Aa
ok, so got my mri report: ceribellar tonsils descend 7 mm below the foramen magnum
Does this mean I would be a candidate for surgery or that Surgery could possibly help me?
A little history is I have had headaches my entire life, but not that often. i would often get series of headaches for months at a time then no headaches for years. I never noticed any kind of worsening or headaches from sneezing coughing, ect., but then again i was not paying attention to that. I felt pretty normal besides suffering from depression most of my life since my teenage years, but that could have just been due to my family circumstances and the death of most of my family.
Then a year ago, out of nowhere I had a grand mal seizure and hit my head very hard, ended up with a contusion the size of an extra large egg, and couldnt remember that I had kids or what my name was at first, then slowly over the next 20 min or so I started to remember everything again. They couldnt find the cause of my seizure, so they left it alone, about 2 months later I started experiencing debilitating fatigue where I would wake up from 12 hours of sleep an still fall asleep driving on the way to work. I tried changing everything from exercise to diet to stopping my birth control to anything I could think of. nothing helped so I went to the doctor.
My ferritin was a little low but iron was fine, she thought my fatigue was due to that, but it didnt help, we did other blood tests to search for other things, but nothing helped, we found out in the process that I am in a hypercoaguable state, meaning I have protein s deficiency and factor V leiden which both put me at an increased risk for blood clots, so I cannot take birth control anymore, but didnt explain my symptoms.
Then about 6 months ago I started experiencing pain beyond belief, almost like if you had the flu, the type of body aches you get with that, but times 10. I was in tears and trying to use heating pads and baths and anything to manage the pain, I ended up in the hospital a few times to try to manage the pain and my doc finally prescribed me some percocet. The percocet helps, but does not take away the pain completely. I gained 35 lbs in a matter of 3 months. I tried to cut my calories to 1200 per day and then started excersizing for an hour and a half each day which was excruciating and exhausting, but still kept gaining weight. Since then we have run even more and more tests
We ran every blood test you could think of, I found out that my thyroid was a little low, but not clinically hypothyroid, actually the relationship between my tsh and freet4 was way off so we started me on some thyroxine very small dose to see if it would help my weight gain of 35 lbs and fatigue. the weight gain has recently stopped but I have not been able to lose anything, but stopped exercising as much because my pain has gotten too bad. I have given up on a diet because nothing I tried helped.
So I started getting blurry vision and headaches very bad, a migraine type of headache for 13 days straight. On the 7 th day I went to the hospital in tears, they gave me dilloted and morphine and everything and nothing helped it. they sent me home and said they dont know whats causing my headache after doing a ct scan. I have also been experiencing memory loss like nobody's business, cant stay focused, I am having tremors in my hands and signs of poor circulation. My pain is getting worse and worse. My pain is in my lower back through my hips, like something is eating away at my hip bones and mostly in my right leg like someone is pulling my muscles apart and then in a band like sensation at my bra line, which makes it hard to breathe sometimes, and have gone to hospital for chest pain but nothing was found. I have fallen down the stairs now 3 times because my muscles just collapsed, and then had another appointment and my doc sent me for an mri for possible ms. just was diagnosed and got my report today that said everything else looked normal, except: there is minmal mucosal thickening in the floor of th right maxillary sinus and that the cerebellar tonsils descend 7mm below the foramen magnum. the ipmression was : Chari 1 malformation.
My primary care said that this could cause blurry vision and headaches, but not fatigue and not pain in my back.
I have not had any imaging done on my spine except for 1 x ray. could my pain in my low back and hips and leg be related, or caused by syringemyegia (sp?) ir could just the chari 1 malformation cause this?
if I had surgery, would my symptoms most likely dissapear, or at least the painful ones? I am only 25 and have 2 beautiful children, I just want to be told that I have hope either with surgery, or that I should be looking somewhere else for the cause of my pain.? Any help would be appreciated.
A little history is I have had headaches my entire life, but not that often. i would often get series of headaches for months at a time then no headaches for years. I never noticed any kind of worsening or headaches from sneezing coughing, ect., but then again i was not paying attention to that. I felt pretty normal besides suffering from depression most of my life since my teenage years, but that could have just been due to my family circumstances and the death of most of my family.
Then a year ago, out of nowhere I had a grand mal seizure and hit my head very hard, ended up with a contusion the size of an extra large egg, and couldnt remember that I had kids or what my name was at first, then slowly over the next 20 min or so I started to remember everything again. They couldnt find the cause of my seizure, so they left it alone, about 2 months later I started experiencing debilitating fatigue where I would wake up from 12 hours of sleep an still fall asleep driving on the way to work. I tried changing everything from exercise to diet to stopping my birth control to anything I could think of. nothing helped so I went to the doctor.
My ferritin was a little low but iron was fine, she thought my fatigue was due to that, but it didnt help, we did other blood tests to search for other things, but nothing helped, we found out in the process that I am in a hypercoaguable state, meaning I have protein s deficiency and factor V leiden which both put me at an increased risk for blood clots, so I cannot take birth control anymore, but didnt explain my symptoms.
Then about 6 months ago I started experiencing pain beyond belief, almost like if you had the flu, the type of body aches you get with that, but times 10. I was in tears and trying to use heating pads and baths and anything to manage the pain, I ended up in the hospital a few times to try to manage the pain and my doc finally prescribed me some percocet. The percocet helps, but does not take away the pain completely. I gained 35 lbs in a matter of 3 months. I tried to cut my calories to 1200 per day and then started excersizing for an hour and a half each day which was excruciating and exhausting, but still kept gaining weight. Since then we have run even more and more tests
We ran every blood test you could think of, I found out that my thyroid was a little low, but not clinically hypothyroid, actually the relationship between my tsh and freet4 was way off so we started me on some thyroxine very small dose to see if it would help my weight gain of 35 lbs and fatigue. the weight gain has recently stopped but I have not been able to lose anything, but stopped exercising as much because my pain has gotten too bad. I have given up on a diet because nothing I tried helped.
So I started getting blurry vision and headaches very bad, a migraine type of headache for 13 days straight. On the 7 th day I went to the hospital in tears, they gave me dilloted and morphine and everything and nothing helped it. they sent me home and said they dont know whats causing my headache after doing a ct scan. I have also been experiencing memory loss like nobody's business, cant stay focused, I am having tremors in my hands and signs of poor circulation. My pain is getting worse and worse. My pain is in my lower back through my hips, like something is eating away at my hip bones and mostly in my right leg like someone is pulling my muscles apart and then in a band like sensation at my bra line, which makes it hard to breathe sometimes, and have gone to hospital for chest pain but nothing was found. I have fallen down the stairs now 3 times because my muscles just collapsed, and then had another appointment and my doc sent me for an mri for possible ms. just was diagnosed and got my report today that said everything else looked normal, except: there is minmal mucosal thickening in the floor of th right maxillary sinus and that the cerebellar tonsils descend 7mm below the foramen magnum. the ipmression was : Chari 1 malformation.
My primary care said that this could cause blurry vision and headaches, but not fatigue and not pain in my back.
I have not had any imaging done on my spine except for 1 x ray. could my pain in my low back and hips and leg be related, or caused by syringemyegia (sp?) ir could just the chari 1 malformation cause this?
if I had surgery, would my symptoms most likely dissapear, or at least the painful ones? I am only 25 and have 2 beautiful children, I just want to be told that I have hope either with surgery, or that I should be looking somewhere else for the cause of my pain.? Any help would be appreciated.
COMMUNITY LEADER
Hi,,,,,did they check u for a syrinx, tethered cord, ICP, POTS, ehlers-danlos?
There are related conditions that can be causing some of ur pain as symptoms are similar....so do ask this next one about some of them.....
Keep us posted and Good Luck with Dr Kim,.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
This is an older thread and the member u r replying to has not posted since lat yr...u can create a new thread to get the active members to reply to ur post, or u can send a PM to the poster of this thread as a PM (private message) will generate an e-mail to be sent so the member knows someone is trying to make contact.
I see u have a NS and are considering surgery......may I ask what symptoms u have and if u have ne of the related conditions?
I went to the doctor on Tuesday(follow-up) he told me that I had to learn to live with the symptoms because there was no cure and that I had no obstuction. There is crowding but no obstuction of CSF. He increased my depakote to 750 and prescibed me sprix for the headaches. I have compression at leat 4-6 times a day and the ringing never stops. I possess all but maybe two of the symtoms of chiari. I am so very tired mentally and physically. I just dont want to go through sometimes. I am so happy I found this forum, yall really helpme see through. I go see a specialist for a second opinion here in Houston a Dr **** Kim. I see his PA who will go over the MRI to see if there is a need to see the surgeon and we will go from there.
Forgot to tell you, my herniation is 8mm. My MRI cine shows complete obstruction of cerebral spinal fluid on the back side of my head. Like you, I have had other symptoms for years but did not know why.... It's sad to say but it's really common in the sense that most of us have suffered for a long time. The good news is that we do have something treatable :-) Lisa
Hi Jennifer....
I agree that you describe Chiari symptoms! Long story short.... I have it and need the surgery. My daughter has it and had surgery with Dr Oro nine years ago. Her symptoms were SEVERE and she is great now. Dr Oro is the top expert in the field do not worry about that. Hang in there sweetie you are certainly not alone :-) Lisa
I agree that you describe Chiari symptoms! Long story short.... I have it and need the surgery. My daughter has it and had surgery with Dr Oro nine years ago. Her symptoms were SEVERE and she is great now. Dr Oro is the top expert in the field do not worry about that. Hang in there sweetie you are certainly not alone :-) Lisa
I have the same symptoms as you and also 7mm. I am seeing a neuro surgeon and he says that surgery will help with symptoms, potentially, but there is no cure. I am willing to try it, because as you know, the symptoms are hell. Good luck to you. Gia
Did you read the poem by Dr. John Oro that is posted at the heading of this forum? It is posted by SelmaS. You are in good hands. This is your Doctor!!!!! -sass-
Hello and welcome! I dont have much to add to what Selma has already said but did want to make sure to welcome you. The concerns over surgery are exactly what I am going thru at this time. The way this was explained to me is the goal of surgery is to make room for things to go back to the way they are supposed to be. This can take a long time sometimes up to 3 years to see full benefit. It takes a long time for nerves to regenerate etc. The goal of surgery is to stop progression and there is no guarantee of symptom relief. Most do improve some in the hands of a Chiari specialist. I am so glad you are being sent to one right away. Alot of us have to learn the hard way the difference between a regular NS and a NS who devotes his practice to Chiari. You will be in good hands with Dr Oro. I have heard good things about him.
Again, welcome and I hope you find the answers you need soon!
Pam
Again, welcome and I hope you find the answers you need soon!
Pam
oh i have degenerative disk disease too... a lot of this is making more and more sense... thank you for your responses... I really appreciate it.
COMMUNITY LEADER
HI...sorry DDD= degenerative disk disease...it is not a real disease, just the name of a natural aging process that we tend to get a bit sooner than most.It can cause some issues, but it is not as bad as the name implies.
Dr Oro, should know what do do for u and send u for the tests u will need, if u need an ENT he will tell u...but yeah that to me suggests sinus.....
Ur primary most likely does not have a clue, and do not hold it against him, most NS's do not have a clue either...the med schools r not teaching current info on chiari...so, unless they do their own research like a chiari specialist u will not get a dr that knows the cutting edge techniques for chiari.
U will be in good hands.....please keep us posted : )
"selma"
What is DDD? I have not had a CINE mri or any other mri's except for a head mri. I will be having someone call me to set up an appointment with dr. john oro a chiari specialist soon, and does that minimal mucosual whatever sound like a sinus issue? will he talk to me abou that or should I go see someone about that? my primary care ***** and doesnt discuss anything with me.
COMMUNITY LEADER
Hi Jenn,
Well the symptoms coming and going is typical chiari as symptoms do tend to cycle...so what u describe is pretty much what many of us have experienced too! A trauma to the head can trigger symptoms to increase, so this is not so unusual.,
There is no way u can get a guarantee that u will be better or pain free after surgery....some actually will get more pain after surgery and there is no way to know b4 hand who may have set backs and these issues. Getting to a very experienced dr, one that is a true chiari specialist can help minimize those issues, but will not eliminate how ur body responds to the surgery...so it is possible u could feel worse after.
I had surgery, I am doing better than I was b4, and u have to look at the risks of not having surgery as well as having it and see if the benefits out weight them....
Having breathing issues is one symptoms that is of concern....and I have to ask if u had a CINE MRI?U need to find out if u have a CSF obstruction and over crowding....plus the seizures is something a few chiarians do get as well.The size of the herniation is not as important as the obstruction and how it is impacting ur overall health.
This is something u have to get a full eval to see if u have a syrinx....and u have to check more then just the cervical spine as they have been found in the thoracic and lumbar spine too,.Plus, u will want to rule out tethered cord and a few other related chiari conditions.
Many of us also do have auto immune issues so many have Hashimoto's thyroiditis....Sinus issues run amuck with us too...we get it all.
Chiarians can have multiple conditions going on at the same time, so u could have something like Ehlers-Danlos adding to ur muscle pains....DDD, bulging disks, sleep apnea, which pain and inadequate sleep add to the fatigue u r feeling.
Now to spend more quality time with ur 2 kiddies, do things in moderation....pick and choose what has to be done and rest up for special days so u have the energy to enjoy it the way u should. Listen to ur body!
"selma"
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