Chiari Malformation type 1

Posted by anorwalk @anorwalk, Jun 19, 2013

Hi,

I’ve been reading all the post on chiari and wondered if anyone has a good out come of the surgery. I have been to 4 neurologist and 1 surgeon and keep getting different answers. 3 drs say I don’t need surgery and the last one said that i really need it or could be paralyzed by any straining. I have a headache all the time and can barely function. Balance problems, numbness and burning in my hands and legs My hurn. Is only 5mm. Any advise? Thank you.

@vbrunette

Lol… Sorry, if you just read around you’ll find many of us have debilitating headaches, dizziness, confusion, skin sensitivity, not really able to use arms or hands much from pain and weakness, temperature control problems, unusual bruising or ability to turn bruising into “blunt trauma”, usually from a fall, nausea, blurred vision, light sensitivity, minor/severe balance issues, seizures, light-headedness, passing out, scoliosis and other related conditions, drooping face, drooling, going right when the GPS says left, food tastes funny, slight drooling, sleep problems, and most of all? PAIN. INCURABLE PAIN. Without any cures, when you look around you’ll see surgery usually makes it worse, this condition makes doctors turn you into a drug addict because there’s nothing they can do. My brain’s on the list for scientific donation at the Miami brain bank to try to help a generation sometime, somewhere because it’s not happening now. There aren’t even any clinical trials. I hope this helps, and may explain other weird or painful things that may begin to happen. But if you have insurance? FIND A SPECIALIST. There’s a new center in Wisconsin and UCLA just opened a center. This is only the beginning. I have 3 college degrees, can’t work, and I think my IQ of 156 is now more like 56.

Jump to this post

Your “pre-decompression” experiences sound exactly like mine: no occipital headaches, mine were diagnosed as sinus headaches but did have your other symptoms. Was actually diagnosed because I blacked out and fell, hurting myself, while I was bending down, and an MRI was o

REPLY

@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred by my nl to one neurosurgeon, because of my diagnosis and symptoms and I was not comfortable with his history of relatively few decompression. We then sought a second opinion from a different facility/group of physicians and a nl and nsg there concurred I may never NEED surgery. Confused by the conflicting opinions, I decided to wait and when my symptoms progressed, returned to my original nl for a referral to the chief of neurosurgery @ a neurological institute/hospital. He recommended I should have surgery sometime SOON as I had a large syrnix in addition to a complex Chiari. I had surgery 6 days later and have residual nerve damage to my left side but timing was not a factor here, nerve damage occurred from cord compression years before my surgery.
I recovered quickly from surgery, but was told by my nsg, it may take a full year to “be yourself again”! And, he was right, patience and pacing your activities is the key to bouncing back and attitude, attitude, attitude!

REPLY
@kjh2017

@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred by my nl to one neurosurgeon, because of my diagnosis and symptoms and I was not comfortable with his history of relatively few decompression. We then sought a second opinion from a different facility/group of physicians and a nl and nsg there concurred I may never NEED surgery. Confused by the conflicting opinions, I decided to wait and when my symptoms progressed, returned to my original nl for a referral to the chief of neurosurgery @ a neurological institute/hospital. He recommended I should have surgery sometime SOON as I had a large syrnix in addition to a complex Chiari. I had surgery 6 days later and have residual nerve damage to my left side but timing was not a factor here, nerve damage occurred from cord compression years before my surgery.
I recovered quickly from surgery, but was told by my nsg, it may take a full year to “be yourself again”! And, he was right, patience and pacing your activities is the key to bouncing back and attitude, attitude, attitude!

Jump to this post

Thanks @kjh2017 for sharing more of your experience. It can be so confusing and frustrating to navigate the waters of differing opinions and recommendations. In case you’re interested, we have several active discussion groups about EDS and scoliosis. You may want to check these out.

– EDS https://connect.mayoclinic.org/discussion/eds/
– Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
– Scoliosis – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/scoliosis-introduce-yourself/

REPLY
@JustinMcClanahan

@kjh2017, @giglgirlnm, and @shane656, welcome to Connect. We are glad to have three new members to this rare discussion and thank you all for sharing a bit about your story with the rest of the members of this group.

I hope @luckygirl will join my welcome and share her experience with decompression surgery with you. @giglgirlnm, would you mind sharing a bit about your experience with decompression surgery with @shane656? @kjh2017, it looks like you also may be able to share your experience with decompression surgery. Did it give your relief?

Jump to this post

Hi, I am sorry to hear that you are having so many symptoms of this horrible condition. I had very successful decompression surgery twelve years ago here in the U.K. I would strongly recommend that you get yourself a really good surgeon, one with experience in this type of work. The only symptom I had was terrible spasms in my chest. It would get so tight that I was rooted to the spot whenever I had one. I was in and out of my doctors surgery for nine years and it was only when I got pain in my thoracic area that my doctor suggested I saw a consultant. This was because by then I had developed Syringomyelia with six syrinx in my spinal cord. This unfortunately has left me with permanent damage and for this pain I take 120×2 pregablin every day. Please get a referral to a consultant who has a lot of experience in this type of surgery before you are left with permenant damage. Straining is very bad for you. You need an urgent MRI scan as this is the only way to see exactly what’s going on in your brain. Best of luck.

REPLY
@mkell13

Hi this is my first time. I was diagnosed 3 years ago with a chairi malformation. My symptoms have gotten worse causing me to not have my life. I have seen 2 different neurologist saying my symptoms are from migraines. How can you tell the difference between migraines and a chairi?

Jump to this post

With an MRI scan.

REPLY
@vbrunette

Lol… Sorry, if you just read around you’ll find many of us have debilitating headaches, dizziness, confusion, skin sensitivity, not really able to use arms or hands much from pain and weakness, temperature control problems, unusual bruising or ability to turn bruising into “blunt trauma”, usually from a fall, nausea, blurred vision, light sensitivity, minor/severe balance issues, seizures, light-headedness, passing out, scoliosis and other related conditions, drooping face, drooling, going right when the GPS says left, food tastes funny, slight drooling, sleep problems, and most of all? PAIN. INCURABLE PAIN. Without any cures, when you look around you’ll see surgery usually makes it worse, this condition makes doctors turn you into a drug addict because there’s nothing they can do. My brain’s on the list for scientific donation at the Miami brain bank to try to help a generation sometime, somewhere because it’s not happening now. There aren’t even any clinical trials. I hope this helps, and may explain other weird or painful things that may begin to happen. But if you have insurance? FIND A SPECIALIST. There’s a new center in Wisconsin and UCLA just opened a center. This is only the beginning. I have 3 college degrees, can’t work, and I think my IQ of 156 is now more like 56.

Jump to this post

Yes, I have absolutely no doubt at all that had I been operated on sooner that perhaps I would not have been left with nerve damage in my back. The pain only started in my thoracic area about 12 months before I had decompression surgery. The longer it’s left untreated the worse it gets. Hope this helps but DO find a surgeon who if familiar with decompression surgery.

REPLY
@vbrunette

Lol… Sorry, if you just read around you’ll find many of us have debilitating headaches, dizziness, confusion, skin sensitivity, not really able to use arms or hands much from pain and weakness, temperature control problems, unusual bruising or ability to turn bruising into “blunt trauma”, usually from a fall, nausea, blurred vision, light sensitivity, minor/severe balance issues, seizures, light-headedness, passing out, scoliosis and other related conditions, drooping face, drooling, going right when the GPS says left, food tastes funny, slight drooling, sleep problems, and most of all? PAIN. INCURABLE PAIN. Without any cures, when you look around you’ll see surgery usually makes it worse, this condition makes doctors turn you into a drug addict because there’s nothing they can do. My brain’s on the list for scientific donation at the Miami brain bank to try to help a generation sometime, somewhere because it’s not happening now. There aren’t even any clinical trials. I hope this helps, and may explain other weird or painful things that may begin to happen. But if you have insurance? FIND A SPECIALIST. There’s a new center in Wisconsin and UCLA just opened a center. This is only the beginning. I have 3 college degrees, can’t work, and I think my IQ of 156 is now more like 56.

Jump to this post

How are you now and are you on medication?.

REPLY
@debim

He is not a specialist in Chiari, but has done decompression surgery, he is one of the best neurosurgeon in our area. I have been with him since 2009 and trust him. He is not quick to do surgeries, that is what I like about him. For pain control, I am now on 40mg of norco a day, but it does not help. I have an appointment with my pain specialist next Friday, but i am not hopeful he will be able to help. My regular doctor told me i was to complicated for him, lol. So I decided to change doctors. I have tried to research options for pain control, but have not been able to find anything.
Thank you for redponding.

Jump to this post

Have you tried Pregablin?. My pain is controlled by taking pregablin 120mgs x daily and sometimes I have to up the dosage if the pain in my back is bad.

REPLY
@mkell13

Hi this is my first time. I was diagnosed 3 years ago with a chairi malformation. My symptoms have gotten worse causing me to not have my life. I have seen 2 different neurologist saying my symptoms are from migraines. How can you tell the difference between migraines and a chairi?

Jump to this post

You need to have am MRI scan of the back of your head. Hasn’t anyone suggested that you have this done?. This is the only way to confirm that it is,or it is not Chiari Malformation. Speak to,your doctor and shout if you have to. The sooner Chiari is treated with decompression the better the outcome for you.

REPLY
@vbrunette

Lol… Sorry, if you just read around you’ll find many of us have debilitating headaches, dizziness, confusion, skin sensitivity, not really able to use arms or hands much from pain and weakness, temperature control problems, unusual bruising or ability to turn bruising into “blunt trauma”, usually from a fall, nausea, blurred vision, light sensitivity, minor/severe balance issues, seizures, light-headedness, passing out, scoliosis and other related conditions, drooping face, drooling, going right when the GPS says left, food tastes funny, slight drooling, sleep problems, and most of all? PAIN. INCURABLE PAIN. Without any cures, when you look around you’ll see surgery usually makes it worse, this condition makes doctors turn you into a drug addict because there’s nothing they can do. My brain’s on the list for scientific donation at the Miami brain bank to try to help a generation sometime, somewhere because it’s not happening now. There aren’t even any clinical trials. I hope this helps, and may explain other weird or painful things that may begin to happen. But if you have insurance? FIND A SPECIALIST. There’s a new center in Wisconsin and UCLA just opened a center. This is only the beginning. I have 3 college degrees, can’t work, and I think my IQ of 156 is now more like 56.

Jump to this post

Definitely, I didn’t have many of the symptoms that others have with Chiari but the sooner it’s treated the better the outcome.

REPLY
@kjh2017

@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred by my nl to one neurosurgeon, because of my diagnosis and symptoms and I was not comfortable with his history of relatively few decompression. We then sought a second opinion from a different facility/group of physicians and a nl and nsg there concurred I may never NEED surgery. Confused by the conflicting opinions, I decided to wait and when my symptoms progressed, returned to my original nl for a referral to the chief of neurosurgery @ a neurological institute/hospital. He recommended I should have surgery sometime SOON as I had a large syrnix in addition to a complex Chiari. I had surgery 6 days later and have residual nerve damage to my left side but timing was not a factor here, nerve damage occurred from cord compression years before my surgery.
I recovered quickly from surgery, but was told by my nsg, it may take a full year to “be yourself again”! And, he was right, patience and pacing your activities is the key to bouncing back and attitude, attitude, attitude!

Jump to this post

Kjh2017. Can I ask if you have been left with nerve pain in your back and if so what medication you take for for it?.

REPLY
@kjh2017

@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred by my nl to one neurosurgeon, because of my diagnosis and symptoms and I was not comfortable with his history of relatively few decompression. We then sought a second opinion from a different facility/group of physicians and a nl and nsg there concurred I may never NEED surgery. Confused by the conflicting opinions, I decided to wait and when my symptoms progressed, returned to my original nl for a referral to the chief of neurosurgery @ a neurological institute/hospital. He recommended I should have surgery sometime SOON as I had a large syrnix in addition to a complex Chiari. I had surgery 6 days later and have residual nerve damage to my left side but timing was not a factor here, nerve damage occurred from cord compression years before my surgery.
I recovered quickly from surgery, but was told by my nsg, it may take a full year to “be yourself again”! And, he was right, patience and pacing your activities is the key to bouncing back and attitude, attitude, attitude!

Jump to this post

Hi,
Just curious. Can I ask what medication you’re taking for your back pain?. I have and had exactly what you had and I too am left with damaged nerves in my back. I take pregablin 150mgsx2 daily and I use a patch on my back at night which helps a bit. Some nights are bad and I often have to take another pill before I can get back to sleep.

REPLY

Hi, my name is Leanne Matthews. I am from Wichita Kansas. I just got the diagnosis of Chiari malformation type 1 2 weeks ago. I have thoroughly researched my disease and I’ve come to the conclusion that I was born with it and started displaying symptoms when I was around 12 or 13 years old. My symptoms have progressively gotten worse over the Year and have really come to a head in the last 9 weeks. Just prior to my diagnosis I spent the weekend in the emergency room with symptoms of heart attack and stroke and the onset of a really bad stutter and migraines all in one weekend. I have my first appointment with my neurosurgeon on the 28th of this month. I have gotten signed up with the Mayo Clinic and have access to a 24-hour nurse. So as of now I guess my only question is aside from the Topamax that my doctor is prescribing me at bedtime every night is there any suggestions you can offer me as to what I can do to help ease these migraines?

REPLY
@awesomesauce17

Hi, my name is Leanne Matthews. I am from Wichita Kansas. I just got the diagnosis of Chiari malformation type 1 2 weeks ago. I have thoroughly researched my disease and I’ve come to the conclusion that I was born with it and started displaying symptoms when I was around 12 or 13 years old. My symptoms have progressively gotten worse over the Year and have really come to a head in the last 9 weeks. Just prior to my diagnosis I spent the weekend in the emergency room with symptoms of heart attack and stroke and the onset of a really bad stutter and migraines all in one weekend. I have my first appointment with my neurosurgeon on the 28th of this month. I have gotten signed up with the Mayo Clinic and have access to a 24-hour nurse. So as of now I guess my only question is aside from the Topamax that my doctor is prescribing me at bedtime every night is there any suggestions you can offer me as to what I can do to help ease these migraines?

Jump to this post

Hi Leanne (@awesomesauce17), welcome to Connect. I moved your message to the active Chiari Malformation type 1 discussion group to connect you with other members discussing this condition. I invite you to read through the posts here: https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/

Leanne, how long have you been taking Topamax (topiramate)? Did you doctor say it would begin to help with the headaches eventually?

REPLY
@awesomesauce17

Hi, my name is Leanne Matthews. I am from Wichita Kansas. I just got the diagnosis of Chiari malformation type 1 2 weeks ago. I have thoroughly researched my disease and I’ve come to the conclusion that I was born with it and started displaying symptoms when I was around 12 or 13 years old. My symptoms have progressively gotten worse over the Year and have really come to a head in the last 9 weeks. Just prior to my diagnosis I spent the weekend in the emergency room with symptoms of heart attack and stroke and the onset of a really bad stutter and migraines all in one weekend. I have my first appointment with my neurosurgeon on the 28th of this month. I have gotten signed up with the Mayo Clinic and have access to a 24-hour nurse. So as of now I guess my only question is aside from the Topamax that my doctor is prescribing me at bedtime every night is there any suggestions you can offer me as to what I can do to help ease these migraines?

Jump to this post

I just started taking Topamax 2 weeks ago and it does appear to be helping with the migraines. I just found out yesterday that I could have started taking two 25 mg tablets a day a week ago. But apparently I did not read the label correctly when I got the prescription filled so I just started taking the medication twice a day yesterday.

REPLY
Please login or register to post a reply.