Chiari Malformation Community
Chiari 1
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Chiari 1

My daughter is 16 and was diagnosed with a Chiari 1.  Her tonsil extension is 13mm, which we were told was abnormal.  Research says anything greater than 5 is considered significant.  We were told by a neurosurgeon/chiari specialist that surgery was not needed now.  There is no evidence of s syrinx or anything.  But I am concerned about the progression.  He says it probably won't progress because as we age our brains shrink.  But I am doing some research and it says that it's rare that it will progress, but that doesn't mean it won't.  How do you know whether it will or not...just by following up with MRIs?  In one of her MRIs, it shows she has epidural lipamotosis...is this anything to worry about?  I am open for any advice.  Thanks.
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620923_tn?1413427272

  Hi and welcome to the Chiari forum.

May I start by asking some questions?....Why did u have the MRI's done?...what symptoms were ur DD having that she had testing?

The size of a herniation is not the main consideration, whether or not she has a CSF obstruction and overcrowding  is....did she have a CINE MRI as well?

What areas were MRI's that a syrinx was ruled out? A syrinx can form in ne area of the spine, and if u do not check the entire spine u can not say there is no syrinx.Too many drs feel if there is going to be a syrinx, they will find it in the cervical spine, but we have several members with them in the thoracic and lumbar spine...so u do have to check the complete spine to be sure.Plus it will help rule out tethered cord too.

I am also curious, is ur DD asthmatic?...and does she have an issue with her weight at all?The epidural lipamotosis may not be nething much...and can be something that can go away depending on how or y she acquired it.

May we also ask who ur NS is?...how u found the dr?...we r always adding drs to our list if they r not already on: )

"selma"

  
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Hi thanks for replying.

We had an MRI done because I was picking her up from school with severe headaches, which caused memory loss, shortness of breath, chest pain, slurred speech, to name a few.  They are treating it as migraine headaches.  We then went to a neurosurgeon when we also found out that she has a Chiari I.  He tells us it is fine for now, no surgery needed and that he will re-check in 2 mos.  Said there was no syrinx evident.  He was the one who requested the MRIs.  I don't believe we have had a CINE MRI yet.  

Now, after just an appt. today with a spine surgeon....he needs a little bit more to time to read the reports....but tells us he thinks he can see a syrinx in the lumbar area....but might not be a true syrinx.....not sure about all this yet?  Although I have done a lot of research.  And that is exactly what he said, we have to be sure so that it does rule out a tethered cord.

My daughter is asthmatic, why?  She is having trouble gaining weight.  I thought it might be her thyroid since I have hypothryoidism, but apparently they feel it's a normal range of 1.58.  

We discussed the EL....he said he needs to work on that a little bit more also.  Do you think that is what is causing her weight gain...or what?  

Our neurosurgeon for now is Dr. Gardner at UPMC Presby.  I was referred to him by another chiarian patient.  

Whatever help I can get on this I would appreciate.  She has constant back pain...this spine doctor told me to go ahead and start physical therapy today as well.  Any help with that...as far as being a Chiarian....what should I not let them do?

Thanks.
Debbie
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Hi Debbie! I am 34 yrs. old and was finally properly diagnosed with CM type 1 almost 4 years go after the birth of my 2nd child. I have been suffering symptoms my entire life, constant headaches, bladder problems, poor balance, speech problems, severe low back pain, etc. I had an epidural that punctured the dura layer during childbirth and developed a severe spinal headache that lasted 28 weeks. I had been to over 20 doctors and had MRI's done 2 years prior to this and every doctor said that there was nothing wrong. I researched the spinal headache and by the Grace of God I found a post by a woman discussing CMs.

I saw a CM specialist in Milwaukee, WI who looked at the MRI's that had been done years prior and he saw the malformation immediately. He did send me for subsequent scans to see the malformation in greater detail.  I am herniated (or was 4 yrs. ago) at 6mm. Doctors have now concluded that the length of the herniation means absolutely nothing. They have now added "Chiari Zero" as a classification. The scans from yrs. prior also showed a spinal lymphoma according to the radiologist report. The dr. at the time told me it meant nothing but I asked how could it not when I was in severe lower back pain. Back then it was believed to be a fatty buildup or tumor on the spine that only occurred in obese people. I am only 4'11" and weigh 89 lbs. so they said no way. In today's terms it is now called "tethered cord syndrome".  It is something very much related to those with a CM. I actually have a "dimple" at the base of my spine that you can see quite clearly.

I had been a gymnast for over 13 years as a child and had been involved in 8 auto accidents between the ages of 17 and 20. My doctors feel that based on my history I was born with this and that all the trauma I induced upon my body may have increased my symptoms. The worst of them are severe headaches, low back pain, and swallowing. I can choke on water that's how bad it is.

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Enough of my history and now on to your questions...
I have tried PT on numerous occasions without much success. Also OT which she may benefit from as they discuss every day activities and may be able to help her with different methods of doing things to lessen the symptoms. Examples would be things such as bending and lifting without straining, etc. Keep them away from her neck at all costs! She may benefit with massage therapy. It feels good and helps you relax even though it's a temporary fix.

Do not take her to a chiropractor at all. They can make things 100X worse. I found that out the hard way after my 1st car accident and my mom was taking me to a chiro 5X a week for 6 months.

Constant position changing may be helpful for her. Also the use of lumbar pillows are good. I am guessing she's still in HS and that must be very hard on her. I missed a lot of my HS years due to extreme back pain and headaches. Make sure you talk to her teachers and counselors about her medical problems and perhaps have her doctors write up something for her. She made need to stand during class at times, change positions, etc. to help with the pain. I have found some back exercises somewhat helpful. By building up different back muscles it helps take some of the pressure off of the lumbar area.

Unfortunately we don't live in a perfect world and we can't put our kids in a bubble but those of us with a CM sure could use that bubble. She is going to have to try to avoid any and all trauma to her head, neck, and lumbar area. Have her try different foam based pillows as she may find some relief their. I have to sleep with a pillow between my knees as it takes the pressure off of the lower spine and hips. I also finally purchased a foam mattress topper and it's been a Godsend. My sleeping patterns have been terrible due to the pain and this has helped immensely. My hubby likes it too!

She will need to abstain from certain sports and absolutely no roller coasters or carnival rides that would jar her head, neck, and back around. Unfortunately with CM it also means no epidurals, that includes for childbirth or any other abdominal surgeries which in itself stinks!

Some doctors will tell you that prescription pain medications won't help but that isn't true. I have been fortunate enough to find an awesome pain management doctor who helps me very much. It sometimes is a last resort kind of thing but it may be beneficial towards the low back pain and at least help her to function a little better. I have tried various types of meds from muscle relaxers, to anti-depressants, narcotics, OTC drugs, and nerve pain drugs. Over the past 6 years I have now developed severe problems with numbness and tingling in my hands and feet. I haven't been able to work in over 6 years which has been hard as I always loved working. I had also dropped out of college at 19 as I could no longer sit through my classes or missed them all together due to pain.

I too couldn't gain weight even if someone offered me a million dollars to do so. That was especially hard during my last 2 pregnancies. I had only gained 16 lbs. with my 2nd child and a mere 12lbs. with my 3rd. Just the strain of the pregnancy that had on my spinal cord was enough to decide I will not have any more kids. I think that pain has a lot to do with it and perhaps if it were controlled a little for her it may help her gain weight. I know that it has helped me even though I still am very underweight as far as the doctors are concerned.

I visited numerous neurologists and 2 who specialize in treating CMs and other related conditions. One told me that I absolutely needed to have the decompression surgery and the other said I didn't. I did a lot of research and I still elect NOT to have the surgery. Too many risks and complications. I will only do it as a last resort and even then I'm not too keen on it. The risk of meningitis and other infections is really high and very common with the surgery. Now as far as the tethered cord surgery, that is something that I greatly consider having once my kids get a little older (My oldest daughter is 17 yrs. old, my 2nd daughter is 3 and a half. and my son is 14 months old).

I would really follow up on the possibility of her having a tethered spinal cord or some other condition. Be adamant about getting tests done and most importantly don't give up! Knowledge is power and unfortunately drs. these days literally spend all of 15 minutes in Med school learning about Chiari Malformations. That's why my primary care doc that I have had for 31 years never caught it. He should have when I was a child complaining of headaches, low back pain and very frequent urination. It isn't normal for a human being to use the bathroom 50+ times a day! Be her advocate and don't settle for "No's" or the famous there's nothing wrong with her, it's in her head. Well, yes, it's literally in her head!

Besides her low back pain, what symptoms does she have? Ask her to write them down and to actually keep a daily journal of how she feels and what may make things feel better and what makes them worse. This will be a very helpful tool to share with her doctors. It will help you both as well have a better understanding what is causing flare ups and perhaps a PT or OT can help with these.

Here's the key to remember... All Chiarians are unique and special. It affects us all in different ways. Be strong for your daughter and fight for her. Don't ever give up! This is something that will affect every aspect of the rest of her life! I too was being treated as having "migraines" which can be similar to Chiari Headaches but of course the treatments didn't help.

Sorry for the long post but I am VERY interested in trying to help you in any way possible. I just wish that my mom would have paid more attention to my symptoms and advocated for me. She always felt that I was exaggerating my pain to get out of doing things when I wasn't.

Please let me know if you have more questions, I'll try to answer them the best that I can. I haven't talked about Chiari with anyone in a few years now and it feels good to be back into the swing of things. After awhile you get overloaded with info and reach a point where it's something so unique to the individual that all the advice from people is hard to process.
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Sorry that i had to do 2 separate posts! I had exceeded the 8000 word limit! LOL

But again, I'd love to talk with you and hear more about your daughter!

Julie
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Thanks for sharing that information with me Julie.

I guess I should wait to post after I hear what our spine doctor says.  He is supposed to call me today or this weekend.  

Her main complaint is her back...lower...hurts all the time.  She occasionally still has headaches, but in the beginning was everyday for two weeks.  She complains of neck pain in the back (almost like the bottom of her head).  Other than that, all the other symptoms she had that I mentioned in my earlier post was when all this first happened in November.  

Oh, and I won't give up fighting for her...she's my life!  I will let you know what I find out.  Thanks again.  You take care!
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