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1570846 tn?1295829627

surgery

has any of us gone down hill after surgery instead of getting better?

I got relief for abpout two weeks and still going down hill and i was decompressed in feb 2011
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1570846 tn?1295829627
i have numbness in my arm and leg and burning.  my neck and shoulders of course all the time and the side of my face. all i know is they removed a piece of skull bone and my top vertabrate so i dont know technical names sorry i was out of it..
I am so excited i see him the normal dr on tuesday i have to see what all the bad things on my blood tests were but then i can get my referall to the new dr. and yes girls he is experienced with chiari and syng. i spoke to him and a couple nurses
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Avatar universal
I can't understand why your NS did not check you for a syrinx before surgery but since he didn't and the ER doc also suspects it, push hard for MRI's of your entire spine or at the very least your cervical region because that is the most likely place for a Chiari related syrinx to develop. You also need to push for the CINE MRI we mentioned earlier because that will tell everyone how much blockage you have and finally give you some answers about your pain and symptoms.

Do you know if they did a duraplasty  or laminectomy when you were decompressed?

I know it is hard not to look back and second guess yourself because I do the same thing but at this point try to focus on what you can do to get the best help out there and get to the root of your trouble. It sure sounds like this ER doc is committed and interested in helping you and that is great.

I agree that it is a good idea to print out some in for about Chiari and syringmyelia and take it with you to your appt. Because I have both conditions, I can steer you to the same articles I gave to my doctors. Feel free to send me a message and I'll write back with the info.

Do you have any numbness and burning in your hands and or legs because this is a Very common indicator of a syrinx?

I really hope you are able to get some help with your kids and get some relief from all your pain.



Jen
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620923 tn?1452915648
COMMUNITY LEADER

  DO not look back at y u selected this Dr..or what his experience was or is...move forward and find a NS that can help u with the issues at hand.

I am sure it was not ur judgement as much as what u wanted to hear that swayed u to  ur decision...so, what u need to do is find a NS that is well experienced with chiari and can file the reasons u need to be seen with ur insurance citing what was missed or being missed at this point in ur recovery.

  Does this new Dr know about chiari and syringomyelia? If not the more printed material u take to the appointment may help.

    "selma"
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1570846 tn?1295829627
no they never tested before surgery jsut did mri confirmed Chiari and decompressed. i am hoping to soon find someone to take my children i had some bad abnormal tests come back on my blood scan as i was hospitalized last week and the er dr personally called and told me to see someone immediately or come back to him in the er. my ALT,AST,ALK are very very very out of range is what he said. today all my sypmtoms are back plus more. my lower right side is killing me so bad i can hardly sit and i have this odd crazy jumpy feeling in my left arm i couldnt even sleep last night it was so dang bad lol. and lately i dont know what the deal is i feel like i have bugs or something all over me im going insane.
my symptoms are the horrible headaches and the pain in the shoulders and my left side is very weak. my brain is so lost all the time my hands dont work like i want them to im dizzy and the blackouts and the feeling like im falling all the time and my legs and arms give out. the ear ringing and swooshing is driving me insane im tempted to sleep with headphones or something to drown it out. the pain is insane and my neuro said im healed im arguing with my insurance to see a new neuro that has more experience i was so shure he was gonna be a good dr. but i guess i was wrong. my judgement is not very good anymore. he knew so much and said everything i wanted to hear. he said 1 in 2 people benefit from the surgery.. well im cured supposedly and where this cure comes in i would love to be cured but i know its not the answer. the er dr told me he was like 99% sure i had a syrnix and my neuro fought everything he wasnted to run
im scared i see a new dr tuesday i changed my primary because they weer the ones not allowing me to see a new neuro. and this guy is the one i seen in the er., hope it all works out i hurt so bad and the pain is never ending and just getting worse by the day
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620923 tn?1452915648
COMMUNITY LEADER

  It is very possible that it is a syrinx...didn't u get tested for them b4 surgery tho?

     "semla"
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1759188 tn?1324678308
  i had surgery 4 yrs ago, i dont feel any better.  finding this site and reading everyones questions and answers has helped me alot mentally
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Avatar universal
Boy, you sure do have symptoms that are consistent with a syrinx but I am not a doctor!

Before you had your surgery, what kind of tests did you have in the diagnostic process? Did you have a cervical MRI and MRIs of the rest of your spine? Did you have a CINE MRI to determine if your spinal fluid flow and pressure was normal?

What is your NS saying about all these symptoms? I am wondering why he or she is not seeing you to rule out post op complications. I am confident that my NS would tell me to get in ASAP for testing if I presented what you are experiencing.

I hope you get some answers soon...
Jen
Helpful - 0
1570846 tn?1295829627
i dont think i do to much.. i do things until body says STOP.. the er dr was amazing he had more knowledge adn he said chiari is a passion of his. he said if he had to guess he would bet 90% that i have a syrnix. they gave me all inds of meds sent me for mri no less then 5 mins in and i had a reaction to one of the meds they gave me so took me back to my room stabalized me and then kept me for 4 days no answers not tests jsut tons of pain meds and sent me home like nothing was wrong i was in more pain then the day i got there and in more pain now then before. my head has a 1000 pound weight on it i had horrible left side troubles as to the point i was in  a wheelchair.. and im on the way back to that now. i am falling again and my leg and arm on left side are giving out again and the left side of my head is back to the tingly but noow more pain and burning then its ever been so idk anymore
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

   Hi...there have been a few members that have gone downhill post op....and  there is no way to know b4 surgery who will...but, there r some conditions that will develop for no reason, and some that do by the way surgery was performed and the others is how the persons body reacted to meds or the surgery overall.

  Someone could develop a CSF leak, meningitis, reject the dura patch,develop ICP, seizures, epilepsy.

I have to ask what do u do daily?...I am finding some r doing too much too soon post op and this is y they do not feel well,

Plus it is normal to have symptoms return during the healing process, which can take up to 2 yrs.

Take it slow and no not over do things.

   "selma"
Helpful - 0
Avatar universal
Hi Jenny,
For me, surgery hopefully stopped the progression of nerve damage and definitely restored normal spinal fluid flow. However, since my decompression last year I have developed more symptoms because of the nerve damage caused before the surgery. These have stabilized but are likely permanent.

Do you have a syrinx or other complicating conditions? In what ways are you worse? There is a great patient handbook on the ****.org website that you and your Mom might find very helpful. It explains everything about the condition, and surgery etc.

You are still  healing from very major surgery so be careful!  

Jen
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