Post operative Arnold Chiari decompression complications

[Saggy Jones]

My wife has had an Arnold Chiari decompression operation and since the operation has been experiencing several post operative complications:

1. Headaches - from fron to back of head
2. Extreme nausea and vomiting
3. Build up of Cerebral fluid between the inserted membrane and the back of the head - causing this area to bulge and cause extreme pain.

Should this Cerebral fluid not be draining somewhere?

[BMac3434]

Laura! You are singing my song!  I felt like I was the only one handing out copayments to physicians only to be written prescriptions that does absolutely nothing to alleviate the pain!  I want answers and not just a mask to the pain!  I had chiari decompression surgery in 2010 and days later had to have a CSF leak repair.  I have debilitating headaches daily.  They keep me bedridden, nauseated, cause swelling around the incision site and my right side is weaker than it was.  I have black outs and fall often.  My vision wanes and lately I have experienced jaw pain. I get discouraged, but I am not giving up.  I have been tempted to go the the Chiari Institute in NY, but traveling throws me into a vertigo nightmare!

[synchroswimmer]

My previous posting dated 18 Oct 2012.
Please see also Jaime2013 post 29 Jan 2013 - Neuro thought the patch on the dura had a leak, but the problem was beyond the dura and it ended up being the arachnoid layer that for some reason had delaminated itself and created a pocket collecting the fluid.

[synchroswimmer]

Hi there,
Sorry did not see your post earlier.
My daughter had the same symptoms post ops. She vomited about 3 weeks post ops and we send her to the hospital immediately. They suspected an infection (meningitis) treated her with antibotics drip but later found a leakage in the stitches. She was re-operated to mend the stitches. If you had not send your daughter for a check, please do so & immediately if she runs a fever. My daughter now has occasional headache & back pain with a lower intensity. We're trying alternative medicine for 6 months now ... she seems to be getting better. Keep you posted

Regards
Synchroswimmer

[cdb258]

My 12 year old daughter had chiari decompression surgery on sept 30th..in the last week she has had headaches, said her head feels sleepy. We just saw last night for the first time that her pupils were huge. we both have the same light colored bue eyes and were in the same light. Hers were atleast 3x my size..Called surgeon no one seems worried. I however am.

[A_Rare_Species_22]

Thanks for posting your experience with chiari.   My daughter is 12 days post op and about 2 days ago started  dealing with head pain, nausea, vomiting/not feeling well.  She started her college classes 1 week after her surgery as she is determined to not let this slow her down.   Obviously she is experiencing issues as I am sure her body is letting her know she needs to rest.  She turns 22 in October and was diagnosed with chiari in 2004 accidentally through an MRI taken due to her having seizures.  She out grew her seizures by the age of 14, but has always suffered with head aches/migraines since she was young.     I hope to post more about her recovery.

[selmaS]

  Hi, I see u did join the Chiari forum.....and I am glad u did....but u did not repeat this info so I came over to take a look and meet u.

Wow u were lucky to find that cyst....many of us do experience a reoccurence of symptoms around 3 months post op...many times it can be from over doing it as the first few months u feel great, but u have meds and drugs in ur system and it can give a false sense that we r 100% better and then we do far too much for the post op period needs more time, as this can be a slow recovery as it can take 2 yrs for the nerves to heal.

I pray u continue to do well and recover from this  last surgery <3

[Jaime2013]

Hi, I was diagnosed with chiari type 1 in Feb 2011.  It wasnt until after I had my daughter in 2009 that the symptoms really became unbareable.  Pcp ordered an mri just to be safe, and every day Im thankful he took a chance with that.  I had decompression surgey in June 2011 at Mass General in Boston, MA and felt amazing immediately afterward. It was about 4 months later, all my symptoms slowly started to return.  After several mris, over the course of a year, it was apparent that the spinal fluid was building up somewhere.  Neuro was hopeful it would fix itself, but it did not.  In May 2012 neuro tried to aspirate the fluid out as I had a dizzy spell that was going on day 8 straight.  It helped briefly, but the fluid built back up.  I am currently recovering from my second chiari surgery (Jan 10, 2013).  Neuro thought the patch on the dura had a leak, but the problem was beyond the dura and it ended up being the arachnoid layer that for some reason had delaminated itself and created a pocket collecting the fluid, therefore, bulging and causing pressure on my brain and the dura patch.  I encourage everyone; if you know something isn't right than most likely you're right.  I wasn't stopping until I got answers and come to find out I was right and yet again baffled drs.  Don't be afraid to ask for more tests or get stern. No one knows your body better than you do.  Hopefully, this is my last surgery.  I wish everyone well!

[selmaS]

  Hi...I want to invite u to the Chiari forum here on MedHelp -http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc

Post op issues like u mentioned is possible, I am sorry ur DD is having to deal with this...and know she is  not alone....stop by the chiari forum for more info and members to share with,

[synchroswimmer]

My daughter had the decompression ops done in mid-Sep 2012. She does not have what you would termed full blown  - Chiari type - 5mm .  Her symptoms are excruiating back pain, headache & numbness on the arms. X-ray & bone scan did not pick up any abnormality. After one & half years of going around & physio, a MRI was done. We decided she needed to have the decompression surgery as there was no other option.  The symptoms would not go away, only got worse. 2 Doctors seen had different opinion whether to operate or not. She has diagnose with syringomyelia, synx & no tethered cord. A  decompression ops was done (same as what they do for Chiari). She was fine 3 weeks post ops then had a fever and vomited the next day. She was re-admitted, suspected of having meningitis. She was in terrible pain & was put on intravenous antibotics. The fever came down but the headache remained. The headache was better lying down but bad when sitting up. She was operated on again and "leakage" from the stitches mend. In the midst of recovering now. Thought I just share as I have also taken a lot from the forum.

Singapore

[ajdewitt]

I am having similar issues. I had my surgery 08/27 this year & experiencing most of the same problems. If it isn't pain radiating from my neck down through my back into my right shoulder it's a tingling sensation that lasts several minutes.
I've been in the er several times since the surgery & have yet another appointment with another neurosurgeon tomorrow. They keep telling me it's normal... but I feel like i'm almost in as much pain if not more since the surgery.

[selmaS]

  Hi.... I know ur DD has been thru a lot for someone so young, and been to many Drs, has she been to a Chiari specialist?

Was she checked for Ehlers-Danlos?...Did she have a CINE MRI?

Usually the decompression is done b4 a shunt, so this is y I am asking questions.

Both u and ur DD may want to join us in the Chiari forum here on MedHelp, as there r others in the same situation that may be able to offer insight and support. <3
http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc

[mrsgoode]

I'm not going to be able to offer you a solution, but your comments sound as if my own daughter wrote them.  She has Chiari & had a shunt implanted in her brain for the fluid build-up, but has only gotten worse since that operation, which was 3 years ago! Constant headache, turning into a full-blown migraine at least 3 days out of a week.  Never has an appetite, chronic sinus infections & fluid in her sinus cavities. Seen an ENT Spec., Allergists, neurologists, neurosurgeons (2 so far), pain specialists.  Her legs hurt, she can NEVER sleep, so our primary doc at least gives her sleeping pills. (This after an all-night sleep study at her neuro surgeons hospital, which had negative results.) This month alone, she has made 3 trips to the ER because the other docs can't help. She's only 21! Sometimes, in the ER, they treat her like a drug addict or like it's "all in her head" as if she's crazy! So I do feel for you and just hope that, at least knowing you are not alone may give you comfort. I don't know how my daughter can function on a daily basis--she can't ever find relief, except with the narcotics. She's a full-time college student, works a part-time job.  She has tried everything else.  She's afraid if she has the Chiari decompression, that it will only get worse. I wish I had a cure for all of you. we don't know what to do. :(

[selmaS]

  Hi as flickerrn mentioned POTS can be an issue that can be revealed post op as well as other issues that can develop post op....ICP is what I am thinking since u said u had 2 LP's to reduce CSF pressure.

I am sorry I did not see this b4 u went to the Dr how did the appoint go? I hope u will consider joining us on the Chiari forum here on MedHelp-
http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc

[flickerrn]

Postural Orthostatic Tachicardia Syndrome (POTS). I believe my son has it too. I have been desperately trying to figure out why he has those symptoms along with dehydration and low sodium. I just ran across an article by Dr. Bologenses, a nuerosurgeon in New York. We are hopefull to get a dx soon.

[Resa181]

I was diagnosed with Chiari I and was decompressed in 2005 by my neurosurgeon, Dr. Stephen Kiefer, Lexington, KY.  Dr. K did a wonderful job taking care of me and my symptoms were relieved for a couple of years.  Now they are slowly creeping back to where the headache is again my constand companion, my blood pressure is no longer under controll and I am taking 2 different types of medications, I can no longer sleep at night, the nausea is back all the time and I again losing weight and the numbness and tingling in my hands and feet is becomming very bothersome.  I had to quit working, but luckily I was able to retire.  But I am not going to be able to seek any kind of part time work to supplement my retirement to help with medical bills and I am having problems even doing my house work..  I have had 2 spinal taps since April to reduce the CSF pressure in hopes that would ease some of my pain/ headache/ tingling but it has not.  I go to the Dr. tomorrow and we are going to have a long talk.  Any Suggestions Anyone?  I did not want to have to file for Social Security Disability yet because I am only 58 years old.  I retired at the advise of my Family Doctor and my Neurologist and thought that a less stressful work environment would help - I had worked for the Federal Government for 30 years and I was hoping that I could obtain a part time job, but my health right now with these headaches are not going to allow me to even do that.  I were to the grocery store yesterday and was so sick when I came home that I had to go to bed - my head felt like somebody was hitting me in the back of my head with a ballbat and both of my hands were numb and tingling and I was so sick at my stomach!!!  I just dont understand.

[selmaS]

  The member u addressed ur reply to may no longer be an active member as the post is 2 yrs old.

As for the confusion, it is pretty typical as it is a major surgery and considered a trauma to the body, and the body will react in many ways....this is one of them. Losing hair is another....

Tell ur sister to continue to rest, to not overdo it even if she feels up to doing more as she can suffer a set back....rest , rest , and more rest : )

[hulagirl4737]

Hello,

my sister recently had the surgery and now keeps havign bouts of what she calls "confusion."  She syas its about 30 second episodes of total confusion about what is going on.  She's 6 weeks post ops and completely off of medications o it is not that.   Did you get any answers about the inability to make decisions?

[selmaS]

  Hi, it is possible for issues to resurface as it can be scar tissue or the tonsils have herniated to obstruct CSF again....once we have Chiari surgery does not make it go away, just helps with the progression and hopefully some of the symptoms.

Join us in the Chiari forum where we have a number of members that can offer insight and support.,http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

[klt_2008]

I am 19 yrs post op for my ACM decompression and I am having severe headaches now. My neck gets very stiff feeling and hurts so bad, my vision gets blurry, blood pressure sky rockets and oh... the nausea BUT everyone here wants to treat them like " Normal Miagrains" but they aren't.
Nothing but Narcotic pain medications helps and I am like you,
I TOO AM AT MY BREAKING POINT!
I AM NOT CRAZY... I AM NOT A DRUG ADDICT!!!
I NEED HELP!!!
I don't know what to do!
I have NO LIFE because of the debilitating headaches.
I have no insurance to be seen by a Neurosurgeon
and I am scared to death that something with the ACM has come back or something.
Any suggestions ???

[selmaS]

  Hi I saw u posted in the Chiari forum and I did reply to ur post there...just wanted to post here, that neone with chiari questions r invited to join the chiari forum here on MedHelp.

http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

[angeliz74]

I had surgery on 11/18/11 and I have not felt any relief after surger. I feel worse than prior to my surgery. I have a lot of pain from the right eye all the way to my back, I also have neck, shoulders, arms, and legs pain. I have severe pain on my neck, my vision is poor and I cant sleep from so much pain. I have problems with my focus and cant think very well, I cant drive for too long. Now my spine is bothering me to the point that I'm having trouble walking. I have not been able to return to work since I cannot even sit for more than an hour without getting severe pain.

I discuss this symptoms with my surgeon but said it was normal....I really feel so much pain that I feel I will go crazy from so much pain....I wish I had some relief but there is not a single day that goes by without pain.  so far Ive gone to a different neurosurgeon and said everything looks good with my surgery but I have worse symptoms than before surgery...Please can any one give me any other ideas of what to do next ???  

[selmaS]

  I invite the 2 of u to the Chiari forum here on MedHelp-

http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

[cdwcbj]

We have been struggling with a Chiari diagnosis from 4 years ago and the doctors are all telling me my daughter's symptoms are unrealted and yet they can find no other cause. May I ask what your daughter's symptoms were? We are also in NJ and do not have out of network benefits for the Chiari specialist centers but CHOP is covered. I'm anxious to see if Dr. Sutton would be a good option for us. Thank you so much. We are so frustrated. She is 17 and we are concerned that her symptoms will effect her college career.

[agfmgod]

HI,
I had Chiari Decompression surgery on April 5,2012. afterwards I had a severe headache that went from the front of my head to the back of my head. I stayed in the hospital for 8 days. I wouldn't let them release me because the pain was so bad. I decided to go home when my pain level was at about a 4-5. However, it didn't get better when I got home. When I went back the following week to get my suters removed they gave me an injection  in my occipital nerve area that wore off in a few hours. I am having a lot of neck spasms and I can't turn my head to far to the left or right.I am also experiencing a lot of nausea. My surgeons next step is to give me cervical injections to see if that helps. I wasn't expecting all of this discomfort. Will this eventually go away?