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 (allergic) 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 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.
Imediately after my first surgery I felt some form of relief, but in time more syptoms (symptoms) 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.
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.
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.
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.
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.
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....
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
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.
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.
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.
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.
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.
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 .
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
hi sorry to hear abut ur syndrome...im in same situation ive had 2 surgurys last time had was 10 years ago and my situation is all back..well its worse..my ds is very helpful..but there is nothing to stop it...im only on pain killer tablets....i guess got to live with it...my illness is 10 steps ahead of me...so its always something different to for my ds to learn from me..black eyes dizzy spells very headaches...so u end up shaking....pain in back neck...very restless nights and days....the way i see it live to macks while ur alive...neva now whats waiting next day..wont be long b4 every system off my body will clapps.
I had the decompression surgery in July of 2010. I found that after the surgery i felt great. about 4 month ago i started to get the pressure and headachs back. I thought this was strange untill i realized that on the days i got the pressure it went from calm the day befor to windy that day. I found that my chiari symptoms had become barometric pressure sensitive. If you live in an area that tends to have large ups and downs in pressure change this may be the same for you. I moved 10 hrs north 2 weeks ago where it is not windy and havnt had any pressure or headachs since.
hope all gets better for everyone, chiari is hard to live with. I almost lost my family befor i was diagnosed, it made mine and my familys life hell.
Yes, many of us do feel like walking barometers.......and many of us had this issue b4 surgery, I had co -workers asking me what the weather was going to do, or tell me by what they observed after working with me a few yrs...lol...
And yes, it is not easy for our friends and family either...this is a tough experience.....
It is also possible to get some symptoms back as a result of scar tissue that builds up or other related conditions.....so do get checked if and when u have new or revisited symptoms.
Thanks for sharing some of ur chiari experience with us : )
My daughter (11 years old) was diagnosed with Arnold Chiari Type I last summer. Almost a year ago. She was operated in august 2011. At first she seemed fine on a regular basis. Some days more tired than others, some head aches here and there. Since the operation she cannot stand really loud noises. She can no longer go watch hockey games, concerts. Her right foot has started dragging again and her left arm is still weak. Over all I was still happy with the outcome if I compare to what was happening before the surgery. Its been a fiew weeks now that mostly in the evening around bed time, she starts coughing. She usually gets head aches from coughing so much. The other night she was coughing so much that she ended up vomiting. At the time I wasn't sure if it was because she ate to much at dinner time and didn't have time to digest. From the comments that I'm reading maybe I should be concern. I tend to freak out more than I have to... I'm also not sure I get what my daughter has and the severety of it. Maybe I'm in denyl.
First, not all chiari surgeries r done the same, some r done to be minimal...so, do u know what all was done?...did she have a laminectomey(shaving some bone off the C1 and C2 vert) and did she have a duraplasty (opening the dura and replacing with a patch)...if she did what type of patch was used?
And was she checked for related conditions?...like PTC, Disk issues, sleep apnea, tethered cord, ehlers-danlos, and a syrinx?
I know this is a lot...but this is what u really need to look at...plus when was she to see her NS last?
SOme things can develop post op like scar tissue...so follow ups and a post op MRI should be done around 6 months to a yr post op.
Hello my name is Missy. I had surgery in February 2010. I had 2 wonderful months symptom free but then started having headaches and numbness on my left side. My NS told me there was nothing more he could do for me. He couldn't do any more surgeries because my bones were too soft. He then told me to find a NL. He referred me but I had to find my own. I am disabled so I have medicaid. It's not easy finding a specialist in IL who takes Medicaid for an adult. My NL has been trying different meds to help with my headsches and neck. Then I started having all over body numbness, my vertigo came back, extreme pain in my back down my spine. My NL wanted to send me back to my NS but he refused to see. He finally agreed to see me in June if after looking at my xrays and MRI he thinks he can help me.i am so frustrated. I have tried so many different meds to no avail. They work for awhile then quit working or I have a reaction to them. the NL just now on April 30th ordered an MRI. I have not had one done since 2009 when they found my Chiari.
It is possible to have a failed surgery, it is also possible to develop other issues post op, and it is also possible to have other issues in addition to chiari that can flare up post op...and it can depend on what u do daily that can affect how u feel depending on what all is going on.
I am confused, ur bones r soft?....or r ur joints hyper flexible? Do u know if u were checked?
I know this is going to be lengthy but this is my first time commenting since the beginning of my ordeal in 2010 and I have come to the realization that the only ones who will understand what I'm going through are my fellow chiarians who have had the same experience. At least I won't feel so crazy!
I have been reading the forum and researching all the information I could about Chiari malformation but only since my surgery was complete. I was told not to go online before surgery because I may chicken out and I had no choice but to have the surgery if I didn't want to have permanant nerve damage or lose function in my extremeties. I have never shared my story because this was all new to me. It came about so fast and caught me by total surprise.
I was rear ended in a car accident in April 2010. I had initial soreness in my back and neck which was to be expected but I didn't receive medical attention at the time because I didn't think it was warranted. Six months later, I was feeling a sticking pain in in one specific area of my neck. It was intermittent and I didn't think anything of it until I starting having some tingling in the tips of the fingers of my right hand.
I used to work at a physical therapy clinic and had ask a PT friend of mine to take a look at me to see if she thought I should check into it. I thought I may have had a disc issue from the wreck. I had been told by the persons insurance company that I had a year from the date of the accident to seek any medical attention or they would not pay the bills. Since time was running out, I decided to check into it. Before I could get to the PT clinic, I developed a pretty bad case of bronchitis after working in my yard and told my friend I would have to hold off until the coughing subsided.
I had been working at my new job at a daycare center for only 3 months. It was now the first week of October. We were walking inside with the kids after their outside time, and I was having a major coughing spell. After a few big coughs, I felt a sharp, shooting pain and tingling go up the back of my head and down my arm into my hand, but only into my thumb and first finger. This only occurred on the right side. It continued to do this throughout the day causing more pain, even into my right ear.
I woke up the next morning and I was completely numb in those areas including my jawline and clavicle area. I could only describe it as being shot up with novacain. I was in a panic because I knew something wasn't right. I was no longer thinking it was a disc problem because of the areas of numbness.
I talked to my PCP at home because I worked part time in the evenings tutoring his kids. He seemed a little concerned and ordered 2 weeks of PT to see if that would help. When that didn't work, he sent me to a neurologist for an MRI. I had 2 MRI's by December 2010. At that time, my syrinx was discovered. It was of a good size. It covered my c-spine and even into T-1, T-2. He then referred me to a neurosurgeon.
I saw my neurosurgeon on January 3, 2012. He announced that he was almost positive that I had Chiari I malformation but the radiologist had not found it and had not mentioned it in the report. He would be speaking with him about it. Just to be sure he put me through a series of neurological testing, as I was still numb and having clumsiness in my right hand. Two more MRI's were ordered (brain and thoracic) just to make sure no other cause for the syrinx (tumors, etc) and then surgery was scheduled on Febuary 3,2012.
I was told that he had done this surgery many times before and that if I was not comfortable with what he was telling me, he would not have a problem with me gettig another opinion or having someone else perform the surgery. I felt pretty confident with him and it was near my hometown. He explained that the surgery has an 80% success rate and that he would be using the dura patch, He also explained the risk of a leak but that he had never had a patient have that happen. Also, that he would have to remove at least C-1 in order to make room. Also, if the syrinx did not shrink to his liking, he may have to put in a shunt to drain it but, again, he never had to do this on any of his patients. Then, about a year to recover. I would have to be patient. It was a process.
I spent 3 days in the hospital and was off of work for 2 months. I was sent back on medium duty until November of that year. My follow ups were as follows: CT scan in hospital to check for CSF leak. That looked good. Then 3 week visit to remove staples. Then again in 6 weeks. Everything going along as planned. An MRI was done in October to check status of the syrinx. At this time, only a sliver remained. He was very pleased.
He told me in the hospital that hopefully, the surgery would help to alleviate some of my symptoms. Now what was weird to me was that, prior to the onset of my symptoms, I never had the infamous headaches that most people w/ chiari speak of. Only some recently noted pressure in the back of the head when coughing to much or screaming at an event such as a concert or a football game. I just couldn't understand how this all came about so suddenly, even though I had it since birth.
So this is what's been happening in the last year and a half since surgery. I have completely healed from the surgery itself. Went through it like a champ. I had no energy for a long time after surgery. It has only been since Feb. of this year that I have been able to feel more energetic and get back into a light exercise routine. As far as the numbness, it may have initially felt better but has never completely gone way. Now my whole hand is numb again and I am having clumsiness again.
I started having tingling into my right leg, especially when I sit. It almost starts to fall asleep immediately after sitting down. I have to shift my body or stand up to alleviate it. An MRI of my lower back was ordered at the end of 2011. Nothing signifigant showed up. Lost all the weight I had gained during the year, and then some but that didn't help.
The biggest mystery by far, is the pain in my right ear. I have complained about this from the beginning. It is noted in all my records. I have had pain and LEAKING in it. No one can tell what's wrong. I have had witnesses see the drainage! It has been checked before and after surgery by my PCP. I even went to ENT as suggested by my neurosurgeon....nothing. I am so sensitive to sounds and people sound muffled when they speak to me. Have ringing and sound cuts out as well. Hearing test says I hear just fine. I don't know what else to do!
I am also having balance problems as well as memory blips, This also happened before surgery. I too am a walking weather forecaster. My symptoms do increase with a change in the barometric pressure.
I guess I am with everyone else who's writing in. Can symptoms come back after surgery Also, if anyone has had a similar experience as me, please feel free to chime in. I am at my wits end.
I had a recent follow up with my neurosurgeon on June 6th. He has ordered another cervical MRI as well as more EMG studies.and asked to see me a week after they were done, not matter when I scheduled them. I had these done last Friday the 20th and Saturday 21st. I am scheduled to see him on Aug 3rd for results. In the meanwhile, after performing the emg studies,my neurologist has ordered another brain MRI which I'm having done on July 31st. I feel like it's dejavu. Supossedly both are just looking in case they missed something that they weren't looking for back then. Just a percaution they said.
I want answers but don't know if I can go through anything this major again! I'll keep you posted. Sorry to ramble on but I just had to get this off of my chest and really wanted to see if anyone else is may be having my symptoms post- surgery.
To answer ur question, yes, symptoms can return after surgery.....surgery is not a cure it is a means to slow progression and restore CSF flow....and hopefully reduce some symptoms.
There r issues and conditions we can develop post op, ICP, POTS....so the symptoms can fit what u r having...
How is ur BP?
Were u checked for Ehlers-Danlos? This can cause u to have a few issues like a retroflexed odontoid., or cervio cranial instability...
How about tethered cord? Do u have bowel or bladder issues?
Leg pains and or weakness, lower back pains?
AS to ur symptoms u only recall having some pains if u screamed or coughing...and many of us that is all we did notice as it is hard to see what we view as "normal" since we have always felt like this to be a possible symptom....but really look, how did u feel swinging on a swing, or blowing bubbles or balloons ..... I am sure there were more times then not that u had symptoms, but considered it just a part of how u were and who u were....and figured everyone else felt like this too...how about head pain with a BM....no a HA per se` but a pain none the less.....
May I ask what type of dura patch was used?
And u said he was removing C1...don't u mean part of it?
I know this can be diff and u do not want to think of another surgery, but some have had to have 2 or more....it all depends on how our bodies respond....as I mentioned, it is possible to develop other issues post op.
Ur NS should know to look for all those conditions and rule them out.
Thanks for responding to my questions. As I stated in my post, I had surgery first and asked questions later. I felt like time was of the essence and surgery was the priority. I understand why I was told not to research it before surgery because I probably would have been a little freaked out. I didn't know at the time how involved and serious this really was. As a result of that, I'm embarrased to say that I don't know all the details of my surgery, including the type of patch. I just assumed it was the only type they used. He called it a Durapatch (I believe a synthetic material, tough like leather). I didn't even know the size of the herniation when asked by my NS on my recent visit. I have copies of all of my tests and MRI's from the Neurology Center that I go to but the one place that I didn't get copies of my records was from the hospital where my surgery was performed.This should contain the surgical report and the CT scan done after surgery to check for CSF leak. I will make a point of picking them up this week.
I will also research all of the different type of conditions that you mention. The only one that I looked at so far was tethered cord. I came accross that during my research, post surgery. I will have all of this info with me when I see my NL in a week to get my results. It will be really helpful, especially if the MRI's don't reveal anything signifigant related to the Chiari.
I see what your saying in regards to childhood symptoms. Now that you mention it, I do remember pressure in the back of my head if I had to strain during a BM. Guess I always chalked it up to normal. As far as my BP, maybe just a tad high on the bottom (low 80's) but it is usually taken right upon arrival when I have had to walk a ways to get into the building. Just figured it was from that beacuse it returns to normal one I have rested. Oh, and btw, when I said C-1 removed, I meant shaved. He did mention that if I ever started to have any instability in my neck they may have to do a fusion.
I think my NL and NS are both good doctors and my NL is known to be very meticulous when it comes to his surgical skills. He spends more time than normal on a surgery. I'm just not sure how much they know about the long term healing process. Guess that's why he said we would gage things by my symptoms. He initially told me it would take around 1 year so I began concentrating on my recovery and focusing on that mark thinking all the pain and numbness to go away completely. I think that was what the big let down was for me when it didn't happen. Maybe I should mention to him to leave that timeline open for his future Chiari patients! LOL
I do feel blessed that I have only undergone this procedure only once without any major complications. After reading some of the other horror stories, I consider myself lucky and shouldn't complain. It's just that I have always been such a high energy person and this just diagnosis has knocked me back a few steps! I'm also glad that my MD's haven't given up on me. I'm glad they are looking at things from a different angle. I will keep you posted. Thanks again for the advice. This is a wonderful site and I am glad to have come accross it.
Hi there. I was also told by my first ns not to research on internet, it would only freak me out. That's strange because my nl, pain management dr, pcp and new ns agree that we need to research everything. Because of my first ns it wasn't til after my first surgery that I found this community. Wish I would have found it sooner. I would have gotten other opinions. But after I didn't feel better, but worse and will be having surgery aug20 with dr oro a chiari specialist. Good luck on getting all your files and figuring it out.....Dana
Thanks ,Dana! I too wished I would have learned more before surgery and had the support of this site. I will be leaving shortly for my appointment to get my results and hopefully some answers. I am armed with a list of questions and the suggestions of other things to look for that Selma suggested.Ii am sorry that you are having to undergo surgery again. I hope things work out better for you this time. Keep us posted on your progress. I guess if my symptoms continue and I don't get the answers I need, I will be seeking out a doc that specializes in CFS. This may mean having to travel but I will do what I have to do for my health. Again, good luck to you.
My daughter was diagnosed with type 1 and had surgery in 2009 she has had her last MRI in February this year and everything remained the same. What I notice now is that one of her eyes seems to be more of a lazy eye could this be a symtom and if it is could it be returning.
Hi I was also diagnosed with Chiari in October 2010 I had my surgery in April 2012 due to all my symptoms getting worse. I know it has only been 7 months but now most of my symptoms are coming back but this time a little worse then before my surgery I am dealing with Chronic Head pain on a daily basis , neck stiffness , trouble talking words gets jumbled , a little memory loss , balance I had fallen 3 times , right shoulder pain and burning , lower back pain had a steroid shot to see if it would help but still in a lot of pain . a brown spot in right eye , hands tingling . I also feel all alone with all that I am dealing with people look at me like I am making it up .I do not know any one who has or had Chiari to talk to . I try to tell my Dr at the Cleveland Clinic and all he tells me is the MRI looks good and there is nothing more he can do . he did have me go see a Head ache Dr and all she did was put me on all these meds and the meds she put me on doesn't help all it does is knock me out and makes me sleep 24 hrs . I just don't know what to do or who to ask for help . all I know is I can't deal with all this pain any more . I want my life back and to enjoy a day with out pain . I want some one to tell me I am not Crazy and that there is others that is like me b/c I do feel all alone I am getting more depressed b/c I can't get the answers i need to help me with the Chiari please if there is any one that can help me please reply !! Thanks For Listening
I am so sorry u r having symptoms return so soon post op. May I ask, did they test u for related conditions b4 surgery? Like ICP, POTS, syringomyelia,tethered cord, sleep apnea, ehlers-danlos.....it is very important as these issues can affect how u feel and heal post op.
i have suffered with headaches all my life and i always thought i had restless leg syndrome i always told my husband i was tired i felt like a 90 yr old in a 26yr old body i was very active never stopped then in september this year i had migraines for three weeks striaght so i went to a walkin clinic bc my reg physician was on vacation and it was starting to affect my work so he told me that is was a pulled muscle if it got worse let me know the next day i woke up with twitching in my eye my hands and legs were completely numb i was falling and super dizzy so anyways long story short after a week of going back everyday being called a drugy hypocondiac ik spelling is wrong he did a mri sentl me to a nerosurgeon i went for my appointment and he said to come back friday for another mri so i did he told me that i would be in surgery monday my husband and i were speachless he said my symptoms were pretty severe my cf fluid was completely blocked and mine was 13mm so i did the decompression surgery on oct 1 12 and my symptoms didnt get any better i can barely get out of bed in the mornings im in so much pain i just wanna give up no one understands what we feel like even my ns doesnt believe me i feel like its just hard with me being off and not being able to feel my hands im a dental assistant i have lost my job and had to apply for ssdi and its been a ruff road i go friday for another mri and my 2mo appointment and we will see what he has to say i am worse post op then i was before
I am so sorry u r feeling worse post op...this can happen tho as some develop post op conditions and issues. May I ask what is the symptom that u consider worse post op? Do u have HA's that are worse when u stand? or change position? If so, it could indicate a CSF leak.....
Get ur Drs to check u for related conditions to Chiari, that is very important and many of us do that b4 surgery to help prevent these post op issues.....
Ask about a cervical, thoracic and lumbar MRI to see if u have tethered cord, or syringomyelia...ne disk issues...
Rule out ICP, POTS and ehlers-danlos too....
What meds are u on? r u doing post op neck exercises? We r all different in how we tolerate pain and what u r dealing with could be a med issue and just needing to rest more....hard to say not knowing exactly what u r dealing with.
my ha r throbing when i stand up i just get so dizzy when i stand up all they have me on is pain meds and i have to fight for that my worst symptoms r pain numbness tiredness i barely get up during the day i just have no energy and im in constant pain im gonna look all the things u said i havent heard of them im new to all this its came on to fast
Hi...my daughter had decompression surgery 8-09 at age 18. Since then headaches gone, paplidema relieved, and other good stuff. She has had reflux issues and has since always had long sleep episodes. Lately she has been talking of this strange "dead sleep" she has been experiencing. She can sleep endlessly and never really feels rested. Her surgeon doesn't have any advice, I'm looking for a Minnesota area neurologist or any kind of chiari specialist...any advice or names? Thanks!
Was ur DD tested to see if she had ne related conditions to Chiari either b4 or post op? Many develop some issues post op like ICP or POTS.....
As for suggesting Drs, we do not as I could have a Dr I like, but u may not, so what is right for me may not be for u, we do post a list of Drs that the members of the forum have been to and liked....u can use this to research Drs to see which one is best for ur DD.....
Keep in mind not all may be true Chiari specialists and this list is of NS's not NL's....so u may have to ask one to refer u to a NL in the area they feel understands Chiari.The list can be located in the Health Pages.
Hi Selma...I am not familiar with the lingo you are using! I don't know what DD means, ICP, POTS..... She has had cat scans every year until last year as they are following a potential aneurysm as well. I believe she has had MRI's as well, but there have been so many tests I can't remember. I guess I'm looking at where to go next....I thought maybe someone knew of an actual chiari specialist. Thanks for your help!
Not too many see it as it is not well lit or should I say tucked neatly aside and it is missed.
DD= Dear Daughter
ICP= intracranial hypertension
POTS=Postural orthostatic tachycardia syndrome
DO u have copies of the MRI's and Cat scans? the reports? If not call the facility and request them, going forward each time she has testing and goes to sign in for them request copies at that point, this way u have all the info and u can make copies and send it to potential new Drs that can get the info much quicker this way.
Here is a link to the Health pages (also located in the welcome) and u can use this to research Drs, u may not find ne close to home and may have to travel...I went out of state as I could not find ne near me....
BTW....I was trying to copy and paste some of the terms to google them in your note, but the entire note would highlight and an exclamation point and "report" would appear! I certainly hope I did not report you..that was not my intention! Just thought I'd let you know! Thanks again, Lisa
I only found out 2 years ago I had a chiari, I was in hospital with kidney stones while in there caught mrsa and meningitis. Started getting excruciating headaches whilst in the hospital (never got headaches in the past) passing out, numbness in left arm and leg, was sent for MRI and lumber puncture and revelled I had type 1 chiari and there was blood in spinal fluid,, had 1st op 3 months it was discovered after in nov 2011 with little to no improvement then had 2nd op July 2012 with good improvement, just the last few weeks iv been getting the server headaches, pressure feeling and the impulse dizziness on coughing sneezing ect, and its constant, do I need to contact neurosurgeon or just ride it out and get used to the fact this is life from now on? Iv got a 7 year old son with ADHD and autism and a very hypo 5 year old son. My current pain level is really effecting how I'm coping with my sons illness I'm finding all I want to do us curl up in the dark with the strongest pain killers I can find. I'm so hoping this is not forever, I just want to be the fun energetic mum to my boys that I was post chiari symptoms :(
The member u r replying to has not posted since 2010...I am not sure if they still troll this site to reply back, u can try to send a PM, which should generate an e-mail to let them know someone is trying to make contact.
I hope u continue to share ur Chiari journey with us here, start a new thread.....
I had Chiari Surgery 4/12. The symptoms I was experience was incontinence, confusion, loss of memory more than normal (I had brain surgery for a very large meningioma in May of 1999 that caused a fair amount of brain damage), ringing in the ears, numbness on my left side, left eye twitching, left hand twitching. I would get lost in the city I live in and not know how to get to my sister's house even though she lived there over 10 yrs. I couldn't remember my street address. I thought I had early on-set Alzheimer's. I have not experienced any memory loss, confusion. etc until this past month. Once again I got lost driving home from a grocery store I shop at every week and literally did not recognize what street I was on. I also couldn't remember my street address but I did know which duplex/door was mine/I own the duplex. I also have a new meningioma behind my rt eye but it is pea sized so should not be causing any of these affects. I have asked my NL to call me back to see if this normal but after reading these posts it appears they may be. How upsetting. I was not warned symptoms could return. I had a laminectomy on C-1 and duraplast patch but unsure what kind during my Chiari surgery. I had a CINE MRI that did not show complete blockage b4 surgery.
Hi I am so sorry u r again having issues, and the Dr should have told u that symptoms may return or never leave completely...surgery is not a cure, but a means to restore CSF flow and slow progression.
Do u know if u have ne related conditions like a syrinx, tethered cord, sleep apnea, ICP, POTS, ehlers-danlos?
Many times these related conditions have similar if not the same symptoms as chiari...so testing is needed to know.
U do not need to have a complete blockage to have surgery, as even an obstruction that allows some CSF to flow can be disrupted enuff to cause a syrinx to form and cause pain.
No tethered cord for sure, no sleep apnea however I haven't slept well since my 1st brain surgery in '99. I had a Chiari Specialist in Milwaukee and he was quite thorough, unbelievably thorough so if I would have syrinx I'm sure he would have known. I don't know about the ICP or POTS but I thought I was tested for ehlers-danlos but will have to check. I was warned the symptoms may not go away - he was clear about that but since the symptoms did go away I thought I was free and clear. After reading all the posts I wonder about other things like my persistent cough in winter months and I am talking 8-12 weeks of continuous coughing, I live in WI, I have had bowel issues for longer than I can remember and a lack of balance when I was a child & maybe some as an adult but I have learned to adjust and not even know it is happening until I concentrate on it. Since I 1st posted my NL has called and wants to see me next week. I really like him and hopefully after he reviews the MRI I had with NS 3 weeks ago he may have a better idea of what is going on. I know I don't have it nearly as bad as others on this forum however getting confused/lost while driving in my own city is very upsetting, I do know the Cine MRI showed impinging on the spinal canal so the flow was not at full strength but that is all I remember about that part. Thank you for your quick response, maybe next week I will know which direction we are heading.
I met with NL and he believes my forgetfulness, confusion and the fact that I can suddenly no recognize where I am is related to the meningioma I have behind my rt eye. It is small but with since I have had 2 previous brain surgeries it seems it doesn't have to be large to cause these kinds of effects. So for now, there isn't much I can do but take more medications.
I hope everyone else can get some answers and some relief from their symptoms. I will keep checking in to see the latest updates from everyone.
I only had problems with vomiting when I had a CSF leakage after my first surgery. Three weeks after the first surgery, I had the leakage repaired, but coughed ridiculously for about a month or two after the second surgery. The vertigo however ended immediately after the first surgery. I currently have episodes of head pressure more so than headaches but its only when I go to a funeral and sit up on those church benches normally for about two hours straight. I have to ligh in bed all day because of the pressure then on my head over my eyes and behind my neck. My GERD is really bad during these episodes. I can't keep any food down and then vomit.
How long has it been since ur surgery...some develop ICP or POTS post op and some of us also have other underlying conditions such as Ehlers-Danlos...so many times this can be the reason for the pressure and HA's we continue to have post op.
U may have low CSF if u feel better lying down....have u been back to ur NS for a post op MRI?
I had symptoms over a period of 3yrs, which worsen to such an extent that i could hardly move, for any movement, noise, light or even turning and blinking my eyes would highten the severe pain i felt in my neck, shoulders, arms etc. After having seen 15 doctors of different backgrounds and opinions, i finally saw a professor at steve biko hospital pretoria, who suggested a decompression. It was explained that they would shave a bottom part of the skull and remove parts of the top two vertebra. I was supposed to have a 2-3hr opp, which ended up being 9hrs. They only said there were some complications and after opening my head up, they realised it was much worse than they have foreseen...never explained to me and to my surprise, not noted in my file either.
I had the opp in 2010 and was formy 3rd annual checkup in march 2013. Eventhough i told the doc that all of my earlier symptoms are slowly starting to return, they took an MRI and it showed all normal.
Still i find that after a couple hours of work or driving or laughing, singing or coughing, i want to crawl into a corner and cry from the pain in my neck and head.
It also feels like i am hanging upside down and all the blood rushex to my head and with every heartbeat there is a swoosshhh noise in my head and when i shake my head from left to right, i hear and feel a bone-grinding effect in my neck, and swelling.
I started to play tennis, but after one lesson, i have to lie down for at least an hour.
My doc also said no hard impact sports, 4x4, rollercoaster, bungi, skydiving etc...never again
Chiari is a life altering condition and surgery is not a cure,only a means to restore CSF flow.
And it is very possible u have a related condition causing u some of this distress....were u checked for EHlers-Danlos? Those that have this in addition to Chiari can have instability of the head, and after having the decompression it worsens bcuz of the bone shaved off the first two vertebra.
There are many things u may not be able to do in addition to what u listed, u have to listen to ur body and adjust....I had my surgery in '09, I do not work, can not drive...but I am so much better then I was....I do have EDS and a few other related conditions making my issues and restrictions last this long,...I have perm vision issues as to y I can not drive....and my EDS is affecting my fatigue and joint pains, and I have tethered cord so low back and leg issues along with bowel and bladder issues....makes working at a job difficult.
I would suggest u be checked for EDS to see if u have an issue with cerviocranial instability....as that could account for how u feel and the sound u hear.
Hi Selma: I didn't want to sound like a know it all b/c I am surely not. But should someone suggest to Grinhead that her NS measure her CSF for fluctuating levels? When my symptoms stating coming back that is one of the 1st things my NS did, he did a lumbar tap on 3 occasions to measure the pressure of my CSF to see if it was too low, high or searching for evidence of a leak. When he did not find such evidence, then he knew to start looking elsewhere for the reason for the reoccurence of my severe HA, balance problems, numbness & tingling in my hands, feet and face, pressure behind my eyes, concentration problems, etc What he found was scar tissue from the first decompression and brain slump.
No worries, Grinhead has not been an active member since Aug of 2012, and I am sure we did suggest that to her...as I do a lot of PM's too....but it is good to mention it here as well since others continue to post on older threads.
Cerebral ptosis is a diff one to find if u go back to the NS that did the surgery...the DX is like saying I did something wrong.....so that adds to the not finding the problem.
and scar tissue does not always show on a MRI...not sure y...
But all the reasons u mention are good ones to look for as they go unnoticed.
Hi everyone. Thank you Vickyf777, I am new to this posting and did not realize I could post to everyone at one time. That is why I just posted to Selma with a suggestion for Grinhead b/c I didn't want to seem like a "know it all". I am new to this site, but to me it is a God send. To have someone to talk to about Chiari who understands and who is there and who has been there is worth more to me than almost anything.
Chiari has given me many things in my life.....it has given me severe migraine headaches almost everyday, 2 brain surgeries, numerous medical bills, depression and feelings of worthlessness, anxiety for the future, balance problems, night blindness when driving due to photophobia of oncoming headlights, sleep problems, plus more physical problems and much leisure time because I had to leave a job that I loved working for a US Congressman for 31 years because I just could not function any longer with the Chiari.
After my 1st decompression surgery in 2005, I had a few good years with minimal symptoms until the bad problems returned and I had to have surgery again in 2012. But what we all have to try to remember is to find the best NL, NS and Family Dr. we can and try our best to not let it beat us.
Chiari is the hardest thing I have ever had to go thru, and yes the weather does affect my symptoms and Chiari is affecting my ability to sleep greatly. But with people like you on this forum, good doctors, family & faith you have to push on. I am praying every night for anyone who has Chiari. Resa
Hi, I was diagnosed with chiari in 1999. My symptoms were so bad, I decided to get surgery 4 days after being given a choice. They included the signature cough headache, balance problems, tingling in all of my extremeties, vision problems along with other symptoms. I remember still being in the hospital and getting the feeling back in my hands. To me, it was miracle surgery, within weeks all of my symptoms were gone. I was under the impression it was done and over with up until this week. I seem to have some numbness coming back in my feet. I now know it is possible for the symptoms to come back but is it possible for them to never come back? I am hoping I am just being paranoid.
hello all i had surgury jan 2013 i was in hosp for 8 days. two weeks l8r i
was back in with sever headaches i was out 3 days l8r.they said it was because i stopped my steroids. they let me go home and the headaches
got worse.again i was back in with an infection called chemical menengetis.
they treated me with antibiotics for 10 days and i was out again.threw those 10days i had 5 LPs done.Two to tree weeks l8r i was back in with sever headaches neck pain sicky stomache and sensitivity to light.I had another 2
LPs done my CFC was a orange brown colour. They said i had bacterial
menegetis this time they opperated again and cleaned out the wound. i was treated with 3 different antibiotics 7 hours a day for 4 weeks during that time i had a lumber drain in my lower spine.It was the worst and most uncomfordable time of my 15 years of having syringamelia.I had been going to my GP complaing with headaches numbness on my right side and crushing pain on my neck and back of my head.The doctors told me for years i had arthrites but after anMRI in 2012 i was diognosed with syringamelia.It is now sep 2013 i still suffer the same if not worse.I have found that you just have to get on with it .my name is john i live in N.ireland 2day while writing this im in pain but i just wanted to share my story with the rest you i have another MRI next week so hopefully i have
better news. I wish to thank all the staff at RVH wards 4e and 4f and my surgeon dr simms .
could you please tell me exactly where you are getting your information about the other problems that can occur after surgery! I've been diagnosed wih POTS and myasthenia Gravis after I had the Arnold Chiari Surgery. My symptoms are coming back horribly bad. I'm also loosing my peripheral vision now and that is a new symptom. my doctors think I'm crazy and I need proof of things that happen after the surgery to present to them please help!!!!!!!!!!!
I do not have a source u can quote....as for conditions like POTS or Myasthenia Gravis, it is possible u had this condition prior to surgery, but since symptoms can be similar it is not possible to know for sure what else is going on unless u were seen by a true Chiari specialist.....
Conditions that may be a result of surgery are cerebral ptosis, meningitis, or a CSF leak pseudoMeningocele .....
I am always saying to not only see a few Drs, but be sure they are well experienced with ALL related conditions as they can affect how u feel and heal post op.
If u have a syrinx, or tethered cord, and especially ehlers-danlos u can feel worse post op as the symptoms from these other conditions flare up....it can appear that ur decompression was a fail, when it is these other conditions that are affecting u.
My comments referring to some develop ICP or POTS post op can have to do with not knowing they had/have EDS as we r prone to reject foreign matter....as a result. our body can over produce CSF or stop absorbing what it normally had in the past.
When I first posted on this is was from seeing what members are going thru, but those DX'd with POTS etc post op were also DX'd with EDS post op....my feelings are the excess CSF being produced is the body rejecting the patch used for the dura plasty....some Drs jump and say ICP or POTS when in fact it is a reaction to the patch....MY NS was clear this was a possibility if my own tissue was not used.....
thank you for responding! I have not been diagnosed with CCI no. but I do have trouble lifting my head and I can not t urn it to the left or right quite often so I feel like it lol. My dr. is not a chiari specialist we are in the process of looking for one but it is slim picking in Alabama. who would you recommend? right now I have been diagnosed with Arnold chiari 1 with a tethered chord. it was wrapped so badly around my C1 they had to shave it off of it and partially remove it. I had the decompression surgery in 2012 and had relief for maybe 3-5 months and then everything and more came back. I went to the mayo clinic who diagnosed me with POTS and after even more went wrong I went back to my family dr and after blood work he diagnosed me myasthenia gravis. my symptoms include severe headache, I can feel built up pressure and thick fluid running down the base of my skull. I have blurred vision, double vision and literally no peripheral vision ( I run into walls and other things). my numbness have gotten worse and last longer and now is on both sides of my body instead of just one side. memory loss and gaps, I also have ear drainage that runs down my ears and side of my face. dizziness, fainting and pseudo-seizures, muscle weakness, serve diarrhea, shacking limbs, weird eye movements, and the list goes on but I have trouble putting it all down because of my memory. my neurologist told me the other day that there is no way possible that I could be having trouble with the Arnold chiari because I had the decompression surgery and that I was grasping for straws because of everything that is going on. I am just trying to get my life back and right now I have idiot doctors that think im crazy please help if you can.
Hi, I do not recommend Drs, but we do have a list of names that other members here have been to and liked, that does not make the list a referral nor an endorsement ...it is meant to be used as a tool to research the Drs to find the best one for u.
Not all of us will find a Dr close by, so we do have to travel or deal with a Dr that is close but not well experienced with Chiari and related conditions.
Do u know if u had a dura plasty and if so what type of patch?
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