Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I know I have been absent on DS for a long time now...and for my oldest DS friends...I have missed you. I was once here daily, several times daily, trying to offer all the informatiin I learned about IH, what I learned works and what doesn't. I discussed the myths vs.the facts, but mostly, it was my intention to offer hope to those who needed it. That all began in March of 2009 and lasted for several years. As some of you know, I was allergic to sulfa meds so no go...then in an 8 month period I endured close to 20 therapeutic LP's only to find my pressures returned within 24-48 hours. We always knew I had secondary IH with rare papilledema, but horrific daily debilitating head pain. So even though I live in Rochester, NY....I had VP shunt placement in Ohio at OSU Medical center where research is done on IH. Still the shunt doesn't work properly and after finally seeing a rheumatologist who diagnosed me with Sharp's syndrome or Mixed Connective Tissue Disease...whuch basically means I have a combo of rheumatic diseases or potential for multiple rheumatic diseases including Rheumatoid Arthritis, SLE (Lupus) and/or Sjogren's syndrome AND I have Fibromyalgia. According to NY State law, if a NS from out of state did your shunt surgery than you must see that same NS for follow up care due to liability concerns. So my care fell on my PCP's lap who was told to just control my pain. So he placed me on Dilaudid and a Fentanyl patch with a written care protocol for my care should I end up in the ER. Then last year, unexpetantly my PCP passed away. The ER threw out his protocol and the nurses began gossiping about how there was nothing wrong with me because my MRI's were normal and told me I was a drug seeker who didn't know what 10 out of 10 pain was. A new PCP took over the practice...his first practice....wrote me down as having hydrocephalus! The first visit he cut my Dilaudid use in half....no weaning down. Then, after not having a period for five months my gyno placed me on Progesterone...everyday I got left sided chest pain which worsened until it was down my arm. The nurse sent us to the ER for an EKG...the doc didn't know what IH was...my EKG was normal and when we left the diagnosis was somatization disorder/conversion disorder or in other words hysteria. The next morning my PCP called 1st thing and called me a drug addict-even though I saw him every 30 days and never abused my meds). Then I went to my gyno doc who proclaimed I wasn't crazy...progesterone can cause chest pain, blood clots, stroke or heart attack. My Rheumatologist prescribed a new drug, after taking it I lost memory of huge periods of time, slept 2 days straight and all I remember from those days was waking up with SEVERE nerve pain in my right thigh both days...same spot, lasting approx.30 seconds but causing me to scream out. The 3rd day I showered and my left thigh was burning and numb and I had a rash down my left sude. I finally fell asleep, but when my hubby went to wake me @ 11a.m. the next day, my speech was slurred, I was paralyzed, I didn't have any concept of time, know my name or the date and my BP was higher than ever. I had taken myself off Dilaudid after being accused of being an addict, but they said that wasn't rhe cause because it would have been out of my system. An ambulance took me to the ER where without doing any tests told my family that they were sending their paralyzed wife home. My husband refused...so they put me in the psych ward where I spent three days straight with slurred speech, a BP as high as 172/80 (normal for me is 90/60.) I bad absence seizures and epileptic seizures, had to be catheterized and yet was never checked for stroke ir given an EEG! Additionally, I had a stiff neck and horrible head pain. Worst off we were told we REFUSED to leave the hospital. My husband said, "How can I even get her to the car!" Finally they said that they believed the cause of my attack was the new rheumatic drug, yet diagnosis on discgarge paperwork..."conversion disorder". Then my PCP refused to prescribe Fentanyl patches and sent me to rehab...upon rehab evaluation, I was told I was not an addict and therefore they couldn't help me. Then they sent me to a pain clinic who said my disease was chronic and incurable and there was nothing they could do but send me to a pain psychologist who is supposed to teach me pain distraction methods. She told me there is no distractiion for 10/10 pain...and she said we have to first take this conversion thing off your medical record because it's wrong and as long as it's on there "even if you have a heart attack they won't treat you". Being schooled that I am very ill and not an addict my PCP's hand was forced to titer me down off the Fentanyl....but, according to my pain psychologist and other pain cllinics he went down too quickly so now I am suffering nasty withdrawls and pain. I spoke wuth Dr. Katz at OSU....a man I fully admired who said, and I quote, "Well you have to take some responsibility because you accepted those pain meds!" So to sum this all up, I am going to say something I never thought I'd say..."I have lost hope." There is nowhere to go. Many friends have fallen away because they rarely see me and don't know how to help. I feel like a ball and chain to my family and must daily keep my fairh in check...look toward being at my childrens' graduatuon's, weddings and eventually being a grandparent. If not for that I would have OD'd days ago. No place to go for help and at least 20 more years of suffering without a cure....and I'm only 42! Sorry but depression has finally set in. Praying for the rest of you! Much love...MM3
Im so glad your back. Im so sorry your going thru this. I know what your going thru. They dxd me with somatization disorder too. My therapist says it means my brain can no longer handle stress so it is putting it off onto my body and that is why my body is in so much pain. it does make sence but it is not acceptable for them to not treat you because of it. as for the dilaudid.... what were they thinking! and the ER should have been sued for treating you that way. what if you were having a heart attack or stroke and they didnt check. oh my dear, im soo sorry. this disease is bad enough without having drs like that. i pray you can find someone who can help you. i am having a hard time finding a dr who wont give up on me and tell me that this is how im gonna be the rest of my life so deal with it. i just keep trying the next one. i know it sucks, im running out of options too. there are many days that the depression gets the best of me, my kids are always what keep me going. i feel like im holding them back, but my husband always reminds me that they are happier with me sick that without me at all. so just remember that no matter how bad you feel, no matter how much of a burden you think you are, your family loves you, they need you, and they take the good with the bad, your kids would rather have a sick mommy than no mommy at all. Im praying for you! and again it is so good to hear from you, its been way to long. If you need to chat im here.
Ky
Sorry it has taken me sooooo long to respond. The withdrawls combined with the abuse from these docs was about all I could cope with for some time. The first thing I want to to you....to tell ALL of you....is unless there is a valid reason, DO NOT LET ANY DOCTOR DIAGNOSE YOU WITH SOMATIZATION/CONVERSION DISORDER!!!! If you research this diagnosis yes, it is your brains reaction to some stressful event which in turn causes SERIOUS physical reactions....BUT....by stressful event, I do not mean....I was stressed today because my kids were fighting with each other. This would be a stressful event like...without warning your husband just passed away and you found him dead in bed next to you...or, if you were in the military returning from Iraq with PTSD and lost a limb...or if you just suffered a terrible car accident and while only suffering minor cuts and bruises your entire left side was paralyzed because the stress of the event made your brain believe your injuries were worse. If any of you recall the girls here in NY who were suffering from tics at a local high school....eventually those girls were diagnosed with conversion disorder. Ever since this "scandal", somatization/conversion disorder has been the "fall back" diagnosis for doctors all across the country. This is a diagnosis that prior to these events was so rare that only 0.02% of the population received this diagnosis! The week I woke up paralyzed with slurred speech and seizures they gave me this diagnosis even though prior I had no such stressful event. Yet, 6 days prior I was put on a drug used to treat autoimmune disease called Plaquenil. I have now come to find out that Plaquenil can cause seizures, paralysis. neuropathy, and sometimes even stroke. They kept me on the Plaquenil up until just a few weeks ago....when suddenly the neuropathy went away and my seizures stopped!!!! Additionally, Somatization/Conversion disorder is difficult to treat....rarely to never spontaneously recovers...as I did just 6 days after the event....and must be diagnosed by a licensed psychiatrist!!!! Not an ER doc who doesn't do any testing.
As for the high school girls here in NY....contaminants have been found in the local area, where many people are ill with various cancers, autoimmune illness and these mysterious tics that have not gone away.
But, doctors are using this "loophole" as a fallback for patients like us with rare diseases that they either know little about, cannot treat or for the increasing number of patients who are on disability/medicare....i.e. those patients they want to throw out of the hospital rather than spend time and money treating properly with expensive tests and staff attention. I, unfortunately, fall into those categories.
With the help of my pain doctor we will be fighting to right these wrongs that are now on my permanent medical record. I'm done being depressed....MM3 is back and I am ready to fight for the rights of everyone with IIH or Secondary IH. It would seem that even the famous docs at OSU have given up on the cause unless you are there to pay them the $95 + thousand dollars for shunt surgeries. Even though medicare is our secondary insurance and my husband pays out of his paycheck monthly for our primary insurance....well, let's just say I'm just not treated the same way anymore. Thanks for the support K....but, don't let them dig you into a hole you can't get out of. All said....Somatization disorder just means that your brain has succumbed to "hysteria" and any aches and pains you have aren't real...just imagined and can't be treated. It's just plain wrong!
God bless!
MM3
This should be handled by an attorney, malpractice. I have nothing to say except im so sorry and that Dr. Is pitiful!
Keep us informed.
Mary
Im so glad to hear you are back!!! I hope you can stay! This has been such a battle for you and you still have so much to do, I agree with Mary, it sounds like you may need a lawyer. My THERAPIST is the one who tried to dx me and she was very carefull with it but she still did push it a little. She knew the consequences of dxing me with it so she didnt want to put it on my SSI record but we just talked about me possibly having it and what it ment. I told her that in some ways i may agree but in many ways i didnt b/c my pain is very real. She said that my pain is real its just that I spend so much time depressed that thats why my body is in pain. Its not the reason my head hurts all the time and that i still had to battle with drs to figure that part out. i dont think she ever did write it in my chart. now i wont let her lol. Oh my dear MM I am so sorry, you were doing so well last time i talked to you. atleast thats what i remember, i dont have such a good memory and I was gone for a year and a half too, on my own deppressing issue which i wont bother you with at this time. I missed you and I hope you stay strong like i know you are. :)
Ky
MM3
So glad to hear your back and with us again! I know it definitely not under the best circumstances but it is just good to hear from you as I've missed you! You are such a strong woman and have been through so much. I can't believe the treatment you have had to put up with, my jaw dropped. I am sorry you went through this and your family as well, I know how hard and stressful it can be.
I am glad to hear you have finally got some accurate diagnosis with the Rheumatologist etc... I too have Fibro and am not looking foward to the winters with this again so I can only imagine how you feel.
I understand about your friends falling away etc.. but you always have your DS IH family (I know its not exactly the same). We love you and appreciate you. I too have had some bouts of depression lately but I'm 3 weeks out from VP shunt surgery so I think it has something to do with that. I haven't found a medication to totally help me with that either! I'm not sure they even make one!
Hugs to you! Glad your back and ready to fight - God is good!
:) Mandy
MM3
First I would just like to say how incredible your story is and thank you for sharing it with me as well as others. You have more strength then you realize and have helped so many of us on our journey with IIH and secondary IH.
I was initially diagnosed with IIH and went through the motions, took the medications, lost weight and finally when that failed had an LP shunt placed. It got rid of my headaches for two weeks, and stopped working after two months.
I remembered you posting during that time and it gave me the encouragement I needed, to step up and tell my surgeon something was wrong. After month four he taped my shunt and found out it had not been working and that I knew my body better than he did. He also finally told us that he suspected that I had a mild form of Chiari! He didn't t want to do anything for it, because he though if he fixed my LP shunt things would be fine. So, I had a "revision" surgery for my shunt but the LP shunt would not flow. I had very little CSF in my spine. I left the hospital devastated, shunt less, and in excreting pain.
I returned to the ER because I had a CSF leak with high pressure headache. I couldn't stand to sit up or lie down without being in unbearable pain. I had the leak patched and ended up with a VP shunt. He was hopeful that this would take care of things, and to some extent it did. I didn't have any IH headaches, but started to endure the pains of Chiari. I was absolutely frustrated that things were not better. I remembered your wisdom and how much your words had comforted me and gave me hope. I finally had the decompression surgery in June and, of course, I now no longer need my vp shunt. I still suffer in a fair amount of pain everyday all day. I realize my story cannot compare to all you have been through, and although our sufferings are not a contest, but I thank you for your support on DS and all the wisdom you have passed along the way. It has made such a difference, for without you I wouldn't have pushed my surgeon as much as I have.
I will be praying for you. Please do not lose hope, I have so many times. I have been depressed and wanted to end my life many a times, but couldn't do it because I knew for some reason I was meant to still be here. You have made a difference in my life, and have touched many others.
Thank you for taking the time to post this discussion.
Hugs to you,
Mallory
*although our sufferings are not a contest, I thank you for lending me and others your support.
I relate so well to your story. Any time you have more than one "easy diagnosis" to treat, it's like docs' brains turn to cauliflower and they fall back on whatever dx is popular at the time. This is so outrageously unfair to the person who needs their attention and care, and it is so maddening to realize how little recourse we have as patients. You just want to scream, "QUIT BEING LAZY!! Either take the time to do the research you need to be doing or ADMIT that you're not interested in doing it and let me find a doc who will!"
I love your idea of creating some kind of advocacy team/group. I'll be the first to volunteer "all in" with you. If I can do something, please let me know and consider it done.
Over the years, I have been diagnosed with just about everything that was the "popular" finding of the day from "organic brain disease" to "bipolar disorder" to "major clinical depression" to "PTSD" and on and on. When I was first alarmed at my degrading mentation and inability to do my job three years ago, I *begged* my PCP to help me figure out what was wrong. She just kept telling me it was depression and tried adding more and more antideps. It took an internal specialist to assure me, "It's not depression. Depression responds to meds. You are already on meds and your depression is managed. This is something else."
Without her assurance, I actually doubted myself, questioning whether I was just too crazy to know myself... to know my own body.
It really should be classified as a criminal act to intentionally lead a patient to believe (or officially diagnose them as if) they are a "mental case" without a psychiatric evaluation ALONG WITH a full medical workup to rule out a physiological disorder. It should be a freaking FELONY.
I'm the first to admit that docs aren't the gods we sometimes set them up to have to pretend to be. They are fallible and make mistakes. Their job is little more than memorizing a huge list of symptoms and what various combinations of symptoms MIGHT indicate is wrong with a patient. With so many of them, that is where they seem to believe their job ends. They don't want to be bothered with looking anything up or being challenged to think something through. The quick money is in the quick dx's. Folks like us who really need them are SOL way too often.
I agree that you should be able to sue the hospital for failure to render adequate care and failure to diagnose, but I spoke with a lawyer about this myself this year and was told medical malpractice is nearly impossible to prove these days, and hardly any attorneys will take the cases unless they are proven class action suits or gross negligence involving death of the patient.
Makes me FURIOUS! We shouldn't have to settle for this level of care. It shouldn't be okay, and they shouldn't be able to get away with it so easily. Just throwing around a term like, "drug seeker" is a very serious threat to folks in our position. I need to stop writing now. I'm finding myself getting more and more wound up and all I really wanted to say was that I'm glad you're here again and look forward to all you have to share!
~ Bex
I can't begin to tell you how much your reply means to me. I shared it with my daughter and she was moved to tears. It is nice to know that my suffering isn't in vain....that I can help someone else who is struggling as I am. I have been a bit distracted in the last couple of weeks, because, she got a concussion during cheerleading practice, but, I intend to spend more time here. I am glad that you fought for better care, and in the end, that your doctor listened to what you had to say. If only all doctors were like that.
Bex:
Initially, when I was in the hospital with the paralysis, seizures and neuropathy one of the doctors suspected Guillian Barre Syndrome, but, later said they ruled it out. Given that I have a history of mononeucleosis and Epstein Barr virus...this actually made sense. Yet, in the end they diagnosed me with conversion disorder. A disease even more rare than IH! Conversion affects only .001% of the population and typically only after a MAJOR trauma! (Which I hadn't experienced!) The diagnosis must come from a psychiatrist and the advised treatment is psychiatric therapy. I was diagnosed by an Nurse Practitioner and physical therapy was recommended. Additionally, I have found out that the tests done for Guillian Barre were never done on me....so how was this ruled out? (Spinal Tap, MRI, EEG, Nerve Conduction Studies). I did start seeing a Pain Psychologist and she said there is no way no how that I have conversion disorder and stated she would advocate to that fact. She confirmed what you said, that malpractice is hard to prove and even if I do prove it, future medical treatment will be hard to find. In the meanwhile, I'm trying to work with a nurse manager with my insurance company....but, even she is at a loss for what to say.
Now I'm growing especially concerned because I have had a constant daily headache, neck stiffness and back pain for the last month so I have growing concern that my shunt is malfunctioning. ...and, I'm still not completely sure that I don't have Guillian Barre as I have all the symptoms, but, still haven't been tested! So frustrated! Uggghhh! We MUST find a way to educate and advocate for IH patients! What a mess!
So happy to talk with old friends, so sad to still be part of a club nobody wants to be in! Ohhhhh sweet sorrow!