Has anyones symptomes come back after surgery?

[Niki2004]

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?

[Niki2004]

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.

[Niki2004]

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!

[jvilletina2]

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

[selmaS]

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"

[fatenabu1]

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

[selmaS]

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"