fourcatmom Posted February 13, 2016 Share Posted February 13, 2016 (edited) 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. Edited March 30, 2017 by fourcatmom 2 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted February 13, 2016 Share Posted February 13, 2016 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Barb_ Posted February 13, 2016 Share Posted February 13, 2016 Is this the daughter with the concussion and PTSD? It may be better to know what you're fighting, even if the news is bad. I'm sorry for your family. 3 Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted February 13, 2016 Share Posted February 13, 2016 If possible, for the next few months, think of the horse as therapy. Even if she cannot ride, just spending time being around it could really help. Sending prayers to you and your daughter. 16 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 13, 2016 Author Share Posted February 13, 2016 Is this the daughter with the concussion and PTSD? It may be better to know what you're fighting, even if the news is bad. I'm sorry for your family. 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. Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 13, 2016 Author Share Posted February 13, 2016 If possible, for the next few months, think of the horse as therapy. Even if she cannot ride, just spending time being around it could really help. Sending prayers to you and your daughter. 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. Absolutely what I was thinking. I wouldn't even consider doing anything with her horse based on the outcome of her appointment at this point. I know there are practicalities like exercising the horse to think of, but that can be handled. I know this has been a really long road, and I hope this appointment gets your dd on the road to recovery. 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. Quote Link to comment Share on other sites More sharing options...
happi duck Posted February 13, 2016 Share Posted February 13, 2016 (Hugs) 1 Quote Link to comment Share on other sites More sharing options...
Starr Posted February 13, 2016 Share Posted February 13, 2016 (Hugs) I'm so sorry . 1 Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted February 13, 2016 Share Posted February 13, 2016 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted February 13, 2016 Share Posted February 13, 2016 :grouphug: I'll echo others to not get rid of her horse. Change to less expensive boarding if need be, but if my dad had decided to get rid of my horses/ponies when I was a teen going through difficult times I can guarantee I wouldn't be here and/or be the person I am today. Everyone needs an escape from life when it gets overwhelming. Horses were mine. She may not be able to ride, but there are oodles of other things she can do - esp just grooming and talking. I don't ride any longer, but I get enjoyment from raising babies (ponies) now. Over time she may shift to something else too - with or without horses - but to make the decision to take away what she has, esp as a teen, I can't even imagine it. :grouphug: for the upcoming appt and I hope you can get both answers and solutions. 7 Quote Link to comment Share on other sites More sharing options...
Lanny Posted February 13, 2016 Share Posted February 13, 2016 Where we lived before, for 9 years, our next door neighbor, on one side was a Neurosurgeon. They are doctors, not Gods, but sometimes, they can perform miracles. Sometimes, the best treatment is not to have surgery. Years ago, we presented to him the medical records of a young girl who lives in a smaller city, several hours from the city of Cali. He presented her case to the Neuro Board, in the large hospital where he practices. In that case, the consensus of opinion was not to perform surgery. If this is your first appointment with a Neurosurgeon, I am astonished by that. I hope that is not the case. The horse may be excellent therapy for your DD, whether or not she can ride him again. Much good luck to your DD! 1 Quote Link to comment Share on other sites More sharing options...
zoobie Posted February 13, 2016 Share Posted February 13, 2016 :grouphug: I hope the doctor has some answers and a treatment plan for you and your DD. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted February 13, 2016 Share Posted February 13, 2016 Oh hugs, I'll be praying for you. Also, I know it isn't the same at all, but if she can't ride, can you get her her own dog, that down the road she can train for say 4-h shows or obedience if she wants, or just snuggle and have someone to be with in the way that only an animal can be. 1 Quote Link to comment Share on other sites More sharing options...
StephanieZ Posted February 13, 2016 Share Posted February 13, 2016 FWIW, I rode horses for several years as a teen. Even though I rode nearly daily, the relationship with the horse -- grooming, cleaning tack, snuggles, etc was more vital than the riding. If I were you, I'd do anything I could to help her keep the relationship with the horse for a while at least. 5 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 13, 2016 Author Share Posted February 13, 2016 (edited) 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. Edited March 29, 2016 by fourcatmom 7 Quote Link to comment Share on other sites More sharing options...
creekland Posted February 13, 2016 Share Posted February 13, 2016 Gorgeous horse and great bond. A couple of thoughts that might help finances could be a partial lease out for someone to ride/show him or see if he could be used in lessons in exchange for board. Regardless, I hope things go well in the future. Best wishes to you all! 4 Quote Link to comment Share on other sites More sharing options...
Tammyla Posted February 13, 2016 Share Posted February 13, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Lanny Posted February 13, 2016 Share Posted February 13, 2016 @fourcatmom I read your update and I looked at the photos. I would do everything possible, to keep the horse as close to your DD as is possible. When the viewers in the USA are getting commercials, we (the overseas viewers) are shown "Extras". At least one of them is about Horses used in Equine and other therapy, for Veterans with P.T.S.D. and other things (near NYC). There are magical bonds, formed, between many people and the horses. Years ago, there was one from the Phoenix area, about people (children and adults) with Disabilities going for Horse Therapy. 4 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 13, 2016 Author Share Posted February 13, 2016 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. 8 Quote Link to comment Share on other sites More sharing options...
38carrots Posted February 13, 2016 Share Posted February 13, 2016 :grouphug: :grouphug: :grouphug: I hope you find answers. They have such a beatiful bond. Horsemanship is much more than riding and they could achieve great things on the ground. Look into Equine Agility--with reasonable yearly membership she can compete and achieve recognition (eventually on the international level!) via video submissions. (http://www.thehorseagilityclub.com/) There are levels, and structure, and more importantly, goals. You can also look at trick training and liberty--there's so much on youtube to inspire and motivate. Try not to look at this as a step down and inferior to riding. Ground work and liberty are wonderful and fulfilling in their own right. And developing their groundwork and liberty will also keep them ready for riding, both physically and mentally. 3 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 13, 2016 Author Share Posted February 13, 2016 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. 7 Quote Link to comment Share on other sites More sharing options...
Lanny Posted February 13, 2016 Share Posted February 13, 2016 The horse may be her "gift from God". I hope the Neurosurgeon will study the workup her previous doctors have done. I assume you will be taking a lot of records with you to the appointment. I would allow the Neurosurgeon to take his/her time about studying the issues your DD has and that may (probably will) require another visit, a few weeks down the road, possibly after your DD has some additional tests. I wish you didn't live 3 hours from where the Neurosurgeon is, but you need to go where top notch medical care is located and that tends to be in larger cities and/or teaching hospitals affiliated with a medical school. I will include your DD in my prayers. 3 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 13, 2016 Author Share Posted February 13, 2016 (edited) The horse may be her "gift from God". I hope the Neurosurgeon will study the workup her previous doctors have done. I assume you will be taking a lot of records with you to the appointment. I would allow the Neurosurgeon to take his/her time about studying the issues your DD has and that may (probably will) require another visit, a few weeks down the road, possibly after your DD has some additional tests. I wish you didn't live 3 hours from where the Neurosurgeon is, but you need to go where top notch medical care is located and that tends to be in larger cities and/or teaching hospitals affiliated with a medical school. I will include your DD in my prayers. 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. Edited February 21, 2016 by fourcatmom 2 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 21, 2016 Author Share Posted February 21, 2016 (edited) 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 Edited February 21, 2016 by fourcatmom 2 Quote Link to comment Share on other sites More sharing options...
mamiof5 Posted February 21, 2016 Share Posted February 21, 2016 (edited) Just saw this. Praying the appointment went well. I know it's easier said than done, but live one day at a time. If she's ever told she can't ride again you'll cross that bridge when you get to it. Your dd is absolutely beautiful! How sad to know she doesn't feel well. Will pray for her and all of you. ETA: we cross posted. So sorry the appointment was not what you expected. Will pray for your dd and for the doctors to be able to find out what is happening. Edited February 21, 2016 by mamiof5 2 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted February 21, 2016 Share Posted February 21, 2016 I wonder if the vision issues could be causing the awful headaches and exhaustion. If her brain is working overtime to try to understand what she's seeing, and straining, that can certainly cause headaches and tiredness. (I have just normal bad vision, but have gone through periods where my prescription was not done properly, other stuff and it's mentally and physcially draining). Also, I'd look into crawling and some things that are cross body that might help her, things where you go across the midline? I don't know enough to say it would help but might be worth looking into. Hugs. And although I don't like that you feel they were dismissive I'm hopeful they are right, and your daughter won't need surgery, etc. 5 Quote Link to comment Share on other sites More sharing options...
creekland Posted February 21, 2016 Share Posted February 21, 2016 :grouphug: Offering more hugs with the hopes that the bike might help some while you await the other tests. :grouphug: Quote Link to comment Share on other sites More sharing options...
Ottakee Posted February 21, 2016 Share Posted February 21, 2016 Sorry you.don't have more answers. The stationary bike sounds like a good thing. I know.our therapists use it for Parkinson's and other balance coordination issues. You might also see if anyone has one of those equizers type mechanical horses. Safer as no risks of spooks etc but the special movement of a horse. Quote Link to comment Share on other sites More sharing options...
Reefgazer Posted February 21, 2016 Share Posted February 21, 2016 Good luck to your DD. I hope the news is better than you expect. Quote Link to comment Share on other sites More sharing options...
Mom25girls Posted February 21, 2016 Share Posted February 21, 2016 Sending hugs, well wishes and prayers for your daughter and...for you. Quote Link to comment Share on other sites More sharing options...
plansrme Posted February 21, 2016 Share Posted February 21, 2016 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. (working on the picture) That's really interesting. My mom instinct has always told me that swimming for hours on end has been good for my 15 yo's reading and tracking issues. She was adopted from China at 15 mos., malnourished and with gross motor delays. We had an ed psych battery done on her several years ago, and the guy said there is something going on with her verbal processing but that he didn't know what it was. ANYWAY, long story short, she is a competitive swimmer and practices for hours every day, and I've always thought that, the more she swims, the better she does in school. I figured it has something to do with alternating sides, having to work both sides of her body, that sort of thing. She is very left-handed, and I feel like it has helped her learn to use her right side as well as her left. And to get to the point of this, if you daughter can lap swim, perhaps that would be helpful to her as well. Lots of lap swimmers hold a kick board out in front with their arms and just kick, so that might be an easier way to get started than an all-out freestyle. Thanks for the update; I hope this neurosurgeon is right. It kind of makes sense to me, though I know it is frustrating not to be given something more specific. 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 21, 2016 Author Share Posted February 21, 2016 (edited) 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. Edited February 21, 2016 by fourcatmom 2 Quote Link to comment Share on other sites More sharing options...
OnMyOwn Posted February 22, 2016 Share Posted February 22, 2016 How frustrating! I hope you can get the answers you need for your dd. 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 24, 2016 Author Share Posted February 24, 2016 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. 11 Quote Link to comment Share on other sites More sharing options...
Stacia Posted February 24, 2016 Share Posted February 24, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 24, 2016 Author Share Posted February 24, 2016 I'm sorry about the diagnosis, but glad you now have a direction to take treatment. I want to praise you for your good instincts in pursuing this diagnosis. Does the dr think the CM was pre-existing and exacerbated by the concussion/tbi, or did it somehow lead to it? Would it likely have caused problems eventually whether she'd had the concussions or not? I'm hopeful for your dd that the surgery will be really helpful and she will see a big improvement in her quality of life. How is she taking it? 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. Quote Link to comment Share on other sites More sharing options...
fraidycat Posted February 24, 2016 Share Posted February 24, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
ktgrok Posted February 24, 2016 Share Posted February 24, 2016 I'm so sorry, and yet so very glad that you followed your instincts. It does seem that all her experiences fit with this, right down to it being triggered by a head trauma. From what I've read that's common. Hugs. 2 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted February 24, 2016 Share Posted February 24, 2016 I am sorry about your daughter. But at least now you are getting some answers. The unknowing is the worse. Quote Link to comment Share on other sites More sharing options...
OnMyOwn Posted February 24, 2016 Share Posted February 24, 2016 I'm glad you were able to get a diagnosis. That can be a huge victory in and of itself. I hope you find a path you feel confident in following to treat your dd and that all goes well for her and you. I really enjoyed seeing those beautiful pics of her. 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted February 24, 2016 Share Posted February 24, 2016 :grouphug: How is your daughter handling it? Definitely sending hopes/prayers your way that she'll find relief now that they know what she's dealing with. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Jaybee Posted February 24, 2016 Share Posted February 24, 2016 :grouphug: :grouphug: :grouphug: I'm sorry you are dealing with this. But I am glad that you followed your momma gut on it and got answers. 1 Quote Link to comment Share on other sites More sharing options...
sassenach Posted February 24, 2016 Share Posted February 24, 2016 :grouphug: I'm grateful that you have found the right doctor. I would be tempted to email the last dr a little update. Probably best to put your energy into the road ahead, but I have such a beef with doctors like that. (Incidentally, I have not had great experiences with Stanford or Lucille Packard doctors. Our worst hospital experience EVER was at LP.) (((HUGS))) to you. 3 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 24, 2016 Author Share Posted February 24, 2016 (edited) 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. Edited February 24, 2016 by fourcatmom 6 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 24, 2016 Share Posted February 24, 2016 My dd who had shoulder length hair lost her underneath hair when she underwent radiation of her pons, brainstem, and cerebellum. You totally couldn't see it at all unless she had her hair up in a ponytail. Depending on how far up and to the sides they shave, it may not be very visible. I mention this because, for dd, the "worst" thing was having her hair messed with. Hospital food and needles, etc. weren't an issue. 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 24, 2016 Author Share Posted February 24, 2016 (edited) My dd who had shoulder length hair lost her underneath hair when she underwent radiation of her pons, brainstem, and cerebellum. You totally couldn't see it at all unless she had her hair up in a ponytail. Depending on how far up and to the sides they shave, it may not be very visible. I mention this because, for dd, the "worst" thing was having her hair messed with. Hospital food and needles, etc. weren't an issue. 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. Edited February 24, 2016 by fourcatmom 1 Quote Link to comment Share on other sites More sharing options...
displace Posted February 24, 2016 Share Posted February 24, 2016 I'm sorry your family is going through this but I'm glad you have some answers and treatment options, as scary as they are. :( 1 Quote Link to comment Share on other sites More sharing options...
38carrots Posted February 24, 2016 Share Posted February 24, 2016 So sorry you and your DD are going through this, but I'm glad you got the diagnosis. Good for you for trusting your gut and not letting it rest. So frustrating when health professional dismiss you. Big hugs to both of you. 1 Quote Link to comment Share on other sites More sharing options...
josie9499 Posted April 23, 2016 Share Posted April 23, 2016 I'm new to this forum and found it in my desperate search for anything related to kids with double vision. How are things going? I'm sorry you have gone through all this but to have a clear diagnosis must be some relief at least. My dd is 7 and we've learned she sees double, always. At first she said seen this for years but just close up but now she sees it all the time and her reading ability has gone way down in just weeks, it has scared me to my core. We've gone down the path you are familiar with, pedi opthamologist who was perplexed but says CI. But I'm not sure, it's double always (near and far) in both eyes and single with 1 eye but then very blurry (far sighted using just 1 eye). He told us to do pencil push ups and come back in 8 weeks. We do the exercises but went straight to a neurologist who said initial exam looks good but now we have an MRI next week. Scared, but this is what we must do, so many questions and so few answers and seems like no one sees this which makes it worse. I'm glad to find a few people here that maybe experienced it to a degree. Quote Link to comment Share on other sites More sharing options...
nrg Posted April 23, 2016 Share Posted April 23, 2016 I am sorry to hear about your daughter. Have you investigated neuro-optometry? Here is a link to the website for their organization: https://nora.cc/ I am a newly certified vision therapist and have seen excellent results. 1 Quote Link to comment Share on other sites More sharing options...
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