Brand new member bewildered and scared

Welcome Greetings and Introductions
21

Dear Wobbly, I feel for you. I was diagnosed in May 2012, I had been falling most of my adult life. Light sensitivity, headaches, actually prior to surgery I could not call mine headaches. The pain radiated from my scapula to the top of my head, It was running along the occipital nerve. Went thru pain management, it only made things worse. My pain as I described it, Faint and clammy feeling. (Cleveland Clinic advised that is the kind of pain the indicative of going in and out of shock for over a year) Doc always said that would be a 10+. I ended up at the Cleveland Clinic after many incompetent Docs, (I don't mean that lightly, many had not dealt with this problem, as it was so "Rare".)

Cleveland Clinic did my trans-oral decompression, on Dec. 10th 2013, then on Dec. 12th, decompression thru back of neck, with bone graft. I was placed in a medically induced coma. My first consult with Cleveland was incredibly insightful and informative. They basically said if surgery wasn't done soon, within next 8 to 10 months, I would become immobile on one of my falls. The surgery changed my life. However, due to all of my falling, I'm still dealing with the ramifications, had to have rotator cuff repair/surgery August 2015, surgeon said it should have been done back in 2013, but he knew and understood due to Chiara, No way would I have been able to endure surgery, pain from that, then rehab. I'm meeting with another neuro surgeon this coming Monday as my L2,L3, L4 and L5 have been basically crushed/ruptured from all my falls, that I'm looking at more surgery,

On the bright side according to my eye Doc my eyes had a 75% change, For the BETTER...!! He said there must have been tremendous pressure on my optical nerve, I can also hear better!! I use to vacillate between having a bionic ear, hearing so well it actually hurt inside my skull, to muffled hearing. I don't know where you live, but Cleveland Clinic, Dr. krishnaney and his team gave me my life back. I wish you the warmest regards and can understand all of the dynamics effecting your daily life. It is incredibly scary and the feeling of isolation due to fear!! I'm sending a telepathic hugs and prayers your way.

I only mention Cleveland Clinic because some people on this site have had more than one unsuccessful surgery. Due your research and make sure the surgeon has done many, many of this type of surgery. I'm hoping you live somewhere near Ohio, I live in Michigan. It was a hassle and expense going to another state. But well worth it, I feel like I'm a walking miracle...! Take care and keep the faith.

Sophie

22

Hello

Welcome to the sight. I was scared and confused back when I first started with the symptoms the end of 2013. To this day I have the been to 5 specialist and they all seem to have there conclusion as to what is happening to me. The regular neurologist that I see at Kaiser basically came out and finally said she could not figure out what is wrong with me.

This last year I decided to take a different approach to what is happening to me and come to terms with it. I have to live with this and I needed to wrap my head around the problem and figure out how I could make it better for my self. I decided to take each day as it came. If it is an OK day and the pain is not at a 10 a do things. When it is a 10 I take it easy.

I have spent a lot of money on all types of therapy, massages, chiropractor, acupuncture and acupressure massages. Nothing seems to help. It all made me feel worse.

I am finally going to UCSF to see if they can decided what I have. Chiari was one of the first things on the list, but I now have 2 NS that are saying it is not what is causing the problem.

Has I mention take each day as it comes. Do not let it consume you life and forget to live. I tell myself everyday keep moving and do not stop.

23

Wow, wobbly, lots of supportive responses. I know you are in the UK so the employment laws are different to the US where many of our members are but nevertheless you do have employment rights and I agree that whoever said that to you is skating on very thin ice. HERE is the link to the government website but I would suggest that you contact your local Citizens Advice Bureau for help, information and advice as soon as possible ... they will be able to guide you. Kindest, JulesG

24

Oh goodness everyone, I cried when I read all your kind words. Such a response is going to be give me so much support over the coming months (years? Oh my!)

For those interested I do not have a diagnosis at all yet, only a neurologist who has a hunch

And as for work I have mostly used up all my paid sick entitlement already so any more time off would be unpaid. I live in the UK and have been looking at claiming assistance of some sort if needed. I will cross that bridge if I come to it

Thank you all so much, and wish me well for tomo row

25

The same one who have already brought you through so much is going to bring you through this. This is just another test that will make you stronger and wiser. But most important you are a strong individual who can overcome anything.

26

You are definitely not alone. I was around 51 when my when my symptoms starting getting worse. First I was told I was starting to slur my words. And every time I would say something I tried to speak slow so I wasn't rambling. The weird sensation/ headache where I had to pull my head and neck tight to relieve the strain and the weird feeling in my head when I would bend over cough and even straining to to the bathroom was very foreign to me. I was holding down a very good job. and my neck was becoming impossible to move side to side and up and down. Tingling in my arms. I went to chiropractor for my neck and back. Bad decision, not knowing what I had. Went to numerous neck back doctors had an MRI with nothing in the report about Arnold Chairi, only some arthritis . Went to nerologist that was a joke. He did every test for nerve damage. I had to take a leave from my work. I started stumbling and dragging my feet. I thought I had a brain tumor. Finally I looked at a report from the neck doctor and it had noted Arnold Chairi and Meyoingencele a sack at the end of my spaine. I researched these things online and this is how I knew I had Arnold Chiari. Kept reading and made an appointment with the nerologist again. He reviewed and did another cat scan and agreed I had Arnold Chairi but would not recommend surgery said was only a ACI. He told me I was emotional. To shorten this I have an heart problem, called arotic insuffeciency which is not mild anymore. Could be from AC or I also have an inherited disease Kidney and Liver called Polycystic Kidney disease. I must of had an Angel looking over me for sure because I was in Macy's and the girl working at the counter advised me of her friends doctor for neck and back who helped her so much. I was living in Sacramento at the time and the Dr. is located in Stockton CA. Finally a Dr that knew all about it and his partner in the office specialises in AC. I had decompression surgery on 8/20/04 and very successful, although my spinal fluid was leaking and he had to schedule a 2nd surgery to open me back up and seal it up. I have a good quality of life since then. I do experience some symptoms. extremely tired sometimes. I go to the gym. I decided to retire a year early from my job I have worked over 40 years. I am 63 and it's time. I think I get quick memory lapses could be from AC. Just say lots of prayers and know there is hope to relieve some of your symptoms. Your could also file for SSI state disability if it is so bad you cannot work. You can just go online and sign up. Prayers for a great Dr. for you. Beverly

27

Hi Wobbly,

I too have Chiari, there are a lot of us, and it doesn't mean you have to have surgery. I also have Intracranial Hypertension with mine, and I've had 3 surgeries for it, and have came out fine.

I don't believe that your job can fire you for illness. I know there are ton of attorneys out there that would jump at the chance to fight them if they did. Don't read to much stuff, it only scares you, and you may not even experience half of it. Most of my disorders are kept under control by medication.

The key is to find a good Neurologist. I don't know where you are from, but I highly recommend David Gelber of Springfeild Clinic, here in Illinois. A good doctor makes all the difference.

Stay in touch and know that you are not alone. I was terrified, but I did what Dr. Gelber suggested, and by the grace of God I'm doing alright.

Dee

28

Hi Wobbly like everyone has said know u r not alone and no not everyone needs surgery I am 34 and was diagnosed at 24 and I have managed my symptoms for 10 years now Dr’said want me to do surgery but with lifestyle and diet changes I have been managing quite well I did stop working full time as I had a desk job like you and too many hour on the computer is too much to handle. It’s going to be frustrating at times but you will be just fine if you allow yourself to stay in the depression of your Malformation u will have a poor quality of life. Learn to have a sense of humor about it and know your limits listen to ur body and it’s OK to feel like crap! We Chiarians are fighters some of us win just by waking up in the morning but if we get up we win! I pray you are able to find peace and learn to find comfort!

29

Find a Neurosurgeon who specializes in Chiarians I have most of the symptoms u do minus the nausea. If you can take short term disability here in the states it will protect your job here its against the law to fire due to medical issues. Education is key for both Chiari Malformations and ur rights as far as employment. Know not all Dr’s have experience in Chiari and that it’s OK to seek a new Dr if u feel like they r not listening.

30

Hang in there! Like everyone else said be sure you have a doctor that specializes in Chiari or they don’t understand! Some meds that hey give to help some symptoms actually create other symptoms! I had decompression surgery 6-7 years ago that helped for the most part but it’s just a part of my life! Listen to your body! If you have a “chiaroscuro day” stay in the bed!!! Don’t over do it because when you do you pay!! I suffered with many symptoms since I was a kid! It was not until I was an adult they diagnosed me. The pressure became to much on the brain is why the surgery… Never recommend for symptoms alone! Headaches were better for years but returned with a vengeance last year and I have a headache specialist working with me now trying out new medications along with muscle relaxer! Monthly massage I have found has been a great help! God Bless and know you are not alone in the fight!

31

HYDROENCEPHILITIS? sorry about the caps balance being off headaches don't know if u have any bladder issues but this too is a symptom just a thought I developed this after my decompression surgery <3

32

Hi Wobbly

I suggest that you try and have an attitude of being grateful you are getting an MRI and being grateful you have access to neurosurgeons . If they do need to do a duraplasty and or arrange for more space for your descended cerebellar tonsils to sit, it will result in you feeling better than you do now.

Like you when I was first toldI was to have surgery on my neck , I was very afraid I might die in the operation , leaving my two teenaged children without a mother , and I was a solo parent at the time. I put off my operation for ages .I wish I had not wasted all that time as it was stressful for my children seeing me get sicker

I had the six hour operation done by an very kind and intelligent neurosurgeon here in Wellington New Zealand .I had a duraplasty put in and a foramen magnum decompression and a laminectomy in 2004

The outcome of the operation has been the relief from constant stabbing pain like you describe , being able to laugh without pain , having vast improvement in my hearing ,and the knowledge that now I do not face tetraplegia if I have a fall . I also can play my guitar again in public performances, as my fingers had been starting to seize up ...I can walk normally now,, use a computer without feeling dizzy , and even dance..

I got counselling support to gain courage to have the operation. The best help I had was from a counsellor from the New Zealand Brain Injury Association . I suggest you see if there is an association like that where you come from ...

I am a guitarist singer -songwriter publishing music online under the name Madeleine Lane NZ music (Google) and I perform regularly in public again .Recently I was told by the neurosurgery registrar I no longer have to have 18 month MRIs to check everything is Ok and it is so good to feel relatively normal and have a positive future ahead of me.

All the best Wobbly

P.S suggest you register (free) with MEDLINE on Google to keep yourself informed ..a lot of doctors do not know much about chiari and syringomyelia and that site has excellent information .

33

I know how you feel. I was diagnosed 4 years ago at the age of 52 having suffered excruciating headaches for years. 4 years later I don’t feel as if I am any more informed now than I was then. A recent MRI has shown that no action is needed. I just live with it day to day. Good luck with your scan.

34

Just before my Shunt was replaced and this last year after my eyes also went. My vision is 20/20 just doubled. I met with Neuro Optamologist this last year and have been working with him to get my eyes back. I am currently wearing prism glasses to help with double vision. Eye surgery may be required in the future, though with Decompression surgery on the horizon its a bit of a holding pattern

35

Wow.....I know the overwhelming feeling.....It's scary and painful. Ryan, I don't know where you live. However, my best advice to you is find a large Hospital doing research on Chiari. I live in Michigan and luckily Cleveland Clinic (Ohio) is and has been doing research on Chiari. That is where I had decompression and fusion.....major surgery. A few months after, I saw my eye doctor, he was stunned. I had 75% improvement, For The Better. He could not imagine the pressure I felt inside of my head. Sending hugs, Keep the faith......

36

Hello, I’m new to all of this - I was wondering if you could help me better understand Chiari. I am diagnosed with Chronic Lyme Disease and some coinfections, and have had Cipro poisoning in the past. Lately though, I’ve experienced new/more extreme symptoms such as: my head feeling “full,” ear fluid leaking, neck swelling, crunching sounds in my head, and increased head pressure. This can increase when I’m laying down, or minor activities like chewing or talking. I have other symptoms (disorientation, poor vision/hearing, and right arm tingling/numbness), but it’s really the head pressure symptoms that can debilitate me for days at a time. Can anyone help me find a good doctor or any information on how to get testing done? Thank you so much for helping.

37

Hello Honeybewell, welcome to our Community.

So that you get most views and responses to your questions can I suggest that you copy your post and open a new discussion with it. It's easy to do, just go to the Home page and scroll down the centre column Forum until you see the "+ Add a Discussion" ... click on that and away you go.

Also be sure to check out the articles in the Chiari Info for Members section and, in particular, you can search for a Chiari doctor via the Doctors List.

Let me know if you're having trouble navigating/using the site.

Kindest, Jules

Honeybewell said:

Hello, I’m new to all of this - I was wondering if you could help me better understand Chiari. I am diagnosed with Chronic Lyme Disease and some coinfections, and have had Cipro poisoning in the past. Lately though, I’ve experienced new/more extreme symptoms such as: my head feeling “full,” ear fluid leaking, neck swelling, crunching sounds in my head, and increased head pressure. This can increase when I’m laying down, or minor activities like chewing or talking. I have other symptoms (disorientation, poor vision/hearing, and right arm tingling/numbness), but it’s really the head pressure symptoms that can debilitate me for days at a time. Can anyone help me find a good doctor or any information on how to get testing done? Thank you so much for helping.

38

Omg I have chiari and did not associate my hearing loss with it so something new to look into. My hearing has been declining for the past year. This is so confusing chiari has so many different symptoms it is so frustrating I am so sorry for anyone who is going through this… Be strong hang in there… Hold on to the good days :slight_smile: