I am a 26 year old female. I just found out that I have Chiari Malformation type 1. Actually it was discovered by a radiologist back in 2010 but I am just now finding this out. Since 2010 my symptoms have been getting worse. I have those horrible head/neck pains, I am losing my balance and falling, I am having a difficult time swallowing, I have had a bout of urinary incontinence, I cant remember what I did the previous days, I have numbness in my left hand/feet, and some days it is hard to even keep my head up (literally) because of the pain and pressure. I have gone to the ER countless times and I am so tired of the run around. I finally found a Neurosurgeon and he is going to present my case (MRI slides and medical notes) to other neurosurgeons in my area. He wants to perform this posterior fossa decompression surgery, and all I know about it is what I have researched online. It sounds scary!!! But dealing with this Chiari malformation and all of its debilitating symptoms has been nothing but a nightmare. I have been admitted as an in-patient at the hospital 3 times in a one month period. The hospital resident was horribly rude to me. I was crying in pain and explaining to her that it felt like something in my head was being crushed by pressure. She refused to help my pain, so I lay there suffering. The whole point of my being admitted as an in-patient was to consult with a surgeon. The ER doctor felt that would be necessary just to get the opinion of a neurosurgeon who deals with this type of thing. The hospital resident who was "caring" for me told me that she didn't feel that I needed to see a surgeon and because I was falling she wanted to talk with a physical therapist. I informed her that could make the chiari worse. She was treating me like I was making all of my symptoms up although all of the MRIs and CT scans I have had proved that I was the victim of chiari. I requested to leave. I was done suffering at the hospital when I could suffer at home. I know this is a long question, I just wanted to give some history. I see the neurosurgeon this Friday..
Who has had this surgery? What can I expect? Was this surgery successful for you? It would enlighten me and probably put my anxiety at ease if I had someone who has already gone through this share with me their story. Thank you and God bless
Hi Krystal....there r quite a few of us that have had surgery, I am one of them...mine was in May of '09.
Surgery is not a fix or a cure, and u need to make sure that u have the right Dr b4 u decide on surgery.
I know u r in pain, and getting what we have dubbed "The royal chiari run around"....but, do not rush into surgery until u get more info on how this is affecting ur overall health....
For examlple...do u have a CSF obstruction?...overcrowding?....tethered cord, disk issues, sleep apnea, ehlers-danlos....it is very important to know b4 surgery as these can affect ur recovery.
It is diff to tell u what to expect as we r all diff and respond to the meds used differently, and surgery differently....plus not knowing what else u might have going on most times is y many chiarians have a negative post op experience.
I am so sorry to hear about your experience at the hospital. That must of been awful, I just can't inmagine being treated like that. Just as Selma. I have had decompression surgery June of 2010, and also as Selma I had other issues to deal with and I had to have 3 surgeries all together due to CSF leak's so there are risk involved. I also searched and had 3 consultation before I found a surgeon who I was comfortable with and trusted in his opinion. It is a scary decision to make to have or not to have surgery, but for me I would do it all over again due to I couldn't of lived life the way Chairi affected me.. As like you I had such painful pressure it felt like someone had my head in a vice and every day it felt like my head was getting squezzed even tighter. I couldn't bend forward or backward which even after surgery I still have problem with. After a year pre-op I am now going to a pain specialist for pain injection. This is an illness that once you have it I don't think it completely goes away, but for me the pressure in my head got so severe that I had no choice but to have surgery. As you will see with almost all of us there is side affect's that we deal with every day, but surgery has helped with some. This website is a wonderful and a life saving site for me because you can talk to any of us and we all understand what you are going through. I pray that you will find the right doctor and put your faith in knowing that surgery does help with some of the pain, but it doesn't alway's go away. As like my doctor explained to me you change 1 difficult issue to some times having to except other's to have to handle. It all depend's on you and how you are living your life. I am 49 so when I went to the doctor he told me it is better to have surgery when you are younger because your healing process should be better than if you wait. Because once you have Chairi you will alway's have Chairi so the symptoms that you are having probably won't get any better. Please keep us up date and let us know how you are doing. Just remember you are not a lone and we are alway's here to listen and understand. Best of luck.
Thank you for the replies. I do have tethered cord and disc issues. The top of my neck gets swollen all the time and now the pain is so bad it feels like the back of my head is going to explode. I fell again today because I was so dizzy and I lost sensation in my feet and it felt like pins and needles in my legs. I am embarrassed to say that I have also lost control of my bladder. I cant move my head without pain. My neurosurgeon is currently having a conference with other neurosurgeons to discuss my "case" He will sit down and tell me what the plan of action will be on Friday. I also have a tumor on my thyroid and doctors believe it is linked to the chiari. It seems like I am having a harder time swallowing everyday; like it is getting worse. When I had a lumbar puncture the doctor said it came out fast and that there was an obstruction of the CSF due to the herniation of the tonsils. I have developed diverticulitis and that is painful in its self and drs also believe it is due to the chiari. I am so frustrated because i have been dealing with this for over 2 years and I didnt know why. Drs were beginning to treat me like I was a drug seeker and that I was "crazy" That is so disheartening. My doctor and family want me to go back to the hospital but I am so reluctant. Thanks again for the replies and for sharing with me your stories. I am having a hard time typing because my hands wont stop shaking. I will keep everyone updated. I think if these symptoms get any worse I will go to a hospital that is further away from where I am at. Maybe someone at a different hospital would take me more seriously and help steer me in the right direction. And maybe I could get a second opinion from a different neurosurgeon?
God bless you all and again thank you for sharing your stories,
So many of us get that treatment....and y we dubbed it "the royal chiari run around"....but, we do have that list of Drs and u will see a difference once u see one that has the experience with chiari and all the related conditions.
Since it seems ur TC is the possible reason for ur incontinence u will want a Dr that knows about this ...if u have a PFD first, u may get worse...so make sure ur Dr is well informed on all of this.
A 2nd opinion is a good idea, make sure u compare apples to apples...that both Drs have the same experience.
I also agree. You want more than 1 opinion on this before you decide on surgery. Some doctor's are more caring than other's and they know chairi more. I know exactley how you feel as for pain med's. Some doctor's make you feel your a druggie. I went from no med's to taking 6 med's a day. I was just thankful for having my family with me at the time of my appt because they helped by telling them I never even had to take an asprin. Now I can't through the day withou my pain med's. It sad, but true. Something new that I have to except. Your symptoms seem to be getting worse just as those of us who have already chose surgery. Just keep being persistant about your symptoms because no one know's what you are going through except for you. I wish you the best.
Thank you for the replies. I go see the neurosurgeon tomorrow. I feel the other day and went into the ER because I thought I hurt something. The hospital turned me away saying they dont treat chronic cases. My shoulder and neck hurt so bad and it seems like there are no drs who want to help me. Not even the neurosurgeon. Another thing I am noticing is that I have been running high fevers. I dont believe that has anything to do with Chiari but something isnt right. I am allergic to nsaids and aspirin and tylenol is just not cutting it. I am afraid to ask for help anymore. I am not a druggie and I dont condone it. I was raised by parents who were habitual drug users and i refuse to be one myself. Of course their drugs of choice were illegal. I have always taken my pain meds correctly and hate that I need them. But without them I cant function. My doctors office want to discharge me from their office because they say they dont know what else to do for me. I am so discouraged!!! They say I should see a behavioral therapist, like I am crazy!!! I am not crazy! No one deserves this! I wouldnt wish this pain upon anyone. The worse part is that the pain takes my joy away. I want my daughter to be raised in a happy household. It breaks my heart. I feel like no one wants to help (doctors anyways). I am tired of doctors saying they are sorry. I dont need them to be sorry. I need them to help me!!! I am not a case, I am a person. I hate sounding like I am feeling sorry for myself. I am more venting than anything. However, talking to other people who have gone and are still going through the same things as I am helps. I just want my life back. I used to be so happy and energetic.. Now I feel like I am confrontational and bitter. That is not my nature. I know that I will I will probably live with this for the rest of my life on some level, and I can accept that. But I can't continue to live this way. I am suffering! I need a doctor that will listen and help me. But I havent found one in the Vancouver, WA area. I have even considered getting a duel citizenship to Canada. But it is just a thought, probably out of frustration. Lol.
Thank you for all the kind words of encouragement. I hate that I sound so negative. I am sure that you all can understand though :)
I am so sorry u r not getting the proper care...so many of us have been thru that ourselves and know just what u r going thru.
ANd I am in agreement with u about pain meds...especially with a condition that can progress, how do u know if it progresses and gets worse if u mask it with meds? Granted there r times we need pain meds, but too many drs rx the meds and stop looking to see what is wrong...and to me that is the problem.
Yes I did, thank you Selma. I am seeing a neurologist on the 28th and she seems to be a good compassionate doctor. I hate waiting but I am hoping it is worth it. I am trying to remain positive and just live day to day. I am seeking a new PCP and hopefully I can get squared away soon with one soon. I am very dizzy today and my shoulder and neck still hurt from the fall I had the other day. I am trying to rest, but the pain is making it difficult. I have to believe that someone will help me. I know that there is no cure and surgery is not a fixer, but I am praying that someone will help me put some of the symptoms at ease. It is really working on my nerves and i am experiencing more anxiety. I know God doesnt give us more than we can handle, and I have had a very hard life. I know this is His will and I have to continue to believe that He has a plan for me. Finding this forum has been a Godsend in itself :)
I wish I was closer to Colorado. I would love to see what Dr. Oro thinks. The doctors in Washington in my experience aren't compassionate or seem to care. The majority of drs I have seen just seem like they are in it for the monetary gain and not for the integrity of care that I believe drs should all have. I don't get it. I was in the healthcare field for 7 years as a CNA and I never mistreated my patients. I have always gave every single patient the respect and care they deserved.
I would love to see Dr. Oro. Now this is a doctor who seems to care about his patients. Not only does it seem like he cares, but he is honest and respectful. I wish there was a way I could email him to see if he would give me any advice..
Thank you for sharing the poem. It gave me goosebumps.
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