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?

[Fally2016]

Hi there. A dura patch was used.
My initial MRI revealed extensive syringomyelia and chiari malformation... Did a few tests earlier and the doctors didn't see anything related to my symptoms. Am desperate for a solution so pls advice.
Am currently on gabapentin and pregabalin.

[Fally2016]

To selmaS. I wanted to type Neuropatch...

[selmaS]

Neuro patch is not a type of patch.....they would use cadaver, synthetic, bovine or one from the patient after they harvest it from either the skull or thigh.....
How did they seal the leak you had?

[Fally2016]

Well, my doctor said "Duraplasty was achieved by Neuropatch and sutured by 4.0 silk sutures".

[selmaS]

It is a synthetic patch....it is a brand name.Just did some research.

[Krysli82]

If you have EDS (ehlers-danlos syndrome)  the synthetic patch that they use for you probably is what caused a lot of the Problems..They should have used the bovine patch.. Request a New MRI and make sure you don't have cerebellum slumping

[Fally2016]

Hi. I had my chiari decompression surgery in December 2016 after several months of severe right shoulder and arm pains. I was diagnosed with chiari malformation and syringomyelia. I had a few postoperative complications ranging from spinal fluid leakage to severe headaches and dizziness. I resumed normal activities a few weeks after surgery.
Unfortunately my severe nerve pains are back now and it's even worse than it was b4 my surgery. My recent MRIs have shown no syringomyelia. Am confused and have been wondering if the surgery was the solution to my initial pains. Am tired of taking strong pains meds which might hav side effects in future.

[selmaS]

Hi and welcome to the Chiari forum.
May I ask, did they open the dura and place a patch? And were ALL related conditions ruled out B4 surgery?

[Fally2016]

Yes they did put a patch in place. I believe all other conditions were ruled out based on d results of the MRI.

[Lyni1217]

OMG, sounds exactly like what I'm going through.  I had decompression surgery and laminectomy in Oct 2016.  Less than 2 months after surgery, my headaches and neck pain were back with a vengeance.  I am in more pain now than I was before my surgery and I'm now afraid I will have to go back under the knife  :(

[selmaS]

To Fally2016 MRI is not the only means of testing needed to rule out related conditions.....Ehlers-Danlos is not tested via MRI nor is POTS, sleep apnea, Hashimoto's thyroditis,....MRI's if of the right area of the spine can show Syringomyelia,ICP, baslar invagnation, retroflexed odontoid, etc....
Do you know what type of patch was used?

[selmaS]

To Lyni1217 Hi and welcome to the Chiari forum.
May I ask, was your Dr a Chiari specialist and were ALL related conditions ruled out before surgery? Did you have a follow up MRI post op?

[Cinmiller]

I had my surgery in 2001 and recently I have been getting severe headaches. My MRI  report said there have been no changes. This surprised me. I was sure something was going to show. My primary care dr. said that doesn't mean there is nothing wrong and is sending me to my NS anyway. I am taking elevil at night as well as 1/2. A Percocet in the evenings when my headaches are the worst. That seems to be helping. Reading the posts helps me know I am not alone. I hope you all find relief.

[selmaS]

Hi and welcome to the Chiari forum.
Since this is an older thread you may want to post a new thread or to a current one to get more replies.
You are definitely not alone.

[selmaS]

  Hi and welcome to the Chiari forum.

I Pray your surgery works for you as well....we can post a prayer thread for you, just post your surgery date on the surgery date thread.....and a prayer thread will be posted.....

May I ask what symptoms you have been having? How long have you had your symptoms....and do you have any of the related conditions?

[tes3]

hi there i have got chiair malformation 2 i have got 2  have surger soon i just hope this works

[selmaS]

  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?

[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?

[scubby1969]

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.

[Resa181]

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

[selmaS]

  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.

[Resa181]

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.  

[selmaS]

  Hi and welcome to the Chiari forum.

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.

[vickyf777]

hi all,
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

I would love to hear your comments

vickyf777

[selmaS]

Hi and welcome to the Chiari forum.

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?

[raneal2010]

Hi ,
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.

[selmaS]

  I may have asked u this already but have u had a more recent MRI?

So many with Chiari seem to have these issues as well....do keep me posted on how the meds help.

[CindaLu1]

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.

[CindaLu1]

I will as soon as I know anything

[selmaS]

  Good luck with the Drs next week and do let us know how it goes.