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Can surgery really make things better?
Hello, I am a 34 year old man and I am in bad shape, and I mean bad. Iv been diagnosed with Chiari Malformation 5-7mm. Symptoms include vertigo, tinnitus, off balance, weird vision problems including a sensation my eyes are not working in coordination( I sometimes close one eye when in a very active situation such as traffic), severe neck and head pressure and pain; exercise intolerance (running will cause extreme vertigo and other symptoms that last for about an hour), sensitivity to light/sound, severe cognitive and memory problems (even though I scored above average on some neuropsych memory tests, severe depression/anxiety and many other symptoms. Right now I am completely disabled, Iv not been able to work in over a year, I cannot drive more than 10 miles at a time without getting very dizzy/mentally tired--almost drunk feeling. Symptoms and almost always worse upon waking up. I have scoliosis, my joints pop and crack all the time and a massage therapist said I have an very unusual muscle tone.
One neurologist told me that my tiny herniation could not be causing any symptoms and sent to me a psychiatrists. The Psychiatrist, and one therapist, said I do not meet typical presentation of depression because I want to do things, but cant. They feel something physical is the problem. Iv tried several psych meds and I am too sensitive, I have horrible, almost violent adverse reactions to them, even at extremely low doses.
I even spent a week inpatient in the Neurology ward at a Chinese hospital (Im American but live in China) and the diagnosis was Chiari. So far no treatment has helped. Iv went from a very active and happy guy to a disabled miserable shell of my former self and four months ago I decided I cannot keep on like this, so I bought a bed sheet, tied it in a noose and wrote a suicide note. My full intention was to go to one mountain nearby and hang myself; I hid the noose in the trunk of my car behind several other things in a bag. By some fluke my wife decided to clean out the trunk a couple days later and found it, she knew exactly what it was and, as you can imagine, went ballistic. Seeing her reaction really made me see the pain that my death would cause, before for some reason I was not able to really imagine it.
I decided for her sake I really needed to try my best to get better so I sent my MRI to a well known Chari specialist and returned to the USA. He reviewed them and sent me a report back. I am scheduled to see him in January and I am almost certain he will want to operate. However, can surgery really make a difference? So far I can only find horror stories on the internet; and people complaining surgery didn't help and even made things worse (however, the NS I will see has stellar reviews).
My main question: Is there really any hope?
I will include the MRI report below:
MRI Scans dated 9/17/15 shows a 5-7mm cerebellar tonsillar ectopia. The tonsils wrap around the brain stem. The brainstem is torqued and somewhat distorted. There is no hydrocephalus. There does not appear to be an empty sella. Cerebellar folia are compressed inferiorly. There is no CSF flow study. Coronal views show cerebellar estopia as well.
There is degenerative joint disease present at c5-6 and c6-7 with the canal narrowing to about 9-10mm in AP diameter. Overall cervical posture is kyphotic.
These images are compatible with significant symptoms such as headache, diffuse pain, sensory disturbances, weakness, difficulty with balance and gait as well as autonomic system abnormalities. The latter might include palpitations, cold hands and feet, fainting or near fainting, gastrointestinal and bladder difficulties.
One neurologist told me that my tiny herniation could not be causing any symptoms and sent to me a psychiatrists. The Psychiatrist, and one therapist, said I do not meet typical presentation of depression because I want to do things, but cant. They feel something physical is the problem. Iv tried several psych meds and I am too sensitive, I have horrible, almost violent adverse reactions to them, even at extremely low doses.
I even spent a week inpatient in the Neurology ward at a Chinese hospital (Im American but live in China) and the diagnosis was Chiari. So far no treatment has helped. Iv went from a very active and happy guy to a disabled miserable shell of my former self and four months ago I decided I cannot keep on like this, so I bought a bed sheet, tied it in a noose and wrote a suicide note. My full intention was to go to one mountain nearby and hang myself; I hid the noose in the trunk of my car behind several other things in a bag. By some fluke my wife decided to clean out the trunk a couple days later and found it, she knew exactly what it was and, as you can imagine, went ballistic. Seeing her reaction really made me see the pain that my death would cause, before for some reason I was not able to really imagine it.
I decided for her sake I really needed to try my best to get better so I sent my MRI to a well known Chari specialist and returned to the USA. He reviewed them and sent me a report back. I am scheduled to see him in January and I am almost certain he will want to operate. However, can surgery really make a difference? So far I can only find horror stories on the internet; and people complaining surgery didn't help and even made things worse (however, the NS I will see has stellar reviews).
My main question: Is there really any hope?
I will include the MRI report below:
MRI Scans dated 9/17/15 shows a 5-7mm cerebellar tonsillar ectopia. The tonsils wrap around the brain stem. The brainstem is torqued and somewhat distorted. There is no hydrocephalus. There does not appear to be an empty sella. Cerebellar folia are compressed inferiorly. There is no CSF flow study. Coronal views show cerebellar estopia as well.
There is degenerative joint disease present at c5-6 and c6-7 with the canal narrowing to about 9-10mm in AP diameter. Overall cervical posture is kyphotic.
These images are compatible with significant symptoms such as headache, diffuse pain, sensory disturbances, weakness, difficulty with balance and gait as well as autonomic system abnormalities. The latter might include palpitations, cold hands and feet, fainting or near fainting, gastrointestinal and bladder difficulties.
Thanks to everyone who has had decompression and is kind enough to share their experiences.
This is a blessing to so many including myself.
This is a blessing to so many including myself.
The shakiness of my vision did improve but neurologically I had no abnormalities with my vision. I also visited a neuro-ophthalmologist and he found nothing wrong either. I think the twitch in my face and eyelid was distorting my vision. Also, I think my vertigo was affecting my vision. Patterns and tiles on the floor really bothered me. That has improved. I remember thinking every time I went to see a doctor why everything in the offices were decorated with patterned carpet and wallpaper and patterned fabric on the seats. It drove me crazy! I didn't even realize there were black tiles among the white ones in my supermarket floor until my symptoms hit and they were jumping out at me! I couldn't watch traffic either, it made me feel sick. That has gotten better. Depth perception was an issue for me too. Sometimes I felt short, like the ground was jumping up at me. As a child I would have moments where everything looked far away, like looking through binoculars backwards, but I never went to a doctor and eventually it stopped.
Glad to hear you are seeing a specialist, I think it is so important.
Glad to hear you are seeing a specialist, I think it is so important.
2 Comments
Lasel, I could have written everything you mentioned about vision. My visual symptoms are almost a mirror to yours.
Well, the good news is that is one of the symptoms that improved quickly for me. I also saw what i would explain as green static at night, especially after turning out a bright light and going to darkness. Things would look like green static or it was like i was seeing the northern lights. This does not happen anymore. I don't have light sensitivity anymore either and don't see glittering in the daylight anymore.
COMMUNITY LEADER
Just wanted to mention something in regards to the tile or multicolor floor....
I was told to avoid checkerboard floors as well as dimly lit rooms bcuz our depth perception is off with Chiari
And I did find that to be true walking into one grocery store with just such a floor....I felt like I was falling thru it....very strange sensation...plus florescent lights get to me....so the 2 together was awful.
Another such encounter was the High Line in NYC....there is one area where there is a grate like bridge....and you can see thru it....well it was dusk and I was not aware I was about to step onto this....and when I did I had to grab hold of my daughter...again I felt as if I was falling....
My depth perception issues continue for me...and I no longer drive....I can not tell how far I am from other moving vehicles which is not good for driving....I feel since I had an issue so long b4 my DX that it may just take longer to go away or may always be an issue for me.
Thanks everything. Your posts made me feel a whole lot better. It seems there is hope. I do not have to be 100% again, I just have to be able to be functional again. Now now I am 100% disabled, I am more disabled than most 90 year olds. This cannot go on like this. Thank you so much Lasel, Selma and Lottida for your detailed posts. Lasel your symptoms sound an awful lot like mine and I am very pleased to hear that your vision problems improved. Vision problems are some of my worst symptoms. Did you ever have trouble with tile/multicolor floors? A neurologist said my eyes were slow to respond to light as well. I am traveling out of state to see a well known Chiari Specialist, Dr Micheal Rosner. He seems to have excellent reviews and a real desire to help people.
Hang in there!!! It think the surgical outcome relies alot on if a person is optimistic vs pessimistic. As everyone states on this site, surgery can help with many symptoms but we will have to deal with Chiari symptoms for the rest of our lives. I am 41 & I have been back to work as a registered nurse for 3 months now (nursing is not an easy job). My life came to a sudden halt in February of this year when I woke up with hearing loss, vision problems, dizziness & gait problems. I had pressure in the back of my head for years but thought it was normal. I had an 8mm Chiari I Malformation with a CSF blockage. I had decompression surgery in April of this year then required a 2nd brain surgery in June of this year due to a CSF leak. I was out of work for 6 months. Oh & I have a small tumor that may require an additional brain surgery in the future. I have had some tough times, but am very blessed to be able to function more like my old self now (vision & hearing are normal now). Don't get me wrong, I still have some issues (mostly joint pain) but I decided I would not let Chiari win!!!!! I learned to figure out what triggers my Chiari symptoms & I try to avoid them at all costs.
So in summary, yes I still have mild symptoms after my surgeries but I would due both brain surgeries again not to feel the way that I did before my surgeries. I couldn't drive for 7 weeks before my 1st surgery.....hell I could barely walk at times. Educate yourself as much as possible about Chiari because it helps you to understand what you are up against. Knowledge is power & it allows you to have a better mindset about your condition. Also stay away from the negativity if possible as I have found lots of people have glasses that are always half empty instead of half full. You can always find some good in any situation if you try hard enough. You will need to dig deep into your inner self to find the strength to push forward but just know you have lots of support on this forum!! DO NOT GIVE UP!!! There is life with Chiari!!! Sending lots of prayers your way that you will be showered with strength to overcome this!!!!! :)
So in summary, yes I still have mild symptoms after my surgeries but I would due both brain surgeries again not to feel the way that I did before my surgeries. I couldn't drive for 7 weeks before my 1st surgery.....hell I could barely walk at times. Educate yourself as much as possible about Chiari because it helps you to understand what you are up against. Knowledge is power & it allows you to have a better mindset about your condition. Also stay away from the negativity if possible as I have found lots of people have glasses that are always half empty instead of half full. You can always find some good in any situation if you try hard enough. You will need to dig deep into your inner self to find the strength to push forward but just know you have lots of support on this forum!! DO NOT GIVE UP!!! There is life with Chiari!!! Sending lots of prayers your way that you will be showered with strength to overcome this!!!!! :)
I had very similar symptoms to you especially when my symptoms were at my worst. My tonsils were also wrapped around my brainstem. I found myself bedridden for weeks at a time and was extremely depressed and understand your thought of ending it. I'm glad that didn't happen because there is hope. For over a year I was told it was all in my head by multiple neurologists, neurosurgeons, and my primary doctor. I refused to take medications for anxiety and depression (even though I knew I was experiencing that as well) because I knew it couldn't be the main reason for my symptoms and was afraid of dealing with the side effects in addition to the symptoms I was having. I eventually found a specialist and had surgery just over 3 weeks ago, and it was the right decision.
Immediately after surgery, the first thing my husband and father said to me was I looked so much better after surgery than before, that I had color in my face again. The floor has not moved under my feet since surgery and I don't feel a strange rocking sensation when I sit in certain positions. My vision doesn't jump on me. I think that was caused by a twitch under my eyelid. It was so bad at times that things would move slightly, then I would hold my eyelid down and my vision stopped jumping. I have not had any twitching since surgery, and I had that symptom on and off for years. I had tinnitus in my right ear for ten years then when symptoms got bad I had it in my left ear. It's gone in my left ear, but still present in right and fluctuates. I still get dizzy, but haven't had vertigo since surgery, although I haven't been too active to cause the vertigo. I too experienced severe vertigo after running. I am not as sensitive to sound anymore, I am much happier and enjoy spending time with my family rather than removing myself from company due to overstimulation. I had visual symptoms that have already improved greatly. Many other symptoms have already improved but are not gone entirely. I do fear some symptoms I have now may be stress related as I was extremely stressed for over a year with these symptoms. I'm hoping this will resolve in time as I continue to feel better. I also had increased muscle tone that physical therapist would always comment on and wonder why my muscle pain would not resolve. My legs were shaky too upon movement. I have already felt improvement in the tightness of my legs, I also haven't felt tingling in my legs since surgery.
I'm only 3 1/2 weeks post op and I already feel improvement and my surgeon told me it takes 6 months to feel 90% of results from surgery and a year to feel the remaining 10% improvement. He did say some symptoms may not respond to surgery, dizziness being a difficult one. But the dizziness is much easier to handle without all the other symptoms.
Surgery was also much easier than I thought it would be. I credit that to the doctor and hospital I was treated in, it is very well known for chiari. My pain was very minimal compared to what I thought it would be and my fear pre surgery was not warranted.
I'm glad you are seeing a well know specialist because I think that is critical to your outcome. Surgery can help, and after reading your entry I think you are at a point that trying surgery is better than not trying it.
I think we hear so many horror stories because they are the ones that still need support. The people that get better just stop posting because they are getting on with their life.
Two weeks after surgery I went trick or treating with my kids and I remember the year before I was so miserable, I felt nauseous, the ground was moving, I couldn't move my head too much or I would feel vertigo and this year I was enjoying myself just 2 1/2 weeks after surgery! My friends also noticed I wasn't pale and sickly looking anymore.
I know I am writing a lot. I just feel for you, I was in a very similar position. Surgery can help. It may not help every symptom but it should help some. I also notice if I overdue it, I feel worse for a few days then start to feel better again so I have to remember that I need to heal for some time yet.
Good luck, I hope things improve for you.
Immediately after surgery, the first thing my husband and father said to me was I looked so much better after surgery than before, that I had color in my face again. The floor has not moved under my feet since surgery and I don't feel a strange rocking sensation when I sit in certain positions. My vision doesn't jump on me. I think that was caused by a twitch under my eyelid. It was so bad at times that things would move slightly, then I would hold my eyelid down and my vision stopped jumping. I have not had any twitching since surgery, and I had that symptom on and off for years. I had tinnitus in my right ear for ten years then when symptoms got bad I had it in my left ear. It's gone in my left ear, but still present in right and fluctuates. I still get dizzy, but haven't had vertigo since surgery, although I haven't been too active to cause the vertigo. I too experienced severe vertigo after running. I am not as sensitive to sound anymore, I am much happier and enjoy spending time with my family rather than removing myself from company due to overstimulation. I had visual symptoms that have already improved greatly. Many other symptoms have already improved but are not gone entirely. I do fear some symptoms I have now may be stress related as I was extremely stressed for over a year with these symptoms. I'm hoping this will resolve in time as I continue to feel better. I also had increased muscle tone that physical therapist would always comment on and wonder why my muscle pain would not resolve. My legs were shaky too upon movement. I have already felt improvement in the tightness of my legs, I also haven't felt tingling in my legs since surgery.
I'm only 3 1/2 weeks post op and I already feel improvement and my surgeon told me it takes 6 months to feel 90% of results from surgery and a year to feel the remaining 10% improvement. He did say some symptoms may not respond to surgery, dizziness being a difficult one. But the dizziness is much easier to handle without all the other symptoms.
Surgery was also much easier than I thought it would be. I credit that to the doctor and hospital I was treated in, it is very well known for chiari. My pain was very minimal compared to what I thought it would be and my fear pre surgery was not warranted.
I'm glad you are seeing a well know specialist because I think that is critical to your outcome. Surgery can help, and after reading your entry I think you are at a point that trying surgery is better than not trying it.
I think we hear so many horror stories because they are the ones that still need support. The people that get better just stop posting because they are getting on with their life.
Two weeks after surgery I went trick or treating with my kids and I remember the year before I was so miserable, I felt nauseous, the ground was moving, I couldn't move my head too much or I would feel vertigo and this year I was enjoying myself just 2 1/2 weeks after surgery! My friends also noticed I wasn't pale and sickly looking anymore.
I know I am writing a lot. I just feel for you, I was in a very similar position. Surgery can help. It may not help every symptom but it should help some. I also notice if I overdue it, I feel worse for a few days then start to feel better again so I have to remember that I need to heal for some time yet.
Good luck, I hope things improve for you.
COMMUNITY LEADER
@ Bueghosy- Hi and welcome back....it's been a while since you posted here......Yes surgery can be helpful...BUT I really feel you need to have the right Dr and make sure ALL related conditions are ruled out b4 surgery is considered....and with that said you may not experience a reprieve immediately after surgery it may take time...as it took time to get as bad as it is....
With the brain stem being involved as it is , surgery should be a benefit to you.....keeping in mind the longer we have compression of nerves it is possible to have perm nerve damage so some remaining symptoms post op.
I can tell you for me surgery was the best thing I could have done....I had drop attacks and was miserable....it is now 6.5 yrs later and I am so happy...I still have some remaining symptoms but I am sooooooooo much better then I was....and some of my symptoms are from related conditions not just Chiari.....
Find a true Chiari specialist...and rule out ALL related conditions....there is help and hope out there.
With the brain stem being involved as it is , surgery should be a benefit to you.....keeping in mind the longer we have compression of nerves it is possible to have perm nerve damage so some remaining symptoms post op.
I can tell you for me surgery was the best thing I could have done....I had drop attacks and was miserable....it is now 6.5 yrs later and I am so happy...I still have some remaining symptoms but I am sooooooooo much better then I was....and some of my symptoms are from related conditions not just Chiari.....
Find a true Chiari specialist...and rule out ALL related conditions....there is help and hope out there.
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