Thank you for sharing this. The waiting is definitely getting to me but I also feel that everything we have done has been necessary and I can move forward with peace of mind that we are making good decisions. I am so hopeful that the surgery will help. We are getting closer on the other test, the CT Myelogram but still haven't got a date set yet. My gut is telling me things will happen next week so we will see how right I am. It is nice to know that he continues to ride as well. I am not anywhere close to that acceptance yet but if that is where her heart is then I will not stop her. I don't think I will ever breathe normally again though while she is on a horse but time does heal all wounds they say so maybe it will work out. I would still prefer a dog though at this point.

Just thought I would post another update as things are progressing towards surgery now. We did end up seeing a 3rd neurosurgeon and he said the ligaments in her neck were inflammed and put her in hard neck collar. She hated the collar and refused to leave the house but more importantly she said it made everything worse. I didn't have a great feeling about this NS and it was confirmed when I called to ask about the collar hurting he basically just said, "I don't know, we just wanted to offer you something" So, we ended going back to the first NS that we both liked, wrote him a very personal letter and we got back on track with things. She had a CINE MRI in June which shows CSF flow and we found out that she is almost completely blocked in the back of the brain. But, that MRI also showed that her herniation was actually worse then on the MRI's in April and that really got the NS's attention. However, at that particular appointment she looked great! Better then she had in weeks so he asked her to do some soul searching about what she wanted, what she was able to do and to really think about surgery. She spent most of June really thinking and we started pushing more, asking for more school and more responsibility to see if she could do it. It didn't take long for her to feel overwhelmed and realize that she could do some but wasn't able to get back to a normal level of activity. So in July we saw NS again and she was able to ask him all her questions about surgery and told him she was ready to move forward. He did want to have a CT Myelogram done first which is a CT and a spinal tap where they can check her CSF pressure and check for a CSF leak. We have been waiting this whole month to see if that can get scheduled. There are only a few doctors he will let perform it on her and the one he wants doesn't see pediatrics. Oh, it's never easy...they really need to do this before surgery because, one it could help and two because it can pull the brain down farther making the herniation worse. So, we are sitting and waiting. She has had a tough month, stopped going to activities in late June and has really been bed bound for most of this month. Dizziness is getting worse to the point where even bathing is hard and she is still seeing orange spots in her vision and the ringing in her ears is also worse. I am pushing for surgery the first week of August whether the CT is done or not. She can't keep laying here. The NS said he would probably just schedule an urgent surgery but he was waiting to see if he could get the CT to happen first. Please keep her in your thoughts as we move closer to this reality. I have peace about this although I am very scared. We both have complete faith in the NS and there is not a shadow of a doubt that we are in the right place (seeing multiple NS's helped me figure that out). He is so compassionate and told me he would not do surgery unless he was going to be in town for a period of time to see her though this. He said she was not a patient where he could do surgery and leave town the next day. He wouldn't do that to her. I know at this point it's going to happen it's just a matter of time. On a positive note, she does not have Ehlers-Danlos. Finally some good news. :o And she is getting some time to process things and talk about it and she has now told most of her friends and she is talking about surgery openly and that needed to happen. We need her strong enough to fight, she needed to be on board with this decision and she finally is. But, it took quite awhile to get there. ​

Thanks for asking. Didn't realize this thread had come up again. We have seen two Neurosurgeons at this point and both have confirmed Chiari 1 Malformation. Her herniation is small at only about 3.5 mm. We like one of the NS very much but he still thinks she is dealing with some post concussive issues, mainly her eye tracking and frontal headaches. So this has been an ongoing discussion as I don't think her symptoms are still related to the TBI. She was referred to a pain clinic and she has started some PT, acupressure and pain counseling but PT has been the most valuable in getting more info. She recently had a flexion and extension MRI, the NS said he felt that her images reflect whiplash but again we disagree on this as the TBI was 16 months ago and I have heard countless times that her symptoms don't fit PCS. So, we are going to send her images and reports to another NS and see if we can get more info. She is still unable to do school most days but she is getting out of the house more, or trying to anyways. Unfortunately we did have to re-home the horse. :sad: In the end where he went was up to her and she choose a rescue that she felt very comfortable with. She needed to get out of the barn that she/he was at. It wasn't a good situation and I think it was causing a lot of emotional issues. She has not been back to the barn in a month since he left but she is doing okay. Hopefully at some time she will find the right barn with the right people and be able to ride again. The horse is doing great, has a girlfriend, the day he arrived she actually pushed food into his stall from hers) and they are pretty inseparable. The rescue loves him and they think they might keep him. My dd has been out there to see him, was able to take him out and brush him and she can call or email anytime she wants an update. Even though I was terrified to proceed with this, it really has been a good thing. My dd is also really starting to discover other things that she likes, like dance and photography so I am really hoping that she grows (she already has) threw this process. But, medically she is still very much fighting. The NS said she was significantly compromised and would not do surgery right now anyways but he wants to get her stronger and see if he can reduce any symptoms that might be coming from the PCS. She will have to be followed for life. She goes to see a geneticist in June to be evaluated for Ehlers-Danlos Syndrome and a Spine Doctor (her full spine MRI showed multiple bulging disc in both her cervical and lumbar areas as well as inflammation). in June as well. I think I have learned that there is no quick fix to this and the day to day is still just as tough, almost harder because I expected some relief by now and it only seems to be getting worse. :confused1:

I am looking at the Bridgeway math and English program for my 8th grader. Not sure if it would be to start this year or next. She needs to start slow and have a lot of review at this point. Has anyone used these program? TIA

I am confident that if he had said shave or cut she would have bolted from the room. I think that made a huge difference and I think he could see that for a teen girl that's a big deal so he really spent time on talking about that. She doesn't do well with needles either and I am not sure she will even feel well enough to eat that much. He said 3 days stay so that's pretty short for brain surgery in my opinion.Her hair is pretty thick too so I am guessing by the time she feels well enough to be out and about it will be okay but she does like the bun and I am sure that will hinder her doing that because she wont want it to be noticeable.

Thank you. I spent a lot of last night crying but I think I am back to being functional today and getting things done that she needs. She is doing okay, she asked to sleep in my bed last night (hubby works nights) so I know it was on her mind because at 14 that doesn't happen too often - either really not feeling well or really down. He spent a good deal of time explaining things to her, including how he would handle her hair (just shaving the underneath) so her main questions and issues on the way home were about taking stitches out and eating hospital food. She said the idea of surgery didn't bother her too much. I think you get to that point in your pain that even like surgery if it offers some hope can feel okay. He did speak pretty directly to her and she often doesn't like that. She likes those that are more soft spoken (the first doctor) and he directly talked about riding which of course he warned her against. Not so much because of the Chiari but because of the history of concussions. He talked to her about treating Steve Young from the 49ers who retired after 4 concussions. So he seemed to get both issues really well, which was important to us. That is very interesting about your experience SASS at Stanford and LP. There are many advantages of going with the NS we saw yesterday. Being 30 minutes from home is more comforting then 3 hours for sure. I know I will never doubt my gut again, that intuition is just so strong. When hubby and I were talking about the two doctors last night, he said, "well what does your gut say? That's the one we will go with. I am not arguing with what you feel anymore." i told him right now I don't know but I do I will let him know.

The CM was not pee-existing but it was crowded. He is not sure but he does know it changed so the feeling was that the trauma is what changed it and either triggered the symptoms or caused them. He looked at the MRI from 2013 and agreed it was crowded. We were told not to worry that she would outgrow it. At 10, almost 11 yo at that time this doctor is saying that her skull was done growing so it would have stayed that way. In theory. He felt that based on her MRI from 11/15 that she now had Chiari 1. He seemed to feel that there was change even on the ones from 2/15 to 11/15 with 11/15 being the worst. He did say position can sometimes make a difference as well, if your on a pillow or such during the scan. That is why we are doing the upright MRI because the brain would be in a more typical position and she definitely feels worse when she is it up and moving about.

I am sad to report that we finally got a diagnosis today. My now 14 yo was diagnosed with Chiari 1 malformation. We were also told that the concussion/TBI she suffered 14 months ago was a 2nd degree concussion. This doctor spent over an hour with us and really studied all her films from the past three years. He does feel that they have changed. He ordered a sleep study and recommended decompression surgery. :sad: I did okay when he told me but when i got the email notification that her medical chart had been updated from the appointment and I saw it in writing, I think a piece of my heart broke. :( We will push forward with the two MRI's that the other doctor ordered and I also got an appointment scheduled with a neuro ophthalmologist to check for pressure and her optic nerve and then we will have the sleep study and then make a decision. I am pretty confident we will move forward with the surgery. I have heard from enough doctors at this point that they don't believe it's concussion symptoms at this point. This doctor feels that there might be a combination though and that its the combination of both that is making life so hard for her right now. He was hopeful that surgery could help. Everyone has been so supportive on this journey we have been on - so I just wanted to take a moment to say thank you. The road is far from over but it has a bit more direction now so maybe at least we know where we are going.

I just wanted to come back and try and explain why I am pushing for more answers. In 2013 when she had her first MRI done we were told it was "normal" but that she had crowding at the level of the foramen magnum (the hole in the base of the skull through which the spinal cord passes). We were told it was nothing to worry about and she would outgrow it. She had vision therapy for her double vision and we moved on never thinking about it again based on what the neurologist told us. Fast forward to last October when she had her third brain MRI (and 2 or 3 concussions since the first MRI) we were told she had cerebellar tonsillar ectopia. (Currently, the most commonly used criteria for diagnosis of Chiari I malformation is cerebellar tonsillar ectopia of at least 5 mm below the level of the foramen magnum.) So the MRI has changed. There is so much conflicting information with doctors about CTE and Chiari. There are many physical restrictions for a person with Chiari. Typically it is a NS who would diagnose and "treat" the symptoms of Chiari. One of the most debilitating symptoms is a headache but more commonly is a headache that starts in the back of the neck. Primarily my dds are in the front however she has a lot of other symptoms that fit as well and that combined with the PT evaluation that said the problem was with her neck and her also having pain in her back makes me push to be certain. I hope it's not Chiari and she will never have to have surgery but I need to know without a doubt. So far I am not very trusting of what they say. It seems like they are all in agreement that it is crowded and that she has CTE but there are many more questions that need to be answered. I am hoping the upright MRI will help as the brain will be in a more normal position to see if the tonsils are herniating into the foramen magnum and if so, how far? That is where the diagnosis of Chiari comes in. Since there also seems to be some agreement that she should be recovering from the concussion at this point and not getting worse which she seems to be the case. One of the most frustrating points in the appointment was when the NP said that the cerebellar tonsils were responsible for things like organization and balance. I told her I had plenty of reports that showed those were her areas of weakness but she still discounted it. I want someone I can have a logical conversation with about her symptoms, her history and have it make sense. I'm not there yet. "Head trauma increases risk of cerebellar tonsillar ectopia" there are many things like this that lead me to believe that the concussion played a role in this. The pediatric NS said riding horses was okay (even though we have two more MRI's to do) the adult NS that did the eye test said absolutely not. Of course, we are not letting her but both doctors were at Stanford and both NS departments but different opinions.

Thank you for asking. The appointment was okay. It was a long drive and a very long day. The appointment itself was over 3 hours long but most of that time was with the Nurse Practitioner not the doctor I went to see. I feel like she decided before even coming in what the problem was and it was more of a disagreement then a consultation. There were some good things to come out of it but they went as far as to tell me dd that her MRI looked beautiful and that she was fine (even though they are running more tests). I really felt like they jumped on the depression bandwagon that other doctors have done. It's just so frustrating. She will have a full spine MRI and I asked for an upright MRI. He agreed although said he didn't know where one was. I had to do the research and found out there are only two in Northern California. She will also be referred to their pain clinic for a comprehensive workup with a team of people including a pain doctor, a PT, and OT and who knows who else. They do offer things like neuro feedback, OT and PT and more which are things she could benefit from so I am willing to go see what they say. And, we'll see what the additional MRI's show, if any thing. No follow up appointment unless something in seen in the MRI.Unfortunetely that appointment isn't until the end of April. And the upright MRI, another 2+ hour drive but it'll be worth it for answers. We do have a second opinion with a neurosurgeon in our local area that we will see next week. It will be good to compare what they say since I don't feel like he really gave us much attention. After our appointment he sent us over to the adult Neurosurgery building to have an eye tracking test on her. They said if she failed it, it would give them more information that perhaps there was still some post concussive things going on. The test was suppose to take 5 minutes. We were there for 45 minutes because the test wouldn't even register the results. This is a picture of the kind of test they did. The one of the left is a normal result. The one on the right is a child is similar to what they would see from a child after a brain injury. My dd's was worse then the one on the right. Her left eye to the far left was completely out of whack. They recommended using a stationary exercise bike for 20 minutes a day to retrain the brain to be predictable. They said she has to get her heart rate up enough for it to make a difference so walking wasn't effective. They also mentioned a treadmill but they didn't think that would be as safe. So the motion of just moving your legs in a predictable manner over and over is suppose to help her brain and her tracking issues. We'll see. We had one donated to us today and so far she likes it. It will be good in other ways as well, just building up her strength. see if this works EYE

I am sure he will be very thorough. He is a specialist in what we believe she has. There are not many, I am happy there is one in our state. I have spoken to many parents that have children under his care. I listed to a speech he gave and one of the things he said during the speech is, "You have to listen to the Mom's, they know. They know when something is not right." That really hit home for me. I can't tell you how many doctors have told her she is "sensitive", if she "really" had headaches then the meds they prescribe would work and that it is psychosomatic. It's been a very long, hard year to get to this point which is kind of sad. It shouldn't be that hard to get them to listen, to take things seriously. I have a binder full of her records. I have them back to 2012 from our normal doctors, ER visits, scans (MRI and CT) lab work, and notes from the TBI clinic. I also have all her neuropysch testing results too. This doctor also sees a connection between some cognitive issues (like memory) and the medical issue. But, not many doctors even recognize the signs or the severity of symptoms. He is also well versed in concussions so hopefully he can sort that out since her concussion history complicates things.

Thank you. She does love ground work and has taught him a few tricks. He hugs, kisses and "smiles" on command. She taught him that. I will try to look at things differently. I already am. Thank you.

I hear you. Sometimes when I wonder if it's worth it I just need to look at pictures. There are many more that reflect that bond. When he sees her, he runs to her and gets all excited. I guess his excitement is part of what scares me sometimes but their bond is truly special. When he was offered to us, I wasn't sure. She had been hurt before by horses that I felt I had no control over so having one and putting him in training seemed appealing to me. When we went to visit him and she was walking him from his paddock to the round pen, he literally put his head on her shoulder as they walked. That sealed it for my husband. ;) As scary as this past year has been I do believe that he has saved her over and over again. Perhaps his purpose was never for riding, maybe it's always been deeper and more meaningful then that. You given me lots to think about, thanks.

Just wanted to echo back that I don't plan on making any permanent decision about the horse anytime in the near future. The entire time we have had him she has barely ridden him since she hasn't felt good but the relationship she has with him has helped so I understand and value that time. But, we also always had hope that at some point she could ride him so it's just hard to think about that because I think he needs to be ridden but there are ways to work that out without it being her and as time goes on and we learn more we can look at all our options. Selling is the last option. I just fear the words being said to her and that she has the strength to fight this and see the value in doing other things long term. Also, I don't think he is going to recommend surgery immediately but I also feel that is coming. If her CSF flow is blocked and causing some of the problems then we have to deal with that. We will know more Tuesday. I am hoping he does more MRI's including a full spine, a flow study and I would even like a few other tests. I feel a bit stronger this morning. She has a Valentine's Dance to attend tonight and I hope she can go and just let go of her worries and have fun with her friends. I also hope she feels well enough to make it the whole night. Thanks for the prayers. Keep 'em coming. :grouphug: Oh, and a dog in the future is a strong possibility and something I would really consider. I actually have looked into service dogs but at this point I don't know that she has something that would qualify her. But, a companion dog would be okay too. Okay so writing this post really helped me. The second picture depicts there relationship perfectly. When she doesn't feel good, which is most days she will just prop a chair in front of his stall and love on him. At least she gets out of bed and gets dressed and gets outside for a bit. I was just focused on the riding part and the financial part but like I said so much of their bond hasn't been about riding at all, and I do know that he is what will get her to keep fighting. So, thanks for letting me work this out all. I feel more determined to figure something out and feel more hopeful. Maybe he can be moved out to a pasture or something that is cheaper and someone can help bring him in for her.

Yes of course. I wouldn't make the decision right then but of course the Doctor might come out and say that she can't or shouldn't. And, I guess it's more the potential of hearing it then actually making a decision to sell the horse. I just feel like I am going to be relieved by what I hear, in the sense that it's confirmation that it's not the TBI at this point and I know what it is but it's combined with the thought that she could very well hear she needs brain surgery and her riding days are over. It's very mixed emotions for me right now. We were driving in the car the other day and I told her that when we go to Stanford next week I was going to take her by my grandparents old house (I grew up in that area) and mentioned her Dad. She didn't know Dad was coming to the appointment and that really scared her. That made it much more serious to her. But, of course it's a long drive and it is a serious appointment and we both need to hear the information. I guess I just hadn't mentioned it to her yet. She started to ask a lot of questions about what I think it is (we had talked a little about it before but I haven't made it a big deal since I don't have an official diagnosis) and what it means. She has asked to go out the barn a lot this week which has made me more nervous so I think she is starting to understand some of the complications that might arise but I don't think never riding again is even on her radar at this point. I ended up going out that evening and she was home with her Dad. She called me very upset telling me that she found the FB group I was in and that people die from this and I never told her she could die. I explained that most people die form other complications and that most people have multiple problems (like sleep apnea) and tried to reassure her as best I could.

Yes it is. She is also the one that had the sudden onset of double vision, intense headaches and pressure around her eyes back in 2013 and we never knew what brought those on. It seems that we might get answers to that as well. It's just that the trauma from the TBI seems to have made things shift inside and her current doctors are in agreement that her symptoms go beyond post concussive syndrome at this point. Things are slowing starting to make more sense. It will be nice to deal with one potential doctor that actually can offer some hope and help.

And it can't come fast enough and it's coming too fast at the same time. This has been such a long road for my dd and I am hopeful that we get our answers next week but at the same time it is both reassuring and frightening. We have been to so many appointments in the past three years and more so in the last 14 months since her last TBI and I feel like it's all coming to head now but that scares the cr@p out of me because I am pretty sure I know at least part of what is coming. In some ways it will allow us to move forward and help her and that's a good thing but if it is what I think it is - the road is going to be long and hard before we get to the place of healing. I am terribly frightened that they will tell her that she can never ride horses again. And while this may long term be the right thing for her and something I could live with, I wonder how she will be able to live with it. She has her own horse. We wouldn't be able to justify keeping him if she can't ride. She is already so fragile and the horse and horses is what gets her through most of the time. How does a kid fight a life threatening situation and possible brain surgery when the most important thing in her life she could loose. Ugh...it's so hard. I can take it away to keep the physical part of her safe - but what about the emotional? What will she get out of bed for? I know everyday I struggle with my health and if it weren't for my kids I don't know that I would fight as hard. I'm sure down the road she would find more hobbies and find other things she could love but the thought of her loosing this piece of her just breaks my heart. And, potentially all the medical stuff that might be coming with the diagnosis. I know people get through all kinds of bad things but I am just not sure she has the reserve or the drive to do it and that scares me. Her horse is her heart. Her health is mine. I'm anxious. I'm overwhelmed. I'm sad. I'm nervous. I just plain scared of what is coming. And at the same time I want the answers so bad. I want to move on - I just don't want to move through this. We are driving about 3 hours to go see this specialist. I have a whole binder full of her records. Scans have already been sent. I am fully prepared for the physical part of this, even if surgery is the next step. I choose this doctor. I feel good about that. Most of the time you get sent to someone and you don't know. I feel good about where I am taking her and I "think" I can wrap my head around surgery if that is what is needed based on the info I have about this doctor. I am tired of seeing her not feel good and not living the life a 13 year old deserves to have. But on the days she does "live" it's because of the horse. How can something so right for her end up being so wrong? Just feeling emotional and needed to get these thoughts off my chest. Thanks for listening.

We are going to H&R Block to have our taxes done, lol. Hopefully it wont be busy. :w00t:

I am learning a lot about Chiari Malformation and in all the groups that I have joined, they encourage testing for EDS. I have heard also that a geneticist is where you would go to get a diagnosis. We are in the same boat, although not with EDS and it is so hard when you can't get the help you need and the doctor's don't listen. Keep pushing. I have been pushing since October (and really long before that) that something was not right. We have been told so many things and none of them are helpful. One doctor told my dd she was just sensitive and that if she really had headaches then the meds they have prescribed would help her. I finally got a second brain MRI which helped but it still look months to get her to the right doctor. We finally have an appointment on the 16th to see a neurosurgeon at Stanford (a few hours away from us) that specializes in Chiari. I was told no several times that she didn't need to see a neurosurgeon. I finally found an expert that I could self refer to and I sent all her images and a letter describing her symptoms and what she has gone through. They were able to schedule her within a few weeks of receiving all her info. I will be requesting testing for EDS, POTS and a sleep study. I hope that you are able to get her into the doctor that can help her. It is very frustrating road to walk. :grouphug:

I can't open this link. Can you PM it to me? Thanks!

Yes, I believe this is what they are talking about. I have heard that over time your body makes a pseudo disc, I think you are saying the same thing. What happens to the other disc that is out of place?

Thank you for all the responses. They were very helpful. Unfortunately because she has a history of ulcers she can't take too much ibuprofen.

Back in October my 15 yo went to a Halloween party where her role in the haunted house was a "screamer.' Scream she did, to the point of messing up her jaw. Initially she started complaining of pain that weekend after the party. I thought that she had just overdid it. Then I started to think maybe it was her teeth and so we went to the dentist. The dentist said it was her jaw and that she dislocated it. Went to her primary who said the same thing. She had x-rays and they said it wasn't dislocated. We were told to rest it. She was taken off almost all her activities and told to rest her jaw. Nothing seemed to help. Her jaw was also inflamed. After a while they started saying that "maybe" it was TMJ and wanted her to see a TMJ specialist. Our insurance would not cover this and they sent us to an oral surgeon. We waited almost a month to get in. She had that appointment this week and again we were told her jaw was not dislocated but he thinks she has a disc dislocation at the TMJ joint. She had a CT scan done. He wants an MRI done but said there would be no follow up since she didn't require surgery. He suggested maybe seeing a TMJ specialist that could provide a splint for her to wear at night "in case" she was grinding her teeth. This seemed really irrelevant to me since it clearly started with an injury to that area...three months ago! I sent a note to her primary asking for the MRI. He said there was no such thing as a disc dislocation as the disc is the neck and the problem isn't in her neck. That is contrary to what I have read online. Actually I watched videos and it sounds exactly like what it is. She even is complaining of ear problems now on that side. I called the TMJ specialist again to just make an appointment while I try to figure out the insurance part of it but they are booking for April at this time. That's three more months out. I am beyond frustrated. Who treats a disc dislocation if she has it? She is missing her choir and her improv and she hurts daily. Nobody seems to treat the jaw. Help!

I understand all this. I am upset that the did not reveal this part of the report to me. I just found it and it's from 3 years ago. I am very upset. It should matter that they flow was restricted and what comes along with that, like the swelling and pressure on the nerves. They are real issues and they ignored them.

I know right. We never went back to him and that was three years ago. He did nothing for her but he did ignore the low CSF which really pisses me off. This is my kid's brain we are talking about. This is her life. Who knows what different choices we would have made three years ago if we had known this information. Perhaps she wouldn't have been riding horses if we had known. Unreal. I have been told that a radiologist is not required to report it as Chiari unless the herniation is 5mm or more. Doesn't matter that the flow was restricted. Something has to change if that is how people are being treated. This brain disease/disorder what every you want to call it needs more attention and more research.