Brand new member bewildered and scared

Welcome Greetings and Introductions
1

Where can I begin? I am almost 50 yrs young, have a congenital cochlear deformity which means I have severe one sided (right) hearing loss and wear a hearing aid. For many years my GP doc has assumed my terrible balance problems were connected and I have been advised to simply live with it. He has also not offered much support for what he assumed were migraines (starting at the back of my neck,travelling to behind my eyes, very short lived and intensified by straining or leaning forward - and waves of vertigo/nausea ) I have lived with these issues most of my life and just gotten on with things.

However about two years ago my hearing seemed to get worse, I actually started losing my balance and falling over in the street (I have never been so scared I almost staggered backwards into a moving bus), pins & needles and strange buzzing/ numbness in my hands and feet, twitching face muscles. A trip to A&E ruled out stroke etc, but raised the spectre of a possible vestibular schwannoma. MRI of inner ear ruled that out but NHS delays and time off work has now put my job in jeopardy if I cannot sustain attendance.

Symptoms have progressed, double vision, multi directional nystagmus, constant oscillopsia, constant sore neck I hold my head at a strange angle -it helps me see a bit better and eases the pain a bit. Any movement at all of my head (or eyes) brings on vertigo and nausea. I just want to lay down and sleep all the time. I now walk with a cane, find 'busy' situations like supermarkets, crowded streets unbearable.

In work I check customer accounts on a pc but am now very slow reading the screen and am finding it difficult to sustain productivity. Access to Work have given a grant for large pc monitor and other workplace adaptations. Also I have recently been referred to social services dept for adaptations in the home (double handrail on the stairs and rail in the shower). I cannot request any more help until I have a proper diagnosis.

I finally got a neurologist appt, he found my reflexes were much brisker on right side, he told me 'sometimes people can have an abnormality in their skull/neck which can cause neuro symptoms like yours, we'll do an MRI of your full head and neck but don't be surprised if you get a letter from the neurosurgeons to do surgery on your neck'.

That is all I know at the mo, my MRI is Friday, work have been lenient so far but have hinted if I need surgery they may change their position. I'm scared for the future

2

I’m new to this as well, just got diagnosed. Your employer should not have said that to you. I’m assuming you live in the US and work for a company with more than 50 employees, if you do then you qualify for FMLA job protection for 12-wheeks as long as you have been employed with the same company for at least 1 year. I’m not sure of the recovery time table yet for decompression surgery, but you should worry about your own health and if your company threatens you then look into legal action.

3

Sounds like a story similar to mine wobbly. I was 17 years young at the time. Minus the ear we have scarily similar symptoms in the way you describe. I am 5 years post on decompression now. The recovery was about 4 hard weeks and then 3 or 4 months until I was considered healed. As for the relif it brought - I would suggest thinking a lot about going forward. I don’t have the sharp pain on exertion or the vertigo and headaches that bad but my other symptoms remained and some have even progressed. We are all in this together here. Whatever you need to help, it is here somewhere.

4

Do not be scared I no its hard to just not be but I have had this condition all my life. Diagnosed at 6 and I’m now 23. I have been threw hell and back I constantly have no balance headaches and vision issues along with major neck pain and nausea. 1 thing I suppose is if it is chiari and you get the diagnosis that explains your symptoms than you can work on treating them. More than likely you sound like there really having an impact on your life so decompression maybe recommended or a shunt! If u have any questions just ask! I hope all goes well for u

5

I’m sorry you have suffered for so long. It’s unacceptable that medical professionals dismiss people with symptoms so easily without investigations. I’m a little confused as to wether you have a diagnosis of a Chiari malformation or has the neurosurgeon mentioned Chiari malformation?
I’m seeing a neurosurgeon in two weeks time at his request after seeing my brain scans and sending me for a CINE MRI to check CSF flow. He mentioned Chiari malformation. I have many, but not all, of the symptoms you have mentioned here. But as you may know, every Chiari case is different and symptoms will vary from person to person. It’s a diagnosis that sadly is not often given or found until later in life. Many people see numerous health professionals before they get a diagnosis.
There are numerous Facebook support groups where you can go to get real time suggestions and hear other people’s stories. I have found those groups to be extremely helpful as the people in there are suffering the same problems and for me I finally felt I wasn’t crazy after all. It wasn’t just my imagination that I had all these symptoms. Please don’t let anyone do any surgery on you until you do all of your research and know exactly what is involved. Also keep in mind that a Chiari malformation is often missed or dismissed on a scan, especially if your herniation doesn’t fit the conventional measurements. But know that the size of the herniation has no bearing on your symptoms. If you have a CSF blockage you will need medical intervention. Some people with a large herniation have no symptoms and some with little herniation have a myriad of symptoms.
I hope you get answers very soon. I know it’s a nervous time. Please take the time to search the Facebook groups as they will be very helpful to get some of your concerns answered by people that have been or are going through it all.
You’re a strong person and you can get through this, no matter what the diagnosis is.

6

Wobby-
MRI showed I have Chiari Malformation in 2009. I too have many of your symptoms. I had decompression in 2010. It sounds like you need a full brain and spine MRI. I say that because if Chiari is found there are other things that could be going on as well. To me it sounds like you are in the UK? I know it is difficult to find neurosurgeonsome over there that understood Chiari let alone do the decompression. I believe there is a UK group on Facebook if you have a Facebook page.

I don’t usually recommend Dr. Google BUT research Chiari facts, signs and symptoms, I believe you will find answers to life long problems, some you didn’t even know we’re problems!

If you have more questions please feel free to ask. I am 42 so I understand age and how it feels like your body has let you down. All the best!

7

Hi Wobbly! I’m new, too-to the group. I’m wondering if you also have Ehlers-Danlos Syndrome, EDS, like me? Really loose joints and very flexible? I can be walking on pavement and step wrong on a pebble and BOOM! I’m on the ground. It has taken a long time to get all my anomolies diagnosed, too. My advice is to stay diligent, but patient. Be you own best advocate!

8

Dear Wobbly,

Until you have your MRI, you aren't going to know exactly what is going on with you.Being told to expect surgery is just not on..unless that doctor had x-ray vision and could tell what was wrong, which I very much doubt as he/she recommended an MRI. Neuro symptoms are many and varied and that MRI is essential for a diagnosis.

I know you are worried but, as I have found, you have to take the process one "wobbly" step at a time (lol). Please don't get too far ahead of yourself, easier said than done I know, but I have been where you are and come out the other side albeit a bit battered! Also know that you are not alone and all of us here wish you the best. Please keep us up to date as to your progress.

Best wishes

9

Hello,
I would like to say, please breathe and be certain before anything is done in the way of surgery. And until that MRI, you just don’t know, and maybe not even then. While everyone agrees, per MRIs ad infinitum, that I have a Chiari malformation, no surgery on the horizon for me, per two different Neurosurgeons. I have had one test that has made a difference in all of this, it was a genetic screening for tolerance to pain meds, and the like. It found that I have a mutated gene, that makes it impossible for me to metabolize folic acid. (One neurologist, whom not only mis-diagnosed me with carpal tunnel and advised surgery on both hands , but also, in response to my comments regarding my memory said to me “folic acid, folic acid, folic acid” to which I continued to poison myself to an even greater degree than I had been my entire life. Was just so wrong.) I have changed my diet to eliminate folic acid, and have begun taking L-methyl folate, which is what folic acid becomes after it has metabolized (By prescription only). The difference has been dramatic. I have more energy, I am much less dizzy, the fog has lifted. I still have Chiari, and yet I can function in the world so much better.

This genetic test also found that there are no pain meds that will help me, also in my DNA. The doc that did this test said that most of the people she tested, have at least some of these issues. Most notably the MTHFR mutation, that causes the issues with folic acid.

Today, my memory works, for the first time in my life. Still not perfect, and yet, I have a much better memory today than I ever had, and am actually remembering some things long forgotten. I’m about six months into my l-methyl folate therapy.

Hope this helps.

Feel free to contact me any time.

I know you want answers now, just remember we get one chance at this body, we have to be pro-active, and make choices with great care.

Peace and Love.

10

Hi,

I did a cirurgy in Barcelona. http://institutchiaribcn.com . They are the best worlwide. Talk to them.
Any question you have I will be glad to answer.

11

Hi I have chiari and a syrinx and hydrocephalus and I have real balance problems. I stagger everywhere and can’t go anywhere on my own. I walk with a stick and can only walk on the flat. My neurosurgeon reckons it’s my spinal fluid not flowing properly X X

12

Dear Wobbly,

Take a deep breath, we are all here for you and with you. Many if not most, share your same concerns and it is scary! BUT, knowing your not alone or going crazy, or as one neurosurgeon told me before “its all in your head!”- well it may be, but really, mentally its NOT, you know your body, your symptoms, and when theres something obviously going wrong, our bodies are the FIRST to give us a red flag to alert us! I hope you find answers on friday, I have had 4 decompressions and my amazing neurosurgeon (who took me several yrs to find!) is very well trained with chiari, and all the other known diseases that come along with it. I went thru the double vision, (more like quadruple vision…and I know how scary AND annoying it can be, esp when your trying to work!) I had to go on topomax, and that helped with my migraines (I still get them, but not daily, and it took away my vision issues overnight!)

My inner ear over the yrs and with the decompressions, has developed “severe mastoiditis” I lost my hearing on my right side, and my ent dr told me that because I was born with chiari, everything else formed accordingly. SO…when my scull was “remodeled” it more then likely threw everything else a little off. I am currently on an antibiotic regimen to keep this under controll. Im wondering if your issue is somehow related?! They found my mastoiditis by doing a brain mri. The ct didnt show them. So I think its a great thing that your getting these scheduled!

With that, I want to remind you that your NOT alone, and you WILL get thru this! Thinking of you and hope you get some answers soon! Take care!

13

YOU HAVE TO READ THIS... ALL OF THIS...I am now 43 years old and finally came across the main culprit .. meaning decompression of brain/ craniotomy with a duraplasty and my C1 and C2 vertebra were sawed down to be made convertible. Chiari One malformation. I had the surgery on 1/7/2016. I had the journey of a life time. I was a social worker and my career was booming. I have never not had a job in my life. It started on 8-14-2013. The night before I WENT to bed I was fine and the next morning I found myself with vertigo ( falling literally into the walls, along with nausea and of course headache that was throbbing. My vision was wacked. I was always 20/20.) I DID not even have a PCP as I always worked too much and went to Quick care for colds or strep throat etc. etc. I do not know why but that day I knew something was so wrong. I started with an eye doctor. Luckily my parents live close and took me. The eye doctor said " you are falling to much", I AM afraid you have a brain bleed and you need to get to the hospital immediately. I did as she said and found a PCP that was assigned to me during this process. The good news was I did not have a brain bleed or clogged arteries in my neck, however there was no definitive answer to my wobbly, vision, nausea, severe light sensitivity, motion sensitivity and last of all I could not track anything with my eyes- will get back to that issue later. The new PCP set up an appointment for a neurologist but it was not set until 10/2013. In the meantime I was given antivert and Phenergan for the nausea. This went on and on.. I continued to lay around for a week. Then I started my journey trying to work in the field. I was pulled over by the police twice for crossing the center line. I was dangerous and knew it deep down but it seemed as though no one really cared. In September of 2013 I was in the field and had to literally hang on the walls to exit the home. My heart felt out of control. I made it to my doctors office and actually said" HELP ME" SOMETHING IS NOT RIGHT".. My pulse was at 190 and the EKG showed I had A-FIB. I then was transported to the hospital and given aspirin and a heart monitor was put on me to wear for a few days. I was immediately put on blood thinner and heart medication to control my heart beats. Following this I was set up for a sleep apnea test ( I was overweight) but only weighed around 160 pounds. That test showed I was having major sleep apnea problems. The journey continued. I STARTED with getting tremors in one hand that led to numbness and tingling. I THEN got a lot of new eye diagnoses from a neuro ophthalmologist, showing ocular bobbing, nystagmus and way to many other things to list. Wore sunglasses on my head constantly. Any stimulation in stores, malls, grocery stores, was too much. I would fall in the store. Again, No one seemed to care. Then that led to major motion in a car problems. I actually got to the point along this journey where I could literally not take in information while driving. Like I could not concentrate if more then one lane was going on. Ironically enough I found that I could no longer put my car in reverse. I COULD not look up in the sky or ceiling or I WOULD puke. My headaches worsened, especially with any exertion such as coughing, bending over, etc. I ALSO was loosing my skills of multi-tasking. The neurologist I SAW said my MRI was NOT remarkable( AKA- NOTHING SHOWED UP WRONG). Although he did suggest to test me for MS but of course my PCP did not follow up on that either. This entire time my life was in chaos. I always had anxiety but I was in major decline. I FELT like I was going to die. In all seriousness, I felt that everyone was missing something big. This leads me to December of 2015. Remind you that I was putting coping measures into place just to stand, ride in a car, block the light from my eyes, puked all the time, and knew this was not right. December 22,2015 I HAD another doctors appointment with my PCP. Nothing had changed all symptoms were still going big. I asked for a Lymes test. I have no idea why I did it but I randomly asked. Well then came two or more tests confirming I had it. CDC confirmed it and I was then put on major antibiotics for 5 months. I asked to see a specialist when learning of Lymes but I WAS TOLD he ( PCP) would take care of it. So once again I WAS thinking this is Lymes disease. In May of 2016, is when other concerns came to be. I COULD NO longer multi-task at all, and cognitive and speech starting playing more of a problem. My memory was not the same. I was getting lost in places I HAD BEEN several hundred times, my spinning was still in play, along with headaches, vision was jacked( double/blurred/tripled)....I told my PCP that I was going to MAYO in Rochester because I wanted my life back. He didn't act to excited and talked about psych stuff a lot. Well in my background of Psych , I figured I WOULD rule out any Mental Illness and I DID just that. I was dx officially with situational depression, Generalized Anxiety, and a urine collection was done that showed I WAS low on dopamine( which is weird).... So I pulled out of work on 7-1-2014 and went to Mayo in August of 2014. I GUESS I presented wrong while there, as I ENDED up with vestibular brain damage and major rehab was recommended. I had to go back to Mayo for the second trip in 10/2014 where Mayo did further testing. I also was told I did have more of a brisk as well . I forgot to mention I can not take SSI/SSRI medications due to 2009, I had a rare and fatal reaction to Pristiq which I WAS put on prior to a hysterectomy. One pill XR pristiq caused a Neuroleptic Malignant Syndrome which landed me into the hospital with all of my organs shutting down along with over a 106 fever. 1 our 10, 0000 people are the statistics for NMS. At Mayo they were concerned with low dopamine, my sleep apnea and of course my loss of balance. Being that I had NMS on my chart they thought they could make a mixture that would be safe for me to take to help restore Serotonin and Dopamine but by the time I left the bad news came in and Mayo felt it was too dangerous to administrate or even try these medications. By the way, Mayo also gave me the same psych diagnoses of situational depression/anxiety. So I came back home found a rehab to do my vestibular training at, and while there the group felt like I had something else going on... So more eye diagnoses were given. No progress was noted ( O.T). and finally after more time it actually led to a simple eye doctor that insisted while reviewing my files from my original PCP and my MRI at Mayo that I had a significant Chiari one and that someone should pay attention to this dx. After more time, this man actually found me a neurosurgeon and made me an appointment at University of Chicago. THE KEY TO ALL THIS IS THE FOLLOWING..... YOU NEED A ( C.I.N.E MRI.) NOT just a MRI. It has to be a C.I.N.E. MRI kind. Within an hour the surgeon said "Oh my God, after two in half years, why in the world did everyone fail you). He explained my CFS fluids were not running correctly plus my skull was too small for my brain and that my brain was droppy all the way down to C2 vertebra. He said you are as SYMPTOMATIC as hell and its all over your other medical files He explained this condition was actually smothering the motor skill part of brain which includes VERTIGO/BALANCE/SPEECH/MOTOR MUSCLES/EYE PROBLEMS/MIGRAINES. He said he was disgusted with the care that I RECEIVED. The good news is I did do the surgery on 1/7/2016. I am coming back slowly. I know this has been a long story but I hope someone out there reads this or it helps someone. I am fighting the good fight, working hard, self rehabbing myself, trying to get rid of my old coping mechanisms ( I was told I was in survival mode for 2/12 years.) and it is tough. My eyes ( by the way in Jan of 2015 is when my left pupil blew out) and I lost sight....however within 24 hours after surgery my pupil went down to normal size and my sight was given back to me. The "dancing of the eyes" returned to somewhat normal, surgeon said "so much improvement" I am not back to work. I am getting it all back slowly but was told that everyone responds differently to treatment after the surgery but I AM a fighter and will continue to fight. Good luck. Sorry for the book, HOWEVER I felt it was necessary. I probably spelled thing wrong but I am working on that too. CINE is the answer. University of Chicago was finally my answer. I believe we all go through journey's, I don't know why my journey took so many left turns but I guess that was/is the cross I was given to carry. I still am fiscally as I have not had a paycheck since 7/1/2014, and things are tough but I believe in something greater and I have faith all will work itself out.

14

Wobbly, I am also new to chairi and the practioner that ordered my MRI is new in practice. She referred me to a neurologist for the headaches. They will work with me for the headaches and send me to a neurosurgeon if they think I need it. I found only three neurologist in a 100 mile radius that works with chairi. I have asked for a refferal to a neurologist in one practice that has a four star rating from patients. They were impressed that she would spend time explaining everything to them. My thinking is once I have her input and she feels that I would need further treatment she will refer me to her partner that does chairi surgery.

After doing physical therapy for my back I realized how much pain I had gotten use to.Iam taking over the counter pain meds for another condition I have and I am going to stop taking them to see how bad the headaches are. A doctor tol me that I have a high pain tolerence.

I have had migraines for many years which have lightened up in the past maybe six years. I went to the practioner for a new kind of headache which is a sharp pain at the top of my head with excertion, lifting, reaching or bearing down.

I hear my heartbeat in my left ear at times and have been told it's my b/p which is under controll. Any practioner I have seen just ignored my c/o tingling in my feet. I have been diagnosed with depression and I have been tired all my life. Recently I fell for no reason and had a dizzy spell. I have had spells of light headedness which has been contributed to an irregular heartbeat which is under controll with medication.I want a practioner that will look at all my symptoms, sort them out.

Be proactve, learn as much as you can, write down all your questions, be persistant in getting them answered, research the neurologist in your area.Keep in contact with the group.Read the information section on this sight.

Remember you are not alone.

15

I know this is very hard to take in all at once, but my wife has educated herself and had to be her own advocate. There are books out there to help you with learning. Sites and talking to other people who experience the same things you are help too.
Having chiari malformation for her really does concern the entire family. I handle her condition with understanding and a lot of prayer.
Getting a good set of doctors involved in your care helps too. Try to understand that you have to rest and sleep. Some days are better than others for her so understand with condition you may gave a flucation of symptoms.
Remember that each Chiarian is different and your doctors will know how to treat you according to what your pain level.
My wife has a great outlook too and tries her best to be educate others who suffer with this condition.
My thoughts are with you and your family.
A educated patient makes for a great patient.
Best to you,
Steve

16

Being unsure about all of this is very scary. I was newly diagnosed just a couple of months ago. I have endured blinding headaches when straining, sneezing, coughing, laughing, etc. for about 3 years. I was diagnosed with migraines, cluster headaches, etc. I went to see a neurologist, but it wasn't much help. I finally had a MRI done on my brain and that's how it was found. I just had a full MRI done on my spine. The vertigo is what really scares me.

Your work place should be more supportive. You didn't ask for this, and you are not faking it. Surgery is a serious deal and your work should not threaten you with firing if you have to get surgery. I'm sure there is someone you can talk to to see what your rights are at the workplace.

SOCCBBALL3 is correct, there is FMLA that does protect you. Now granted, it is unpaid leave. Does your workplace have a sick bank that you give to? That may help you. If your work does threaten you, then legal action may be necessary.

We are all here to support you. Please let us know how your progress is going.

17

Hello Wobbly, I feel your pain and will send positive thoughts your way. This is a hard time for you, stay strong and be firm with your docs, they will try to dismiss your pain and symptoms, we have all been through this, different but the same. I have had 2 decompression, 1 with the dural mesh. Make sure you find docs who know what a chiari is, many do not. We are all here for you, you are not alone. I myself fall, it sucks , but we will get through it together.

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Kim Rivas said:

Hello Wobbly, I feel your pain and will send positive thoughts your way. This is a hard time for you, stay strong and be firm with your docs, they will try to dismiss your pain and symptoms, we have all been through this, different but the same. I have had 2 decompression, 1 with the dural mesh. Make sure you find docs who know what a chiari is, many do not. We are all here for you, you are not alone. I myself fall, it sucks , but we will get through it together.

19



Kim Rivas said:



Kim Rivas said:

Hello Wobbly, I feel your pain and will send positive thoughts your way. This is a hard time for you, stay strong and be firm with your docs, they will try to dismiss your pain and symptoms, we have all been through this, different but the same. I have had 2 decompression, 1 with the dural mesh. Make sure you find docs who know what a chiari is, many do not. We are all here for you, you are not alone. I myself fall, it sucks , but we will get through it together.

I am fortunate to have a great support system with my husband and sons. There are times you have to lay down for awhile, I have a big ice pack ,I also use peppermint oil and deep breathing as in meditation. It is hard at first depending on your pain tolerance. Alot of pain meds make you dizzy, like you need that. I hope your work learns to cooperate, I got my disability only last year. Had to get an attorney, it was worth it. Stay positive we are with you.

20

Holy crap, you have been thru alot, my journey began Jan 1, 2001, I was a nursing students working graveyard and going to school. One night the room started moving and I slid down the wall behind me. The charge nurse on duty had me sit and drink oj, the thought it was my diet and work schedule. I have bee diagnosed with Meniere'so disease to depression, poor diet, anxiety, you name it. In the beginning I just wanted an answer, had ear surgery I didn't need, you just get so tired and want to kmow what you have, please name it and fix it. My son's were young at the time and labeled my episodes as "Weird ", it stuck, now it's oh crap Mom'said weird. I am 10 months out from my second decompression, this one with dual mesh. My brain slumped, I was like, what the hell, they don't tell you that your brain can move over 8cm, I fell on the ice inJan, and am going through tests. I am just tired of being "weird",and want a day still with no vertigo or pain, sorry about complaining, I could be worse, I try to stay positive and I do yoga and meditation. The med don't always help. I will send positive thought to all of us with this pain in the button condition.