I am suffering from CM1, I get severe headaches along with numbness in my arms, and twitching in my limbs, I am currently on numerous meds and nothing seems to help. I use Ice to numb my head but that only lasts a few min, does anyone who knows what I am going through have any other suggestions on what might help?
May I ask if u been to a NS other than getting a dx?All of the members here will say the most important thing is to find a chiari specialist. We have a thread with drs names on it.Depending on where u r from u may need to travel to get to a dr.
Please read the welcome thread at the top of the forum.Also the poem by Dr Oro....it can help u by giving the hope there r drs out there that understand this condition.
U have found a great place for info and support.I hope u continue to post here.
Let us know where u live and we will assist u to find drs to research.
I'm new to this site but what you are describing also happened to me. I started to have numbing in my right arm. That's when my neurologist did an mri and sent me to a neurosurgeon. The NS explained that the numbing was nerve related and once those nerves are damaged they won't repair themselves. I chose to go ahead with the surgery before any more nerve damage was done. I also had other symptoms, severe headaches all the time (nothing helped) and I couldn't yell or strain at all without the headache getting so bad I would nearly pass out! I had surgery on dec 9 and those symptoms went away ( my arm is still numb, but not more numb). Unfortunately, at this time I have a spinal fluid leak, I'm assuming from the patch over my dura, and I'm on this site to see what has happened to others. Good luck with your chiari! This site is really helpful to find out others' storiesand what they have done. I've done so much research on the internet, but this site is really great!
Do you know if you have Syringomyelia (a CSF leak)?
Do you know what your herniation size is?
Definitely find a Chiari Specialist! The closest I can find to you is Dr. Remmy Gold in Parkersburg, West Virginia. That's about 350 miles. You also have DuPont Children’s Hospital in Wilmington, Delaware - about 400 miles. And The Chiari Institute in Great Neck, New York - also about 400 miles.
There may be some closer, but those are the ones I know of.
As far as what might help. I know it sounds scary, but in my humble opinion (I'm not a health care professional, just someone that's had the operation), surgery is the only real way to get relief once severe symptoms start. There is no cure for Chiari, but the surgery can help alleviate pain and stop other symptoms progression.
Yes Selma I have been seeing a NS for several years now. I was in a car accident back in 98'. That is what caused some of my aliments. I just has surgery 2/08 for a disketomy/fusion c5-6. After that surgery, I was good for the first 3 weeks, then back down again. The symptoms came back worse than ever, which I was told might happen as I heal. I got better several weeks after. And then almost 6 months to the day I had surgery all my symptoms came back full force along with the severe headaches, the confusion, balance problems, blury vision, the shocking down my spine. So I went back to the dr for another MRI which showed low lying tonsils. I reviewed my old MRI reports and those stated the same along with other problems, none of which I was made aware of by my DR. He then released me and said there was nothing more he could do for me?!! HUH?
While looking for a new NS, I started having TIA's. Transiment Ischmic Attacks, other wise known as mini strokes. Being rushed into the hospital, the NS on call there I took a liking to, Dr. Lee Guterman. I did some research on him when I was released and decided to stay with him. Until now. He has not helped me at all, he unsure if the surgery will help me, my chances with him he states are 33% of getting better. So now I am stuck. I have sent in an application to the chiari institute in great neck, ny. I am getting all my test results for them ready to send and hopefully will be seen there soon. In the mean time, I cannot work, I have a little one to care for and no income and her father moved out of state and is not taking care of his responsibility financially, that is another battle I am fighting. My friends and family here held a benefit for me to help with living and medical expenses but it wasn't nearly enough. There is also a site up for me if you are intersted in reading, www.helptriciagetsurgery.com A friend of mine set it up
I am also new to this site! I'm trying to find any and everyone who knows what I am going through and some support along the way. I have friends and family who care but noone who can REALLY understand.
What surgery did u have? The chiari?
I know what you mean about the yelling and straining, same here. As well as when I have a bowl movement, the pressure in my head is so intense but usually disapates within a few minutes, but on tuesday I tried to go and OMG, I thought my head was gonna explode! And the pain and pressure stayed til this morning. Nothing helped not the meds, ice, changing positions, NOTHING. and that scares me.
I hope you are doing better than you were before the surgery
My herniation is at 3mm. I just had a CSF Flow study done, I should get the results this week.
Thank you for your research!! So nice of you.
Yes I do know about the Chiari Institute, I have an app in and am waiting for an appt there. I agree with you that surgery is the only relief of the symptoms, but the NS I have here won't give me a straight answer if he has ever performed a chiari surgery or not and the more and more I see him the more I am uncomforatble with him. That is how I stumbled upon this site, doing research. Thank you for your help!
Unfortunatly...u have heard what alot of us have....u have chiari and I can not help u , goodbye!!....I had 2 NS's do the same thing!!
I am sending my info as well to TCI in NY.....I do not have the TIA's...but can relate to the frustration and pain.....was the dr kidding 33%?
Do u know if u have a syrinx like Shane has asked?....or tethered cord?.....I feel that sosmetimes drs stop looking when they find something instead of looking for everything that could be connected b4 they do nething....if it is an emergency that is one thing...but for 2 NS to give up without doing any additional testing...to me is malpractice!If they didn't know enuff about the condition, they never should have booked the appointment.
Now I am venting...sorry.
It is great that u have a support system in place ...fundrasing ect....
I hope u continue to use this board for support and keep us updated on ur progress to Great Neck!
Well the second NS isn't saying he can't help me, he is telling me he dosn't know what to do! HAH! yeah that make me at ease!
I do not know if I have a syrinx or tetherd cord due to the fact that he has yet to test me on it. On Wednesday, I was driving my sister and nephews home and when I went to turn my head to look to see if a car was coming, I got a shocking pain down my spine and into my left leg, I couldn't move,I had to pull over. When I got home I immediately called the Dr's and went in, I could only see his PA cuz the Dr was in surgery. I questioned him on why they aren't ordering these tests? Why are they not looking at the whole picture? I really blew up at the poor guy but I am so frustrated. He didn't even know what tethered cord syndrome was!! He said he will order another MRI, hopefully a full spine. but of not will def get the lumbar, I told him I also have spina bifida occulta and he said that may be the reason for the leg pain, I said maybe not if I felt it start at the top of my spine and go all the way into my leg. I swear they don't listen, they hear you talking but they don't listen. So.....he said he would do his best to help me and find a solution, this is the PA, he said that this is ridiculous and that I should be helped. DUH!!! isn't that your job?! Yes I am venting to because again the pressure headache is back, my legs are throbbing and I can't sleep......
What gets me to is that if you go and look in the medical text books, there is close to nothing in them on chiari. Everything you find is on the net now. The first case of Chiari was in the 1800's and they say it is a rare condition but in reality it isn't, it's a misdiagnosed condition that the Dr's were not schooled on so now they don't know how to handle or treat it. More and more everyday I hear about this condition and how people are suffering from it and how Dr's are making us all feel like we are crazy and say it's all in our heads! Well it is, literally! UGH..........
I didn't have a chance to go through and read what everyone has said about Chiari, but I thought I would share with you guys the information that I do have on the disorder.
My cousin was diagnosed with Chiari 1 in September of 2006. It started with the headaches, dizziness, couldn't stay balanced, was constantly throwing up. He went to numerous doctors, and 4 different Emergency Rooms and everyone kept telling him and my aunt that he had the flu, or a stomach virus, or that he had food poisoning.
One night things just got so bad, his words were slurring, his tounge was sticking out the right side of his mouth, and my aunt rushed him the Emergency Room and demanded that they tell her what was going on with her son or she would not be leaving the hospital.
After numerous MRI's, CT scans, X-Rays, and other tests that were ran, he was confirmed as having Chiari Malformation Type 1.
He spent 3 weeks in the hospital, trying to get it under control, and when nothing worked his NS decided that he was going to do surgery.
When you have Chiari, your brain sits on top of your brain stem and blocks off the flow of the fluid, causing spinal fluid to back up in your spinal column. The NS went in and had to remove a VERY miniature part of his brain and drain the fluid. He spent another month in that hospital and spent 2 weeks in a rehab center before they released him and let him go home.
In December of 2006 (the day after Christmas) he had been complaining of a headache all day long, but we figured he was okay because it had been an ongoing thing since the surgery and we were told that it was to be expected.
At 4:00am (12/27/06) he got out of bed to go to the bathroom and get something to drink, my aunt was up getting ready for work, and she told him she wanted to take his blood pressure before he laid back down to go to sleep (this was routine) ... he sat down on the bed for her to take his BP and he kept fidgeting and would not sit still. She kept telling him "If you want me to do this, I need you to stay still" and all of a sudden, he took a gasping breath, and fell backwards.
He had quit breathing, and after my dad administering CPR, he got his heart started again, but he was never able to breathe on his own again. Because his heart had not been restarted in time and air had not been restored to his brain in enough time... He spent 5 days in a coma before being declared 100% brain dead, and was taken off his respirator.
We lost my 15 year old cousin on 1/1/2007 due to Chiari Malformation Type 1. Something we were told was a VERY common disease among young children. We were told that he would go home and be just fine. We were told that those headaches were to be expected and that everything would be just fine...
Everything was NOT fine.
If you are experiencing these headaches, and have been diagnosed with Chiari, I would HIGHLY recommend that you get it checked out, and ask about the surgery that can be done. Don't let it go too far. I would hate for this to happen to ANYONE else.
What was the name of this Dr, who did your cousins surgery? And where?
Also, as far as I know and from what I have read, the surgery does not entail removing any part of the brain, but does remove part of the skull to relieve the pressure on the brain to ease the progression of it growing into the canal. R u sure he had part of his brain removed?
Hi..I am sorry for ur loss as well.This can be a very devestating condition. I have read where some have lost their lives to it, but there was another underlying condition that was not recognized.
I agree with edeneyes80, that the true chiari drs do not remove part of the brain, but the skull...I have heard that they may "burn" or cortorize the tips of the herniation..but that is to cause them to shrink.
I also wonder who the dr was in this case, and if he was in fact a chiari specialist.
Again, I am very sorry for ur loss and thank you for sharing ur story with us.
I can totally relate to ur frustration.......I was to see 2 NS...and one was a "chiari" NS...BS!!.....Neither of them could help me ....the first said I did not have it, but wanted to treat my cervical stinosis...the second one said I had it, but it was "above him on how to treat me"
BTDT.....so I do understand.It is because u r not dealing with a chiari specialist...once u do u will see a difference.
Everytime u deal with a non-chiari dr...read Dr Oro's poem...it helped me get thru and gives hope that I will find a chiari dr that understands.
I'm trying to get to the institute in NY, but the lack of funds is what's holding me back. I have no income at all and the benefit funds that were raised are gone. I am waiting to hear if I was approved for social security but where I live it could take up to 3 years for that. I've applied for all the assistance I can get but I'm afraid that soon enough I am going to have to move into a shelter. There are no chiari specialists where I live and that is the closest one to me, 400 miles away! I'm not giving up, I pray everyday that God will help and lead me through all this, but It's very draining on me. Everything seems to be coming down all at once!
I am sorry u r in a place u can not move quickly to change....but do take steps forward.Locate a group willing to help raise funds.....and try the links that help with travel expenses......there was even a group that helped those without insurance....I will try and locate that info for u....
U may PM me ne personal info, if that might be easier than in an open forum.
There r options out there....and I am sure u will find a way to get the much needed help u r seeking.
It is long, the issue is not how long it is but if it is wide as well and creating a CSF obstruction.
Some with a 3mm herniation can have more issues then someone with a longer one at 16mm's....more testing will indicate how ur Chiari is affecting u and ur overall health.
A CINE MRI should be done as well as a complete spine MRI.
and related and non related conditions with similar symptoms should also be ruled out.
Those with Chiari are prone to connective tissue disorders as well as some auto immune conditions....and these ALL need to be ruled out as they can affect how u feel and heal should u be a candidate for surgery.
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