Chiari Malformation Community
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Avatar universal

Upset and confused

Ok, I have been browsing the forums and I have no idea what most of this shorthand means.  I am already frustrated.  I just got diagnosed with Chiari 1 after getting a steroid injection in my knee.  Before the injection, my gp gave me Celebrex, that made me break out in hives.  They gave me a steroid shot in my hip the next day and a referral to a ortho specialist.   I got the injection in my knee on 9/18 and, that day, started having these symptoms that have been worse every day since, a week and a half after the original hip injection. The day of my knee shot, I started having symptoms and my temples swelled up.   Because my swollen temples became a freakin medical mystery to my GP, they gave me amoxacillin for a possible sinus infection.  I then broke out into hives....I have never been allergic to antibiotics before!  So, after those hives went away, they gave me leflox..I can't spell it...and I broke out in hives again!  They then gave me some steroid cream and a non-steroidal allergy nasal spray.  The cream burned my skin and seemed to make the hives worse and I think the nasal spray made my symptoms worse and I think made my hives stay longer. The first day I had a raging, throbbing headache and my temples swelled up and I looked deformed.  Now they have increased to the point that I have an episode everyday, if I am around noise ( I work in a bar, I wear earmuffs to help.) symptoms and pain are doubled.  I don't drink or do drugs and I quit smoking 2 years ago, so I know that these symptom are not from that.  I have pain in my neck, swollen temples, back and shoulder pain, weakness, tingling in my extremities especially but all over really, drunk walk, the list goes on and on.  So, my gp orders an MRI, which showed the Chiari.  So, a friend gets me into a a neurologist ahead of the list, so I only have to wait a few days, whew!  He said that the MRI showed that there is no blockage and diagnosed me with post injection migraines.  OK, fine.  I am skeptical, especially since I have had a mild form of these symptoms since adolescence.  So, the neurologist gives me BUpap for the "migraines" and they made me so high I had to stay home from work.  Let me clarify, I HATE being high from anything, there is a reason I don't drink or do drugs.  I am a control enthusiast (I love that commercial!) and get very anxious when I am debilitated, besides the symptoms take enough control from me,   I only have a few hours in which I can drive and not be a danger.  I am breaking out in hives again.  I don't know if I have a question.....my brain is always foggy anymore.  I am already frustrated and pissed off and spent so much useless money on "I think this may be it, here take this..."  Anyway, I have to change professions because I can't work in a loud environment anymore.  I may be moving to Charleston, SC and I was wondering if there was any references for Chiari  doctors at MUSC, Dr Frankel seems to be popping up in my searches.  Does anyone get fits of rage and anger and then want to cry for no reason?  I am so frustrated with a lot of "it could be this"....I WANT A @#%# ANSWER, A PATH THAT I CAN START TO FOLLOW!!!  I have read how many misdiagnoses have been migraines, and even though that medication numbed my head, my neck, and the lobe things at the base of my skull, and back still hurt in an  achy way.  I also still couldn't breathe very well.  And it made my brain even foggier than it has been, and din't really help with looking like I am blind drunk because my motor skills are retarded ( I mean that in the dictionary sense, not as a stupid slang term!)  So, if anyone has any references fir SC, or ideas of how to better talk to my neurologist I would really appreciate it.  Thank you so much in advance!
22 Responses
5640779 tn?1375813366
Welcome to the world of Chiari.... It can be a very frustrating place to be, I know. First of all, I would not rely on a neurologist opinion of whether or not you have crowding. From what you describe, you are certainly very symptomatic. Therefore, I would get a cd copy of that MRI along with the report and take it to a Neuro Surgeon who specializes in Chiari for another opinion. You have Ceberal Spinal Fluid (csf) that flows through your brain and spinal column. The Chiari can block the flow of this causing many of the symptoms you have. In order to know this, you need a test called an MRI Cine. This is different than the one you already have. Also, it would be a good idea to keep a copy of all your medical records in a file, and a cd copy of all your films. This is very important to have.
Now, as to your hip/knee issue and injection reaction. I am not saying these are related to your Chiari because I'm not a Dr and don't know that, but they certainly can be. You said you have had a mild version your whole life. This is why you need to be thoroughly evaluated by a specialist who can properly diagnose you, as well as rule out other conditions which may be related. There is a list of Dr's on here people have gone to, it sounds like you already have began your search. You may also want to connect with your local support group, you can easily find it on line. Ill send you a private message as they won't let me post it here.
Lastly, I hear your frustration. Especially about wanting the answers now. However, this is a serious but treatable neurological condition that you do not want to rush into treatment for. I know it's hard, and you haven't felt well but now you are on the right path. Take the time you need for YOU to get the best possible care my friend :-) Lisa

Avatar universal
I FEEL YOUR PAIN!! Your story is very similar to mine EXCEPT after my MRI showed Chiari I went right to an excellent neurosurgeon who checked my CSF flow (a different kind of MRI that shows if your cerebrospinal Fluid is blocked in any way). I called him excellent for ordering the CSF flow study, but he didn't believe that my symptoms were chiari. He said most people never know they have it and that most people's symptoms aren't chiari. I didn't care much for him at all but he ordered the right test. I think this was in July.
So once the study came back showing blockages I saw an  NS (neurosurgeon) that was highly regarded in the hospital I work in. She said I needed surgery and that my increasing symptoms would only get worse the longer I waited. I set  surgery for August 28'ish and was sorrta freaking out about brain surgery. But then I had a kind of symptom free week and financially I really wanted to wait until November ( and also that I would lose my job if  I didn't. )
My symptoms got worse every day after.By the end of the second week I knew I could no longer safely do my job because my memory was shot and I had constant headaches and walked around with a lit fuse) . I told my boss and that was my last day so i moved my date to the next available which was Sept. 20th. Due to lab issues it took until October 9th for my surgery.. Its done and I am glad.

Moral of the story make sure you have had a flow study or cine MRI, and skip the neurologist and go straight to the neurosurgeon. They ultimately make the decision anyways. Just fyi  From the time my symptoms started getting worse they got worse fast. I would go to a big city hospital thats as close as possible. But with chiari, often times surgery is based on your symptoms and your CSF flow, and it IS  brain surgery and all..

Good luck ! I hope you find a specialist in your area . Make sure you advocate for yourself if you feel you don't have your questions answered or need symptom treatment.
620923 tn?1452915648

  Hi,...I know this is a very frustrating journey we are all on....and the abbreviations got me at first too....so here is a link to a list of what they mean....I find it easier to use them now as I do not have to type everything out.....http://www.medhelp.org/health_pages/Neurological%20Disorders/Acronyms-and-computer-short-hand/show/509?cid=186

U deff need a true Chiari specialist to help u, even tho this other Dr says u do not have a CSF obstruction ....I wonder was that from a  reg MRI or a CINE MRI? It is possible for CSF flow to look normal on a reg MRI but this is a pic of a sec in time, it does not show in real time how it moves...a CINE MRI shows it move...so the Dr can see if at ne time it does get obstructed....

Plus there are a few related conditions that can cause many of the same symptoms as Chiari, u need to rule them out as well.....

See our list of Drs and use to research them. -http://www.medhelp.org/health_pages/list?cid=186
Avatar universal
Thank you all for your support and comments, I do appreciate it.  I may be spending a lo more time, possibly moving to, Charleston, SC,  MUSC is there with Drs. Patel and Frankel.  They look great on paper, Frankel even has a gruesome video online, but I would love to know if anyone has had any personal experience with them.  I am sending them my MRI and medical records tomorrow, so they can determine if I need an appointment.  MUSC is a five star rating hospital, and the 2 docs I mentioned are supposed to be Chiari specialists.  I am in Knoxville, tn right now, Nashville and Vanderbilt is closer but I have family and a possible new career in SC.  So, if I do have to have surgery I may have a job (I currently work in a nightclub) that I can do while recovering (when I regain some lucidity)....after the initial 2 months or so.
620923 tn?1452915648

  Keep in mind it may be more then 2 months....doing too much too soon post op can cause set backs.....not sure what the new job entails, just be careful and take things slow.

I am not familiar with those Drs, but know u have a Dr Rosner and Dr Henderson and Dr Heiss in the general area when u move.....all Chiari Drs.

I have a Chiari friend living in Charleston, and know she goes up to Dr Henderson....
Avatar universal
I will be behind a computer, and I just got a new chair for the computer that  supports my head.  It is awesome!!!!  Anyway, I digress.  Is that Dr. Henderson in Charleston?  There are a few different Dr. Hendersons in SC.
Avatar universal
I'm not meaning to scare anyone and I am actually looking at these forums to try and gain some understanding myself, I guess maybe as a comfort. See my 19 year old cousin just died of this. She was diagnosed a year ago, headaches, couldn't sleep, also gained depression and felt jut by right but was due to have tests, sadly she didn't have that time to spare and while talking to a doctor suddenly slumped to one side and she was gone!! The fluid has built up so much in these few months she waited that she was instantly brain damaged and passed away. I hate to think that I am worrying anyone but all our family have done while grieving is say how much we wish we had taken it seriously and done things with urgency. I need to be able to share this because if this helps just one person then its worth it. It may be urgent or it may not, but there is always the risk and you don't know how bad it is..
620923 tn?1452915648

  I just checked the List of Drs and Dr H is in MD....there is a Dr Rosner in NC......

They are the ones closest to ur area that I am aware of.
620923 tn?1452915648

  Hi and welcome to the Chiari forum.

I am so sorry for ur loss....we do have a list of Chiarians that have lost the fight of this condition....there are far too many of us with it and far too few Drs that know how to treat it successfully.

May I ask, do u know what the cause of death was? CSF obstruction, ??

Thanks for sharing with us.
Avatar universal
On the Friday she didn't feel right so she called an ambulance and on the way to hospital she had a cardiac arrest but I believe it was a only small one and they revived her. And on the Saturday she was fine, and they were actually going to let her go home on the Tuesday. On the Sunday she was sat up in bed talking to the doctor and then bam she was gone. Apparently so much fluid had gone to her brain her brain just sagged and That was it. These are all I know so sorry if its sounding confusing or not described at its best but I know this was the gist of it. Very sad ad I wish she had of gone to get tests sooner :(
620923 tn?1452915648

I understand how difficult it is to understand all that went on and appreciate ur sharing what u do know...

So she did not have the decompression surgery, and she had excess CSF fluid build up.

Ur regret is that she had gone sooner for help, but I an  attest that so many of us do go and get dismissed by Drs as they do not all have the info and experience to recognize not only Chiari but how it can and does affect us...and many do not know to  look for related conditions.

I am so sorry for the loss of your cousin....and thankful that you feel more need to know how this can affect us if we do not get the proper care.....

It is a really tough road  that many of us travel to find a Dr that not only knows Chiari but is well experienced with it and ALL the related conditions.

I pray  your family can find a way to honor her memory, maybe by participating in a local Chiari Awareness Walk ....these are held in Sept every year for the last 5 years.....

All the best to you and your family <3
Avatar universal
I'm so sorry for your loss and this is truly something you probably have never heard of until someone you know gets it... and this forum has been so helpful for me as my symptoms progressed so quickly to me not thinking it was that big of a thing and trying to postpone surgery to having it affect every aspect of my life so quickly. I'm a cardiac nurse for almost 10 years and we see neuro reports all the time and I had never heard of this then once diagnosed could look back and see that I had had symptoms since childhood. Its a bizarre thing. My 17 year old has had headaches for years and neck pain. We had her checked and she is 2 mm herniated already. So just also know this can run in the family. So knowing the symptoms and knowing what to look for may help bring more knowledge to your family is anyone else should happen to start having any weird symptoms.

But I do think that looking at forums and figuring out more about this may help you find ways to cope and hopefully to start to heal
Avatar universal
I am waiting for Dr. J Cheng from Vanderbilt to call me for an appointment in Nashville.  It took my GP office A WEEK to get all the records to them.  GGRRR!!!  I just want to know what path I need to start heading down because I feel like I am running in circles.  I am not a patient  person, and this came at a time when I was preparing to make a major transition in my life, so what the doc says affects several people.  
6150006 tn?1496080243
All your posts brought me up sharply.  I did not realize people died from CM, I did not stop to think about taking all the necessary time to heal.  Poor, poor me is fretting cause I can't sleep well, can't get comfortable, can't immediately return to my Pre CM life.  Shame on me.  
Instead, here's this:
No one dismissed my symptoms no matter how weird.  My doc focused as much on the symptoms as the MRIs saying they do no not tell the complete story.  He said even if I never got worse, I would always wonder, in his experience, would I have gotten better.  Totally my decision even though I took hubby &  close physician friend with me.
I know I made the right choice.  I will slow down & take this moment by moment with a thankful heart. Marilyn, 20 days post op.
Avatar universal
I got rejected from Vanderbilt, some crap that the doc sad that I should seek local help.....so I should  continue to be treated for migraines, get medication that doesn't work and be treated like I am some kind of stupid, hypochondriac woman!!!!!  When I mentioned to the person that I was going to have insurance in 2 hours, they seemed to perk up, but he was just the messenger and the "review" still stood.  I am so angry, they had to **** me around for 3 days!  Anyway, I am headed to SC for Thanksgiving.  Have a great Thanksgiving!!
620923 tn?1452915648

  Hi,,,,Safe travels to SC.....and I pray u have a wonderful Thanksgiving too.....I had a few Drs do the same to me....it may be u just have those that do not really know Chiari looking at ur films...

Try a few u know are true Chiari specialists....hang in there.
Avatar universal
I just had the surgery on October 25th.So far I have not had a single headache.
I struggled with very bad migraines and short term memory loss.I had an awesome neurosurgeon,his name is Dr.Ali Krisht.He practices out of St.Vincent's hospital in Little Rock Arkansas.He is know around the world as being the authority on this condition and the proof is in the pudding.
Despite the soreness from surgery I feel great.
Google his name to find out all about him.
Avatar universal
Yeah, the roads are so bad that I ended up taking a Greyhound.  I would've worried too much about my boyfriend driving home.....and getting here. Not a whole lot has changed, except for free public wifi (scary!)  Anyway,  I am going to talk to Dr. Carl Hampf in Nashville after Thanksgiving.  At least I have insurance now, I am pretty sure that is why Vanderbilt gave me the answer they did.  Even so, I told the nurse that I would have insurance in a week, all 3 times I talked to her!  I have been up for 20 hours and I am beat.  Last minute decision to  greyhound it!  Happy Thanksgiving and thank you so much for all of your responses!
620923 tn?1452915648

  We have had a few members see Dr Hampf and were well pleased....praying all goes well.

Happy Thanksgiving to u too
Avatar universal
Hi,I am a patient of Dr Frankel and I was diagnosed with chiari malformation in Jan of 2011.I had decompression surgery in March of 2011.My symptoms came out of no where one day.They started with me beding down to pick something up and blanking out and not knowing who or where I was.I went immediately to the er where they told me I was experiencing motion sickness and that I had anemia.Well it was neither because a few days later I started experiencing pain in my arms and legs.I proceeded to ignore them until I got a head cold about a week later.When I would sneeze or cough it felt like someone was ripping my arms from my body literally!! I went to see my family doctor who prescribed me something for the cold and told me that if the tingling in my arms and feet lasted over the next 3 months and yes he said 3,that he would refer me to a neurologist.Within a few days I could no longer keep down any food or barely remember anything.I decided to drive myself to musc.It was then that I found out after about 4 mri's that I had this condition.It took about a 3 months to see Dr.Frankel and after my first visit I was scheduled for surgery.He and his staff were excellent,the surgery went great and I went home two days after.I moved around too quickly though because I ended up right back in the hospital a week later unable to see anything or even speak.I had gotten a terrible infection that almost cost me my life.After a weeks stay in the hospital with the strongest antibiotics I went home.It has been two years now and besides the nerve damage in my left arm and a few muscle spasms from time to time,I have been fine.Dr Frankel did a great job getting me back on my feet.
Avatar universal
Oh, what a journey this has been with still no definite diagnoses.  Dr. Hampf in Nashville said I was only 1/8 of an inch swollen, surgery was not recommended.  I am now kicked back to my GP.  My temples are still swollen and arterial disease has been ruled out.  TMJ is almost a definite and I have to have an MRI to confirm a pituitary gland tumor.  Plus, I have a side order of infected uterus.  The only thing Dr. Hampf did was order another MRI of the same spot.  Should he have done other tests?  This is so frustrating!  I am not good at being fragile and I have put on 20 pounds in the past 2 months!  Also, apparently, I have become allergic to most meds as well.  I still have the same symptoms, I hope the orthodontist can help.  I like Hampf, and I want to trust his opinion, but I can't help feeling like he should have done more tests.  Maybe after I see the next few docs for unrelated problems, theses symptoms will go away. Maybe I am just being paranoid, but the risks of non-action are scary.  I have exhausted my options in TN, and my insurance does not cover out of state treatment.  This is a bad day pain wise so I am extra sensitive.  I am also going to insist on having a test for ED as well.  I have never had medical problems until this year, I now know that I have been living in total disillusionment about the effectiveness of the medical system and doctors!  It should not be so hard to get a diagnoses!  Patients should not feel frustrated, nor should they have to comb thru their medical records for serious mistakes or have to be their own advocates!  Isn't that what the doctors are supposed to do?!  Anyway, sorry about the novel.  Thanks for reading.
620923 tn?1452915648

  Hi...I am so sorry u r not further along in this journey with more questions now then answers....I know it can be very frustrating.....

  All I can suggest is to try another Chiari specialist...as I mentioned b4 even tho some Drs do the surgery it does not make them a specialist, and for me that is one that does research as well as treat Chiari and ALL related conditions....so if ur Dr did not look for related conditions and issues, then it is highly likely he only treats it and is not a specialist in the sense that he does not do research.

I went to 2 diff "specialists" and I was told they treated Chiari....well, they were not able to offer me ne help...so I went to a specialist that also did research and was finally able to relax and know I was in good hands.

I went to Drs on and off most of my life and the off times was when I felt like u do so disillusioned with the medical profession......but, when this condition flares it would make me seek out yet another Dr....

  Being our own advocate is the only way to get the best care...and that is JMHO.
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