Diagnosed with chiari malformation

[mummy22boys]

All the severe anxiety, depression, headaches, tingling, numbness and insomnia could all be cause by this! I go for my 4th MRI today and it will last 1 hr and 20 min as they are doing the brain and lumbar spine they have already done my shoulder and cervical spine. They have referred me to a neurosurgeoun in Houston as they feel their are none nearby competent enough to deal with this. They will have to cut a piece of my skull to make more room for my spinal cord they may also have to do other thins once these two mris come back! I am so sick of this and feel like it is all a nightmare and someone needs to wake me up!!!! I am scared to death of having my spinal cord and brain operated on but ready to be pain free!! Even with surgery there is a chance I may need more surgeries. Time will tell!! I will be heavily medicated to make it thru this long hour twenty in the tube!! I can't stand being still much less in a tube it makes my body twitch and tremble because I am trying so hard to be still I tense up! Just ready to get in all over with thanks for letting me vent and please if anyone has dealt with this please contact me 😊

[laurandisorder]

I have never dealt with anything like this - other than having the MRI, but it sounds like quite the ordeal.

No wonder you are stressing big time - there are lots of people here for you and I bet you'll feel so much better after the operation when you wot have to live with symptoms every day, whether you're anxious or not!

Good luck x

[daisy84279]

I have, but can't type much now...will reply in an hour

[daisy84279]

Ok, I can't make this too long cuz I'm at work. But my fiancee' has been diagnosed with chiari, as well as syringomyelia, scoliosis, and degenerative disc disease. I know you are nervous about the surgery, but please be thankful you have found a doctor who believes you and is on your side. Be thankful you are having the surgery. Its very hard for us to deal with these disorders because he does not have insurance. Without insurance, a neurosurgeon will not even give him the time of day. He needs the chiari surgery, and surgery to drain the syrinx in his spinal cord. He suffers so much pain all day every day. He has spasms that go from the left side of his neck, down his shoulder to his hand and all the way back. The way he describes it, I just imagine the pain like a charlie horse, accompanied by intense burning and tingling. He has also lost most of his hot/cold sensation in his left hand. I'm so worried that one day, he will be paralyzed or have a stroke from being in so much pain. It keeps him up at night too so he's not getting enough sleep. I gotta go back to work, but I will check back later tonite when I can actually sit at a comp and type.

[mummy22boys]

Wow that's crazy they should work something out as far as Payment on something like this!! It is very painful and I have the same exact stuff he has and it also goes into my head and my left side but it has stayed on my left side so far. Hopefully done with tests now to get the surgery I am ready yet scared but if it will help me then I want it the pain is unbearable and I am so sorry about your fiancée. Did y'all check with several surgeons and see if anyone would work with y'all? That breaks my heart!!!! I hope he finds someone that will work on him it is not fun to deal with this pain and so many other things I have going on that I didn't even know was related until I got this diagnosis. I guess the brain and lumbar MRI will show if there are any of the other things u mentioned wrong as well I hear that is common to have some of those along with malformation. We will see probly won't have these results till Monday since today is Friday and my dr closes early.

[daisy84279]

Yeah, he's just so sick of seeing doctors. Its just his luck that 3 doctors who he felt actually believed him and listened and acted like they wanted to help, left their practice and we weren't able to see them anymore. He even had a specialist tell him that the cause of his pain wasn't from the cyst, but that it was from his brachular plexis!!!! Of course the test was negative. The hard part about all this is that not many practicing physicians have heard of it. So he just ends up being tossed from doc to doc, and we don't have the money to waist on that. We are seeing a new

[daisy84279]

Doctor to the area next week, so hopefully that goes well. I was reading some of your previous posts, and I find it interesting that he has also had shingles and problems with this elbow. He said he would take the SM pain over shingles pain, it was that bad.

[mummy22boys]

Shingles pain is horrible I can not even describe it!!!! I hope the appt with the new dr goes well!!!! I think this can cause so many problems including a lot of what I'm dealing with. I wish the best for y'all and let me know how that goes. I just have answers now and guess I was lucky enough to have a dr who knew how to diagnose this. Just ready to be done with the whole thing it's like some awful nightmare!!!!

[mummy22boys]

What's even crazier to me is that this could be the cause of the anxiety, depression and insomnia!!!!! I wonder if I will need the Prozac afterwards!?!?!

[daisy84279]

yes you're right it could very well be the cause! He hardly sleeps at night too, just because he is in so much pain. He's more depressed than anxious. He is a very laid back person. But he does have his break-downs now and then. how long have you had the symptoms? His started when he was around 8. He said his arm kept feeling like it had fallen asleep, but it really didn't. He never said anything to his parents about it because his older brother and sister told him it was cancer and if he told his mom and dad they would send him away. How cruel is that?

[mummy22boys]

yes you're right it could very well be the cause! He hardly sleeps at night too, just because he is in so much pain. He's more depressed than anxious. He is a very laid back person. But he does have his break-downs now and then. how long have you had the symptoms? His started when he was around 8. He said his arm kept feeling like it had fallen asleep, but it really didn't. He never said anything to his parents about it because his older brother and sister told him it was cancer and if he told his mom and dad they would send him away. How cruel is that?

I have always been high strung but after I had my now almost 5 year old I have had major issues with headaches, neck and shoulder pain. In the last two years I would have tingling in the hands and some numbness and weakness but it would come and go so I just went on and didn't worry about it. Within the last 6 months though I think has been lingering alot more with the last 2 months being unbearable what brought me in was my shoulder hurt so bad had trouble raising it and the numbness in my hand which has now like I said spread to face and neck. There were problems in the shoulder but since cortisone shot did not help at all he wanted to look at the neck when they saw the cm in the neck I got the brain and lumbar mris today. I have bad headaches at base of head and lots of eye pressure! Poor guy I feel so bad for your fiancée!!! I am do thankful for a very strong support system although I'm sure some of them at times thought I was making this up at one time or another because who's is literally in pain every day all day but now got answers and I'm ready to feel better! My depression has been pretty bad the last month or do maybe longer but it just took a while for me to see I was depressed I think I was in denial I guess.