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Post Op CM decomp 2 years symptoms returning; help pl
Hi everyone,
I'm so happy to have found this forum; which has encouraged me to post my situation and ask fellow Chiarian's what their take is on this scenario! I thank all who take the time to read and reply.
I was dx Oct 2008, had surgery Nov 2008 for Chiari Type 1 with a syrinx. At the time, I also had a severe chin on chest deformity. I had to have a 3 part surgery; first the decompression, then I had anterior and posterior spinal surgery with 2 rods from the base of my neck thru to my thoracic spine; I have over 30 screws throughout. I have an aggressive form of Psoriatic arthritis and Ankylosing spondylitis which has masked many of my symptoms for years and years. I am 33 years old, and post op, I was good, up until recently I have felt good, I started a new medication for my arthritis which improved mobility, my spine was stabalized. Although the headaches have never gone away, up until weeks ago, I dismissed them as having a fused neck & spine; goes with the territory or so I thought.
Now since about May 2010 I started getting spotting tingling in my left leg; then my arms started to get pins and needles and now they randomly fall asleep and daily. Back when the symptoms came on noticably I had started to exercise on a regular basis, have lost 60 lbs this year and then started to attribute my pains to working out and causing straining but the tingling won't go away. I find it hard to focus on stuff and feel like I get these total body shivers and then I stumble.
Now with all that said; I began to investigate, given all the major surgeries I was going thru, my Neurosurgeon who I believe to be amazing did right by me; however; I never ever thought Chiari's could return, like a broken bone, I thought they fix you and your better....Only to learn, this is isn't true??? My question is how can the symptoms come back if they've fixed it?? I don't understand....Is this considered a disease or a syndrome???
I'm so happy to have found this forum; which has encouraged me to post my situation and ask fellow Chiarian's what their take is on this scenario! I thank all who take the time to read and reply.
I was dx Oct 2008, had surgery Nov 2008 for Chiari Type 1 with a syrinx. At the time, I also had a severe chin on chest deformity. I had to have a 3 part surgery; first the decompression, then I had anterior and posterior spinal surgery with 2 rods from the base of my neck thru to my thoracic spine; I have over 30 screws throughout. I have an aggressive form of Psoriatic arthritis and Ankylosing spondylitis which has masked many of my symptoms for years and years. I am 33 years old, and post op, I was good, up until recently I have felt good, I started a new medication for my arthritis which improved mobility, my spine was stabalized. Although the headaches have never gone away, up until weeks ago, I dismissed them as having a fused neck & spine; goes with the territory or so I thought.
Now since about May 2010 I started getting spotting tingling in my left leg; then my arms started to get pins and needles and now they randomly fall asleep and daily. Back when the symptoms came on noticably I had started to exercise on a regular basis, have lost 60 lbs this year and then started to attribute my pains to working out and causing straining but the tingling won't go away. I find it hard to focus on stuff and feel like I get these total body shivers and then I stumble.
Now with all that said; I began to investigate, given all the major surgeries I was going thru, my Neurosurgeon who I believe to be amazing did right by me; however; I never ever thought Chiari's could return, like a broken bone, I thought they fix you and your better....Only to learn, this is isn't true??? My question is how can the symptoms come back if they've fixed it?? I don't understand....Is this considered a disease or a syndrome???
Wow, I did'nt expect such a nice response to my posting! I sincerely thank each and everyone of you for responding!!!
Like I said, to me I feel like I have just been "re-diagnosed" with this Chiari; going thru all the extensive surgeries and extensive hospital stays under traction; I truly didn't get what this condition was all about. Fortunately; I do have an amazing NS and I see him on the 25th so hopefully I will find out. All my GP did was take an X-ray of my C-spine - they never phoned with any results as of yet!
All my life, I have had problems and for years I was dismissed; told to have my head checked....boy I guess I should of... but the doc wasn't meaning it nicely!
To Jennyfoo - I 100% agree with you, having PA and AS most of my issues are forever being blamed for those diseases; and frankly up until a few months ago, I would of accepted it as that... but now that my arthritis is under control, I'm really noticing the neurological issues that I'm having! Does this mean I'll never be symptom free? Sorry door bell.. will write more later
Like I said, to me I feel like I have just been "re-diagnosed" with this Chiari; going thru all the extensive surgeries and extensive hospital stays under traction; I truly didn't get what this condition was all about. Fortunately; I do have an amazing NS and I see him on the 25th so hopefully I will find out. All my GP did was take an X-ray of my C-spine - they never phoned with any results as of yet!
All my life, I have had problems and for years I was dismissed; told to have my head checked....boy I guess I should of... but the doc wasn't meaning it nicely!
To Jennyfoo - I 100% agree with you, having PA and AS most of my issues are forever being blamed for those diseases; and frankly up until a few months ago, I would of accepted it as that... but now that my arthritis is under control, I'm really noticing the neurological issues that I'm having! Does this mean I'll never be symptom free? Sorry door bell.. will write more later
COMMUNITY LEADER
Hi and welcome to the chiari forum.
As the others have already mentioned....there is no cure , no "fix" for chiari....surgery is a means to help slow progression.
For many slowing the progression means preventing the formation of a syrinx....since u already had one, my question is how often do u have an MRI to see if it shrunk or if it grew?
Also, have they checked u for scar tissue?...it can form and cause a CSF blockage and many of the chiari symptoms......
Next...depending on what u r doing for exercise u may be triggering ur chiari symptoms....lifting and straining is something u should avoid....now u can lift, but only a certain amount.....which is not by most standards considered exercise.
And last, were u checked for related issues like tethered cord?...Ehlers-Danlos?...Intercranial Hypertension (AKA Peusdotumor Cerebri)?, Sleep Apnea?
I have also heard where the hardware...screws and such can become an issue...loosen up that require surgery to tighten...has this been checked?
Glad to have u join us here, but not happy for the reason u had to seek us out.
"selma"
As the others have already mentioned....there is no cure , no "fix" for chiari....surgery is a means to help slow progression.
For many slowing the progression means preventing the formation of a syrinx....since u already had one, my question is how often do u have an MRI to see if it shrunk or if it grew?
Also, have they checked u for scar tissue?...it can form and cause a CSF blockage and many of the chiari symptoms......
Next...depending on what u r doing for exercise u may be triggering ur chiari symptoms....lifting and straining is something u should avoid....now u can lift, but only a certain amount.....which is not by most standards considered exercise.
And last, were u checked for related issues like tethered cord?...Ehlers-Danlos?...Intercranial Hypertension (AKA Peusdotumor Cerebri)?, Sleep Apnea?
I have also heard where the hardware...screws and such can become an issue...loosen up that require surgery to tighten...has this been checked?
Glad to have u join us here, but not happy for the reason u had to seek us out.
"selma"
Hi,
My Dr is Dr Di from the Cleveland Clinic. Dr Di said I could get adhesions and he could go back in and clean it up if symptoms return. Dr Di uses a laser and the surgery is less evasive than the other type. I felt relief of symptoms in 3 days after surgery!
I was like you I was under the understanding that after the surgery I would be over Chiari. I learned to except that my life would be the same! Let me tell you it is a lot better than it was before surgery. Knowing that it can be fixed if it gets too bad is comforting to me.
My Dr is Dr Di from the Cleveland Clinic. Dr Di said I could get adhesions and he could go back in and clean it up if symptoms return. Dr Di uses a laser and the surgery is less evasive than the other type. I felt relief of symptoms in 3 days after surgery!
I was like you I was under the understanding that after the surgery I would be over Chiari. I learned to except that my life would be the same! Let me tell you it is a lot better than it was before surgery. Knowing that it can be fixed if it gets too bad is comforting to me.
Chiari isn't a disease or syndrome; it's a condition. It's a progressive condition. There is no cure. Surgery isn't a fix, it's just a wY to delay progression. Over time, it usually gets worse. The back of the skull is misshapen, too small, causing the cerebellar tonsils to herniated into the spinal canal. Some people will experience symptoms as a child, others, not until their 30s or 40s and sometimes never. Often, an accident, some kind of trauma or manipulation to the head or neck can cause things to progress.
Mine was not symptomatic other than headaches, neck pain, and head pressure that I didn't realize wasn't normal, until I had a slip-and-fall accident about a year ago. Ever since, Ive progressively been getting worse.
I too blamed my neck pain on Ankylosing Spondylitis or psoriatic arthritis inflammation. My pcp even blamed my numbness in my hand and arm on facet arthropathy in my neck, compressing nerves, but when I saw a neurologist, he said I just had a" touch of arthritis" in my neck, as everyone gets with age. My rheumatologist said my neck was bad for someone twice my age(33). So I don't know who to believe about the hand and arm numbness. I personally think it's Chiari related though, since it came on the same time as my other neurological symptoms. AS certainly doesn't account for my foot and leg numbness and horrible muscle spasticity, the headaches, or the dizziness and vertigo.
We're stuck between a rock and a hard place, it seems. With the AS damage, who truly knows what's causing the symptoms? Having an autoimmune disease, doctors are quick to try to blame all symptoms on it too. My neurological symptoms were passed off as having to do with my autoimmune issues for far too long. At least you got in and had the decompression surgery done. I've been fighting to see a neurosurgeon for 4 months, since my Opthamologist found I have optic nerve swelling(papiledema) from intracranial pressure. I'm scheduled to see a neurosurgeon at UCSF Dec 22.
I would highly suggest that you see a true chiari specialist. Chiari is progressive, symptoms can cone back, get worse, etc. Perhaps you didn't have as complete a decompression as you needed. Perhaps you're csf flow is compromised again, requiring further surgical intervention. Good luck to you. I hope you can find a dr who really knows how to treat chiari.
Mine was not symptomatic other than headaches, neck pain, and head pressure that I didn't realize wasn't normal, until I had a slip-and-fall accident about a year ago. Ever since, Ive progressively been getting worse.
I too blamed my neck pain on Ankylosing Spondylitis or psoriatic arthritis inflammation. My pcp even blamed my numbness in my hand and arm on facet arthropathy in my neck, compressing nerves, but when I saw a neurologist, he said I just had a" touch of arthritis" in my neck, as everyone gets with age. My rheumatologist said my neck was bad for someone twice my age(33). So I don't know who to believe about the hand and arm numbness. I personally think it's Chiari related though, since it came on the same time as my other neurological symptoms. AS certainly doesn't account for my foot and leg numbness and horrible muscle spasticity, the headaches, or the dizziness and vertigo.
We're stuck between a rock and a hard place, it seems. With the AS damage, who truly knows what's causing the symptoms? Having an autoimmune disease, doctors are quick to try to blame all symptoms on it too. My neurological symptoms were passed off as having to do with my autoimmune issues for far too long. At least you got in and had the decompression surgery done. I've been fighting to see a neurosurgeon for 4 months, since my Opthamologist found I have optic nerve swelling(papiledema) from intracranial pressure. I'm scheduled to see a neurosurgeon at UCSF Dec 22.
I would highly suggest that you see a true chiari specialist. Chiari is progressive, symptoms can cone back, get worse, etc. Perhaps you didn't have as complete a decompression as you needed. Perhaps you're csf flow is compromised again, requiring further surgical intervention. Good luck to you. I hope you can find a dr who really knows how to treat chiari.
As far as I have learned you can't "fix" chiari. There is no cure. Surgery is just a means to slow progression.
I'm sorry for all you are going through but glad you found this site!! I'm sure you will get great responces from these ladies!
I'm sorry for all you are going through but glad you found this site!! I'm sure you will get great responces from these ladies!
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