT too.

U need to do research to find a true chiari specialist that will work for u and u r comfortable with we do have a thread here of drs names that members here have been to and liked, they r not a recommendation ,but a starting place for ur research.

I am so glad that u finally have a DX u can move forward with.

The lights with ur HA's can be chiari related, but u may have migraines with ur chiari HA's....many of us get both types.

I know u have been off ur feet for sometime with pain and would suggest u get a complete spine MRI along with a CINE MRI to finally get to the bottom of it all.....there r also a few members with other brain abnormalities but I am not informed enuff to comment.

"selma"