Post-Op Chiari Decompression Surgery

[tink71083]

I was diagnosed with a Chiari I Malformation with moderate syrinx of the spine about 4 months ago. The symptoms included sever headaches, lower back pain, dizziness, blurred vision, heart palpitations, sever pain in both legs and the left are and decreased motor skills in the left hand. The Chiari was more sever on the left side of the head. After the symptoms progressed from none at all to extremely sever to wear i couldn't make stairs by myself anymore after only 6 months, my neurosurgeon suggested I do the surgery immediately. I had the sugery done on March 5, 2008. I was out of work the entire month of March and although the first 2 weeks were tough I got through it and I am now back at work. I have not had any discomfort for the last 2 weeks. Today the headache returned and is more severe than prior to sugery. I am very dizzy and the dizziness gets worse if I try to turn my head side to side. I have full mobility back in my neck since the surgery and until today have been able to move with no discomfort. What could this be from? Do I need to see my surgeon or is this a normal part of the healing process?

[(Not so) Spunky]

I haven't had my surgery yet- scheduling on the 14th- but I have talked with NUMEROUS people who've had it done, and they say sometimes their symptoms are worse after surgery.. Hopefully this is not your case!! I would at least call my NS and ask. I know that headaches after the surgery are common, but if they're getting worse, or more consistent, then I think it would warrant a call.

[(Not so) Spunky]

Oh and also, not sure if you already have, but there is a  website for those of us with SM- ASAP.org. There are alot of people there post op who caould probably help you better than my little tidbit of info!!! Hope you feel better soon!!

[swichngers]

You might want to look into craniocervical instability as a possible reason. I have it as a result of Ehlers Danlos Syndrome hypermobility type and would have to have a fusion if I decided to get a PF decompression for my Chiari Malformation.

You can check out www.chiariinstitute.com for information about research conducted related to this issue.

How are you doing?
~Erin

[groomer121]

i am struggling with the same issues, I have seen one dr who says I have Chiari 1 and the others dont want to help me, my symtoms are severe and I have to work,

[tomsmom11]

My 2 yr old just had surgery on 0ct 22 and i havent found anyhting on the computer about little kids with this and i need help, prior to surgery i didnt notice any problems they found it looking for something else during a mri so we are seeing a great dr and she wanted surgery done sooner hoping it would help him through his life so it wouldnt get worse as he got older, but now he gets headaches all the time and wakes up in the middle of the night crying and i have to go in and rub his head it is so hard to see my little guy hurting so much and i have read so many posts that the after surgery is worse i feel that is what is going on with my son, any one have any sugestions i have called the doc and now they may want to do another mri sooner than 6 months i just feel lost!!

[selmaS]

Hi...sorry about ur little guy.....it is important to know there is no cure for chiari...only treatments to help lessen the symptoms.....it is possible ur son developed a CSF leak as a result of the surgery.
Also is the treating dr a chiari specialist?...this is also very important.Do u know if they checked for other conditions related to chiari?....syringomyelia or tethered cord?

If he was not checked it is also possible for him to have one of these and it could be causing his current pain.

Please stop by the chiari forum here on MedHelp.....we have many members who have had surgery....and or their child had surgery...some r still waiting on surgery...so we have people that have BTDT...and can offer info and support.

We can also help u find a true chiari specialist if u feel u may need one.

I hope to see u in the forum and pray ur little one finds relief soon.

Godspeed
"selma"

[tomsmom11]

Thank you so much, he also had surgery on the tethered cord at the same time. The doc that did the surgery i belive is a specialist, we had to drive 5 hrs to get to the hospital, i belive they will do another mri soon but everythign i have seen on the internet shows that it just gets worse and thats what im seeing, i hope that the choice to do surgery at such a young age was the right one for him.

[Ursula173]

Hi, After a rear-end crash I developed the Chiari I malformation. The headaches across the right side eye, ear. Loss of balance, dizziness and choking because of the herniated disks, nerves in the esophugus. I have read for years that sometimes if it is not severe, it is better not to operate because of danger of getting menengitis. My neurologist keeps an eye on my condition with MRI making sure my medulla does not lower and I am not to pick up any heavy objects though living in a farm I love to do things. One time my vision became tunnel and scattered after picking up a heavy peace of tree. They thought I was having a stroke. I went to the emergency and they gave me a medication for the headache that gave me a severe anxiety attack I felt that if I did not leave, they were going to kill me. They had me scheduled for a closed MRI and were going to put me to sleep and hospitalized. I ordered them to take the IV off and that I was going home. The next day I went to the doctor's office and they thought I could have had a painless migrane? It seems that many many doctors do not understand fibromyalgia muscle cramping, chronic pain, and now the Chiari I . Every one of you have to study up on these and desern your symtoms with a doctor that know. I go to specialist and then have my General Practioner who knows all I have discern on the medications. Most of the time he weighs the side effects against what I need and we decide. Everyone needs to have a doctor like this who puts everything together for there are many doctors envolved with multiple conditions like me. Many do not understand the symptoms of Chiari I malformation. think it is migrane and really do not know what to do. Medications make it worst sometimes making you dizzy. I have chronic Fibromyagia along with herniated back disc from my c2-3 to my SI. I also have inflamation of my cartiledge in my chest/rib area so breathing hurts along with the muscle spasms and skeletal conditions on my spine, knees and spurs on my heels. I can continue but I do not want to get anyone depressed. when doctors see all I have, they try to prescribed anti-depressants. I am not depress, I enjoy my life as much as I can praising the Lord and HIs coming and promises. Our joy should be on this in this makes us bare the chronic pains. Push forward and do not just sit for the less you do the worst you might feel. There are day with my chronic fatique that I can not bare to get up. but it passes and I do not go against this day. But in a few days I get up and do what I like in the garden or something I enjoy. therapist have told me to work on my muscles to make up for the spine condition. Still I have to be careful and consider everything carefully including medications. I have been prescribed Lyrica, and Nortriptilin.... many many I can not think and they make me worst. I can barely remember names of my own sons for moments. One day at a time and make my joy the hope of the coming Lord and all He promises for us. Be of good cheer and all have to learn to discern what is best for each. Be careful not to rush into surgery! I have heard that it does not help much but can make things worst..... do not take chances unless it is needed and get many opinions. I have learned that my joy comes when I think of the good promises and think of situations and true historical things and how they worked their situations and God took them through. I do not depend on my family or anyone for my joy for everyone will let you down sooner or later therefore if your joy is on individuals no wonder we would get depress! It is hard to do this because sometime the more we love the more hurt we become and then the pain get physical and more because the emotions have to do with pain and depression. Listen to positive music lyrics and positive books that will bring a joy to your heart. I love Karla Donacher books that are positive and encouraging and make you feel so special and unique. I get her books in Amazon.com. They all bring a blessing, joy and peace.
Blessings

[selmaS]

Hi....I am sure ur chiari was always there and just triggered it and the symptoms with the MVA....this happens often.

I also know that EDS a related condition to chiari is often mis dx'd as fibro....wonder if u might have that.

It sounds like u may have a good NL looking after u, but u should also see a chiari specialist.

I pray u continue with ur postive outlook and invite u to join the chiari forum Here on MedHelp.

"selma"

[tasha62]

hi,im a mum of two and had my surgery back in dec 06 and was signed off by the surgeon in march this year but im worried as im now havin the sensation that my spine is bein crushed and the headaches have started again altho they tend to start after a night shift but its as tho it starts in my back then it reaches my head does anyone have these symptoms????

[KellyBean1]

Hi i had my op in July 09 and a 2 weeks later had a cfs leak and had to go again.  i started having sypmtoms again after the 2nd op and thought here we go, the lumber puncture was so painful, i had 3 and my back hurts like no other. But because  i had the LP i was to lie at an angle so the fluid could drain properly when i did that i seemed to get better. i was fortunate not to get flu during this period but i have in the last 3 weeks and i have started having syptoms again, i thought it was the coughing adjatating it, but they symotioms are to familiar......

My chiari side is the right, my ear is swollen and sore, i am batteling to swallow, my neck is stiff, the exhuastion is back, so tired cant keep my eyes open, i have a stining pain where the wound is and the back of my neck is really swollen,  my dad said it could be the scar tissue but it swells and when i get it massaged it goes down a bit.  i want to find out as much as possible about post op, because the hardest thing forr me to absorb is that my life is different now, i cant be the woman i was before, the carefree and happy go lucky girl i once was.  I am sad because i liked who i was before, and now i have to sqay goodbye to her.  i still havent accepted  the why me...... and i get a litttle depressed... i have started at the gym, only to swim and my journey of recovery has started, but i cant help but wondering when its coming back and if it is why should i put my family through this all over again,  i feel very lost sometimes and need to know if there are people out there who can tell me what i can and cant do... i understand i cant go to theme parks..... lol but i have started smoking again, i am always stressed , i have my own business,i am always on the go (i have two small children) so its sports, schoolwork, i dont stop from 4:30am to 8pm at night  them i collapes and i am exhausted... but then i lie awake or toss and turn, because i cant get comfortable or lie and worry about finacials if i cant work... because the deseas is not recognised here in South Africa, my dissablity wont pay me because they say there is nothing wrong with me.... well we all know that this is the invisable disability... how can you proove you are not well.......so do i keep going until i drop down...... what do i do? i also dont want to land up in a wheel cahir and be a burden on my family.... i have been avaiding my doctors visit because i know they will have to do a CT scan ... i am emotionally not ready for another brain op......

[Min6]

I just recentlly had the chiari surgery on June 21.  My doctor found that part of my brain had been so badly pushed down that it had died and needed to be removed.  I went home after only 4 days only to return as I had a high fever and uncontrolable headaches.  It was found that I contracted herpes viral meningitis durning the surgery.  I was treated but recovery has been ever so slow.  I am wondering if this happened to anyone else.  Also does anyone have any happy endings with this surgery?  I sure would love something happy to look forward too?