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Old 09-21-2008, 07:05 PM   #1
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arnold chiari malformation: Can the herniation shrink?

I had a sponateous spinal fluid leak 3 1/2 yrs ago and it took them 2 months to diagnose the CM. I've had horrible headaches for years, extreme pain in my neck and shoulders, hundreds of floaty things in my vision, and on and on. My MRI last Dec showed a 6 mm herniation and to see a neurosurgeon i had to have a more recent MRI done which I had done last week and the results showed a 3-4 mm herniation so now the surgeon won't see me (it's not large enough). I've been to 3 neurologists and they tell me that a herniation that small wouldn't be causing me so much pain. Why can't we find doctors who will listen to us????? I just need some help and some relief! I'm single and have to work full time but it's getting harder and harder to do that so what am I supposed to do when no one will help me. I can't go to work on Vicodin everyday. Can the herniation shrink in 8 months? The 2 mri's were done at two different places. Does anyone out there have any suggestions on what I should do now?
Thank you!!

Susan in Washington

 
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Old 09-21-2008, 07:20 PM   #2
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Re: arnold chiari malformation

Hi Susan~

firstly, you are not alone in what your going through. Most neurologists don't understand chiari and don't believe a small herniation can cause the pain. But it certainly can!! There are many things that have to be taken into concideration besides the size. If its affecting your CFS flow, it can affect your nerves an create a number of neurolical symptoms.

If your hitting a dead end with local neurologists, its time to seek out a chiari specialist. They will evaluate you and look at the whole picture. These chiari experts are well versed in chiari and wont send you away, making you feel like your a nut and its all in your head.

As far as size goes, my 1st MRI said 6mm then The Chiari Intsitute (TCI) in New York did another and they said it was 3mm. They were willing to validate what I was dealing with and offer a course of action for treatment, even with the small herniation. It all depends on who reads the MRI, the size they determine.

My heart truly breaks for people like yourself that are stuck with no help. But know that theres support here and I'm willing to help if I can. And I know what your going through 1st hand and its rough but hang in there!! There are options available

Cindy

 
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Old 09-23-2008, 04:05 PM   #3
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Re: arnold chiari malformation

Hi Cindy....I've been trying to get all my information and questions ready for my neurologist appointment tomorrow morning. I just don't want to forget anything important.You give soooo much needed help here....you are amazing! Is your pain easing up any? Hope so.
When I read Susan's post it made me think that "maybe" Chiari can fix itself.I know this sounds strange,but I was thinking that maybe the brain just "swells"like an inflammatory reaction(caused by things going on from some other place in the body)and then if the drs. can find out the answer to this it would paint a more clearer picture of Chiari.
Sorry to sound like a lunatic,but I still feel like they need to do quite a bit more research on Chiari.Like I mentioned to you before all my symptoms started with my menopause.This is why I am so curious about what others with Chiari are experiencing as far as symptoms go.The only thing that makes any sense to me about Chiari is the part about the CSF being compromised.It doesn't seem to matter what the actual size of the herniation is so just the fact that the CSF flow being hindered could be the reason of the symptoms is something that makes the most sense to me.
So I have noticed that I only get a really bad "back of the head" headache like once a month(and it is immeasurably painful!).Is this where and what a Chiari headache feels like?I was thinking it has to do with hormone changes in my body.All my life I've always had one relly horrible headache the day beforeI'd get my period...so this makes me wonder how the Chiari plays a role in this????

Anyways sorry to go on and on about this.....I am just overwhelmed with thinking about seeing the neuro tomorrow and of course I seem to always be trying to figure Chiari out!

Thank you for all your help to me and everyone here!

Hope we hear from Derrick soon and that he is doing so much better.

I will definitely post tomorrow and let you know what the good doc says!

Have a lovely evening Cindy

Scout xx

 
Old 09-23-2008, 07:11 PM   #4
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Re: arnold chiari malformation

Hi Scout~

I'm still struggling each and every day with my pain. I have my good days and my bad but I'm coping.

Tomorrows the big day!! Write down everything so you dont forget the important stuff to ask. Is your neurologist knowledgable in Chiari? With so many Dr's, we as patients know alot more about chiari and can teach them a thing or 2. If they're not versed in chiari and only know what they've learned in medical school, which is outdated, they may not be able to answer all of your questions with accuracy. Just food for thought

As far as susans measurements being smaller when she had her 2nd MRI, the only information that I have learned this far is there is no cure or "fix" for chiari. In Susans case it could well be that because it was read by 2 seperate people, they were read differantly. That happened in my case as well. !st I was told 6mm then at TCI, 3 mm.

But I do believe your right in thinking things cause more inflamation escalating the symptoms. For me, rainy days are my worse days. When the barometric pressure is low, my head becomes a ball of pain. But on clear sunny days, though I still have pain, I'm at my best. But again, on those beautiful days when I'm feeling better, I stay up for longer periods because I feel better, then because I stay up too long, I get myself in trouble and get extreme pain again.

So things definately do affect how our bodies are reacting to chiari. And treatment and research is still in it's infancy. In the last 5 years, they have learned so much more and in the years to come, we will gain more knowledge and treatments will change hopefully to better our health.

So for me, living with chiari, I have learned to listen to my body and thats what helps me. Like tonight, I wanted to get on here and respond to some new posts with others who are new here but at 6:00, I was getting a stinging burning pain in my head. I finally just gave up, layed down and slept for 3 hours. Now I can get up again and get the things done that I need to do.

As far as the CFS flow affecting us vs the size of the herniation, you have to figure that our sculls are too small, virtually squishing our brain. This in fact affects the flow that protects and nourishes the brain, causing symptoms. The other thing I've learned is that during our menstrual cycles, many woman experience worsening of symptoms. Why? I guess we'll find that out someday

As far as chiari headaches, they are generally known to be in the back of the head at the base. I also get pain all over my head. Its very tender to the touch, like its bruised. Even shampooing my hair hurts

So, I want to wish you well at your appoinment tomorrow. Let me know how you make out. I'll be waiting for an update.

Derrick has been on my mind all week long. I hope he's feeling better by the day and he's able to contact us soon with good news!!

Talk you you soon~

Cindy

 
Old 09-24-2008, 04:13 PM   #5
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Re: arnold chiari malformation

Good Afternoon Cindy....hmmmmmm I heard some very interesting things today.First of all my neuro wasn't as nice as he was to me 8 years ago....that figures(yeah he was kind of crabby).He said he can't find any neorological problems with the routine exam he did on me today.He did say I have very tight hamstrings and that I am actually tight everywhere.He ordered a brain MRI and an EEG and also I have to return for a follow up visit at his office and he is going to do that nerve testing on me(I had that before last time I was in his care,but now he does the actual testing in his office).So I got a look at my MRI report when I had my last MRI in Dec.'06....this is soooo confusing...here goes.....

The cerebellar tonsils extend 6mm below the level of the foramen magnum and have a rounded configuration.Given the lack of associated signs,I do not feel that this is a Chiari l malformation.but rather cerebellar tonsillar ectopia.There is no evidence for an intracranial hemorrhage,mass,or midline shift.Ventricles and suici appear normal in size and configuration.Gray-white matter differentiation appears normal.There are normal intracranial vascular flow voids.Thin-cut imaging through the posterior fossa shows a normal appearance without any evidence for a cerebellopontine angle mass.Minimal mucosal thickening involves the posteroinferior wall of the right maxillary sinus and the left anterior ethmoid ait cells.The remainder of the study is unremarkable.

That was listed under "findings".

So my dr. said I do not have any symptoms of Chiari that he sees.....this is all confusing to me...so I searched that "cerebellar tonsillar ectopia" thing and it is written about with the Chiari........CONFUSING!

Cindy when I searched that thing I found so much more information on Chiari....so if you want to just reserach that tonsil thing and you'll see what I mean.

I feel like I'm getting "nowhere fast"...hahaha.

Anyways I'm still waiting to hear what my B12 level is currently..I haven't gotten a shot in over 2 months...we'll see how that goes.I feel frustrated,but still fortunate that I don't have it any worse than I do already.

Oh yeah and I guess the dr. thinks I have some nerve damage from when I was so B12 deficient.....that's great to know...I guess I have those cold,inexperienced drs. I was seeing for two years to thank for that....so lovely.I don't even want to think about all that...it's no use...I'd rather be optimistic about things and appreciate what matters more in life...like having my family,friends and faith.

The dr. asked me which of my symptoms are the worst and I told him it's definitely the "twitching in my feet/ankles" and the "off balance",the "muscle weakness",the "loss of fine touch" and the "debilatating(spelling?) way I get when I have a "hot flash"(he asked me WHAT a hot flash was????).Soooo funny....really!

The dr. says I need physical therapy,because of the tightness everywhere.......I don't know how to put all this information together.....I sure didn't get the answers I needed...instead I got all this new stuff brought up to me.....helpppppppppppp...I feel whack-o...but I am finding a lot of humor in it anyhow.

I hope you had a better day than I did Cindy!Actually I felt good today(dr. should see me when I have a bad day,but that never seems to happen when you want it to!).

I look forward to your expert advice and I do so welcome your comments dear Cindy!

Scout xx

 
Old 09-24-2008, 04:31 PM   #6
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Re: arnold chiari malformation

Cindy...I found this when I looked up that cerebellar tonsillar ectopia thing>cerebellar tonsils that are "low lying" but that do not meet the radiographic criteria for definition as a Chiari malformation<

Sooooo hard to understand...I tried to read all about it and it just confused me even more????????

Later....Scout~

 
Old 09-24-2008, 05:05 PM   #7
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Re: arnold chiari malformation

Hi Scout~

You poor thing!! Those appointments are so tough to get through and emotionally draining when your done. First of all, for a true chiari diagnosis, it is 5mm or more. Most neurologists wont recognize the smaller herniation. Even the neurologist at TCI gave me that whole dance that he didn't know if a small herniation would cause my symptoms. And that was at a chiari clinic. But next I saw the neurosurgeon in the next room over and they offered me treatment and aknowledged my chiari. So the only way your going to get a straight answer is to seek out a specialist for an evaluation.

As far as cerebellar tonsillar ectopia, that is a herniation, chiari. It sounds like they dont want to label you with chiari so cerebellar tonsillar ectopia is a more gentle term. But it means the same thing.

I had the mucosal thickening as well. And many other chiarians too. Some think that the CFS leaks out through the nasal passages. And I thought for years this was due to my alergies. Even had nasal surgery. Yuck

The nerve tests are not fun. I had them too. Its like torture, in my opinion. Much easier though, to go to the Drs office instead of the hospital.

You have the 2 things together, the cerebellar tonsillar ectopia()and the B12 deficiency so its really tough knowing which thing is attributing to your symptoms. I have all of your symptoms but no b12. But others here have no chiari and just B12. So you really need to get a better picture of whats going on. Definately you need to have your B12 checked and keep an eye on that. Maybe you should just find a chiari specialist and go to talk to them. Its pretty amazing that they can actually tell from your symptoms, what part of the brain is being affected.

Foolish man didn't understand a hot flash? Wow. Guess he still has some schooling to do. I get that way too , and it comepletly wipes me out and I HAVE to sleep it off. Strange.

The stiffness I had really bad in my legs before my surgery. Stiffness and achy pain. But now its gone. Yee ha!! The tethered cord was causing that and my legs feel so much better now.

Ya know, if you have permanant nerve damage, its not the end of the world. Like you said, theres so much else thats more important in life. Thats the attitude you have to keep.

My day was much better today with the sun shining bright. I'll take the good days and make the best of them. Friday we have a big rainstorm heading our way, lasting into Saturday so I'm relishing today for sure

Your probobly exhausted after that appointment with the "crab" so go relax over a cup of tea.

Take care

Cindy

 
Old 09-24-2008, 07:29 PM   #8
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Re: arnold chiari malformation

Quote:
Originally Posted by cindys601 View Post
Hi Scout~

I'm still struggling each and every day with my pain. I have my good days and my bad but I'm coping.

Tomorrows the big day!! Write down everything so you dont forget the important stuff to ask. Is your neurologist knowledgable in Chiari? With so many Dr's, we as patients know alot more about chiari and can teach them a thing or 2. If they're not versed in chiari and only know what they've learned in medical school, which is outdated, they may not be able to answer all of your questions with accuracy. Just food for thought

As far as susans measurements being smaller when she had her 2nd MRI, the only information that I have learned this far is there is no cure or "fix" for chiari. In Susans case it could well be that because it was read by 2 seperate people, they were read differantly. That happened in my case as well. !st I was told 6mm then at TCI, 3 mm.

But I do believe your right in thinking things cause more inflamation escalating the symptoms. For me, rainy days are my worse days. When the barometric pressure is low, my head becomes a ball of pain. But on clear sunny days, though I still have pain, I'm at my best. But again, on those beautiful days when I'm feeling better, I stay up for longer periods because I feel better, then because I stay up too long, I get myself in trouble and get extreme pain again.

So things definately do affect how our bodies are reacting to chiari. And treatment and research is still in it's infancy. In the last 5 years, they have learned so much more and in the years to come, we will gain more knowledge and treatments will change hopefully to better our health.

So for me, living with chiari, I have learned to listen to my body and thats what helps me. Like tonight, I wanted to get on here and respond to some new posts with others who are new here but at 6:00, I was getting a stinging burning pain in my head. I finally just gave up, layed down and slept for 3 hours. Now I can get up again and get the things done that I need to do.

As far as the CFS flow affecting us vs the size of the herniation, you have to figure that our sculls are too small, virtually squishing our brain. This in fact affects the flow that protects and nourishes the brain, causing symptoms. The other thing I've learned is that during our menstrual cycles, many woman experience worsening of symptoms. Why? I guess we'll find that out someday

As far as chiari headaches, they are generally known to be in the back of the head at the base. I also get pain all over my head. Its very tender to the touch, like its bruised. Even shampooing my hair hurts

So, I want to wish you well at your appoinment tomorrow. Let me know how you make out. I'll be waiting for an update.

Derrick has been on my mind all week long. I hope he's feeling better by the day and he's able to contact us soon with good news!!

Talk you you soon~

Cindy
Hi Cindy, I have been reading your posts with Scout and I thought I would ask you a few questions. I have been diagnosed with Chiari Type 1 since March 2008 and I have been researching and speaking to doctors about it ever since. Besides being stressed which I think has lead to more symptoms. I am 43 years old now and have had headaches and neck tightness my whole life which I contributed to my scoliosis surgery I had in 1978. I was getting hand and leg tingling off and on throughout the years but what made me really try to find out what was wrong with me was after the birth of my second son. My hands were hard to use and weak and my feet feel like I'm walking crooked and are a little numb, which is off an on. Anyway, I'm trying to find out what symptoms are related to chiari, my scoliosis or something else. I was wondering about your posts when you talk about B12 deficiancy, I was wondering what symptoms this causes, I was also wondering about cerebellar tonsillar ectopia, what is this? I just
had a flow study done today, the doctor the ordered it said that if the flow is bad he thinks I should have surgery right away. I'm really scared about surgery, I read so many posts that the people have the surgery and then symptoms return or even get worse. It's very scarey. thanks for your input erica

 
Old 09-25-2008, 03:38 AM   #9
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Re: arnold chiari malformation

Hi Erica~

Welcome to our boards. Hopefully here we can offer support to each other dealing with this crazy thing they call chiari I was diagnosed in april of this year and have just begun my journey. I'm 42.

As far as being stressed, it definately does make matters worse, I've found. The best thing I've done for myself is avoid stress and try to except what I've been given because I can't change it. I look at this as natures way to slow me down and look at whats important in my life.

I was a single mom for many years and worked 7 days a week to provide for my family. Then I got sick and now I'm unable to work. One day my 16 year old daughter was getting ready for school. She had testing that day so I thought she looked stressed and asked her if that was what was bothering her. She bursted out in tears and said "I'm just so worried about you Mom" I wrapped my arms around her and told her that I'm going to be OK. somethings just happen for a reason and this happened to me to slow me down so I have more time to give my family now. So , for me and my daughter, I guess this was our way for finding piece with all of this.

Let me just say to you what I wont say to her, that this is scary and very overwhelming at times. But we will be ok. We just have to be educated about this in order to advocate for our own health. So your doing the right thing by researching and talking to Dr's to get a better understanding. Your in New Jersey. Have you been to The Chiari Institute (TCI) in New York? Thats wher I've been going and feel like I'm in very good hands there.

Scout has a B12 deficiency which is not related to chiari yet the symptoms are very similiar. I'm sure she'll be on to share her experiences with you. But the cerebellar tonsillar ectopia is something that they are calling her herniation because they wont call it Chiari. It is the drooping in the back if the brain, causing the tonsils. So its funny why they wont just say chiari

Have you found a chiari specialist to evaluate you? The flow study is a good thing to have done and gives them a good picture of whats going on. With a recomendation of surgery, I can understand your fears. Some people have surgery and go on to have better lives, while others don't. I think the point that you have to concider surgery is when your quality of life is being affected. For me, it has taken away my ability to work and I needed surgery. I had my tethered cord surgery in June and have no regrets. Though it didn't help my head, my legs feel so much better today. I am going on having one maybe two more because I can't continue my life in the pain I'm living with today. So if it helps, good. If it doesn't, I'll be no worse off than I am today. But surgery is a personal choice and only one you can make for yourself.

We're here if you need us!!

Take Care

Cindy

 
Old 09-25-2008, 12:55 PM   #10
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Re: arnold chiari malformation

Hi Erica! First of all just keep as calm as you possibly can...thinking about it will make it worse(I should take my own advice!).

May I ask what size your herniation is?How long will it take your drs. to get back to you on the results of your CFS flow test?I know you're probably on the edge waiting to hear the results,but no matter what at least you'll know what's going on.

So I have compared my symptoms to others here and it is confusing,because of my low B12 level.You asked about symptoms of low B12.I've spoken to lots of people on these boards about it.Here goes........

Symptomsff-balance~dizzy~hard to swallow~weakness in arm/hands/fingers/legs/feet/toes~confusion~cold hands/feet~trouble breathing sometimes~sore tongue(usually it will be kind of red/glossy,but it could also be very pale)~unsteady walking~ringing in ears~pins 'n needles feeling in fingers/toes and numbness too~sense of taste diminished~can't tolerate cold temperatures(even touching cold things)~I found that certain materials,etc. that I touched bothered me also.I think that's about it and I must note that B12 deficiency is also misdiagnosed as a "psychiatric illness"...funny,huh?

The normal range for B12 level is 200-1100(big range,huh?).My level was about 278 when I first went to a hematologist,but she did a methylmalonic acid test which was sky-high and that she said was a hidden B12 deficiency(most MDs don't know that!).So if you think you have any of these symptoms then it's a good idea to have a direct B12 blood level test.Also fatigue is a symptom too(how'd I forget that one!).Also I had pains in my hands/arms sometimes too.

I went 5 years without shots and then I got sick again with all my previous symptoms and it was very hard to find a dr. that knew about B12 issues.My level was 374 when I started getting symptoms again and uit dropped steadily from 255 to 22 and by then I was so disabled I had to use a cane(no kidding!).Finally I saw a neorologist at a University and he knew right away that I needed B12 shots again.

So what I learned was that when your B12 level is under 400 you are very much apt to get symptoms.If your dr. finds you are low then keep pressing to get a monthly shot 'til it gets above 4oo...or at least take some B12 tablets that you can buy at the grocery store/health food stores...also the health food stores sell sub-lingul(spelling?) B12that comes with a little dropper built in and you put it under your tongue(many people I know take it this way and it is great!).

Hope that answers your questions about B12.....Erica please let us know how things are going for you....it's okay to be frightened(I still am about the Chiari thing too!).but I'm less afraid now due to wonderful,caring,kind people here..like Cindy!!!!! She is the best and if it wasn't for her I'd still be having anxiety about the Chiari,but it is so much better now,because when you have people that care and offer all the advice they can it is very comforting AND helpful!!!!

Keep posting Erica!We care about you!

Scout xx

 
Old 09-25-2008, 01:00 PM   #11
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Re: arnold chiari malformation

that B12 level I had went from 255 to 222(I typed in 22 by mistake...my gosh I think I wouldn't have survived if it had been that low!!!!!!!!).
Have a good day!
Scout

 
Old 09-25-2008, 02:04 PM   #12
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Re: arnold chiari malformation

Scout~

You are so sweet But you should also be aknowledged for being right here along with me, offering your time and support for these people that need someone. Your attitude is quite uplifting and you always manage to get a smile out of me even on a bad day

Cindy

 
Old 09-25-2008, 05:34 PM   #13
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Re: arnold chiari malformation

Cindy...I hope you are not having a bad day today....Sometimes when I have a really painful day it just forces me to rest(at least try to rest)and I absolutely have a hard time doing that.Like you I always wanted to be there for everyone and I think that's te hardest thing of all....letting go and having to have "my time"...only thing is I am tired of "my time"....we are so funny,aren't we?

Now I must admit that the only way I had the courage to go to that dr. appointment yesterday was because of you...this is true....so I want to say "Thank You".

I have a sister I'm really close to,but she moved away to California last April.We keep in touch by phone(the phone isn't always my friend....I get a stiff neck,ringing in my ears from it,blah,blah,blah).Also when she moved she talked me into talking live on the computer which is fun(except when I'm having those painful days of course!).She is always there for me,but I really hate being sick so much of the time,you know?She understands me so that is a blessing to have her friendship.I told her how much you helped me and she thinks that's so wonderful.She is learning all about Chiari from me...and that makes me feel good,because most people don't want to hear all the "complaining"that I seem to do.I'm getting better at knowing who I should and shoudn't talk to about my health issues.

Hey Cindy it seems that there are doctors dedicated to researching Chiari after all.I read about their studies when I looked up the tonsil thing(I hate to type that long name out...hahaha).They seem to think that small herniations can cause the compromised CSF flow(which makes a whole lotta sense to me!).So maybe there is hope after all....

I decided that for right now I'm just going to keep being optimistic about this and not let the "uninformed doctors" get met upset.As long as there are doctors working to find some answers to Chiari that is enough for me to want to keep hoping and doing the best I can.

Oh Cindy thanks so much again for giving me the emotional strength I needed to get thru that dr. visit yesterday!Last night I woke up during the night and my right foot was in so much pain(it was soooo weird...it was the top of the foot...like it had been run over by a truck...).It seems that whenever I've had a neuro exam I feel worse afterwards(so funny!).All that pushing to show the dr. how much strength you have just takes a huge toll on me(not fun!).

Tomorrow I will be calling my regular MD to fuind out what my B12 level is.I had the tests on monday and they said they'd let me know...usually they have the results in a couple days...I guess they are busy this week.I just want to know so I can maybe sort out what's from Chiari and what's not!

I will post again tomorrow....tomorrow is friday....my favorite day!Hope you have a good night.

Scout xx

 
Old 09-25-2008, 07:20 PM   #14
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Re: arnold chiari malformation

Hi Scout~

We have a rain storm headed our way tonight which is staying Friday and saturday. As I've told you, the rain is tough on me. I can feel theres rain coming even before it gets here. I BURN in my face, my mouth and my head and shoulders. The top of my head hurts to even touch and even shampooing my hair even hurts. So I live like a grubb for a a few days. So, yeah, I'm miserable today but thats life with chiari

It definately is an adjustment to stop what we need to do to take care of ourselves. But in order to not let the pain get out of control, I throw my hands in the air and rest when I feel it coming. No since in fighting it because it just makes you feel worse when you push yourself.

I remember the days where I catered to everyone and did so much but never had time for myself to even pee Now, if we only had the ability to do that today, we'd definately be more apreciative, wouldn't we? Alone time is great when you never get it but it does get old fast.

I'm glad I was able to offer you some strength to get through your appointment. Its so very hard to go, knowing that your symptoms are going to be minimized by the Dr your seeing. I went through that myself for a year and it was torture each time. You get your hopes up that this time will hopefully be differant and you leave with anger and dissapointment. Its so sad

If only these Dr's would take the time to learn what the chiari specialists are learning. That the small herniations do affect the CFS flow. Actually, they say long and thin tonsils are better than short and thick. If they are wide, the block the flow more so. And then again, they need to concider the hind brain is also being squished, which affects the flow too.

There are several Dr's in the states that have dedicated their practice to research and treatment of chiari patients. Just like many diseases, in their infancy of research, little is known and there is no cure. But as time goes on and more is learned, you see changes. So there is hope!!

My only advice about uninformed Dr's is to stay clear of them!! They bring us down and make us feel like we are crazy. We have enough to contend with on a daily basis and we definately don't deserve that. So in my opinion, don't waste time trying search for a Dr who understands, just go straight to the best the 1st ime and illiminate the drama

You are very fortunate to have such a great relationship with your sister. It sounds like she gives you great support. To be able to have a person to vent to is a blessing in itself. Its really hard when your sick not to share it with others but your right, theres not alot of people that you feel comfortable sharing that with. You can definately sense whether of not the person your talking to you will be receptive. Many people, when you say your sick, can't handle it, I think its just difficult and they don't know HOW to respond so they just dont respond at all. But having a sibling who understands, thats special. Too bad she lives so far away.

I hope you get good news about your B12 levels tomorrow. Let me know what you find out.

Have a great night

Cindy

 
Old 09-26-2008, 07:18 AM   #15
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Join Date: Sep 2008
Location: new jersey
Posts: 3
toblueeyez HB User
Re: arnold chiari malformation

Dear Cindy and Scout,
Thank you so much for your really nice and supportive replys to me.
I am 43 years old and I had found out I have chiari in March of this
year and have been doing research and seeing doctors. It has been
a slow process many of my doctor appointments were cancelled because
of emergencies and rescheduled. I had an appointment to go to TCI today
but it was cancelled and now it's in December. I have a herniation of
1.3 cm. I had a scoliosis operation where the inserted a herrington rod
in my back in 1978, so i've been seeing some back specialists to ask their
opinions. I also have degeneration in my neck. I have not had an EMG test
yet but finally decided to have one done in October. I'm not looking forward to it, but who would be. I get different opinions from
doctors. I have weakness in my hands, arms and legs. It's hard to use
my hands at times but i'm still able to do everything I need to. I've been to an acupuncturist for this which has helped.
This is what scares me most. I have 2 small children now. I got started late
in life. After the children were born I had more symptoms. After the second
son (10 months) was born I was having more issues with my hands so I went to a neurologist and found out I have chiari. I'm often confused wondering if some of the symptoms are relating to my neck and scoliosis or if it is all chiari related. I've been feeling worse since I had my MRI this past wednesday. I also got my period for the first time since I stopped breastfeeding and the baby was born. I am feeling really weak in my body and especially my arms and legs. I'm wondering if this is because of my period or because of the chiari or both. I've been going to some holistic doctors and trying to eat the right foods and avoid other foods. Do either of you know- is your skull always too small for your brain when you have chiari or can chiari occur for other reasons. I once read in a book that some cases clear up on their own although it's very unlikely. It's just interesting to hear why that would happen for some people. Anyway, it is raining today and that doesn't help either. I hope that both of you are doing well today. I'm really glad that I have joined this group.
thanks again for the support
erica

 
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