chiari Malformation

[ninigrli]

i just recently joined this site and wished I had found it before i had surgery because i would not have had surgery.
i had very limited symptoms prior to surgery. Now come to think of it, i don't think the symptoms where related to the chiari because i had no improvement after surgery. A CINE MRI was done prior to surgery which showed CSF obstruction  and I was told I needed surgery or do nothing. I had surgery at John Hopkins and 6 months after, I'm experiencing strange and crazy symptoms including serve headaches. Now i wonder if I would have been ok if I didn't have surgery.

[ninigrli]

Thank You SelmaS.

[selmaS]

  Fantastic,Dr Oro is a great person to see and I am sure will be of help to u.....

We have had a few people that have had more then one surgery, I will ask one to talk with u.....
  If u do not hear from neone please let me know.

[ninigrli]

Thank you SelmaS. Haven't had any luck speaking to my NS so I sent my information to The Chiari Care Center in Colorodo. Got a call so will b heading there not sure when. Just so scared that I might need another surgery because if everything was fine from the surgical note then they will not need to see me especially coming from out of State  . Has anyone had d surgery twice and like to share their experience?  

[selmaS]

  ICP- is intracranial hypertension....excess CSF that builds up and creates pressure....

POTS-Postural orthostatic tachycardia syndrome  is a condition of dysautonomia,to be more specific orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively. People with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many also experience symptoms when stationary or even while lying down.

[ninigrli]

Thank you SelmaS.
What is ICP/POTS
I believe I had a Bovi Patch. I'll look at my medical records.

[selmaS]

  I am so sorry u r having these issues post op, it is possible that u r one that developed ICP, or POTS post op...it can happen.

The other thing u will want to know is what type of patch u had placed as that can cause issues too....especially if u have Ehlers-Danlos which is unDX'd.

Yes I had the lamenectomy of C1 and C2, a dura plasty with them harvesting tissue from my scalp for my patch.

[ninigrli]

Thank u all for responding.
@ sharonkaye1987: I had arm pain and weakness prior to surgery. Neck MRI was ordered to check for dics.  The Chiari was found by accident and was 7mm. NS did not think arm pain had anything to do with the Chiari but decided to do a CINE MRI which showed 9mm and obstrution. I didn't know what type of questions to ask. I was told by NS that once surgery was done all symptoms related to surgery would go away as flow is resttored. I was told about the normal risk to surgery like infection, loss of blood but never told abt post op. I did my research prior to surgery or so I thought until I started having serve headach which does not go away with over the counter meds and has taken me to the hospital. Strange sensattion on my face, worm like movements in my head, burning feeling/sensation in my head I can't even explain it. O! Did I mention nausea feeling worst with headache, feeling like my legs r sleeping, buzzi feeling in my ear and the list goes on. SelmaS iss rightt that finding the right Doc is key. Dr John Oro @ The Chiari Care Center I heard is very good.

@SelmaS: I was told the NS is a specialist in Chiari but now I question. NS did not rule out otther related condition. I listed all the symptoms I didn't have but have now after surgery above. I also wonder what is the right of bone to remove. The CINE MRI prior to surgery does say crowding of the cerebelar and absence of appreciable CSF flow.

I had bone taken out, C1 laminectomy, dural patch and cranioplasty. Did u have all that done. Am glad u r happy u made the decision to have surgery. I justt feel like I shouldn't be having new symptoms and I was not truely informed abtt the surgery by NS.

Now I continue to search for answers to not only old symptoms but new onces.

Thanks to you all who responded. This is a great website.  

[selmaS]

Hi,,.,,,we do have a list of Drs for u to use to research them and find the right one, all the Drs on this list were seen by a member here....the list is not a referral nor an endorsement....

There are Drs out there that do know and understand Chiari....

Take a deep breath and remember to exhale....u will find a Dr to help her....not all Drs or NS's are informed on Chiari or well experienced....so it is best to go to a true Chiari specialist...some will review her MRI's b4 u go to see if they feel she is someone they can offer some help.....make copies of her MRI's and reports and find a few NS's to forward her info to....

[Nennie829]

my daughter has mild cerebral palsy, they told me her MRI were destroyed that showed she had it in 94 I did retrieve them and she was born in 92. umm the MRI showed a sagittal view of one centimeter. we have been given the runaround and the best state best doctors I feel like they're all covering up because they don't want to operate on her she has lost 10 pounds in the last month. we had a seated MRI which showed to centimeters because the one radiologist said looking at all her films when her head is laying fat flat she keeps it a little erect so it disappears so he was the one that recommended a seat at 1. so August 2010 she grew a mass fluid above her sacrum and it has ranged into centimeters to 10 centimeters Doering seaeted positions. and then after the master. A month later she fell off a one-step and broke her hip. her weight it that time with 102 now she's 21 years old she is very medically fragile she recently in the last month lost 10 more pounds so she weighs 75 now so I go to the Nooner surgeon today with the written findings with the seat it written findings that showed 2 centimeters. I was told that her MRI from 94 were destroyed and which it showed one centimeter at 21 month old so I had those as well with me today and this doctor didn't even look at ur didn't examine her and said it went away and I said well I've been told by the Arnold Chiari foundation it does not go away and also we just recently found out she has spina bifida occulta some pretty sure they go hand in hand I am ready to scream she has every symptom I feel like she's dying before my eyes and all the nurse surgeon in Maryland are sticking together, I was even able to call Yvette naryan because of certain dog gets Arnold Chiari malformation as well and they would have taken my dog the same night but I guess because she's disabled they don't think she's worthy to be saved so I say to him she can't feel from her waist down she has severe bladder spasms can barely walk her feet have shrunk she has a sending spinal cord. and the reason we had a seated MRI is because one of the radiologist said that when she lays flat she holds her head here act so it disappears and that correct position so the seat it one showed it although the see that one in a doctor ordered frontal lobe headaches instead of a second opinion for the seated MRI so when I told that Dr that did the seated MRI a month or so ago you were supposed to be checking for Arnold scary would you like to see the ones I pulled from the archives and she said no and they called a week later and didn't addendum she wrote a report to centimeters now but the doctor chose to look at that and it was a sagittal view and again they were looking for Arnold Carey so I don't know if she has different films or what I don't think that she just made it up to centimeters so she's down to 75 pounds she was just hospitalized for 10 pounds in one month she lost and she has a sinus tachycardia as well so she's on varapmil for her fast heart rate. my fear is nobody wants to operate on her because she has cerebral palsy
and I feel like they're all sticking together to not do the surgery so my question is does it go away and what are the worsening symptoms and also we just found out she has spina bifida occulta with them we found all this out the last year please help that's all she says is please help I have a youtube channel as well
deneen Ziegler829 I'm posting every think because I'm sick of it they lie and cover up and everybody all the doctors believe what the doctors right they don't even look at her they didn't even do any testing on her today and we also have a Google have a Google Plus please help me I'm wore out its been to get two decades of Lies

[selmaS]

  Hi and welcome to the Chiari forum,

The biggest issue post op is so many do not know having symptoms return as u heal is normal....and they should not be as bad as prior ro surgery and should not last as long either....

Did ur Drs rule out related conditions b4 surgery?....and what do u have now u did not have b4?

There are other issues some are not told, and this depends if u were seen by a true Chiari specialist or a NS that treats Chiari. A true Chiari specialist will rule out ALL related conditions b4 surgery....tethered cord, ICP, POTS, sleep apnea, ehlers-danlos, syringomyelia (in all areas of the spine) and CSF obstruction and overcrowding( retroflexed odontoid).

Some of us do respond to surgery with more issues post op, some develop seizures, some ICP, or POTS....there is no way to know who will or won't have these issues develop post op....does that mean do not have surgery?....NO as it can just mean ur Chiari was covering this underlying issue all along....and if u have a severe obstruction of CSF u will only get worse without surgery....those that do not feel they have symptoms may be surprised to just how many they do have but consider them "normal" as they have always experienced them.

Chiari is life altering, and it does take time to heal...we can not rush back to our old life expecting to go on and get it all back....sometimes we head down a different path....but, it can be a rewarding new path....

I had surgery 4 yrs ago and am so glad I had it...and am doing better with each passing yr....I do have other related conditions that slow my healing, and cause some symptoms to continue...But, I know I slowed progression and restored CSF flow...main reason for surgery.....

@sharonkaye1987
It is normal to be scared, finding the right Dr is key and that will take some of the fright away....but it is scary, but knowing u r not alone can help : )

[sharonkaye1987]

I know you are going through alot with this but can you be a little more descriptive, I was diagnosed almost a month ago and have already seen two NS one that was so rude I wouldnt go back if my tosils were hanging from my ears but the other that was very profesional, knowledgable and immediately ordered a CSF flow study. I am considering the surgery if needed. but I have 5 kids a hubby and 2 grandbabies that i really enjoy spending time with. MY NS was very forth coming about the % of those that do not see results or immediate results, I guess I just dont want to go through it for nada or more pain. I am scared.