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?

[bobblehead1126]

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.    

[selmaS]

  Hi and welcome to the Chiari forum.

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.....

Ur name is bobblehead, is that bcuz u have CCI?

ANd is ur Dr a chiari specialist?

[bobblehead1126]

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!!!!!!!!!!!

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry u are having such a rough recovery from surgery.

U mentioned u were DX'd with Syringomyelia, but were u also DX'd with Chiari?

I know it is possible to develop both kinds of meningitis post op and the dura patch failing can be one reason for bacterial strain./

Do u know if u had a dura plasty and what type of patch was used?

It is also important to rule out ALL related conditions like ehlers - danlos as it can affect how u feel and heal and can cause rejection of a patch....

I know Ireland is not an easy place to get answers for the questions I asked, but do try to ask ur Drs when u go for the next MRI....Good Luck.

[johnboo]

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 .

[selmaS]

  Hi and welcome to the Chiari forum.

I imagine it is possible for them to never return, but the thing is surgery is not a cure it is a means to restore CSF flow and slow progression, so it sounds like u had a long time without symptoms.


Scar tissue can develop over periods of time and cause the same CSF obstruction that the heriation created...so that in itself can cause the symptoms to return.....

And underlying related conditions could flare up as well and many of the related conditions have similar if not the same symptoms...

DO u know if ALL related conditions were ruled out?...Syrinx's in  ALL areas of the spine, tethered cord, ehlers-danlos, ICP, POTS?