I want to explain my story in detail but I do not want to frighten those about to have surgery. I was wondering if anyone here has been diagnosed with intercranial hypertension after their decompression surgery? Im 6months post op and I would go back if I could. If enter a new building I get crushing headaches that will take me to my knees. If I am willing wait it out for about 20 minutes it will go away. I panic at the thought of leaving the house to go to work every morning. My doctor says he thinks im allergic to my dura patch but mainly he acts like im fos. I need relief and I ran across an article on intercranial hypertension and it sounds correct so I was hoping someone here had some experience.
I have Chronic IH. Have you had a Lumbar Puncture to check your CSF Pressure or a post op CINE MRI to make sure your surgery was successful? IH headaches feel like your head has hit a windshield doing 75 mph & pain meds do not help at all. The only thin that begins to work for me is IV Dilaudid because it knocks me out. IIH or IH or Chronic IH is horrible & mine just really started in May and I am 8 years post op.
I suffer with high pressure after my 3 surgeries . My latest CINE MRI has revealed no flow posterior at all so I’m waiting for more surgery. The headaches are horrendous and rant relieved by anything!! Do u feel constantly sick with yours?? Xx
I developed IIH after my surgery, it's got to be the most painful headache you can experience. And unfortunately seems like it never goes away. Mine developed so strongly/suddenly after my surgery that we originally thought I had a CSF leak, I couldn't even walk into the doctor's office. I take Diamox to keep the pressure down, but that comes with it's own side effects.
Nicole do you have EDS? CCI craniocervical instability is a condition seen in EDS that can mimic symptoms of Chiari, POTS, and Dysautonomia, and to a neurosurgeon who is not a true expert and well versed the related conditions they will miss it. All that to say that if you have CCI involvement and have decompression it can cause and usually causes the CCI to become more unstable making the symptoms worse or causing new symptoms. Also if you are an EDSers the surgery needs to be done differently.
My neurosurgeon doesn't have a clue. He is asking me what to do! I still have not had a CINE MRI at this point. Yesterday he said the steroids were hurting more than helping so he is weaning me off of them. I asked him about the hypertension and he was clueless. I am hopefully going to see a new neurosurgeon this month and I am going to ask about all of this. The POTS I can tell you has happened my entire life now that I read about it. I would have issues standing up, going to the bathroom or picking things up but everyone kept saying I had low blood sugar but tests never showed it. Those crashes were nothing like this. Its hard for me to tell what is a side effect of medicine or the headaches. My stomach feels bloated like a rock is in it so I cant eat but im so very hungry I want to cry. I stay thirsty to the point of desperation but even water makes me nauseas. I also have this constant pressure behind my ears and when I start to walk I can tell if im about to have an episode. I went into the drug store yesterday took about 10 steps and was to the floor with dizziness blurry vision pressure in my ears and that crushing pain in my head. I lay in the floor for a couple of minutes and this nice older couple sat with me till it passed and helped me up. Then of course they didn't have my meds so I had to go to another drug store which thankfully let me wait at the drive through so I didn't have to go in.
My doctor keeps saying my brain tumor isn't causing any of it but it is on the edge of the patch. He says he thinks it has been there a long time so shouldn't be a problem. When I was first diagnosed though no one even looked for a tumor or a cause. When I was eleven my mother tried to kill me with a baseball bat and crushed the base of my skull so I spent 18 months recovering from the entire deal and did have an infection in my brain as well as the rest of my body she crushed because I lay in a field for three days before anyone found me. He keeps telling me it has no coloration to this now. I think the tumor may have been there since I was a little girl but I don't know.
I cant thank you guys enough for your support and information! This is the only place I feel I am listened to. My moods are so random and I feel guilty because some days Im just so bitter watching the world live around me. I used to be a runner and now I have to walk slowly to go to the bathroom. I get so jealous watching my husband and daughter enjoying life and that makes me a horrible person. I used to spend my spare time volunteering working against human trafficking and I was alive and had purpose. Now I feel Im just a weight to my family.
I did have a lumbar puncture. Took him seven times to get it right and I was screaming in pain and he told me I needed to work on my threshold for pain. I was at an 18 which he said was normal. He took out enough to drop me to a 9 and I had to lay down for 6 straight days due to the headache. Then the following week he sent me to a radiologist who took 9cc's of the fluid that is in a sac under my patch between my neck and my skull. He said it was blood and so forth from the surgery but the radiologist said it was clear as water and fresh csf fluid. My doctor still denies it and says my body should eventually absorb it but you can see the pocket and a bulge in my neck on the MRI's.
Sounds like maybe you need a vp shunt. I had my decompression in May and by August they had to put a vp shunt in. Shunts come with their own set of problems, but believe me, they also make a world of difference. Tell your doctor you need an MRI to check for hydrocephalus.
man reading these stories make me think my pain is nothing. I feel like I am over reacting now. Nicole I had that kind of pain when I had a CSF Leak. That was the worst pain in the world so I can feel you on that. What state do you live in. I live in Florida my surgen's name is Dr. Trumble he is the best. He mostly works on kids but he will take a few Chiari case a year. You should check him out if you live close. I hope you feel better. I just know when I had my CSF Leak it sucked but I was lucky that it ended up pushing threw my stiches and they had to go in and do another surgery to fix it. To me it sounds like he dose not want to cut you open to fix your CSF Leak. I ended have some more leaks after 2 surgery but they where able to heal with drugs but being on for so long on steroids gave me a condition that effects brain presser. I hope you feel better I can't tell you it will be better but I know that I am a lot better then I was before. I am still sick and have quite a bit of pain but I was really sick before and I am grateful that I had my surgeries.
Twice I have had 10 LP's trying to get a sample & both pressure readings and they can't. A Radiologist recently told me my Lumbar Spine vertebrae is too close together & they have to be done under radiology. Please do not let them poke around trying to get a LP. It hurts and is dangerous. Nicole Bowen said:
Tracy,
I did have a lumbar puncture. Took him seven times to get it right and I was screaming in pain and he told me I needed to work on my threshold for pain. I was at an 18 which he said was normal. He took out enough to drop me to a 9 and I had to lay down for 6 straight days due to the headache. Then the following week he sent me to a radiologist who took 9cc's of the fluid that is in a sac under my patch between my neck and my skull. He said it was blood and so forth from the surgery but the radiologist said it was clear as water and fresh csf fluid. My doctor still denies it and says my body should eventually absorb it but you can see the pocket and a bulge in my neck on the MRI's.