My Chiari malformation

[Jm_smalformedbrain]

Hi! I was diagnosed on December 20th of 2013 with C1 malformation. My Neuro called and said, "we didn't find a tumor...but...". There's always a but...and most of the time the things that follow a but aren't good. I then found out about my interesting, annoying, and dreadful intruder. My dad jokingly calls it my Chia pet because that's what he thought of when my mom told him. LOL.

I keep things humorous because if I don't I tend to worry and focus on the pain and other symptoms I have. It's like I finally have a reason for all of the chaos in my body. I've thought about writing the doctors that have treated me in the past and say, "your looks of craziness were not necessary and I'm not an idiot!"

4 weeks later, I am thankful to the nurse practitioner that found this and am awaiting my 2nd neurosurgical visit. I went to a Dr. In Dallas, Tx as I live in east Tx, and I wasn't impressed. He told me all of my symptoms weren't from this by looking at an MRI brain and MRI C spine. He ordered a cine flow that day and the next day his tone changed drastically. He said my csf flow is severely diminished on the anterior side of my brain stem, and they couldn't see this on the other films.

I've read through more websites on this than I care to mention and I've narrowed my Dr search down to a Dr in Little Rock, Ali Krisht, and the Mayfield Chiari Center in OH. We are leaning toward Little Rock due to closeness and aftercare. My herniation is 7mm and flow is blocked on one side of my brain stem.

I've suffered many years with severe migraines, since 10, and within the past 6 years a plethora of symptoms compounded on me and I believe this is the progression of this malformation. I have over 4 comorbid diagnoses with this, like hypothyroidism, partial epilepsy, PCOS (we are infertile and sterile), and borderline diabetes. Also, IBS and chronic bronchitis. Interestingly these can all be non scientifically related to Chiari. Anyways, I'm getting ready to see Dr. Krisht in Little Rock and wondered if anyone has heard of him? Also, should we travel as far as OH?

My MRI c spine showed no syrinx, but I have extreme pain across my shoulders, in my neck, and down the right side of my spine. Is it possible I have one lower in the thoracic region?

Well, I finally mustered up enough courage to post on here. It feels good to vent and I hope someone understands where I'm coming from.

Jen

[kwalker0004]

Hello and sorry for !y long delay of a response. I was diagnosed in January of this year. After my headaches reached the point of lasting two weeks, I knew something wasn't right with me. It would be interesting to see if the two have any relationship. As it doesn't seem we are fully developed when we are preemies. But our skull bones are fused together until we are older giving us time to allow are skulls to form around our brains. Though I'm no doctor I can only share n opinion from what I have learned through my education. I think for people to be born with has to be something to do with our genetic make up. Because out of 16 brothers and sisters no one other than me has it that we know of. So I believe it would deal with genetics more than anything!!

[selmaS]

  Hi, I am so sorry you  had to learn this the hard way, but so many of us are willing to go with the first Dr that offers relief....it can be difficult to know whom to go with....and why I always say find a true Chiari specialist and have testing for ALL related conditions as they can affect how you feel and heal post op.

Thanks for the update...and do keep us posted on what your new Chiari specialist offers to do to help you.

[Jm_smalformedbrain]

I wanted to update this post: It turns out that my first decompression surgery did not go well, as after 3 months post-op, symptoms returned and more severe symptoms have emerged. I am seeking the help of a Chiari specialist, not the doctor I originally had surgery with, and feel relieved that he said he could help me. Note to all Chiari'ans out there: get a Chiari specialist, one that just doesn't say they're a specialist, or nurse says they're a specialist, but one that actually knows his stuff and can prove it. And, see if you can prove it through other patient's success stories so that you know they are walking what they talk. Also, get checked for related disorders. It's important.

[Jm_smalformedbrain]

Thanks for your post and sorry for my long delay in response! I would like to see if any research is being done on the preemie thing and Chiari. I know I have ROP, Retinopathy of Prematurity, and they have already had to laser down my right retina because they didn't understand the whole delay in retina development when I was born, so I had damage. Interesting. When were you diagnosed?

[kwalker0004]

I am as well a 2 month premmie. The so called doctor thought I was ready to come out when really I wasn't. They induced my mother and had to use one of those suction cups to pull me out. They sent me home two days later in cabbage patch doll clothes since that is the only thing that would fit me. Thank goodness it was July. For 2 months I slept in a size 10 shoe box,  then I slept in the beside drawer. I really never wailed I squeaked like a mouse when I cried so I got the nickname mousey. I think i hate cabbage patch dolls ever since. It makes me sick to think that this could of been the reason all my full term brothers and sisters (16 all together) dont have this issue. So what's the odds of 1 of 17 children being the only one getting it, the only one being premature, and the only one who seems to know what she wanted from life to have it all halted because of unbareable pain. I guess I'm lucky in a sense because I never had a broken bone or any surgery like my other siblings have had. It ***** but God doesn't give us anything he doesn't think we could handle. I'm a firm believer inn this. God created us this way whether or not to test our faith or see how strong we are. He knows at some point if we aren't already believers, we will turn to him and give it to him as he is the true healer of the body. We may find temp. Relief from doctors but only through him can we find the relief we all desire. I'm done preaching and I usually dont bring him up but tonight I felt him speaking and Ishall not deny him.

[selmaS]

  The list is not meant as a referral nor endorsement that the Drs are good Chiari Drs, just that other members went to them and were treated by them and liked them....we have to see a few to compare and see which one we r most comfortable with....as I may not like who u like and vise versa....u need a connection with ur Dr so u trust them....other wise it is not a good partnering....

POTS they may start with a tilt table test...look at ur BP...

With Ehlers-danlos there is a clinical test of observation...and the Brieghton test score....u can google it...and  since there are several types of EDS, u may have to have some other testing....

The Dr should mention these things ....mine did and that is what I expect from a Chiari specialist...as I said these conditions can affect how u feel and heal post op and over all how well the surgery may benefit u......

[Jm_smalformedbrain]

Well, I saw Dr. Jackson in Dallas (he was listed on the Dr list on this website) first. He seems brilliant, but his bedside manner was horrible!!! He wasn't even going to do the Cine MRI until I insisted and then called back the next day just to say he was wrong and that I actually did have minimal flow on the posterior foramen magnum. My husband says I'm not looking for a Kindergarden teacher, I'm looking for a neurosurgeon that's the best of the best. They aren't going to pat me on the butt. But...lol...my personality seeks that out. So, I guess, I'm looking for a little personability with this Dr. He comes highly recommended and after having numerous conversations with his nursing staff, they say he does 1-2 CM1 surgeries per week. This made me feel a little better. And, I'm tired of living on medicine all of the time. I'm ready to feel better. I am going to request an MRI of the L-spine and T-spine just to see if there are any syrnix's there. How do they test for POTS, Ehler's Danlos, and the other things you mentioned? And, do I say those things specifically on Monday?

[selmaS]

  I understand ur frustrations and u wanting to deal with this asap, but that does not mean u will want surgery with the first NS that offers it....as I know far too many that have had set backs  and multiple surgeries as a result.

U r right to question the Dr, but u will want one that rules out ALL related conditions as they can affect how u feel and heal post op.....

As for being a preemie....not me....

For studies, there is a thread about Chiari studies by the NIH.....not sure this topic of being a preemie was one they have done so far.....

[Jm_smalformedbrain]

I have a doctor's appointment on Monday with Dr. Ali Krisht in Little Rock! This time, I'm taking a completely different approach unlike my last visit with a different Neurosurgeon. This time, I'm focusing on what I want and what I feel like needs to happen as opposed to waiting and anticipating every word the doctor says. I know what's wrong with me. I know what I feel. Now I want the experts to help fix it. I look at it from a Therapists' standpoint since I am a Therapist. If a patient comes to me with depression, they usually come to me with symptoms of depression that they've known or have noticed. They don't usually expect all of their symptoms to go away immediately, and oftentimes need the assistance of drugs to help. But, what they do expect is for me to help them and expertly guide them through the healing process. This is what I want my doctor to do. I don't expect that all of my symptoms will be relived or completely alleviated, but what I do expect is for them to listen, and then guide me through the healing process expertly.

I have decided to have surgery and as opposed to waiting months to do it, as I initially had desired to do, I'm going to request it as soon as the NS can do it. There's too much anxiety and fear in my mind to keep putting it off to "find the right or perfect doctor" because for me, that could take forever. I might not get someone that caudles me the way I want, but they are the expert that I need. My husband and mom are going with me to this appointment so I have two more sets of ears listening to what's said and to make sure I say everything I need to because I forget a lot these days. I have been keeping a symptom journal everyday and I documented a full months' worth of symptoms so that they could see through my eyes. I encourage everyone on here to do the same.

Another encouragement I wish to share is something that none of us every want to hear: it could be worse. On my worst days, I never want to hear this because I'm in so much pain or discomfort I don't think it could be worse. But, I am thankful that I'm here another day. I'm thankful I'm not fully progressed in this disease and I'm thankful the Lord blessed me to not have the type II, type III, or type IV that I could have. Coincidently enough, my mom had another baby when I was 4 that had hydrocephalus and what the doctor's said then "something wrong with her brain" that they told my mom, and she was still born. I fully believe it was this disease and they didn't know it then. I think someone in my family has this and if my mom and dad don't have it, someone is carrying a gene for it. I was born at 7 1/2 months. A preemie!!! I was a whopping 2lbs. I'm curious. Is anyone else on here with Chiari a preemie??? Does anyone know where we can look into being a part of a research study on Chiari?

[Jm_smalformedbrain]

I will definitely keep y'all posted. I called Little Rock today and they said all they're literally waiting on is the referral from my doctor. They want to see me ASAP, but can't until they have that piece of paper. What happened to just being able to go to the Dr. when you needed to and a Specialist when you needed to? I called my pcp and you know what they said? I asked if there was anything I could do to help and that the Dr in Little Rock said they want to see me. She said well the RN has to do it and she should've already done it and that it would be done when she got it done. I said well, I really need to see this doctor and they want to see me. She said, well get in line with the other 50 people that are waiting!!! I'm floored. I will be changing pcp' safer this for sure. Ridiculous. It's been over a week. I'm sorry about your daughter. Why'd she have to have the surgery on her feet? I haven't even begun to explore Ehlers Danlo yet. You can rest assure that if there is any csf flow blocked they will be able to tell on the cine. It is a long test though. 1hr and 30 for me. Of course I made it fun by making robot personalities to go along with all the loud noises the machine made. The staff laughed at me because I didn't realize they could hear me. Lol. The cine is a lot louder than other mri's. I'm praying for your daughter and tell her she's not alone.

[selmaS]

  It is not easy to go from being independent and active to having to slow down and rest so u can heal...but, it is also difficult to deal with constant pain, so  knowing keeping still for a time may help cut it to less then half of what it was....ends justifies the means....so to speak.

All I can tell u it does get better.

[Breezysmom]

Chia pet!  That's a good one!!  Please let us know what you find out in Arkansas.  My 17 year old daughter has a cine MRI this Friday and I'm dying to find out if her csf flow is diminished.  My daughter's chiari showed up on an MRI 3 years ago, but no one bothered to tell us.  They told us it was "normal".  But she's been living with horrible, debilitating headaches for over 3 years that medicine hasn't ever touched.  She also had reconstruction surgery on both feet the last few years, but I just figured out (from google research!!) that she has ehlers-danlos.  She also seems to have POTS, but not sure about mast cell yet, or vitamin deficiency though I suspect it.

You are not alone!  Since we seem to be headed down the same road right behind you please let us know how you are doing and what you find out.  I've been leaning toward Duke University and Dr. Fuchs.  They were the ones who told me when I called to definitely get the cine MRI to check her flow.  I also have heard a lot about the Chiari Institute in New York.  Both are within driving distance. (we are in Hampton, Virginia)

Good luck!

[Jm_smalformedbrain]

Thanks so much Selma! My husband and I have decided if the Little Rick Dr doesn't fit our fancy, we are going to the Mayfield Clinic to see Dr Tew. But, I'm hopeful Dr Krisht will be amazing. I'm definitely writing down what you said about EDS, tethered cord, and disc issues so we can rule them out pre-surgery. I have started a symptom journal and have kept it going all this month just so I can track my symptoms and the Dr can really see what I experience daily. Today was awful. Severe neck and spinal pain, lots of muscle twitching, and so tired. It seems my good days are starting to become fewer and fewer. I'm hoping surgery helps at least a little bit. :/ How do you go from being an active, running and healthy person, a Therapist working on a Ph.D, to this? Some days I forget the most simple things.

[selmaS]

  Hi and welcome to the Chiari forum.

  Ur post could be the post of ne member here since ur comments are so similar to what others have posted in the past....we all seem to go thru the same ordeal with Drs.

As for  would I travel to get to a true Chiari specialist, yes, and I did...it is well worth it  as opposed to dealing with a Dr just bcuz they are closer to home....too many deal with post op issues and I feel it is bcuz of the lack of experience the Dr may of had.

I also feel it can be traced to not finding related and underlying conditions ....many of which can affect how u feel and heal post op.

A syrinx can form in the thoracic and lumbar spine, plus in addition to doing a MRI to rule this out, u can also rule out disk issues and tethered cord.,

  Ehlers-Danlos* is another related condition u will want to rule out as is ICP, POTS, and sleep apnea. Those with Chiari are prone to auto immune conditions like Hashimoto's thyroiditis...which may be part of ur thyroid issues...and we are also prone to connective tissue disorders which is why we rule out EDS*.
The we must look at our vitamin and mineral levels as they too can be affected by some of the conditions we may have..vit D, B12, magnesium and potassium...are some of the more common ones that tend to be low.

I am not familiar with that Drs name, but we do not know ALL the Drs that are out there that are well informed with Chiari....u may be the one to add that Dr to our list...and I do encourage u to look at the list to see if that name is on there and to see others u may want to research.

http://www.medhelp.org/health_pages/list?cid=186