I am at my wits end with all of these doctors and their different diagnoses. I was decompressed 12/02/11 and my symptoms returned within a few months. Had a cine MRI and the flow "looked good." The NS was a little concerned about small ventricles, but said to try seeing an NL for migraines and maybe medication would relieve symptoms. I have been through so many meds and NOTHING is helping! The headaches are terrible and I still haven't found anything that helps. Then a neuroradiologist was concerned about a psuedomeningocele, but the NS said that there wasn't one, then my NL said that the NS was "watching" me because of this. Seriously!?!? UGH! See what I am dealing with. The one thing that really gets me....is when I had an LP, it relieved my symptoms for about a week. I felt like a million bucks! (OH YEAH...and that NL never measured the pressure when he did the spinal tap, are you flipping kidding me??? I let him go a while ago and moved on to a new NL.) That would lead me to believe, among other things that maybe it's IIH. I know what I am experiencing, I just want to hear from someone who has been diagnosed with PTC/IIH. What are your symptoms? How did they diagnose you?
Oh and does anyone have any idea how you can be misdiagnosed with a psuedomeningocele?
The one big difference between Chiari and pseudotumor cerebri is that with PTC your optic nerves are swollen. I know because EVERY doctor I've seen has questioned whether I had PTC vs. Chiari. You'll need to schedule an appointment with an ophthalmologist - they dilate your eyes and it's just like a normal eye appointment.
That's the other thing that bothers me! With the headaches and sometimes without, my eyes hurt so bad. It isn't the same feeling as a migraine, it feels like someone is pushing down on the nerves, muscles etc in my eyes. I can't move them without feeling like I'm going to tear them out. I had an eye appt right before the Chiari dx. They did not see any swelling in the optic discs. I was just told today to get back to the opthamologist and get them dialated. My NL wants them checked for glaucoma. Good greif....I am 35. Lol. I am just sick of this roller coaster, ready for the problems to stop and to be done with all these appts. UGH!
Thank you! I have seen these. I was looking for personal experiences. I was diagnosed with the psuedomeningocele by my last NS, some time ago, it was sort of left up in the air about what to do. I had another MRI and the neuroradiologist said that it had grown in size. Then the new NS says that it isn't a psuedomenigocele. You got me! I have no idea what the heck is going on anymore. It is so frustrating! Mandy said:
Hi Nicole,
Here are a couple of links regarding PTC/IIH, you might have already seen them.
I had IIH Pre Surgical CM. It was horrendous. I actually had a Member call me at 1 am on night last week because she has a CSL Leak through her nose and knew I had had IHH and a CSF Leak through my mouth. They couldn't get a correct CSF Pressure Level on her because she also has Kidney disease and her medication was raising her BP. We spent hours researching medications that increase BP. I did tell her that with IIH your headache NEVER goes away. Medications do not work and it feels like you have had your face and head slammed into a windshield at 55 mph. Some people think they have IIH when it is actually Occipital Neuralgia, which can be debilitating, but treatable. Do your headaches and eye pain reduce in the morning or when the barometer isn't dropping? Does the pain stay constant or get worse? IIH is constant. I didn't get any relief until the CSF Blockage was repaired. Now I have Occipital Headaches which no one should have but livable. I really hope you feel better. You have been through so much and I am so sorry.
I have IIH and Chiari, the question for me has always been which came fist ! is one a cause of the other? my miracle was to find a NS and a Neuroradiologist who work together on my case! I do have swelling of my optic nerve and good flow of CSF so they are leaning toward the IIH causing a worsening of my Chiari 2mm in 2 yrs. Topamax still hasent touched my headaches so on the 14th i am getting a stent!!!! I am optimistically hopeful that this procedure with help. I know your frustrations and pain i feel them everyday. I have a 2 year old son who deserves 100% of me not 50% with a headache and I will stop at nothing to get to 100% i have lost 26 lbs since diagnosis in march by eating a gluten free. dairy free. anti inflammatory diet i have started doing allot of art projects to help relieve stresses , i find drinking coffee all day long is the only thing that helps my headaches , and i HAVE to wear sun glasses as light makes my headaches much worse.
If i can help with any information about IIH of stents let me know. I hope I can be a success story to help others in the future!!!
I have IIH and Chiari, the question for me has always been which came fist ! is one a cause of the other? my miracle was to find a NS and a Neuroradiologist who work together on my case! I do have swelling of my optic nerve and good flow of CSF so they are leaning toward the IIH causing a worsening of my Chiari 2mm in 2 yrs. Topamax still hasent touched my headaches so on the 14th i am getting a stent!!! I am optimistically hopeful that this procedure with help. I know your frustrations and pain i feel them everyday. I have a 2 year old son who deserves 100% of me not 50% with a headache and I will stop at nothing to get to 100% i have lost 26 lbs since diagnosis in march by eating a gluten free. dairy free. anti inflammatory diet i have started doing allot of art projects to help relieve stresses , i find drinking coffee all day long is the only thing that helps my headaches , and i HAVE to wear sun glasses as light makes my headaches much worse.
If i can help with any information about IIH of stents let me know. I hope I can be a success story to help others in the future!!!
Beeba,I really don’t have anything to add to what has already been said,except to agree that there ought to be more communication between Dr.s I actually went back to my NL to fill him in on my progress after the decompression,that he said I didn’t need.My question to him was why there was’nt more comparing notes so the Specialist and the NSs can learn from each other,I think that he was insulted that I had come back to him at all.The only thing I would like to do is help other patients that was why I wanted him to know that I did have chiari but he said he still felt I should not have had surgery,no matter how many symptoms and no matter how much suffering.This man told me if he had chiari he’d go to Dr.Rosner,my surgeon,to have surgery,I know that he would not go through what I’ve gone through if there was a chance he could be helped,he would no longer care how large the herniation was he’d know that people are hurting and too many NS& NLs are looking at this thing all wrong.I sure wish that there could be a movement by patients who have suffered for years because NSs so much of the time will not listen to the few specialist that do know how to diagnose chiari.If you hear there are another crazed person who has a few NS,MDs,NLs,held captive here in N.C.that might be me!!!Ha Ha…
I've addressed these issues elsewhere in the forums but will repeat my "simple" view of IIH and Chiari. The required procedure to diagnose IIH is an LP. If you have an opening pressure >25cm water, you have IIH(this is based on the asusmption that you ahve already had MRIs to rule out a real tumor). Pseudotumor is really terminology from the pre-MRI era(although many of us still use it). Medical management(Diamox, Lasix, steroids, even serial LPs) is appropriate as a first step. Should all medical management fail, you discuss alternative treatment options. If head-aches are the primary symptom, consideration of a shunt(LP or VP) is appropriate. If vision loss is present, optic nerve sheath fenestration can be performed(but will not affect the head-aches). Most neurosurgeons avoid patients with IIH because it is a difficult disease, that is difficult to treat. Shunts have a higher failure rate in this patient population(primarily for anatomical reasons, i.e. the target is smaller since the ventricles are normal in size).
Now add Chiari on top and you muddy the waters further. Yes, it can be a chicken and the egg question(is the Chiari blocking CSF flow and elevating ICP or is the elevated ICP pushing the cerebellar tonsils down and causing the Chiari). For me, I base the treatment options on the LP results. If the LP confirms a high opneing pressure, there must be enough communication to elevate lumbar pressure as well(what you are really measuring with an LP). Therefore, you place a ventriculo-peritoneal shunt, knowing that the failure rate will be as high as 50%, meaning you'll need to go back and fix it in the future, sometimes the enar future(days or months). By creating normal ICP, you can effectively reverse the pressure issues and pull the cerebellar tonsils back into normal position(conversely, an LP shunt in that setting can pull the tonsils further down).
As has been repeated on this forum, getting someone familiar with the diagnosis makes all the difference.
I have to say I'm stumped on the pseudomeningocele comments. An MRI is the diagnostic test of choice. If there is still fluid posterior to the dura at the surgical site >3 months after the operation(prior to that, you could potentially argue it is blood or post-operative products), you have a pseudomeningocele. This is a yes/no MRI findings(not a maybe). If you think you have a pseudomeningocele(and the radiologist is reading it as such), you need to have a neurosurgeon look at it. If the first neurosurgeon isn't helpful, see another. If you get the same answer from a few, you may just need to accept the answer. remember, it is always easier for a surgeon to work on their own results(they know where they cut, where they sewed, any implants used better than anyone reading an opreative note ever will) but it is often more difficult for a surgeon to admit a complication(which a pseudomeningocele is, even though it is common-up to 10% of intra-dural Chiari decompressions).
I hope I expressed myself well enough. The decision tree is not that difficult(but getting going down the correct pathway may be).
Thanks for everyone's replies. I am just so sick of dealing with all of this. I was decompressed with the hopes of gaining a "normal" life. It has been far from it. I had switched doctors 8 months ago, to a good hospital with a dr that really is good with Chiari etc, but I am still having issues. I had an MRI yesterday, so I am waiting for the results of that. Something has got to give.
Someone asked if I had headaches all the time. No, I do not. I feel like I am on the verge of a headaches every minute of every day. My brain feels like it is on fire, like a burning feeling. It doesn't take much to set off a headache though. They are worse when I am laying down, my eyes hurt and the pressure is inpossible to deal with. I was told I had ON after surgery, but now my symptoms don't "match up." I was also told that I had TN before surgery and that I still have that. They just started wondering if I have Mastoiditis, I find that funny because I have had ear pain since this started and it had been ruled out before. Who the hell knows what is wrong, doctors don't seem to be ON TOP of it and I struggle all the time. I gaurantee you, if they were living my life, they would have found an answer by now.
Thanks to Dr.Trumble for his evaluation,it is sure great to see concern.Sometimes we get so many opinions that all it seems to be more confusion than help.My journey has been along one,27yrs!!as of now I’ve not talked to anyone who has been this long for a diagnosis.My chiari would have never been found by the NSs here in N.C.but after finding Dr. Rosner,one of the best chiari surgeons any where.I would have been able to find him so much sooner if the NSs here believed in what he is doing,there’s a lot anger toward them for not trying to understand his expertise.I went back to my last NS to explain to him that I did have chiari and am so much improved,he seemed to be offended,it seems,he had rather think he is right than to hear me.If you are being passed from one to another without help you need to travel to a chiari specialist.I did not present hardly anything on the mris,but because Dr. Rosner looks at symptoms,tilt table test,which I failed,that is a sign of chiari,he does things so different than the others,swallowing,my gag reflex was absent,after the decompression,things are so much better.This has been a long nightmare that didn’t need to happen.I feel that so many people can be helped if we can get our NSs to open their minds to the fact there doesn’t have to be a large herniation for the symptoms to be devasting.I am proof of that,when the surgery was done even without a well represented herniaion,it was worse than exspected.Dr. Rosner listened to me and knew what was needed,my brain stem was very compressed and all was much worse than could be seen on mris.I know I have beat the odds because I never gave up and did my own research and was pretty sure that chiari was the correct diagnosis.Thanks to a great specialist my life has changed,if at all possiable find a NS that is a chiari Dr.