Hello,

I was recently diagnosed with Chiari I, and I've been steadily thinking about some of the things that have been happening to me over the years, and wondering if they are related to chiari.

One, blood in mucus
Two, after sneeze, I lose my voice for about half an hour.
and three, pain im my hand, as if I strained a ligament, pain that won't go away.

Has anyone experienced these symptoms?

Hi DPatt~

Welcome to the boards. Its great that you were given a Chiari diagnosis and not just wondering what is wrong.

Chiari can cause many symptoms and vary in each of us individally. Blood in mucus is not one of these and I would definately address this with your primary care DR. Its so easy for us to blame everything on Chiari but we have to be careful because some things could be unrelated and become ignored. So check that out for your own good!!

Nerve pain is common and I have had pain in my hand and wrist. This was before my dx and was told I had a pinched nerve. Its not fun.

I haven't personally had any voice changes but have read other peoples stories and complaints about this.

Have you done much research on Chiari or have a treatment plan in place or are you just watching your symptoms at this point? Research and being knowledgable in this condition is your best defense.

take care

cindy

Thanks cindys601,
You seem to be the chiari guru here at the boards. I was just dx of Friday, so I'm still in denial, but I swear I've had symptoms for years. I remember about 12 years ago, everytime I would sit up, I would have a dizzy spell that glassed my eyes and almost caused me to fall off a ladder at my job, it lasted about a month and hasn't happened since. The major symptom showed up about 2 years ago, the pressure headaches, I love to laugh and it's killing me that I can't enjoy laughing without my head feeling like it's going to explode.
One more quick question, should I be worried about working, can I hurt myself worse since I have a fairly physical job?

Hi Dapatt~

Wow, you are very new to this. I can understand why you are in denial. Its alot to bite off and understand for sure. And saddly it is very misunderstood by the medical community. Most Dr's believe that only a large herniation can cause symptoms but infact thats untrue. How did you come to realize you had Chiari? What was the size of your herniation, if you don't mind me asking?

We can live with this for many years not knowing we are experiencing things that are related. Like the dizzy spells you had. I get that same feeling, as if my eyes are filled with moisture and they get very blurry. I used to think the things that were going on were normal and it happened to everyone. Now that I have a name for this, I'm finding out that others don't have these strange goings on as I do. I just never asked.

And laughing, I get terrible pressure from that too, but then thought everyone must have the same. I love a good laugh but suffer for it after!! And laughter is such a healthy thing to do too. So I can comepletely understand what your going through.

You asked about work and many people work and do just fine. But heavy lifting, pulling or pushing can make things worse, so be very careful. Also, if your climbing around, your at risk for falls and that can also be dangerous. So be very cautious. Head trauma can cause more damage.

I had mild symptoms since I was 22. I'm 42 now. About 4 years ago, I was rear ended in my car at high impact and it has been a down hillslide from there. So I treat my body with tender loving care these days. LOL. If its a struggle to do it, I don't. So awareness is good.

You called me the chiari guru. LOL When I was diagnosed, there was such little information here on the healthboards. I know there are others out there who are struggling and wanted to get some support and information out there for them. Its scary not knowing much about all of this. So here I am and if theres anything I can help you with, just shout out!!

Take care

Cindy

Hey all,

I'm new to the boards, but definitely not to Chiari. Was dx and had surgery 10 years ago. Surgery was probably the best thing I could have done for myself back then, but now I'm having some serious complications again.

One of my nsgs main concerns when diagnosing me was my very rough hoarse voice. It just changed overnight 1 night in high school and never returned to normal. Changes in voice tone is definitely a symptom of chiari.

Hope to talk to fellow chiarians.....

Tina

Hi Tina~

After 10 years, you definately know what this life is like living with Chiari . Did you have the decompression surgery at that time or other surgeries as well? I am just beginning my journey. I was diagnoses in April and had tethered cord surgery June 16th.

Your surgery must have given you many years of relief so I'm happy for you for that and sorry to hear now that you are having some more serious complications. Have you seen anyone to determine the problem your having or a plan of action in place?

Its great to hear from a fellow chiarian as well. Welcome to the boards!!

Take care

Cindy

Hello again cindys and welcome tina,

Thank you first of all for the help and support, I still have so many questions since I've never heard of this until last week. I told my family doctor about the headaches I was having, and he very humbly said (which you don't see a lot in doctors) that he didn't know what it was, so he scheduled me to have a ct scan, that led to an MRI, and that led to my diagnoses. My doctor sent me to a neurologist and he said that I had Arnold Chiari Malformation(Arnold always gets left out it seems:) He said that my herniation is 1 cm, (I guess this disorder was discovered in Canada, metric system) and more than likely I'll need an operation. That's where I'm at now, I have another appointment on the 28th, where he will be flooded with questions.

I hope you both get to feeling better soon, even though we're all a little different, it's comforting to know others have been where I'm going and have done well.

I guess I am now a Chiarian!

Hi Dpatt~

I remember when I 1st found out about my ACM too, and theres just so much to learn. I'm still learning all of the related disorders and so much more. So in time, you'll gain knowlege and understanding. I'll help answer any questions if I can help. But it sounds like you have a great couple of Dr's on board and your diognosis was quick. So be greatful for that!!

They are telling you you'll need surgery which is so much more than alot of us get from Dr's. Most often we are told that Chiari isn't causing our problems. So you are extemely lucky with that!! I know when you hear you'll need surgery that it is a scary thing to hear. Though there is no cure for chiari, surgery can halt the progression and at best, allievate symptoms. Left untreated, there can be permanent, irriversable damage. So surgury is well worth it, in my opinion. But it is a personal choice and only yours to make. Thats why I suggest learning as much as you can.

There is alot to learn that is misunderstood by alot of drs so my suggestion for you is to learn as much as you can before you go so that you will be able to advocate your health in the best possible way. 10 days till your next appointment isn't bad at all. It will be here before you know it.

We definately can be called a little different, us chiarians. :D "normal" people will never truly understand the challenges we deal with and the pain we endure on a daily basis. If only they could walk in our shoes for just one day. For me, I have learned acceptance with having been diagnosed with chiari and thats how I cope. I listen to my body, rest when I need it and don't overdo. Life is definately different but my motto is "Adapt and overcome!!"

So welcome fellow chiarian!!;)

Cindy

Thank you so much for all the assistance! I feel like I'm better equipped for what the future holds, I'll keep you posted.

Derrick

Hi Derrick~

Do let us know how your appoinment on the 28th goes. Keep us posted!!

Cindy

Hi Derrick and Cindy,

Derrick-Honestly, I'm amazed that your dr told you he didn't know and referred you on. That rarely happens with this lovely disorder. I've been told that I have mental problems, that a herniation of 20mm couldn't possibly cause "all these problems" and all kinds of other garbage. I just bet you will have a list of questions for the dr on the 28th. Good for you!

Cindy-The only other surgery I had was a csf leak repair. I don't have tethered cord per one of my many MRIs. My problem now is I have cerebellar slumping. The dr who did my surgery did it too aggressively from what I gather and now my cerebellum has slumped down into the hole. I've had it for several years, but now it's getting to where the fluid is getting blocked again, and I'm dizzy and falling alot. I did see Dr Frim in Chicago when I was 1st diagnosed with the slumping and he was wonderful. He wanted to take my dura patch out due to massive scarring, and all kinds of other stuff. But I'm not from Chicago, and back then people very rarely traveled for surgery. I'm thinking of going back to him.

Take care
Tina

Hi Tina~

I'm so sorry to hear that your having more difficulties. I have heard others that have had a too agressive decompression and had problems such as yours. That is quite scary to entrust our bodies to Dr's that are not experts in these surgeries, only to have them repaired by another. I do hope your able to get the help you need to "fix" this. This is important for you to follow through with.

As far as traveling goes, I think its well worth the effort to get it done right the 1st time. Or to go for a fix to a reputable chiari expert!!

I wish you well!! Take Care

Cindy

Hi Tina,

I really feel that the reason I received an early dx is because of people like you and Cindy paving the way, forcing these doctors to look deeper into this disorder. It's just like anything else, you're our trailblazers, and we newbies benefit from your blood, sweat, and tears. Thank you.

I'm with Cindy when it comes to traveling, best to get it done right the first time, it's something I'm contemplating, even way out here in California, only the best to cut my head open. If anyone knows of any Chiari Specialists in California, let me know.

Derrick

Hi derrick~

There is a list of Chiari specialists that I refered to and Dr. Ulrich Batzdorrf in los Angeles CA was listed. I have no personal experience, nor have I heard of him myself. I only know of TCI in NY and DR Oro in CO. But this list shows a star next to dr's that are either a Chiari expert or recomended by peers, many patients, or are known to have expertise in the field of Chiari Malformations.

I would definately research any Dr before letting them do surgery and know in your heart they are reputable.

Take Care

Cindy

Hi all,

Latest update on me is that I have 2 MRI's coming up, one on the 31st for my cervical spine and one on the 1st for my lumbar spine. They want to have these results before my appointment, so the moved the appointment with my neuro to Aug. 7. Then I got a call from a neurosurgon for an appointment on the 13th, so I'll be busy for the next few weeks. I will update you all when I know more. Thanks for the support.

Derrick

Hi Derrick~

Boy, you definately will be buisy!! And you've been very lucky to get appointments so quickly. For me, with every new Dr I saw, there was a 3 month or so wait so it was a drawn out affair. I'm glad you are able to get things accomplished without the wait!!

One quick thing, you did have a brain MRI done, I assume, to get a Chiari diagnosis? You mentioned the 2 spine but the brain MRI is an important one for chiari.

I'm wishing you well in the next few weeks. And looking forward to your update on how things went for you.

Good luck

Cindy

Cindy,

Yes I do feel fortunate to be getting all my appointments done pretty quickly, and even though I know it's quick, it still seems long, but that's just the anxiety talking.

I did get the brain MRI, I didn't mind it so much, so I guess i'm not claustrophobic. I have a 1 cm herniation, but it's weird, I don't have the numbness a lot of others have, so I don't think I have the SM, but I could be wrong. I'll let you know.

Derrick

Derrick~

Just food for thought. I don't have SM but I have severe numbness and tingling. So this is not only symptoms of SM but chiari as well. I also have cranial settling which is causing alot of pressure on my nerves so maybe thats the cause? Each persons symptoms vary. Though the numbness isn't painful, its annoying so be thankful you were spared!

I'm glad your not cloustophobic. I am and I go in with my eyes shut and don't open till I'm let out!! LOL

I sympathize with your wait but it will be there before you know it. Hang in there!!

Cindy

Hi Cindy,

Thanks for the fast reply, and I'll keep those things in mind. So how are you doing, the last thing I read was that you were recovering from tethered cord surgery. How's the healing process going. Are you going to have decompressoin surgery? Let us know.

Derrick

Hi Derrick~

I'm 6 weeks post op and have healed very well. My legs are feeling much stronger after the surgery so thats the good news. But my head and neck pain is rough.

The TCI docs told me to let the dust settle from this surgery then we'd be looking into the cranio cervical fusion surgery. That scares me to death!! So I'm procrastinating making my follow up appointment. My hubby ordered me an over the door cervical traction device in hopes this will give my nerves some relief. But I know the fusion will be in my future.

Once that gets done, again we'll see the outcome and then have to determine if I need the decompression surgery. The tethered cord was a breeze, in my opinion and I recommend doing this for those that are contemplating it. Alot easier than I had thought it would be for sure.

So, you just take this thing one step at a time. The next step is going back to TCI and discussing the issues that weren't helped by the tethered cord surgery. I'll get my courage up soon!! LOL

Take care

cindy

Hello all,

I am looking for a bit of advice from people who i hope will be able to answer from experience.

I was diagnosed with ACM 1 around 4 years ago. I have quite a large tonsil extension (around 5 cm)

Mainly, I have very bad rotary nystagmous, light headedness, bad balance, bad headaches and severe dizzyness when when couching , sneezing laughing straining etc. I also suffer from quite bad involuntry shaking in my legs , but this only happens when i am tired, and comes and goes.

I have had no surgery and currently am taking medication (baclofen and amatriptolyne) to help with the symptons.

Recently though, i have started to get very bad mood swings , and i was wondering if anyone else has experianced this and if it can be associated to my condition, or if it is unrelated.

When i was diagnosed, my NS told me that this condition would not get anyworse that it was, but asked me to come back in one years time. When i returned a year later, he seemed very shocked that i had developed no more symptoms, so he had obviously not told my the truth about this condition. This has obviously made me lose a little trust in him. He has signed me off ,but he has told me to make an appointment with him if i get any new symptons or current ones worsen.

I have read up on the internet about this condition, but as it is quite rare, 99% of info i find is of opinion rather than fact. This is why i thought i would ask other ACM 1 sufferers there opinions and experiences.

thanks in advance :)

Hello Scotty,

Welcome to the board! If you've read this board, you'll see that I'm extremely new to this condition, but what I've heard from those experienced with this is that yes, this condition can get worse with time, my symptoms have gotten worse with time, and my NS has recommended surgery in my case. I'll find out more within the next couple of weeks about having surgery.

Sorry I can't help you with the mood swings, I do know that pain puts people in bad moods and it sounds like you're in a lot of pain.

I'm right now in the process of having my spinal cord checked for a syrinx. I have 3 MRI's scheduled. Have you had your spinal cord checked? Our condition is closely associated with a condition called Syringomyelia. If you haven't you may want to get that checked out asap, since it could lead to permanent damage.

Honestly, if I were you, I wouldn't want to be signed off when there is the possibility of getting relief from all those symptoms you have. Maybe it'll be worth the effort to find a NS that specializes in Chiari there in the UK. This thing still has a lot of unknowns and some doctors just don't have the answers.

I hope this helps.

Derrick

Hi Scottie, I've had syringomyelia for 30 years, and while the condition itself may not change, the effects do worsen as I get older. I now use a cane 90% of the time and have had to get a scooter for longer distances. I haven't had a lot of luck with exercising etc, doesn't seem to make a lot of difference because i can't get past the pain and exhaustion. Biggest thing is to watch your weight, because it gets harder as you get heavier and then harder to lose the weight.

Hi Scottie~

I am also a fellow chiarian. My symptoms have increased over the last few years. I have had 1 surgery in hopes of halting progression. There isn't alot of information out there on the internet. I gained alot of information by contacting The Chiari institute in New York. They are very up to date on the current treatments for Chiari. They also have videos and questionaires that will help and give you some great information.

Depression can be a symptom of chiari so maybe its possible that your mood swings are related. Many drs don't fully understand this disorder and offer false information. I encourage you to seek out a chiari specialist so you can have a better understanding of whats happening to you.

I too, had lost alot of faith in dr's until I made my way to The Chiari Institute and met with some great neurosurgeons who explain this disorder and the steps you can take to increase the quality of my life.

Things can change from day to day with Chiari and can cause permanent damage if left untreated. This can affect our whole nervous system, including our heart, breathing and much more. Unfortunately, dr's that are not very educated in Chiari don't take the symptoms seriously and we are left to suffer.

I hope you can find answers to your questions and if I can help in any way, just shout out. I'm here if you need me!!;)

take care

Cindy

Hey all,

I have an update on my condition. I got my spine mri results back and there is a small syrinx on my spinal cord, the doc didn't seem too worried about it, however, he did pull me out of work and said that I shouldn't be lifting anything over 5 pounds! He expects me to have surgery as soon as I can, but he recommends that I get out of Fresno to do it. I'm thinking about setting up an appointment with Dr. Batzdorf in L.A. since he seems to be the closest specialist. I'm getting nervous because I'm starting to feel a lot of pain in my upper back and riding up to my neck.

I'll be home from work for a while collecting disability from my job, which is only 60% of my take home income. Does anyone know or have any experience getting supplemental income, maybe from social security. Let me know if there's anything I can do to help myself, seems like money is going to be very, very tight. That's the latest.

Derrick

Hi Derrick~

You sound like your dealing with this great!! And I am so happy your in the hands of a great Dr who is aknowledging what is going on and found the syrinx. TCI had explained to me that when there is a blockage of CFS flow, when we over exert, our heartrate speeds up and those fluids start moving. But because of the herniation, the fluids are blocked and can't flow so they get backed up into the spine and form a syrinx. So your Dr is a wise man to give you limitations at this point. You don't want it to get bigger. Now to figure out where to go to get the surgery. In the meantime, try to relax and take it easy while you put the pieces into place towards the next step.

Have you done any reasearch on Dr. Batzdorf? I can asked a group of fellow chiarians if they've had personal experience with him if that will help. Let me know.

As far as the loss of income, thats so difficult and I can relate. I know with social security, you have to be permanently disabled and the process is long. Thats not to say theres not something else available that maybe someone else out there might be able to help with. I would suggest starting a thread with this in the title and maybe more will respond with they're knowledge. I wish I could be of more help there.

When I was going to be leaving my job, I decided that I would just cut back as much as possible on household bills. I was AMAZED at how much I could save just by a few phone calls.

My cell phones were a biggy!! I contacted my provider and explained my situation. We spent an hour on the phone deciding on a plan that would better work to save us money. My hubby and I both have plans because we have 5 children and we wont fit on one plan. They found things on our phones we didn't even know we were being charged for, plus cut back quite a bit of money on the monthly bills by evaluating what each person needed and the minutes and such. But the greatest thing they did for us is at the end of our call, she gave both me and my hubby a zero balance. She wiped out what we had owed which was $400!! I was amazed and truly touched by her thoughtfulness.

I then did the same with my cable company. Though they weren't as generous, my bill was definately down. My home phone was $45 monthly and I cancelled that and bought a USB phone device that plugs into my computer. I now have home phone service for only $20 a year!! Thats over a $500 yearly savings.

So it will help to decide what things in your life you can do without while your going through this. My kids were a great help in researching how we could save and on what. It made them feel like they were doing something to help with my illness. On a possitive note, you are very lucky to be able to get dissibility from your job. 60% is alot better than nothing.

Please keep us updated as you go along. Your in my thoughts!!

Cindy

Hi Derrick...I was wondering if you could tell me where on your spine the syrinx is located?I'm a little curious to know if they can be anywhere on the spine(cervical.thoracic or lumbar?).I have Chiari too(6mm) and have problems with back and neck pain on and off.Hope you have a good week! Thanx,Scout

OT: Hi, folks. I thought I'd post here in the most recent thread since I know you'd all see it. So, I just watched "Primetime Medial Mysteries' on ABC and there was a mystery illness where viewers could call in and vote on what they thought was wrong. I don't remember all the options but one was MS and the other was a "bone abnormality". What did it turn out to be? ;) Chiari Malformation!!! Just thought I'd let you know -- and in case anyone in a different (earlier) time zone sees this, you might still be able to catch the show. It aired here in the east at 10 PM.

Hope you're all doing well and a special shout-out to Cindy and scout! :)

Hi Bearygood~

How are you? I got this message too late to watch it then I realized that my tivo had recorded the show. Not very informative but at least its getting info out there for others.

There was an Extreme home makeover that did a show on a family with Chiari not too long ago. That was a good one!! I like these shows because most people look at me funny when I say I have Chiari because they don't know what it is. Its especially unpleasant when drs dont know so the more they air these programs, the more it will spike curiousity and maybe they'll want to learn what its all about.

Thanks so much for giving us the heads up on the program. I had looked at the info earlier on the program and it only described the poor man that was turning into a tree. It didn't spike my interest so I may have deleted and missed it.

I hope all is well in your neck of the woods. Its always nice hearing from you

Cindy

Hello,

I was recently diagnosed with Chiari I, and I've been steadily thinking about some of the things that have been happening to me over the years, and wondering if they are related to chiari.

One, blood in mucus
Two, after sneeze, I lose my voice for about half an hour.
and three, pain im my hand, as if I strained a ligament, pain that won't go away.

Has anyone experienced these symptoms?

I had Chiari several years ago and have had surgery with a complete recovery. Mine started out with headaches and progressively got worse. The pain was unbearable. It took them a year and a half to diagnose me. If I sneezed my head would explode and i would almost pass out. I couldn't look up or down without getting dizzy. I couldn't stretch without getting dizzy. I would be fine one minute and hit the ground the next. My hands and legs started to get numb before I had surgery. I never had blood in my mucus or loose my voice, but who knows everyone is different. Good luck and don't be afraid of the surgery, it was a life saver for me. I have had no symptons since my surgery a little over 4 years ago.

prtybleys, what a great, hopeful story! Glad you're doing so well.

Cindy, I'm fine, thanks for asking!

Hi prtybleys~

Your story is hopefully an inspiration to others out there who suffer from Chiari. Surgery is our only hope to stop the progression. You are very lucky that your journey ended there. Its so nice to hear that there can be light at the end of the tunnel.

Thanks for sharing

And Bearygood its great to see your doing well!! Its always nice to see you visiting and chiming in!!

Have a great night

Cindy

Hi everyone,

Thanks for the encouraging words, sorry I didn't respond sooner. I feel good about the surgery, I had a consultation with my ns and he actually is very experienced dealing with chiari and assured me that everything should be ok. It looks like I'm going to schedule the surgery for the middle of September. He did tell me that I have an impressive MRI, meaning that it's more than a cm herniation.
I missed all the shows, the only thing I did see was the mystery diagnosis with the young girl, but I saw that before I knew what chiari was, you never know when one of those shows will touch you personally.

Scout, I should have paid more attention to where my syrinx is, I think he said between C3 and C4, I'm not sure where that is, but I think it's high. When I turn my head, I feel pain in my upper back going up to my neck, so I think it's there.
To bearygood, I just want you to know that I'm a big fan of yours, how you and cindy take time from your schedules to answer questions and give encouragement, despite the fact that you're in pain and at times need encouragment as well, is from God, we need you, and thank you.

Derrick

Hi Derrick~

I am really glad that your comfortable with the ns. Did you end up going to Dr. Batzdorf? September is right around the corner. It'll be here before you know it. Keep us posted on things.

You'll be in my thoughts!!

Cindy

Hello, I'm new to this board and would love some help reading my mri. I've been diagnosed with a chiari malformation of 6 mm. I'verebellare suffered from headaches since I was around 7 yrs old and was diagnosed after a spinal fluid leak 3 yrs ago for no reason. I've had a cine mri which shows normal csf flow but I'm in so much pain every day now. Severe headaches and pressure in the back of my head from laughing, coughing, bending over, lifting.... My vision is blurry most of the time and my hearing is impaired from this. My neurologist says I'm not a candidate for surgery since the csf flow isn't being blocked so am I supposed to live on pain meds the rest of my life?? I'd love some feedback from anyone out there with the same symptoms.
MRI states
Cerebellar tonsils with slight protrusion through foramen magnum 6 mm. Several subtle increased signal foci on flair images, subcentimeter at periventricular white matter bilaterally, particularly at frontal horns. Major vessel flow voids identified with dominant vertebral arteron right. mastoid air cells unremarkable. Minimal soft tissue thickening of paranasal sinuses. Limited cervical cord with uniform contour.

If there is anyone out there that can decipher the above for me I'd appreciate it so much !!

Hi Susie!I am not an expert,but I also have a 6mm hernation and my last MRI in Dec.2006 also showed a thickening of the sinuses.At that time I was having lots of headaches and what feltlike pressure...I think inmyopinion it was from the sinuses,because I was dizzy for over 6 weeks.Did you think about seeing a sinus doctor....I only have a couple headaches a month now so I tend tothink the Chiari is not responsible for the pain...I have hardly any pain and we both have a 6mm herniation.Hope this infohelps you in some way.Take care. Scout

Hi Susie~

I am so sorry to hear that you are suffering so. Chiari can be a very painful illness. I would encourage you to seek out another opinion from a chiari specialist. I went to The Chiari Institute (TCI) in new york and they determine alot of factors as to weather surgery can be benefitial. I had to fill out questionairs and my quality of life was being greatly affected and surgery was offered.

There are also many related disorders to Chiari which they also evaluate. I had a tethered cord as well, pulling my brain down. I was also diagnosed with cranio cervical instabiliy, causing me alot of nerve pain.

So my advice is, alot of neurosurgeons are not well versed in chiari and if you are suffering, do get another opinion!!

I'm not a specialists and cant help too much with the terminology from the MRI, but I am a fellow Chiarian who lives with daily pain. Its tough but there are specialists who are learning more about this illness and current treatments available to help.

My heart goes out to you because I was where you were, being told there was no help available. I've had my 1st surgery and in less than 2 months, have seen a great improvement. I'm not done yet and do have more surgeries to get through but I'm fighting the battle!!

Rest is the best medice. Try to take it easy until you can get proper care!!

Take care~

Cindy

Hi Derrick...Thank you for the info...and I know that C means cervical spine(neck),because I have a slight buging disc in my cervical spine.Anyways I wish you well with your upcoming surgery and I will be saying prayers for you(happy to know that others here have faith in God).Thanks again~Scout........also I want to say Hi Cindy! and Hi Bearygood!Hope you are both having a good week....take care always.

Hello,

First of all to Susie, I'm no expert either, but from everything I read, a 6mm herniation is considered chiari I malformation, and I agree totally with cindy, there are not a lot of informed doctors out there, and it would serve you well to get another opinion. For me, so far surgery has been the only option, I'm not even on any meds! I take a couple of excedrine when I'm feeling bad and go from there.

To scout, I had a feeling the "C" stood for cervical, my neuro gave me a dvd of my cervical spine MRI, but when I look at it, I can't see anything, I don't have a doctor's eye. I don't know doctor talk either, I was looking at susie's post and all I could say was "huh?":)

To all of you, again I say thank you! I am very nervous about the surgery, I don't know if anyone else watched the surgery on youtube, but I did, and needless to say, I was grossed out. But without it, I know that I would probably go downhill with this disorder, I feel ok right now, but I do feel this ailment progressing, and I don't want to end up permanently disabled. So I'm ready. Thank you again for keeping me in your thoughts.

Derrick

Hi Derrick~

I know its very scary going for surgery. And watching the videos really puts things into perspective. I was thinking the worst when I had my tethered cord surgery but in all honesty, It really wasn't as bad as I had antissapated. And i was back on my feet quicker than I had thought.

We stayed at the variety house before and after my surgery, somewhat similiar to the Mcdonald house, which was right across from the hospital. Everone there had chiari and was having surgery. My hubby and I stayed a total of 10 days there and it was very inspirational to see all of these people come back after surgery and were doing surprisingly well.

IMHO, it is worth going through it all and I'd do it again in a heartbeat!! As you said, it can be progressive and for me it has been. I was a very active woman, working 7 days a week, mom of 3 and on the go all the time. My life has changed drasticallyover the last 2 years and I am no longer that woman I used to be. If I make it to a grocery store in a day, I'm having a good day.

The Chiari Institute treats tethered cord 1st so the decompression surgery will be down the road for me and I am ready to fight this illness and get my quality of life back.

For you, Derrick, you are very lucky to have intervention early on and VERY lucky for an early diagnosis. I had a very long journey for a diagnosis and things went down hill quickly for me during this time. The Dr's at TCI believe that an intervention within 2 years of the onset of serious symptoms can be the most benificial. If the nerves are compressed for a long period of time, there can be permant nerve damage. So I encourage you that your being pro active and I'm rootin' for you all the way!!

I'll be looking forward to your updates!! Take care~

Cindy

Good afternoon chiarians,

Just thought I'd let you know that I have the date set for my surgery. It's going to be on September 16th, with some pre-op consultations on the 10th. Today I went to the hospital to take a "swallow" test. They wanted to do a before and after examination of how my swallowing has been affected by the chiari. The test wasn't that bad, but the stuff they give you to drink is pretty thick and nasty! Baryum I think it was called, should be called baryuck! Anyway, I survived it, and the countdown is on.

Keep strong you guys, especially you cindy, I find it hard to answer people on the board because I have limited knowledge, but I realize that just somebody willing to reply, and say positive things, makes us feel better.

Derrick

Dpatt,

Hello, I was diagnosed with Chiari 10 years ago when I was 18. I had my craniectomy in 2005 and did GREAT until I was in a car accident and was rear ended. I was in my husbands brand new truck (not even 2 days old) and she was going so fast that she actually ended up with the front of her car under the truck past the rear tires. It was not a fun time. Since then I have not been able to work and I am still fighting to get disability. I was a social worker and was in the field driving a lot helping people who where disabled and on medicaid.

I get a lot of pressure when laughing, bending, stretching, etc. Even when I tilt my head to try and put on my makeup I get pressure build up in the back of my head where the skull was removed. I still can not lay flat on my back at night and I have found that when the pressure is too much I will sleep in a recliner and that helps ease it some. I do not regret the surgery in the least; my husband does not think that I would be here without the surgery; the pressure would build to the point my blood pressure would sky rocket and my nose would start to bleed. I even stroked out one time from the pressure making my blood pressure go up. This is not good for the body. The Dr stated that the minute they opened the cranium my blood pressure dropped and from that day since I have not been on blood pressure medication. It is amazing what can and can not be related to Chiari. I would be careful with straining; this can lead to problems. I fell going up the stairs (yeah, going up) because my stability is poor right now and I caused a small bleed on the brain and strained my occipital nerve. So be very careful!

I know that this may sound cruel but I got a good laugh, so I hope that you will too........ The last time that I fell and had the bleed on my brain my husband went and bought me a bike helmet as a joke. I laughed so hard that I did give myself another headache. Don't get me wrong there are days when nothing is funny and I whine but there are times that you just have to see some kind of humor (even if a little twisted). It can help you out a lot.

( removed ) Just make sure that you stay up to date on things. I keep a daily pain journal to help me and my Dr figure out what has to do with Chiari and what does not. This has really been helpful. And always listen to your body, it will tell you if you are doing something you should not or if something is not right. Trust yourself and your judgment and do not push yourself; it can be overwhelming at times!:)

Take Care,
Niki

Thanks Niki,

I appreciate the encouraging comments. Wow, you're still pretty young and making it through the pain with humor, I know I can do the same.

I've been blessed with nagging, but not debilitating pain, I'm 33, and I have the intense pressure headaches, and sore neck, upper back, and shoulders, I get spots and halos in my eyes at times and have nerve pain in my hand, but despite those things, I feel like I can go out and live a normal life. By listening to you and cindy, I definitely know to stay away from auto accidents!!!

The only time I experienced dizziness was about 10 years ago, I couldn't go from a lying position to standing without totally glazing over and falling. I almost killed myself while working on a 20ft. ladder, I went dizzy, thankfully my arm locked into one of the rungs and I was able to hold on and ride out the spell. After that I went to the doctor and they couldn't figure out what was going on, so they gave me some dramamine for motion sickness. Fortunately, (or unfortunately) the spells went away after about a month, and they've never been back since. So I've had symptoms for years, but was diagnosed in July.

The advice on not pushing myself is very important, my doctor put me on restrictions, not to lift more than 5 pounds, but I have a 1 year old that loves being in her daddy's arms. Some things are worth disobedience. But I should be careful, better to not lift her now, than to take her for rides in my wheelchair, right.

I will admit, I'm tired of doing research, there's so many different opinions of what to do, what not to do, have surgery, don't have surgery. The good after surgery, the bad after surgery, there's so much out there, but nothing definite, just opinions, I'd rather talk to you guys, who've been through what I'm going through, just makes me feel better.

Derrick

Derrick,

Hello, we must have been posting close to the same time; I just saw that you are scheduled for the surgery in September. If you do not mind my asking who is your surgeon?

I can also understand that there are times that you must lift more than 5lbs; that is my weight limit too. I can not seem to say no to my niece either when she wants to be picked up; I just try to head straight for the couch or chair with her. Sometimes it is worth the pain!

If you have any questions at all about after surgery, please let me know. It can be a hard and scary time. I have had 8 surgeries (for multiple things) and I am facing spinal surgery; I still get nervous. A good hint; keep your hair short since they will be shaving the area. I went from having hair that I could sit on; to very short hair. The good thing was I gave over 24 inches of hair to Locks of Love. The short hair helped me keep the area clean and airy, since you can not get the area wet until the stitches come out.

And you are right in the fact that there is a lot of information out there. I also find that talking to people who are going through this is a lot better than just reading online; sometimes it is more scary to read about it than talk to someone who understands.

Take Care,
Niki

Hi Derrick~

September is right around the corner. Think of the surgery as a step towards fighting the battle and you'll be fine. It is a scary venture but try to focus on something besides the fear for now. I know for me, I had thought my surgery would be worse than what it was. So I was very happy that I fealt so good so quickly. The barrium is definately yuck!! Like drinking chalk. But you made it through that and you'll make it through the next one too!!


As far as lifting, Derrick, your little girl can enjoy her daddy's arms while you sit and hold her. I have neices who I used to always pick up but since I got sick, they wait for me to sit then clinb up in my lap for their hugs. Definately not something you want to miss out on. But on the other hand, when you do have to lift her, try to use your legs to lift, it takes the pressure off your head and neck. Enjoy your little girl while you can. They grow fast!!

One last note. You definately don't need to have alot of knowledge to show support here. I'm sure others as well as myself, are just greatful to have someone to relate to that understands. Its a lonely world out there. You tell people you have Chiari and they just don't know how to react to it because most have never heard of it and they just put on a baffled face. So speaking for myself, the support we can offer here is like none other. Its just nice to have a place to go to share!!

Keep us posted with any updates. You'll be in my thought!!

Cindy

Niki,

Hi, thanks for the reply. My surgeon's name is Dr. Michael Dogali, he works out here in Fresno, and he is a chiari specialist. He made me feel good about his credentials, saying that he does about 10 of these surgerys a month, so now I'm in his hands.

As far as my hair, that's one things that as a 33 year old balding man that I'm not too much worried about, actually I was thinking about shaving all my hair off in order to save them some time.

Anyway thanks for looking out, and you all try your best to have a pain-free day. I'll keep you posted.

Derrick

Hi guys,

Well, the 16th is almost here. I've had my final pre op visit and check-ups. It seems as though these last few days have been the most painful for me. They told me that the only headache medicine I could take was Tylenol, but that never seems to work well for me, so I got the PM kind and use it to sleep. If there's anything any of you have used before your surgery that helped you out, please let me know.

Derrick

Hi Derrick~

The count down is on!! Hopefully soon you will be getting some resolve to all that you've had to deal with and you'll be feeling better real soon. As far as the headaches, I can comepletely sympathize with you. I have been in a bad way these day with the pain and pressure.

Up until this point, I have refused narcotics for pain because I don't want to get dependant so I've taken none. I was prescribed neurontin which is for nerve pain. It doesn't help. Neither does tylenol. I have been lucky enough to have been able to manage my pain by laying down before it gets out of control. If I stay up when the pain level is increasing, I'm done for and can't get rid of it even laying down.

I have found using Ice packs do helps. From what I've learned, the brain can only feel one sensation at a time. It can't feel pain and cold at the same time. So this is very helpfiul. But of course, once you remove the cold and you become normal body tempature, the pain does return. I have a freezer full of a variety of ice packs so I can alternate them. I even bought ones that strap on, to be used on the body with velcro. I wrap them in various positions on my head and neck. My family tease me about how foolish I look and even take pictures just to give me a hard time. My response is at this point, comfort is more important than beauty.:D

For the past month, I've really been in pain. Rainy stormy weather does me in and in the south east, we've had too much of this all summer. I finally decided I just can live like this any more, lying down all day and it affecting my quality of life. So when I get really bad, I've used oxycode, which the hospital gave me after my surgery. They're only 5mg and really just take the edge off, but they definately don't make me pain free. But I've had to do something.

So I went to my PCP on Tuesday to discuss this with him. I told him I'm at the point where I need help but expressed my fear of dependancy. He agreed comepletly that I should ony use the oxy in an emergency bad day level. He gave me a high dose of naproxin which is an anti inflamatory and told me to take this consistantly and in a month, if it hasn;t worked, come see him and he has some other tricks up his sleeve.

It has helped some, again taking the edge off. He said that I will most likely have to deal with some level of pain but if we can lessen it then we should be happy with that. So the last few days, that has been going ok. This afternoon, the pain hit me hard!! I tried to hold out but in the end, took an oxy. My hubby called me from work and I told him I'm in a bad way and sure enough, he said a storm was heading our way. So I was glad I decided on a pain pill to get through.

It's really a tough thing to deal with Derrick. And at times we cope better than others. If after the surgery, your still having alot of pain, find someone who you trust, to work with you on managing your pain. I have alot of faith in my Dr and am really glad he's working with me on this with the same feelings I have about narcotics.

But for you, my friend, I have high hopes that you will be the lucky one to go through the surgery , have a speedy recovery and are able to say in the end it was successful and you feel so much better. I'll be thinking of you on that day and will be sending you my wishes for good health to come.

Please keep me posted when your up to getting on the PC. I'll be looking forward to hearing from you soon. Best of luck!!;)

Cindy

hi probably a stupid question but what would happen to a person with chiari which went undignosed.....in other words someone who didnt know they had it. could they die from it? i ask this as since a bang on the head 8 years ago while pregnant ive gone from a healthy active person to someone whos constantly in pain and having weird symptoms! main ones being severe headaches,intense shooting pains in the head,dizziness,neck problems,chestpains,tinglin,i also have hand/wrist pain.the list goes on and on!!!ive had 2 scans a few years back which were normal so doctors say ive just severe daily tension/migraine headaches. i really feel theres something more behind this than just headaches.ive given up going to doctors now as they seem to think im fussing over nothin,easy for them to think that,there not the ones in pain everyday for 8 years.even though some days are much better than others i do have pain every single day and chronic fatigue.im only 31 but i feel 100!!!!

Hi Jellebeans~

Your question is definately not a stupid one. I remember when I 1st learned about chiari, I worried about the same things. The mortality rate from chiari is rare. Most deaths from chiari are caused from patients who have sleep apnea and are heavily medicated with opiates (pain meds) which can lead to respitory arrest. Chiari does affect our infoluntary functions such as heart rate and breathing so that is where the problems lie.

The problem with leaving chiari untreated is that it is pressing on our nerves, causing all of these symptoms to occur. If left untreated, it can cause permanant damage. TCI (the ChiariInstitute) which treats Chiari and its related disorders, say that it is best to have intervention within 2 years of the onset of severe symptoms for the best results of recovery.

From what you've discribed, you should definately look into the possibility of chiari. Alot of people experience worsening of symptoms after child birth and a head trauma ( bumping of the head). Did you have an epidural during your labor? I ask you this because the changing point in my life was when I had a spinal tap. When the pressure in the spinal fluid was disturbed, my symptoms increased. Also, chiari patients are warned not to bear down to have a bowel movement and to use stool softeners to avoid this. Well, lets face it, in child birth theres alot of bearing down. My symptoms began in my child bearing years, in my early 20's. Though they were minimal, I had alot of strange tingling, I now know that my births and epidural probobly got things in motion.

An MRI is the only test to show chiari. When mine was done, my MRI said normal, no findings. I had copys of my MRI and compared mine to a normal brain and one with chiari and found my own diagnosis. So many people go undiagnosed for years because Dr's don't know about it and don't look for it on an MRI. Unless it is an extreme herniation, it gets unnoticed. Smaller herniations can certainly cause the symptoms your describing.

I feel so badly that you've suffered for so long. And I do understand your frustration with Dr's thinking your a cronic complainer and they can't find anything wrong. I went through this myself and they made me feel like I was crazy. It was horrible. But the daily pain you feel I only know so well!! And the cronic fatigue too. I was forced to give up my buisiness do to all of this. This is real and know one will truly understand unless they walk in the shoes of a chiarian or someone who lives in cronic pain for that matter. Being 31 and feeling 100 is something I know too well:D

If I can answer any questions or help in any way, just shout out. You definately need some answers after so long you've suffered. I'm here if you need anything. But what you really need is to find a Dr who will listen. ;)

Take care

Cindy

Hi Cindy,

Thanks for the support, I did notice when I used an Ice bag, I felt better, I'll have to invest in more and different kinds. I sure hope you are able to manage your pain, and the advice to have those to support and care for your well being will be followed. My mother is flying in from Detroit, and I have tons of friends here in Fresno who's said that they are coming to the hospital on the day of the surgery. I will probably write about how I'm feeling on Monday, they as soon as I can after the surgery. Keep me in your thoughts and prayers.

Derrick

Hi Derrick~

I'm really glad that you have a big support system with family and friends:angel: People to look over you and help you through this. I'll definately be sending you my virtual support as well and look forward to hearing how things go.

Good luck!!

Cindy

Hi Derrick....you are in my prayers too....you are a brave person and I'm sure you will recover with no problems,because you have a positive attitude and that means a lot!!!!

My friend who had the surgery said she was up and about not too long after it...they only shaved a small area right above her neck on the right side.The scar isn't that bad either!

I think it's great that you have a doctor that you can trust.You will be fine and hopefully the pain and other symptoms will be a thing of the past.

Many blessings,
Scout

Hi jellebeans(I love your name!)...I'm here for you too!Yes I agree with Cindy(always!) that you should have an MRI....that's the only way you'll know.In the mean time don't get stressed about whether you have Chiari or not.You will get thru this!We are all here to give you support.

Nice to meet you!

Scout

Hi Cindy!I didn't want to miss the chance to say hello to you.I hope you made it thru the back to school thing!I hope you're having more better days now.

How long has it been since your tethered cord surgery now?I was just wondering if the doctors told you how long the complete recovery from that surgery takes.Also would the decompression surgery alleviate the pain you have now?As always I'm a little confused about Chiari....my heart truly goes out to you.So I do exactly what you do...rest when I need it and do what I can(although I am known to overdue things when I have normal days!).

Please know that I'm here for you...I know you are here for everybody else,but you need people too!

Thank you Cindy for being such an inspiration to all of us here!
Hope you have a lovely weekend(pain free).

Scout xx

Hi Scout~

Great hearing from you!! My daughters back in school so the lazy summer is over!!:)

I had my surgery june 16th. They said recovery is about 2 months. I'm due to scedule my next appointment at TCI. I most likely will need fusion surgery, which is when the fuse the skull to the neck, lifting the skull so it doesn't compress the nerves. Sounds fun huh? LOL Then the decompression surgery if the fusion doesn't do the trick.

I definately have to build up my courage to do the next step because I am in constant pain these days. Its really tough. I get up for an hour or so then am forced to lie back down for relief. So my hopes are the surgeries will help relieve some of my symptoms. But theres no guarentees.

Be careful when you feel good, not to overdue. I am like that too but have learned my lesson quickly. You may pay for it later. How are you feeling lately? I hope your good days are more so than the bad.

Thanks so much for your support scout. It means alot to me to hear that.

You take care

Cindy

thankyou cindys601 and scout316 for your kind replys.ive been to doctors and hospitals constantly a few years back to the point one doctor told me very nicely he thought id mental problems!! since that id given up tying to find out whats wrong with me and just get on with things the best i can,but as you know with pain it gets you down ,i think the hardest part is noone really believing me,not just the doctors but friends and family also,my partner is sick of me saying how ill i feel all the time so now i just keep quiet and suffer!!! you say you checked your mri yourself,i actually have both my scans in my loft which im going to try and find this week,how do i know what to look for as i dont have another scan to compare against. ive tried taking my scan straight to a neuroligist at my local hospital to be checked for chiari as when i had them i think they were just checking for tumours.but neuroligist wouldnt look at them without me having a refferal,my doctor would not reffer me again and i cant pay for app as i paid for my scans which cost a fortune! x

Hi Jellebeans~

It is heart breaking to hear how we can be treated as human beings by the medical profession. And its horrible because so many people like you, give up and are left dealing with this all alone. Your not alone. You have us here and we understand!!

Let me tell you about my 1st neurologist appointment. Of course you wait so long to get in so when you finally get to see them, theres hope that you'll get help. At this point, I had no tests done and had only seen my PCP. This guy ran some blood work and then handed me a script for lyrica. I asked him why he was giving me this and he said for the pain. Then he danced around the idea that I had fibromyalgia.

I asked him how he could diagnose me until he ruled out other diseases and asked him to do an MRI. He said that theyre costly and he wouldn't waste money on them. I became so emotional and started to cry. He slammed his pencil on his desk and told me to go see a councelor. Because I had shed tears, he was blaming this on depression. It was horrible.

But when I got out to the car, it got worse. I was ranting and raving about this guy and my husband calmly looks at me and says "maybe he's right. You have been under alot of stress lately" I was so mad and hurt, I wouldn't speak the whole ride home. Now that I have a diagnosis I;m finally believed and its such a relief. Of course, without the MRI, I never would be diagnosed. I never gave up and found another dr. I fired that 1st guy that day:D

But you need a place to let this out and I can understand how you keep quite for your partners sake. But what about you? Holding this all in is not good. Come here and vent when you have to. Thats what these boards are good for.

As far as the MRI, I looked up on the internet a brain with chiari and printed it out for comparison. A normal brain, in the back sits up high, straight across. A chiari brain has tonsils as they call them. The brain is crowded and the brain is being squeezed down into the spinal cord so it kind of slopes at an angle. The tonsils are in turn, putting pressure on our nerves in the spine. When I compared mine, I took a ruler and could see a definate slant. I hope I've explained it so you understand. If not, just ask and I'll be glad to answer any questions. If you notice something with your own eye, you can go from there.

Let me know how you make out

Cindy

Hi jellebeans! What you might want to do is research chiari...I found that the mayo clinic has quite a bit on it and they'll show you a picture of what chiari looks like.Basically it's part of the hind brain extending a bit into the spinal canal.My herniation is 6mm...that doesn't seem like a lot,but it does present with it a whole lotta symptoms!

Hey I know so well what you're going thru.My husband was the same way,but it was hard for him to understand why I was so disabled,because the drs.(quite a few of them!) kept saying they couldn't find anything.The MRI was what finally saved me from going nuts thinking I was really nutto!All I heard before that was that I had anxiety and mental problems with that.I actually told this one dr. off,because he said he did everything he could and there was nt a thing wrong with me....hee hee hee....well I went backto him and told him what the MRI showed and he was speechless and then hurriedly said that I should see a specialist.I found out later that before he decided to be a family doctor he was the doctor for a high school football team...go figure!

Anyways you're not mental so don't even think about any of the negative feedback anyone gives you.You know you are not well and you have to be strong,persistent and not give up.So many people are going thru issues with their health these days and I think there's a lot of drs. who really don't want to take the time to investigate symptoms...they just chalk it up to depression/anxiety.

Also conquer chiari was the first place I researched that had lots of information on symptoms,etc.Just don't get overwhelmed reading about it.

Have a good day(pain free)!
Scout xx

Hi jellybeans,

Of course I'm in agreement with scout and cindy, but one thing that I can really say is that the chiari headache has it's own special features, and if you describe these features to your neurologist, then he may look a little closer at your scans. I told my doctor that I had intense pressure that would build up in my head whenever I sneezed or coughed, or even laughed, and sometimes it would be so intense that I thought that something was going to pop. My doctor didn't have an answer for that detailed of a decription of a headache, so he had to order my scans, and the scans showed a 1 cm herniation.

So try to be as specific as possible, and maybe you can humble you doctor enough for him to check for Chiari. It's sad, but it really seems that women have a lot harder of a time with these doctors, no one ever told me that it was in my mind. I guess that's just the world we live in.

I hope everything works out for you. And even though I don't know you, I can say with confidence, "I love jellybeans!"

Derrick

hi everyone,just like to say thank you again for all your help,ive found my scans and been looking on the web at pictures,i take it the tonsil bit..exuse my medical terms!!!! would like you say be coming downwards for chiari and normal across,on my scan its not right down and sloping but its not across either! its more like a normal scan but does hang a little lower but more oval shaped at the bottom.so im guessing i would rule out chiari?? the scans were takin in 2004 so i also wander if it could be showing the start of chiari or mild chiari? im not sure how down it has to be for chiari to be diagnosed.x

Hi Jellebeans~

There is such a thing as mild or borderline chiari which is less than 5cm. Over 5cm is a true chiari. Alot of Dr's don't recognize chiari unless you have a large herniation. But even a small herniation can cause symptoms.

My neurologist locally said no one would touch mine and it was 6 cm. I sent all of my tests to The Chiari Institute (TCI) in New York and they evaluate differantly. I had a 3cm. The herniation can be small, but wide and they do a cine MRI to check the flow of CFS fluid to see if its being blocked.

They also check for other related disorders. I had tethered cord which is very common with chiari. With this, the cord is being pulled tight and dragging down the brain. Once they release the cord it springs up, relieving the pressure. I had this surgery in June and it helped alot of my lower extremity issues.

I also have cranio instability so my skull is sinking into my spine. Thats probobly my next step in surgery. So there are many factors that play into chiari and that can cause the symptoms to occur.

On your MRI, did it look like you had a tonsil affect at all? If you place a ruler under the drop, does it slant? Also, they look at the crowding next to the skull as well.

OK everybody,

This is it for me, next time you hear from me, I'll be an official zipperhead. I'm a little nervous, but prepared, I figure that in a couple of months, when everything is healed and the headaches are gone away, I'll be glad I did this. Now I have to clean up, they gave me a special soap to use, try to get some sleep, wake up, use my special soap again and go get it done. Again thanks for all the support, and I'll come back as soon as I can get back on my computer.

Derrick

Prayers are going straight up to the Man for you Derrick...just remember you'll be feeling so much better soon! Take care and take advantage of the "room service" you get after the surgery!

With Heartfelt Love & Prayers,
Scout

Hi Derrick~

I do understand your fear and excitement at the same time. Your fear will be over soon and you'll be felling better before you know it!!

Know that you'll be in my thoughts today and wishing you the best!! We're looking forward to an update once your zippered;)

Take care

Cindy

hi im getting so confused now!!! have been looking at different scan pictures all week! in a strange way i was so hoping i would see something definate just to have answers to everything. ive compared my mri to a mri showing borderline chiari and it is very much the same but obviously being borderline it also looks like a healthy mri!
when you say use a ruler is it the tonsil bit im checking for a slant? x

Hi Jellebeans~

What you may be looking at is a normal brain, which would be a good thing. When I looked at mine, it was a definate slant. I had found a site that shows how they measure and lines drawn on the brain to show you where the normal brain sits and below that line, is the tonsil drop. Maybe you could find something similiar for comparison. I wish I could look at it myself but we are not able to share here, unfortunately.

Have a great day:)

Cindy

hi cindy,ive just been on a great website which shows where to measure,if i put a ruler on the basion to the opisthion my tonsil bit is sitting on the ruler,its possible it could be just a tiny tiny peice under but is a bit hard to say really. probably best if i can try and get mri looked at and checked properly.im in the uk so we have to be reffered by our family gp to see neuroligists etc. i did have my mri at a private hospital so i didnt have to wait on the very long nhs waiting list so i think my only option would be to see if i could send them back to be looked at x

Hi Jellebeans~

Its definately worth getting it looked at and reread. In the US, neurologists can be very difficult diagnosing chiari and don't even believe that a small herniation can cause symptoms. But it certainly can because even if theres crowding of the brain, it can block CFS flow and affect the nerves. I hope your health care system is more open minded.

Let me know how you make out!!

Cindy

ive just double checked things before phoning the hospital ...and realised id placed the ruler in the wrong place,ive just done it now..in the right place! and tonsils definatly under the line,only abit but with the ruler there its visible. but its not really a pointy shape, just oval ..ish x

Thats how mine is. More oval but definately sloping down. I thought when I was looking at mine, I was hoping so much for an answer that I was seeing something only in my eyes. But it was there, for sure.

The other thing I saw on mine was the brain stem looked very flat and straight down. In a normal brain, its sort of round and plump. I learned that my brain was being pulled down from my spinal cord being too tight. So there is alot more that can be going on.

I'm glad you were finally able to understand how to look at it and someone will help by looking at it too!!

hi cindy,yes my brainstem looks flat and straight down too. i keep checking with my ruler as im the same,..wandering if im just seeing something there because i need too!!i obviously dont want chiari or anything but you do know yourself when somethings not quite right and after all these years of pain im sure it would actually be more of a relief to me to be told i do have it rather than be told im mental!!
if it wasnt for reading your these posts my mri would still be in the loft collecting dust and i probably would not of even gone back to my doctors again as i had decided 2 years ago to give up and believe i just have a headache! so i really thank you for your help and advice. i will get my scans looked at..somehow! will let you know how i get on.
take care of yourself,speak soon x

It is so hard to be suffering and at the same time, our pain not being validated. Its crazy to even think of wanting to be told we have a cronic illness but for me, it was a sense of relief. You really start thinking yourself that maybe you are nuts:D

I rememer the 1st time I read a post about chiari. I had been running myself ragged looking for answers and that thread was a heaven sent!! But there was still the battle to get someone to aknowledge my chiari. Do they have any chiari specialists in the UK? I would definately research that. I know people travel to the US from other countries to get proper care.

I hope now that you've dusted off your MRI's, you can get some answers. Thats why its always good to keep records of EVERYTHING. I have a large folder with every test I've had done and always ask for copies of everything.

Let me just say that having chiari is no picnic. It definately has changed my life. But I learn to rest when my body sends me signals and am very careful not to lift, push or pull anything heavy. I pamper my body to protect it from further damage. And even if you don't have chiari, but know something is definately not right, don't give up the fight and let those Dr's get the best of you. You have to find at least one who is willing to listen.

I'm here if I can help;)

i really havent got a clue if we have a chiari specialist so will definatly do some more reasearch before i go any further. i dont want my scans being looked at by someone who knows nothing about it.but i do know my doctor wont easily help me as he was at the point he just didnt know what to say or do with me anymore!!!just keeping my fingers crossed that getting them checked will lead to something,being told theres nothing wrong with me again and being sent home with no answers..again..would just be awful x

Jellebeans~

I forgot one more quick note. If the brain is being pulled down and your brainstem is looking flattened, you could have a tethered cord. Theres not alot of information out there on this. For me, I had alot of pain in my legs. It fealt like I had elastic bands tied around my legs and they just didn't want to move right. I had alot of pain and weakness in my legs as well. Also severe bowel issues and incontinence too.

When they detethered my cord, the surgeon said it was severely tethered and its like cutting an elastic band and the brain springs up, not being pulled anymore. Since my surgery, my bowel and urgency to urinate have improved greatly!! My legs move like normal legs now. Its amazing how much it did help. My pain in my legs have improved too.

I still have alot of unresolved issues. My head pain is still bad and I get stinging burning pain all over my body. So I know I need more surgeries in my future. But theres hope!!

Take care

Cindy

Hi Jellebeans~

I have a list of Chiari specialists and there are 2 in Austrailia. Hopefully this can give you some leads. Your definately better off going to someone who understands chiari than being shot down by someone else. Maybe check these out. I hope this helps you;)

Hunn A W M Dr
Neuro Surgeon - Montagu House
49 Augusta Rd LENAH VALLEY
Telephone 6228 6966

Tasmania, Australia

Mr.. Graham Flint
Consultant Neurosurgeon
Birmingham Neuroscience Centre
Queen Elizabeth Hospital
Edgbaston, Birmingham, B15 2TH
+4401216978254




Prof. Marcus Stoodley
Associate Professor of Neurosurgery, University of New South Wales
Neurosurgeon, Prince of Wales Hospital & Sydney Children's Hospital Barker Street, Randwick, 2031
Australia

thats brilliant,thank you so much x

You are quite welcome!!

hello, just so you know i called the hospital where i had my scans and explained to the receptionist what id found etc and was told that they would have been checked properly and if i still had a problem to go to my normal gp!!! dont feel that great today so didnt have it in me to argue it out with her!!!! i will make an app with my doctor but im preparing myself to be told to go away again! i got my other half to check mri also just so i knew for definite and he agrees its definatly below the line,for the first time in 8 years i think he may actually now believe that i really do feel ill!!
i found a hospital not too far away which deals with chiari but would need to be reffered by my doctor first.
just wanted to check,the line i draw across/put ruler,would it be a straight line if it was a healthy scan? or does it not really matter? x

Hi Jellebeans~

I know your in a difficult position and your afraid of being shot down again and you may. But you really have to find someone who is familiar with chiari who can be more open minded when looking at the MRI. So many health professionals don't even know what it is. My PCP never knew and I have taught him what he knows.

But at least your being pro active by calling the hospital. Hopefully you'll get someone to read them that can recognize this. I do understand how you feel when you say you didn't have it in you to argue with her about it. The energy level we deal with makes it even harder to stand up for ourselves.

Its a good feeling that your other half can see it as well. I remember when I found it, I showed my hubby and he said it was down too. I fealt like at least I wasn't seeing something just because I so badly needed to answers. Maybe now he can have a better understanding of what your going through. I'm really glad you got a good response from him. That helps so much.

Maybe you could meet again with your Dr and ask for a referall to the chiari clinic. This is one time you'll have to be rested up to get through this fight. Be strong and confident, research chiari and go in there with confidence. I know its hard and scary. I've been there. And I got shot down by my Dr too.

Ultimately, I gave up on local Dr's and sent my MRI to The Chiari clinic for them to evaluate because no one would help me here.

I wish I could draw a picture for you. If you know where to place the ruler, and where to measure, place a line straight across. If there is any part of the brain below that line, this is the herniation. If the brain is straight across, its normal. Am I explaining it so you understand it?

hi,im getting a little confused as some pics i look at the line seem to be slightly placed differently.
the line is the foremen magnum,which goes across from the basion to the opisthion?on most pictures it does show as being straight but if i join them two points on my scan the line is slanted. does it sound as if im doing it right then do you think?
i just want to get all my facts right and prepare myself for my monster of a doctor!!!

It does sound like your doing it right. Have you found any internet pictures showing the slant with chiari verses a normal brain?? If you can find pictures of borderline or up to a 5 cm herniation, that may give you something to compare it with.

IMHO, if theres a slant, your seeing something;) As far as your monster Dr, if you don't have a good rapor or don't trust him, maybe you should concider finding one your more comfortable with. My PCP is very involved at this point with my chiari because the specialist is almost 4 hours away. I have a great relationship with mine an he is not too proud to admit he doesn't know something.

thanks cindy,you have been a great help..again.... ! yes ive seen the slant on chiari mri but not on a normal mri. i also have a couple of borderline chiari pics to compare with and mine is defo the same. i will go see my doc and go from there,now ive spent lots of time looking at chiari i really think my pic shows it so im not going to give up this time!! and if im right my scans are over 4 years old so they could be sloping down even more i guess. im glad you have an understanding doc now,it must make all the difference,
will keep you posted x

Hi Jellebeans~

Definately after 4 years there could be more of a herniation and you will most likely need another one at this point. A mere bump on your head can make things worse so 4 years is a long time.

I'm glad to hear the determination in your post. You don't deserve to live your life suffering and not know why. Its going to take work to get there but you'll make it. An understanding Dr is a must with this illness.

I'm here for you if I can help in any way;)

Keep me posted. And i'll cross my fingers for you