suboccipital decompression with tonsillar resection duraplasty, and cranioplasty

[Djoslyn]

I just want to know how long can you go without a plate.  Mine was removed after my surgery cuz my body rejected it

[Juice74]

Where did you have a plate? I've never heard of that.

[Djoslyn]

Covering the back of my head where they went in to  .scrap some of my cerebellum and something about tonsils in formen  .my spinal fluid was almost blocked I was told.. now they say they can't even let me know if the surgery turned out because I have a pacemaker defibrillator and can't have an MRI by Cat Scan they can't tell they did a myelogram to see what the thing was but he said he didn't want to do another mammogram

[Djoslyn]

Sorry misspelled.. but please find out let me know as soon as you can because they won't even return my call now because they say I owe the hospital there a lot of money I don't owe the hospital they gave me financial assistance it's in one state and I live in another social security expedited my hearing I'm going to have my hearing and September but I hope I make it till then I've wrecked my car off all I get dizzy someone please help to let me know and I need a second opinion if I can find someone. I do have all my records all my surgery papers all my CDs of my last CTS I'm planning on going to the ER here at home again today I have not had pain medicine since February when I go to the ER or is here they don't even call my surgeon can someone please tell me what when I go to the ER or is here they don't even call my surgeon can someone please tell me what to

[selmaS]

Hi and welcome to the Chiari forum.

Was it a titanium mesh plate? I know a few Drs use those when they do the decompression surgery....BUT if you have Ehlers-Danlos and are not DX'd before your body could reject any foreign matter they place and to help you get better it must be removed.

I had decompression surgery and did not get a plate....not everyone does....so how long you can go depends on why you feel you need the plate? I also know a few had to have the plate removed since the screws were coming loose inside and causing issues.so the plate has not had a good go with Chiarians.

Do you know if you have EDS or it was ruled out? How long since your surgery to remove it? Did they tell you what they replaced it with....typically a patch, could be bovine, cadaver, synthetic or your own tissue transplanted from another area.

You need to get a copy of the OR report to see just what they did do....and find a Chiari specialist that can help you sort it all out with

[Djoslyn]

I removed it September 24th 2017 I think all I have out there now since she told my daughter the only thing cover is like a skin flap but the whole seems to have gotten bigger. That's also what I'm trying to do how can I find out if another doctor will look at them my papers and my scans for second opinion I can't even get the Doctor Who did my surgery to call me back or anything suggestions

[selmaS]

You should be able to contact the  hospital/facility that did the surgery and request copies of the OR report as well as the video if one was done......the Dr would most likely charge you, but the hospital should give  it to you.....this will help another Dr know just what was done,

How did you remove it yourself? Was it not under your skin?
I am confused as to what happened.

[Djoslyn]

I had suboccipital decompression with tonsillar resection duraplasty, and cranioplasty in August 30.2017 .. on September 21, 2017 had to have another to remove the plate that they put to replace I guess the skull they took out to do the decompression surgery  because of infection ( they claimed my body rejected it) the late time I was face to face with my surgery was. In December 2017 her told me and my sister I could not go much longer without the plate .. got set up for a 3D catscan  on February 26, 2018. Was supposed to go for an appointment with the Dr to discuss the  surgery of having it put in. They called the before my appointment which was scheduled for March 6th and told me that I wasn't going to be able to see the Dr because I owed too much money. But they I didn't have insurance before any surgery was performed and ever then I haven't been able to make contact with my Dr ..the receptionist even told me I couldn't pay out if pocket for just a consult visit. They have given me excuse after excuse finally I got Social Security to expedite me and my hearing he wrote a letter to them claiming that he could not do my surgery it was pending because of we have an outstanding balance with a hospital in Little Rock which was a lie I have no outstanding balance they gave me financial assistance the doctor's office turn me over to a collection which means I don't even know them anymore. I'm confused and afraid I still have no plate the back of my head has changed form and I can't get no one here in the ER or anything to understand I can't get them to call me they won't even call it I need advice on who to contact to get a second opinion or call him to see what's going on look at my bed all my surgery papers summaries about all my CDs that's been done I need someone to look at it to tell me if I'm okay or is it that they just can't fix me all just want the truth. I know there's no cure for Chiari but I just want to know why he said I couldn't go much longer without a plane and now they won't even talk to me after my cousin paid for the 3D scan to have a playmate this man cut my head open twice it is hurting my relationship I don't have a job I may qualify for disability but I got to wait on that money a boyfriend wants me to move I have nowhere to go I just need to know what to do where to go to have someone read this stuff to let me know what to do even if I get my disability he's got to be held responsible to finish my surgery or is it a suit I can do if I can't walk around the rest of my life with a hole in my head supposedly I have nothing covering it's like a baby's soft spot. Believe me I know this is confusing I just need help someone to help me figure it out my daughter has moved I get confused and my boyfriend don't want to know anything about this he thinks I'm making it all up..please help Beaver someone has to talk to their doctor and explain to her I just want a second opinion or tell my somebody tell me what do..I've wrecked my car c o think because of tnew symptoms happening...I have no one to turn to. I went to the ER here at home tonight cuz my insurance told me to get checked out the ones that I was crazy still did not contact the surgeon and told me I needed to go back to them and find out play my skins for the same but my head don't feel the same it's changing form and I'm telling you I blackout I lose I just lose where I'm at

[selmaS]

Ok...so I think I am following your journey now.
I am not sure how large an area you have that a plate is required.....but if you rejected the first one, most likely you will reject the next. I know they can use muscle and tissue to help close the opening. Since your body rejected the plate, your own tissue would be best in lieu  of some other type of patch.

We do have a list of Drs for your area, please PM ( Private message) me concerning the Drs name on our list, if one is your Dr refusing to care for you , I would like to remove it from our list. Please do not say here on the public forum.

[Djoslyn]

Send me the list of doctors and then I will let you know if he's on there cuz I'm not sure who I'm talking to or if anybody can send me a doctor's name and let me meet up with them or something before. Find the list of doctors I'll be honest I will let you know in my doctors on there