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Has anyones symptomes come back after surgery?
Hello
I had severe pressure headaches, balance problems an dizziness for as long as I can remember, always having the feeling that somthing was "wrong" with my head, I was diagnosed with anxiety, told I neded glasses, I was even told that I was a hypocondriac, I myself started to believe I was crazy! No one understood what I was going threw. I became pregnant at 16 (yes young I know!) the weight of carrying my son amplified my symptoms and my limbs would go numb, they finally began taking me serious when my arms would turn blue, and they sent me to a neurologist... I was told I had significant pressure on my brain and was sent for an MRI. I was then diagnosed with Chiari 1...After I had my son my symptoms continued to get worse, pressure in my head to even laugh or caugh. I had the chiari decompression surgery when I was 17 years old. After many complications (CSF & sever alergic reaction to the mesh they used to repair the leek) an 3 surgeries later, my symptoms seemed alot better. It has been 5 years now and everything seems to be coming back slowly. Has anyone experienced this before? I know I was told that the hernia can grow larger... But has anyones symptoms returned after surgery?
I had severe pressure headaches, balance problems an dizziness for as long as I can remember, always having the feeling that somthing was "wrong" with my head, I was diagnosed with anxiety, told I neded glasses, I was even told that I was a hypocondriac, I myself started to believe I was crazy! No one understood what I was going threw. I became pregnant at 16 (yes young I know!) the weight of carrying my son amplified my symptoms and my limbs would go numb, they finally began taking me serious when my arms would turn blue, and they sent me to a neurologist... I was told I had significant pressure on my brain and was sent for an MRI. I was then diagnosed with Chiari 1...After I had my son my symptoms continued to get worse, pressure in my head to even laugh or caugh. I had the chiari decompression surgery when I was 17 years old. After many complications (CSF & sever alergic reaction to the mesh they used to repair the leek) an 3 surgeries later, my symptoms seemed alot better. It has been 5 years now and everything seems to be coming back slowly. Has anyone experienced this before? I know I was told that the hernia can grow larger... But has anyones symptoms returned after surgery?
Hi Niki
I am only about 3 1/2 months post op so I can't really tell you but I am curious about this also as I have heard from different ppl that symptoms seem to come back around the 5 year mark. For me, many of them didn't even go away but the ones that did have stayed away for now.
I'm really sorry to hear that you feel they are coming back...after 3 surgeries you deserve a lifetime of relief!!
I wonder if it would be good idea to contact your NS and get it checked out? I have heard of cases of reblockage due to a variety of reasons. Do you still have follow ups with your NS? Sorry part of this is my own curiousity of what is down the road.
Take care
Carolyn
I am only about 3 1/2 months post op so I can't really tell you but I am curious about this also as I have heard from different ppl that symptoms seem to come back around the 5 year mark. For me, many of them didn't even go away but the ones that did have stayed away for now.
I'm really sorry to hear that you feel they are coming back...after 3 surgeries you deserve a lifetime of relief!!
I wonder if it would be good idea to contact your NS and get it checked out? I have heard of cases of reblockage due to a variety of reasons. Do you still have follow ups with your NS? Sorry part of this is my own curiousity of what is down the road.
Take care
Carolyn
Hello,
Imediately after my first surgery I felt some form of relief, but in time more syptoms started to subside... Only 5 years later are they coming back. From what I have herd the hernia can grow larger due to the space that was made in the decompression. However im not sure if this is a fact. I have made a follow up with my NS, I see him yearly. Unfortunately I put so much off, guilty of that, my son was just dx with it also so I have been so busy with his appointments. This is something I will definitely ask.
NIKI
Imediately after my first surgery I felt some form of relief, but in time more syptoms started to subside... Only 5 years later are they coming back. From what I have herd the hernia can grow larger due to the space that was made in the decompression. However im not sure if this is a fact. I have made a follow up with my NS, I see him yearly. Unfortunately I put so much off, guilty of that, my son was just dx with it also so I have been so busy with his appointments. This is something I will definitely ask.
NIKI
COMMUNITY LEADER
HI and welcome to the chiari forum.
It is possible to get symptoms as the surgery is not a cure, but a means to slow the progression. If u just had ur surgery, I would say it was possible that it was part of the healing process....or that u had a chiari related condition like tethered cord...but since it is 5 yrs...I would venture to say it could be scar tissue or a syrinx....when was ur last MRI? Do u know if the tonsils retracted after surgery?
So glad to have u join our little family here, so sorry the reasons u had to seek us out.
"selma"
"selma"
It is possible to get symptoms as the surgery is not a cure, but a means to slow the progression. If u just had ur surgery, I would say it was possible that it was part of the healing process....or that u had a chiari related condition like tethered cord...but since it is 5 yrs...I would venture to say it could be scar tissue or a syrinx....when was ur last MRI? Do u know if the tonsils retracted after surgery?
So glad to have u join our little family here, so sorry the reasons u had to seek us out.
"selma"
"selma"
Hi,
Just found this site. I had decompression surgery in June 09. Unfortunately I was infected with a very serious type of bacterial meningitis during the op. Scary times, but I recovered. Nearly all of my Chiari symptoms disappeared immediately after surgery (I never had the headaches, but nearly all the other symptoms). I was feeling really good until a couple of months ago when I started getting tingling down the backs of my legs. Now in less than 2 months almost all my old symptoms have returned. I have an appt with my neurologist in 2 weeks but now think I'll call my neurosurgeon too and push for an MRI. I've read that you can develop SM post surgery, even if you never had one to begin with.
Really sorry you're going through all this. Even though I think many of us feel isolated with this condition, it's good to be reminded through groups like this that there really are people like us, and who believe us.
Just found this site. I had decompression surgery in June 09. Unfortunately I was infected with a very serious type of bacterial meningitis during the op. Scary times, but I recovered. Nearly all of my Chiari symptoms disappeared immediately after surgery (I never had the headaches, but nearly all the other symptoms). I was feeling really good until a couple of months ago when I started getting tingling down the backs of my legs. Now in less than 2 months almost all my old symptoms have returned. I have an appt with my neurologist in 2 weeks but now think I'll call my neurosurgeon too and push for an MRI. I've read that you can develop SM post surgery, even if you never had one to begin with.
Really sorry you're going through all this. Even though I think many of us feel isolated with this condition, it's good to be reminded through groups like this that there really are people like us, and who believe us.
COMMUNITY LEADER
Hi and welcome to the chiari forum.
May I ask, could u have been doing an activity that may have triggered this... have u been in touch with ur NS?
U r so right...this condition is not an easy one to navigate and to have drs not believe our symptoms r related to the only condition we r dx with is so frustrating...and then once u have surgery too many feel ur were cured.....but we have this group to get the info and support we need.
I am happy to have u as part of our little chiari family here, so sorry the reason u had to seek us out.
"selma"
May I ask, could u have been doing an activity that may have triggered this... have u been in touch with ur NS?
U r so right...this condition is not an easy one to navigate and to have drs not believe our symptoms r related to the only condition we r dx with is so frustrating...and then once u have surgery too many feel ur were cured.....but we have this group to get the info and support we need.
I am happy to have u as part of our little chiari family here, so sorry the reason u had to seek us out.
"selma"
Hi Niki,
My situation is similar to yours. I had my surgery10 years ago and for the past year some symptoms have come back and I am in chronic pain every day. My head, neck, and back hurt as well as stiffness in my neck. I have a syrinx in my spinal cord, but everything else is normal on the mri. The dr said there is nothing they can do so i guess you just have to deal with this disease. Surgery is not a cure.
My situation is similar to yours. I had my surgery10 years ago and for the past year some symptoms have come back and I am in chronic pain every day. My head, neck, and back hurt as well as stiffness in my neck. I have a syrinx in my spinal cord, but everything else is normal on the mri. The dr said there is nothing they can do so i guess you just have to deal with this disease. Surgery is not a cure.
After my surgery I devolped a chemical meningitis! Sounds very similar to yours, but a CSF leak was the cause. 3 surgeries later! Things were fine for a while, I havn't done any strenuous or recent activity that would trigger anything. These symptoms just seemed to be coming back slowly, im starting to thing maybe its just something I will have to adjust to. I know the surgery was not for a cure, just help with symptoms, just lowsey to see they are all coming back.
Sorry you are having all this pain, sometimes I feel like all this is such a burden. But then I take a few breaths an just go on. Sometimes the headaches and pressure can be unbareable, unfortunatey there is no cure, only small signs of relief with the surgery, I just wish the relief had lasted a little longer!
Thanks for all your comments. Niki, I haven't heard of chemical meningitis. I think I was suffering from the meningitis straight after surgery and the dr.s didn't pick up on it. They kept telling me it was a migraine or that the morphine wasn't working on me. I was in the hospital 7 days instead of the expected 3. Only home for 24 hours before I started feeling even worse. Hours later I was back in the ER, and spent the next 8 hours there waiting for some relief or a diagnosis. Had lower abdominal pain like I was giving birth, plus the worst head pain of my life. Finally they did a LP and apparently the fluid was the color of skim milk instead of clear. General panic as they isolated me in case I was contagious. My husband was panicked because he hadn't sterilized the home thermometer between using it on me and testing the readings on our two kids. Dr told him if the meningitis was contagious it would already be "too late" for our kids! Thank god it was bacterial and not contagious and only I was sick. Another week in hospital and then i was sent home with a "pic line" for 3 weeks. After a week I broke out in hives from the meds, then the next med made me nauseous and vomit constantly. Not a fun activity with an 8" incision in your head, as i'm sure you all know!
Once I recovered from all this I really felt good - basically no chiari symptoms. (til a couple of months ago)
Selma: you're question about activities got me thinking. I was playing in the surf at a beach early February with my kids. I tried using their boogey board and a freak wave smashed into the back of my neck and send me crashing through the water, head over heals in a full forward roll. I remember standing up again, coughing and thinking "wow, I'm glad didn't do any damage to my head" but now I'm wondering . . . I don't have a date for when the symptoms started coming back but it was around that time of year.
Having to deal with Chiari again is causing me major stress, but to think that I may have caused this and that there's now no cure is breaking my heart.
Niki: I'm so sorry about your son. How old is he? What are his symptoms? I'm worried that I've passed this on to my kids too (Ian 13, Lauren 11). They are scared too, as they are old enough to comprehend all that I've been through and how close I was to dying with the meningitis. So far, no symptoms for them. But I was 44 before I got any too.
Tina
Once I recovered from all this I really felt good - basically no chiari symptoms. (til a couple of months ago)
Selma: you're question about activities got me thinking. I was playing in the surf at a beach early February with my kids. I tried using their boogey board and a freak wave smashed into the back of my neck and send me crashing through the water, head over heals in a full forward roll. I remember standing up again, coughing and thinking "wow, I'm glad didn't do any damage to my head" but now I'm wondering . . . I don't have a date for when the symptoms started coming back but it was around that time of year.
Having to deal with Chiari again is causing me major stress, but to think that I may have caused this and that there's now no cure is breaking my heart.
Niki: I'm so sorry about your son. How old is he? What are his symptoms? I'm worried that I've passed this on to my kids too (Ian 13, Lauren 11). They are scared too, as they are old enough to comprehend all that I've been through and how close I was to dying with the meningitis. So far, no symptoms for them. But I was 44 before I got any too.
Tina
COMMUNITY LEADER
HI Tina...we all need to be careful with our activities....and it is possible for the tonsils to re herniate....or for us to develop scar tissue which can also cause similar symptoms...so a MRI for a check p and let the drs know about the boogey board incident as it may have just triggered some symptoms....
Please keep us posted : )
"selma"
Please keep us posted : )
"selma"
Hey guys, I am in a similar situation. I had the surgery back in Jan. of 09 and for around a year and a half I was perfectly fine. No problems. Suddenly around Easter of this year I started getting the headaches again and things progressed. Long story short, I am now wheelchair bound due to extreme weakness in my legs. I have coordination issues off and on and have lost the ability to speak. All things are Chiari Type I symptoms. I have had a new MRI and a new Cat Scan and had my Neurosurgeon look at all of it and he says the Chiari looks fine. I am confused of how the symptoms can return if everything looks physically ok. Does this happen though? If So how often? Please give me advice and if there is evidence of the symptoms returning without anything physically looking wrong I would love to have a cited source to show my doctor and family. My family is almost acting like I am crazy
Dustin
Dustin
COMMUNITY LEADER
Hi and welcome Dustin to the Chiari forum.
I am so sorry u r having these issues...may I ask, did they check u for chiari related issues, like tethered cord, Ehlers-Danlos, DDD, stinosis....Pusedo tumor cerebri.
Was this the same dr that did ur surgery?...if so, get a second opinion.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460
The above link is to our list of drs, BUT please research ne dr u consider seeing...this is just to serve as a starting point,the list was compiled by our members of drs they have been to and liked. I hope u r able to locate a dr u r comfortable with to get a second opinion.
It is possible to develop scar tissue that can block CSF...but it doesn't always show on a MRI...did they do a CINE MRI??
"selma"
I am so sorry u r having these issues...may I ask, did they check u for chiari related issues, like tethered cord, Ehlers-Danlos, DDD, stinosis....Pusedo tumor cerebri.
Was this the same dr that did ur surgery?...if so, get a second opinion.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460
The above link is to our list of drs, BUT please research ne dr u consider seeing...this is just to serve as a starting point,the list was compiled by our members of drs they have been to and liked. I hope u r able to locate a dr u r comfortable with to get a second opinion.
It is possible to develop scar tissue that can block CSF...but it doesn't always show on a MRI...did they do a CINE MRI??
"selma"
This is the same doctor that did my surgery, there was no sign of scar tissue or anything. A person on the chiari yahoo group said that sometimes symptoms just return with no apparent visual reason but the person who told me this didn't cite a source so when I tell my family they act like I am crazy. According to a doctor I saw two years ago for my scoliosis the neurosurgeon I saw is the best in my area. I will be seeing a neurologist soon though that is new to the area.
God Bless,
Dustin
God Bless,
Dustin
COMMUNITY LEADER
Hi Dustin...do u know if the NS is a true chiari specialist? I have no doubts that ur NS is tops in his field, but u may want a opinion from someone that does nothing but treat chiari...gives them a bit of an edge.
Worth checking into.
Biggest issue many families of Chiarians deal with is they feel since we had surgery we r fixed....however there is no fix, just treatment to slow progression.
I pray u r able to enlighten ur family so u have their support, and I pray u get answers as to what has changed ur condition.
Please keep us posted
"selma"
Worth checking into.
Biggest issue many families of Chiarians deal with is they feel since we had surgery we r fixed....however there is no fix, just treatment to slow progression.
I pray u r able to enlighten ur family so u have their support, and I pray u get answers as to what has changed ur condition.
Please keep us posted
"selma"
I had sugery for chiari 1- 5 years ago and felt great until a few months ago. I was told that once the surgery was complete that I would not have anymore problems. Now I have headaches, eye pressure and neck pain all over again. Even worse, I do not have Insurance anymore, what should I do.
Amanda
Amanda
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I am so sorry u r dealing with all this again, but 5 yrs symptom free is pretty good.
But surgery is a means to slow progression, it is not a cure...once u have chiari u will always have chiari.
Now u may have scar tissue that has built up to cause a CSF blockage...or a syrinx has developed.....
Was ur NS a chiari specialist?
"selma"
I am so sorry u r dealing with all this again, but 5 yrs symptom free is pretty good.
But surgery is a means to slow progression, it is not a cure...once u have chiari u will always have chiari.
Now u may have scar tissue that has built up to cause a CSF blockage...or a syrinx has developed.....
Was ur NS a chiari specialist?
"selma"
Hi, I just found this website and think you maybe able to help me. My three year old had surgery for chiari malformation 1 yr ago. We thought as the scans were improving gradually this would be the end of the symptoms. It is very hard to determine at three how he feels and what is a problem. He has reciently started to vomit more frequently mostly at night time. Sometimes appearing to have a head ache with it and sometimes with crying or laughing. He also says he feels wobbly sometimes and has to lie down if he laughs to much or does anything strenous. We find it hard to judge as we dont know what he is going through and he is so young. Also a year on he still requires thick and easy to drinks to stop him aspirating. Does anyone have this problem and does it get better.
Thanks
Thanks
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Many chiarians do have issues post op...it may be a related condition, or scar tissue built up....
We also have GERD and reflux issues...has he had this checked?
And we also deal with vertigo which can cause the issues with the vomiting.....I also have an issue if I laugh too much I tend to gag and at times can vomit...even after surgery....no 2 of us r alike...or react the same to surgery.
May I ask when his last MRI was?Did he have a yr post op dr visit?
Be sure to mention the aspirating issue to his dr....as that is not normal from what I am aware of....
We r always happy to have new people join us, but never happy for the reasons that bring them, especially when a child is involved.
"selma"
Many chiarians do have issues post op...it may be a related condition, or scar tissue built up....
We also have GERD and reflux issues...has he had this checked?
And we also deal with vertigo which can cause the issues with the vomiting.....I also have an issue if I laugh too much I tend to gag and at times can vomit...even after surgery....no 2 of us r alike...or react the same to surgery.
May I ask when his last MRI was?Did he have a yr post op dr visit?
Be sure to mention the aspirating issue to his dr....as that is not normal from what I am aware of....
We r always happy to have new people join us, but never happy for the reasons that bring them, especially when a child is involved.
"selma"
Hi thanks for the reply. Max last had a mri in september and his scan was good compared to previous. The aspiration problems were his main symptom and he had a peg fitted as it was so sevre so we are lucky to be just on thick and easy now. I am a bit worried about the vomiting though as he has vomited 11 times this month. Mostly in the evening and often with crying but this has never happened before then. May give his surgeon a ring dont want to pester them though. thanks again ruth .
COMMUNITY LEADER
I would not consider calling about 11 times in one month pestering.....u need some insight and ur surgeon should be able to guide u.....
Do u also have a good NL?...they do the dxing...so u may want to call them as well.
"selma"
Do u also have a good NL?...they do the dxing...so u may want to call them as well.
"selma"
Could you tell me what a NL is please? Think you are right will ring Maxs surgeon.
Thanks Ruth
Thanks Ruth
COMMUNITY LEADER
...sorry NL= Neurologist....NS = Neurosurgeon.....we do have a list of abbreviations that we use.....http://www.medhelp.org/health_pages/Neurological-Disorders/Acronyms-and-computer-short-hand/show/509?cid=186
I thought I was going crazy! I'm glad to see that I am not. I had the surgery 3 months ago and for about 2 weeks now the pains and symptoms are back and 10 times worse. I have called my doctor and have not received any calls back yet. I don't know how much more pain I can take without going straight to the ER.
I want to wish you well. I am only a month post op and seems like nothing has changed for me at all except for the worse. but i have always been told by dr's that i am a special case that nothing they seem to do ever works for me. so i wish you well and hope that you begin to feel better and find the answers you are looking for
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