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Old 07-26-2008, 03:49 PM   #1
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need advice

agter 2 years of many docs and many hrs in severe pain they finally did an MRI and found i have low lying cerebellar tonsils, I malformation and will be referred to a neurosergon asap they say. still learning what this all is and after reading im not sure why this wasnt found sooner, i have severe neck pain and constant headaches that nothing seems to ease the pain. which i thought for all this time was from my disc buldges, they say thats not the case and that there is a procedure where they can go in and "fix the issue" im totally freaked by this all.i also have had all the sympoms of this, which is kinda odd, the numb hands headaches, balance issues, ringing in my ears, vision issues.from what they tell me i have to have the procedure, its not an option....??? thats nuts! anyhow, anyone had this done??thats the big question, and i have a child with CP who needs my attention 24-7 which concerns me alot, hubby is gone with the USAF so im all alone and now have to have this done and need to know how long id be in hospital,etc...

Last edited by klstoneking; 07-26-2008 at 05:19 PM.

 
Old 07-26-2008, 06:33 PM   #2
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Re: need advice

Hi klstoneking~

I was diagnosed in April of this year with Chiari malformation so I can understand you being overwhelmed. But the good news for you is after 2 years of not knowing what was wrong, you finally have answers and that in itself is a great relief I'm sure.

Many people wait a long time for this diagnosis. This is something alot of medical professionals are not familiar with and gets unnoticed quite often. The 1st step is do your research!! If you have an understanding of this illness, you will be better equipt to make the decisions you need to make for your health in the future. Being educated is very important because as you'll soon find out, you'll be more knowledgable than the drs you are seeing.

Finding a good Chiari specialist is very important and to know the neurosurgeon you choose is knowledgable will give you the confidence you'll need to make decisions that are in your best interest.

The pain we live with on a daily basis is tough. And I know 1st hand that medications don't help alot. I have chosen to live med free for this reason but many others seek out a pain specialist for relief. I use self medication, which is rest when I need it and not let the pain get out of control before lying down. Rest works for me but everyone is differant.

There are surgeries to help stop the progression of chiari. Its a scary thought, I know. But if you concider the surgeries as putting a halt to the progression, it definately is worth a shot, though the surgey doesn't truly "fix" chiari, hopefuly it will allieviate some of your symptoms.

I have had the tethered cord surgery in June this year and it was not as bad as I had thought it would be. I will be having cranio cervical fusion surgery next and if the decompression needs to be done, I am willing to give that a shot too. Its one step at a time.

If you decide surgery is what you'll need, you'll find a away. It is tough, especially when you have a child with a disability. But you just have to gather all the family support you can. you will need help when your recovering. I haven't had the decompression surgery but I believe your in the hospital for 5 days or so. But having someone at home when you get home will be important, especially for help with your child.

I know this is scary and so many things to concider but life has a way of working things out for us. You just take things one step at a time and things will fall into place. Try to stay calm because stress is definately not going to help your situation. You'll get through this. If I can help, just shout out.

Keep us posted and updated on your progress and know that you have others in the same boat that are rooting for you!!

Take care

Cindy

 
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Old 07-26-2008, 07:09 PM   #3
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klstoneking!!!!!

Hi, klstoneking!!! I remember you from the MS board! Wow, I am so glad I saw this!! I'm sorry to hear about your dx but am very happy you finally got answers!! Cindy will definitely offer you some good input and advice -- she spent time on the MS board herself when she was searching to find out what was wrong. (And lucky for us, she still comes to visit! )

Really, I am glad I saw this and am glad you persevered for answers. I remember being so incredibly angry about the way your doctor was treating you and getting worried when you disappeared!

I wish you all the best and hope you feel better very soon!!!
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Old 07-27-2008, 05:41 PM   #4
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Re: need advice

hi beary! yes i spent many nights on the MS topics because Im guessing that they have some of the same symptons..makes ya wonder who else really has this and doesnt know. Oh and to the other lady, THANKS SO MUCH for all the info, im having trouble finding ANY info on the actual procedure done for this, i have read tons of things on the dx but nothing really explains what they do and all that, because i do have to prepare, i want what ever it is that will fix this and the pain that goes with it...it was kinda funny today, as i was getting outta bed i just fell, i have to laugh to keep my stress down, i think dizzy spells and being off balance is one of the things that goes with this right? and there are specialist huh? bad thing is i have to go to a military doc, so it may be hard to find one for this issue, another thing is we are moving to our new station in las vegas nv in oct. how long after i see a neuro can i get this done? I was told its not something they usually put off and i dont wanna spend anymore time in the condition im in currently ya know. and i didnt know it was something that couldnt be really "fixed" whats the pregression of this??? thats scary..if you have any articles that i havent found, please share..im trying to educated myself on this before my appt so i know what they are talking about..progression of this means something worse than what i feel now?? i cant imagine that! really the only issue i have found with the whole surgery thing is there is no family around, since we are military, we are away from any family...hmmm.so thats gonna be an issue =/ but the bad thing is NO meds help so i try to swim alot and that helps for a min..anyhow, im so glad you guys wrote me back i was beginning to think i was alone in this dx..but any info or article on the actual procedure or procedures( i didnt know there was more than one) would be soo wonderful.THANKS again!

xoxoxo
kelli

Last edited by klstoneking; 07-27-2008 at 05:42 PM.

 
Old 07-27-2008, 06:32 PM   #5
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Re: need advice

Hi Kelli~

I'm glad our responses were helpful in helping you not feel so alone. The MS board was a heaven sent for me. Bearygood and a few others helped me tremendously when I was in limbo searching for answers. They gave me the strength not to give up and search for answers.

The symptoms are very similiar to MS so many people end up there or actually mis diagnosed with MS. Its very sad that so many others are suffering and don't know why.

As far as learning more on the procedure, you'll have to do some searching. There are chiari groups out there but I don't think I'm allowed to share any links here. I happened to stumbel across one and they were very helpful to me.

I can share what I know of the procedure but as I said, I haven't had this done myself. The back of the skull is too small so the brain is being squished. That is why the tonsils sink down. So they open the back of the head and take out a small section of the skull to take the pressure off of the nerves that are being squished.

This also affects the CFS flow surrounding our brain. They have a Cine MRI which helps see if there is a blockage of CFS flow. A chiari specialist will know about this test. I have little flow in the back of my skull. The CFS flow acts as a cushion to the brain and protects and nourishes the brain as well. So this flow is important to a healthy brain and nervous system.

Alot of people experience dizzy spells and balance problems. So a sense of humor when we stumble is a good thing. LOL. I always tell my family I laugh because if I didn't laugh, I'd cry. Here's some of the things people experience:

Headaches in the base of your head that worsen when bending, straining, laughing or crying

pain radiate behind your eyes

Neck stiffness~ pain radiates into shoulders /arms

Light sensitivity~ Blurred vision~ double vision

Pressure in ears~ ringing~ sensitivity

Difficulty swallowing~ Sleep apnea

heart palpitations~ dizziness

Tingling~ numbness~ burning in extremities~ weakness~ stiffness

Bladder and bowel disfunction

Fatigue... And theres many more

The Chiari institute has a questionaire to fill out and its amazing when I went through the list how many things I had that I just thought was normal.

Having the surgery done, you'll definately have to get some outside help. Do you have friends close by that can help? or maybe your hubby can arrange a vacation to be there for you. I know this is difficult and I was having trouble coordinating everything but I finally found a way and you will too.

As far as progression goes, if your nerves are being affected, the sooner you intervine the better. If left untreated, you can have permanant nerve damage. My dr says the best results are if you take action within 2 years of the onset of major symptoms. So you have time to plan.

As far as other surgeries, alot of chiari patients have related disorders as well. I suggest you look into the Chiari Institute. You can get alot of info there.

Keep your chin up and know your not alone. We're here if you need anything!!

Take care

Cindy

 
Old 07-28-2008, 05:49 AM   #6
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Re: need advice

thanks so much, you dont know how much it means to have some idea of whats going on and that im really not "crazy" as i was told on several dr visits...lol I am to get a call for a neuro referral with appt date today sometime so i will let everyone know whats going on, actually im very excited to finally know that my issues arent normal, and all this time i really did have a problem,and if the procedure helps, bring it on..lol and i have found two people to come help me if i have this done....so thats a huge help, and hubby thinks he can take some kind of leave for up to 2 week with pay so thats great also. im gonna search for those groups that you mentioned, i forgot you cant offer sites on here..silly me =) thanks agin and i will keep u updated soon after i get back from my appt , i hope they too dont say im crazy and its all in my head, cause it is....in my head..literally HAHA
thanks
kelli =)

 
Old 07-28-2008, 07:33 AM   #7
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Re: need advice

Hi Kelli~

Its great that you were able to recruite some helpers!! And a 2 week leave for your hubby will be very helpful. I know in my state, they can;t deny anyone a leave to sickness of themselves or a family member. Though they don't have to offer it with pay. My husbands work was wonderful and offered him extra paid days because of my situation. Most people dont understand Chiari so I think they were more compassionate hearing I have a brain disorder that needed intervention. So see, things do have a way of working themselves out. I'm so glad you are getting things into place.

I can relate to being called "crazy" too. When all the tests come back fine and they rule out lyme, Ms and everything else, its gotta be stress or anxiety. That is so very frustrating. I remember feeling like I was GOING crazy because no one would believe me. Even my PCP who has known me for years was giving up on me. I was lucky to have found my own herniation and brought it to theyre attention. I did get oppologies in the end though.

Be prepared that any Dr you go to may tell you that Chiari can't cause your symptoms. Drs are trained that a mild herniation can't cause symptoms so alot of people get turned away once again. But there are new studies and the chiari experts believe that even a mild herniation can cause symptoms. Though small, it can be thick, blocking CFS flow to the brain. So thats why they incorperate the cine MRI and look at the whole picture.

When TCI looked at my MRI they also could see that my brainstem was elongated, which means it was being pulled down. Many people with chiari also have this. So they do the tethered cord surgery to release the downward pull of the brain. The brain "bounces" up when this is done, releasing pressure.

So when I went to TCI in fear of being told this wasn't my problem, I was told by others that the neurologists there would again tell me that the chiari couldn't cause the symptoms. And they did indead say that. But when I met with the nueroSURGEON, it was a differant story. They explained what was going on and why I was feeling the way I was. So if you get turned down once again, look elsewhere and fight for your health. Thats why I say its SO important to educate yourself you you can advocate for you.

Ya know, its pretty sad that we are put through the ringer for so long, when we are finally told we have chiari, theres a sense of relief!! Because we finally have validation that its not all in our heads (though it is LOL). A diagnosis is much better than the unknown.

And your attitude towards this is great!! If the surgeries will help, bring it on. You sound like me. I feel the same way. Though scary to go through, you'll get through it!! Attitude is so important.

definately keep us posted and know I'll be thinking of you and rooting you on!!

Take care

Cindy

 
Old 07-28-2008, 07:48 AM   #8
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Re: need advice

Kelli, ditto on the greatness Cindy spoke of! You know, I went back and looked at some of your old posts on the MS boards. Wow. You BOTH have been through the mill!

You know, I really feel like I need to let other people who have been in MS "limboland" for a long time know about this. I never even heard of CM until I "met" Cindy. Cindy, your succinct post about the sx was great. Regarding the MRI, is the first clue that others without a dx should long for is the elongated brainstem? Is that a given in all cases of CM? And then, what's the next best logical step?
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Old 07-28-2008, 08:26 AM   #9
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Re: need advice

Hi Bearygood~

I'm so happy to see you here sharing and trying to help others. This board is so differant because there are so many differant reasons people stop here, unlike the MS board where everone is in the same boat. But the support on the MS board, is so much better and I think thats why so many of us land there for help. Its nice for people who are struggling to have a place to go and let off steam. And it developes great coping skills to get us through. I have hopes that this board can become the same. Thanks for helping!!

Bearygood, I read so many posts on the ms site that you all respond saying they're symptoms don't scream of ms but there are similarities. Cm and MS are very similiar and that is why, like myself, when we start explaing what is happening to our bodies, dr's start ruling out ms. But once ruled out, then the mission stops and so many end up in "limbo land"

I never heard of chiari until one day on the MS site, someone who was in limbo posted that they finally got a diagnosis of chiari and the symptoms were very much the same as MS. So I began my research. I had a copy of my MRI and got that out. I also found pictures online of a healthy brain and one with chiari. I compared them to mine and it was SO obvious!! but on the report, my MRI was read as "normal". I brought this to my neurologist and he had radiology do another reading and sure enough, it was overlooked. The neurologist said that he was sorry but wasn't looking for that. He was looking for legions to rule out MS.

So you do wonder how many others on the MS site get overlooked too. I know when people come there you offer advice and tell them other things that can cause these symptoms. You all ALWAYS talk of lyme so maybe you can also throw in to look into Chiari as well. Thats the only way people can gain awareness. If they've never heard of it, they can never suspect it.

As far as the MRI goes, the 1st thing noticable is the descending tonsils. A normal brain, the brain sits up high and if you use a ruler, it will be straight across. With chiari, the brain seems to slant downward at an angle as its being squished. So thats the 1st step in a diagnosis. As far as the brainstem, unless they are a Chiari specialist, Dr's probobly wouldn't even notice this. I could see this on mine because a normal brain stem is plump and a bit rounded. Mine was straight down and you could tell its being pulled looking at my MRI.

The next step Beary, is that we are only wasting time from this point on, trying to find Dr's to help. So my only advice is skip that route and find someone who specializes in Chiari and has more knowledge. Sort of like the advice you give for people to see an MS specialist, because thats what they do, they are more aware of what to look for and look at things differantly than just a neurologist.

But seeking out a specialist can be scary because there is travel involved and added expenses. Its so easier to just stay local. But as my neurologist stated, I never would have gotten a local neurosurgeion to touch me. They would only look at the mild herniation and send me away. So my hubby and I put the expenses on the back burner because if this was cancer, we'd get treatment no matter what the cost. This disease should be know differant. It can cause death and it has.

So feel free to send others here who suspect cm and I'd be more than happy to help if I can. It saddens me to hear people who are being swept under the rug because drs just give up!!

Thanks so much for all of your support!!

Cindy

 
Old 07-28-2008, 10:50 AM   #10
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Re: need advice

Speaking only for myself, when I suggest that someone look into Lyme it's because that is one of the dictated conditions to rule out when looking at MS and as such, is a logical step for anyone whose sx DO wreak of MS. And as you know, it can mimic MS down to the lesions. There are also a lot of people with very general sx, some that are a little suspicious but not unique to MS and then there are others who don't sound like it at all. So many people find themselves on the MS board with things that could be as simple as just a pinched nerve. But there are also many people experience what Kelli went through -- their doctors tell them they're crazy but they are very obviously exhibiting neurological sx! I have seen other people on the MS board who are very quick to say something sounds like MS -- I tend to be more conservative and try to be very careful about what I say. Especially when you don't know what MS is (and so many of us thought we DID know before we were dxed but we were wrong!) it is unbelievably scary.

My query was mostly in regard to those people who seem to have exhausted every possible avenue and obviously have something wrong. I have seen A LOT of them and they're only getting worse over the years and during that time, absolutely no lesions have been revealed. So for those people whose sx do sound similar to MS, I will certainly tell them to look into Chiari.

Besides the brainstem, are the tonsils always implicated?
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Old 07-28-2008, 11:18 AM   #11
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Re: need advice

Hi Bearygood~

I get where your coming from. There are so many things that can cause this range of symptoms so you have to be careful not to stear people in a wrong direction. But when others hit a road block and are told their symptoms can only be something emotional, when month by month, we are getting worse, thats what frustrates me.

I know myself that my legs were not moving. It fealt like i had elastic bands tied around my legs, holding back my steps. But I LOOKED normal to drs, so they just couldn't comprehend what was happening. I definately don't believe Dr's do this purposely to make us miserable, I just believe they really don't know. And thats when if we don't find it on our own, in a short time, we will be in trouble.

Remember my PCP I always talked about that I loved? Well when he got frustrated with me, he said, "cindy, alot of times, in the end, we find out it is stress related" and I lost my patience with him and stood my ground that he and others just weren't finding my problem. A few days later, he called the neurologist he refered me to and asked him to dig further.

after my tethered cord surgery, I went to my PCP to have my stitches removed. He by then had been informed of my diagnosis and that I had chiari. He smiled and said "you know me. When I heard this, I investigated and researched this myself". I then offered him some literature I had prepared for him and told him that maybe this will help the next person who comes to him and he thinks they're "nuts"

So its all about spreading awareness. Its more widespread than they previously thought it to be. But many people go a lifetime without needing an MRI or showing symptoms so they never will know it exists.

The tonsils are what they look for in a diagnosis. 5mm or more is concidered a "true" chiari diagnosis. But even borderline chiari, under 5mm can cause someone extreme symptoms. But generally, only chiari specialists will recognize borderline, while other neurosurgeons will turn someone away.

The other thing to know is that some things can actually trigger the onset of symptoms. Head trauma, such as a car accident or fall or even sports and amusement rides can bump and cause the tonsils to descend. Childbirth is another trigger, one from pushing and also epidurals and spinals messing with the CFS pressure. Remember after my LP, I went down hill fast.

My oh my, Bearygood, you got me on a roll!! LOL But I know that you are a gatherer of information and you research all the time and you help so many with your world of knowledge. So I'm glad I can pass this along to you in hopes of someone someday, will benefit from that.

 
Old 07-28-2008, 11:40 AM   #12
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Re: need advice

No, Cindy, this is all great!! So what test has to be done to see the tonsils? I do remember you were on the MS board when you started compariing your MRI to others and found that it looked different.

What you're talking about is exactly the reason I want to find this stuff out. Honestly, I have come across people who have slid far downhill and are still waiting for their "MS lesions" to show up!!

(Sorry for the tangent, Kelli -- we don't mean to overtake your thread, LOL.) Cindy, you should look at some of Kelli's old posts -- I think you might find them interesting. (Two different names, but similar.)
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Old 07-28-2008, 12:01 PM   #13
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Re: need advice

I hope Kelli doesn't mind but it also will hopefully give her a better understanding herself. I'm definately going to take a look at your other threads Kelli. I'm sure of what I'll find will be very similiar to so many other chiarians.

The only thing that can determine the tonsils being desceded is a brain MRI. This also will show the elongated brainstem if it applies. The Cine MRI is done of the brain to see the cfs flow and an MRI of the spine can be done to determine if a chiari patient has SM, which is also a related disorder where, because the fluid is not flowing properly, it gets "backed up" in the spinal cord because it has nowher else to go and creates a pocket per say.

The tonsils are actually the brain sinking into the hole at the base of our spine. Picture holding a skull in your hand and sticking your fingers into the hole. The nerves that travel from our spinal cord up to our brain don't have enough room so they are being squished by the pressure of the sinking brain. Long term, if the nerves are left compressed for an extended period of time, they can become permanantly damaged.

This effects not only our body movements but affects our involuntary movements such as our hearts and breathing and bowel and urinary function. It definately can do some damage!!

Its so sad that when people are in limbo, that theyre best hope is to wait in hopes that legions will show up, giving them an MS diagnosis. But I remember wishing that too. At least then, you can put the unknown to rest and move on!!

 
Old 07-28-2008, 04:50 PM   #14
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Re: need advice

Good evening, ladies! Just wanted to let you know that I've posted on the MS board about this.
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Old 07-28-2008, 04:52 PM   #15
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Re: need advice

Bearygood, your great!! Thanks for putting the information out there for others to see. I'll head over and checl it out!!

Cindy

 
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