displace Posted October 5, 2016 Share Posted October 5, 2016 Praying for your DD and the surgery. 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted October 5, 2016 Share Posted October 5, 2016 Praying for an uneventful and successful surgery. :grouphug: The therapy dog idea sounds wonderful. Best wishes to you all. 1 Quote Link to comment Share on other sites More sharing options...
Little Nyssa Posted October 5, 2016 Share Posted October 5, 2016 ((Hugs)) 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 5, 2016 Share Posted October 5, 2016 (edited) And honestly, it might be worth starting the process for a dog now. It is a long process, I believe, and better to start now, then if she has a total regression of symptoms cancel the application than to wait months, only to wait 2 more years to actually get a dog. Edited October 5, 2016 by ktgrok 3 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted October 5, 2016 Author Share Posted October 5, 2016 And honestly, it might be worth starting the process for a dog now. It is a long process, I believe, and better to start now, then if she has a total regression of symptoms cancel the application than to wait months, only to wait 2 more years to actually get a dog. I actually looked at the application last night. It took me while to figure out everything she has been diagnosed with, not sure if I should list everything or just the major one's. Also, really need to do some research on what the dog would be for, that is one of the questions and it's fairly specific about what it can't be used for...doing some reading on this though... Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted November 19, 2016 Author Share Posted November 19, 2016 (edited) Anyone want another update? The surgery never happened, October was a very long month! I was really praying for things all month and literally a weeks prior I recieved an emial from her NS that the doctor that did her epidurla blood patch in August found out that surgery had been scheduled and he wanted our primission to do another epidural patch but with a fibrin glue this time. He felt that she had all the symtpoms of a spinal fluid leak even though she did not really respond to the first patch. I told them that I would be open to it but I wouldn't postpone surgery. About two weeks before surgery they did the patch. She felt a difference in her headaches within a few hours. Long story short, we went home and wihtin a few days ended up back in the ER with what we thought was rebound high (brain) pressure. They admitted her and she spent four days there. They put her a trial of a medicine called diamox which stops the body from producing CSF. The thought it if the leak was fixed, then you can go into rebound high pressure becuse you know have too much CSF. She was released one week before the surgery. Had a few good days and then tanked again. Stopped the meds and felt better. Went to her preop, she said she felt pretty good and the NS and the other doctor wanted her to wait since this was the first time we had seen any kind of change in symptoms. So, we went home. The last four weeks has been very up and down and not really clear about what was happening so we scheduled another epidural path for mid-December. Sometime last week she started feeling every better with her symptoms being less orthastatic. So, we will see how the next few weeks go and surgery is still on the table but more then likely for January. They have to be sure the spinal fluid leak is completely resolved. So not only does the kid have the TBI and post concussive and then the Chiari but now the spinal fluid leak as well and they confirmed that although they are not sure she meets the diagnosis criteria for PTSD, she does have many symptoms of it. We just did an intensive week of pain psychology with biofeedback and that went really well so slowly they are figuring things out. I am so confident in this team of doctors at Stanford. I finally feel like someone gets it and they are so cautious about doing the wrong thing and really taking their time to help figure this out. She is one complex kid but they got this. Edited November 19, 2016 by fourcatmom 22 Quote Link to comment Share on other sites More sharing options...
Code Lyoko Posted November 19, 2016 Share Posted November 19, 2016 :grouphug: :grouphug: :grouphug: Glad that they are working hard to find all the pieces to the puzzle. 1 Quote Link to comment Share on other sites More sharing options...
Barb_ Posted November 19, 2016 Share Posted November 19, 2016 Thanks for keeping us posted. I've thought about you all. 1 Quote Link to comment Share on other sites More sharing options...
PollyOR Posted November 19, 2016 Share Posted November 19, 2016 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
LEOW3301 Posted November 20, 2016 Share Posted November 20, 2016 I am praying for you and your family! I don't know if it has anything to do with her spinal fluid leaks, but I lost a lot of spinal fluid when I had several epidural mishaps giving birth to my daughter and I couldn't get out of bed for several months. I suffered from a "spinal headache" from the loss of spinal fluid. It's the worst headache in the world and is in front of your head. You can't stand, or even sit without severe pain that makes you lay down immediately. Even light was a major factor that bothered it. I wonder if she is suffering from spinal headaches, too, if she lost spinal fluid? I just wanted to throw that in there, since the neurologist told me it was from spinal fluid loss. I am praying for your daughter, as well as for you. I pray her doctor is able to heal her quickly! Please tell her she has many people praying for her! 1 Quote Link to comment Share on other sites More sharing options...
displace Posted November 20, 2016 Share Posted November 20, 2016 Wow! I'll pray for you all and I'm glad they found something to fix (which may or may not help but probably should be fixed). 1 Quote Link to comment Share on other sites More sharing options...
Liz CA Posted November 20, 2016 Share Posted November 20, 2016 (edited) :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. I was going to agree with this until I realized the post was from February! Wanted to throw out there that EMDR has helped a lot of people with PTSD. It is a "no touch" procedure and fairly easy done by someone trained in the technique. If you are near Stanford, you should be able to find someone. Edited November 20, 2016 by Liz CA 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted November 20, 2016 Share Posted November 20, 2016 (hugs) Thanks for updating. 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted November 20, 2016 Author Share Posted November 20, 2016 I am praying for you and your family! I don't know if it has anything to do with her spinal fluid leaks, but I lost a lot of spinal fluid when I had several epidural mishaps giving birth to my daughter and I couldn't get out of bed for several months. I suffered from a "spinal headache" from the loss of spinal fluid. It's the worst headache in the world and is in front of your head. You can't stand, or even sit without severe pain that makes you lay down immediately. Even light was a major factor that bothered it. I wonder if she is suffering from spinal headaches, too, if she lost spinal fluid? I just wanted to throw that in there, since the neurologist told me it was from spinal fluid loss. I am praying for your daughter, as well as for you. I pray her doctor is able to heal her quickly! Please tell her she has many people praying for her! Yes, a spinal fluid leak causes a spinal headache but it does change over time, the longer you have been leaking. They think she has had a slow leak for a long time from a bone spur (osteophyte) in her thoracic spine that I am assuming formed after the accident where she had the TBI. She has been unable to really function since the end of June so this is the first time in awhile that we have seen positive results from any procedure, therapy and/or medication. There is a very good video on spinal headaches on YouTube called the Mystery Headache from her doctor at Stanford if you ever want to watch it. I am glad you are feeling better. She has had two epidural patches to try and fix the leak (one blood and one glue) and she is scheduled for another patch in Mid-December. Hopefully she will continue to improve and she won't need it and then we can deal with the Chiari. The interesting thing is that a spinal fluid leak can also cause acquired Chiari but her herniation is now at 6-7 mm so I presume she will still have to have the decompression surgery once the leak is resolved. Oh, and the CSF leak specialist is also pretty sure she does have Ehlers-Danlos Syndrome. I was going to agree with this until I realized the post was from February! Wanted to throw out there that EMDR has helped a lot of people with PTSD. It is a "no touch" procedure and fairly easy done by someone trained in the technique. If you are near Stanford, you should be able to find someone. Yes, long post. Sorry..this has been ongoing for a very long time! Thank you for the info. I don't know what EDMR is but I will look into in. So far pain psychology and biofeedback and really helped her. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted November 20, 2016 Share Posted November 20, 2016 Yes, long post. Sorry..this has been ongoing for a very long time! Thank you for the info. I don't know what EDMR is but I will look into in. So far pain psychology and biofeedback and really helped her. I have a friend that was suicidal from PTSD and swears EMDR saved her life, literally. 1 Quote Link to comment Share on other sites More sharing options...
Liz CA Posted November 20, 2016 Share Posted November 20, 2016 Google Francine Shapiro who pioneered the EMDR technique. https://www.emdr.com/francine-shapiro-ph-d/ She came up with for trauma care in the humanitarian sector but I have also seen spectacular results for other type of trauma. EMDR stands for Eye Movemement Desensitization and Reprocessing. 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted January 30, 2017 Author Share Posted January 30, 2017 (edited) Just in case you wanted another update...my dd ended up having 8 blood patches total, one in the lumbar region, 5 in her thoracic and 2 in her cervical spine. She ended up having 5 separate procedures, hospitalized after each time. Her relief never lasted more then 48 hours. It's been a very long few months. They still do not know if she has or had a spinal fluid leak. At this point we are moving forward with decompression surgery for the Chiari. It has been re-scheduled for Feb. 20th. We are back at Stanford tonight for neuropsych testing in the morning and we also have a new pain management doctor on her team. They are setting up surgery with everyone involved, the surgeon has been waiting until he was not going to be out of town for a period of time as he wants to be there for her, the pain management team, child life and her pain psychology doctor are all involved. Let's hope it happens this time. I think she is less scared of the anesthesia now that she's had it 5 times. She is becoming quite the advocate for herself, knowing exactly what she needs and she will ask for it. They also have confirmed PTSS, still not sure she meets the medical criteria for PTSD but she does have symptoms of it if not the full disorder. She is still a long way away from being able to be around horses, that seems to be getting harder the longer she is away from them. ); She has pretty much been in bed since July with only limited outings and time up. I am so ready to move forward. Edited January 30, 2017 by fourcatmom Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 30, 2017 Share Posted January 30, 2017 **hugs** Thanks for updating! 1 Quote Link to comment Share on other sites More sharing options...
Stacia Posted January 30, 2017 Share Posted January 30, 2017 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted January 30, 2017 Author Share Posted January 30, 2017 Oh, goodness, this has been such a long road. I'm sorry the patches weren't effective. I'm hopeful the surgery will be the thing that finally allows your dd to turn the corner and start getting back to her regular life. Could she be safe around mini horses? Obviously she couldn't ride them, but my horse kids find it therapeutic just being around horses, and have a couple minis they help care for. I tried to schedule a visit to a barn that does theraputic riding while we are in town for the medical appointments. Not to ride but just to visit, lots of horses, big and small and barn critters. She completly fell apart when I told her. It was going to be a surprise but she insisted on knowing so I told her. Did not go over well. She has told the doctors she wants her life back and wants to ride so I really thought she would be okay with visitng. She just said she is not ready. I feel like we have a long way to go still. Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted January 30, 2017 Share Posted January 30, 2017 :grouphug: :grouphug: :grouphug: Thanks for the update. I am so sad that the patches didn't work. Hopefully the new surgery will. Do you have any outside local IRL support? This has got to be taking a toll on you. 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted January 30, 2017 Share Posted January 30, 2017 (hugs) 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted January 30, 2017 Author Share Posted January 30, 2017 :grouphug: :grouphug: :grouphug: Thanks for the update. I am so sad that the patches didn't work. Hopefully the new surgery will. Do you have any outside local IRL support? This has got to be taking a toll on you. The longer this goes on the less support I seem to get. I honeslty feel that the doctors and team have been the biggest support as well as some other moms I have met through FB groups of kids with medical issues. I feel like my life is changing too over time. I guess that's normal. I just think of all you often and wanted to say that we were finally moving forward with surgery again. Quote Link to comment Share on other sites More sharing options...
displace Posted January 30, 2017 Share Posted January 30, 2017 (Hugs) I'm sorry she's had to have so many surgeries. I'm praying the Chiari surgery will be a game changer to bring normalcy back. It's good she's self advocating. 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted January 30, 2017 Share Posted January 30, 2017 More :grouphug: . And prayers for something to work. Feel free to keep posting here. Sometimes just plain writing and sharing can help a little bit mentally. I'm not quite sure why it works, but it seems to. 2 Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted January 30, 2017 Share Posted January 30, 2017 Yes, I think of your DD from time to time and wonder what is happening. It has been such a long hard struggle so far. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
38carrots Posted January 30, 2017 Share Posted January 30, 2017 Thank you for the update. I'm sorry it is not a better one, but at least it seems that solutions haven't been exhausted yet. I think about your DD often (I have a horsey DD myself)...Wishing your DD complete healing. I'm sorry that this has been such a long and painful experience. 1 Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted January 30, 2017 Share Posted January 30, 2017 The longer this goes on the less support I seem to get. I honeslty feel that the doctors and team have been the biggest support as well as some other moms I have met through FB groups of kids with medical issues. I feel like my life is changing too over time. I guess that's normal. I just think of all you often and wanted to say that we were finally moving forward with surgery again. Post any time you need. You might even start an on-line private support group here on WTM for parents of kids with TBIs or just serious health issues in general, where you could all talk and share and support each other more privately. Its actually an easy process. I could walk you through it if you like. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 30, 2017 Share Posted January 30, 2017 (edited) This has been a very long road and I remember your very first posts as you tried to figure out what could be going on. So much has happened since then. I'm not on the boards very much these days so I'm glad I caught your update. I'll be keeping you and your dd in my thoughts and prayers for a successful surgery. Please continue to update and keep us informed about anything you need. Edited January 30, 2017 by Tiramisu 1 Quote Link to comment Share on other sites More sharing options...
zoobie Posted January 30, 2017 Share Posted January 30, 2017 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
FriedClams Posted January 30, 2017 Share Posted January 30, 2017 Please keep us updated on the surgery. It's been a long, long road and we are here to support you guys. hugs. Praying for a successful surgery! 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted January 30, 2017 Share Posted January 30, 2017 I think I remember you talking about getting a dog for her, to have that animal bond since she can't/isnt' ready to be around horses. Any more thought in that area? Maybe a rescue greyhound or other calm, soft, sweet dog? I'm sure missing out on that bond with animals is hard for her. Or, does the hospital know of any therapy mini horses that come visit in the hospital? 3 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted January 30, 2017 Share Posted January 30, 2017 Keeping you in my prayers and thoughts. It is really discouraging that it is taking so long. 1 Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted January 30, 2017 Share Posted January 30, 2017 Just now seeing this thread. What a long, long road for your family. I'm so sorry this is happening and has been happening for so long. My heart goes out to you and her. 1 Quote Link to comment Share on other sites More sharing options...
mominco Posted January 30, 2017 Share Posted January 30, 2017 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted January 31, 2017 Author Share Posted January 31, 2017 (edited) Thank you everyone. I like the suggestion of some kind of support on here. We are out of town at the moment but let me get back to you about that. I have found that the FB groups have been instumental in me keeping my sanity and staying hopeful. She actually did neurospsych testing today and they confirmed PTSD. The NS wanted the testing done before surgery so it's one more boxed checked. Her double vision is worse now, her reflexes have started going haywire, her legs are now a brisk 3+ which they never used to be...it's just time. No dog yet. We live in an apartment with five cats so taking one another animal at the moment when we have been out of town so much for the medical appointments just hasn't been realistic. I am working on what is available to her while she is in the hospital. Edited January 31, 2017 by fourcatmom 2 Quote Link to comment Share on other sites More sharing options...
Liz CA Posted January 31, 2017 Share Posted January 31, 2017 Thank you for the update. I hope the surgery goes well. I think it's too early to know anything about her future ability to ride again. I used to work at a therapeutic riding facility and saw several people with TBI riding again as they worked on regaining balance. Quote Link to comment Share on other sites More sharing options...
Mom25girls Posted January 31, 2017 Share Posted January 31, 2017 Thanks for updating. I'm mostly a quiet reader but I think about you and your daughter often. Sending hugs and prayers. Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 2, 2017 Share Posted February 2, 2017 :grouphug: Thanks for the update. Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted February 5, 2017 Author Share Posted February 5, 2017 (edited) I created a social group for other parents of chronically ill kids...come check it out! Parenting Children w/Chronic Illness Still working on setting it up though so bear with me. Edited February 5, 2017 by fourcatmom 1 Quote Link to comment Share on other sites More sharing options...
BooksandBoys Posted February 6, 2017 Share Posted February 6, 2017 (edited) Yes, a spinal fluid leak causes a spinal headache but it does change over time, the longer you have been leaking. They think she has had a slow leak for a long time from a bone spur (osteophyte) in her thoracic spine that I am assuming formed after the accident where she had the TBI. She has been unable to really function since the end of June so this is the first time in awhile that we have seen positive results from any procedure, therapy and/or medication. There is a very good video on spinal headaches on YouTube called the Mystery Headache from her doctor at Stanford if you ever want to watch it. I am glad you are feeling better. She has had two epidural patches to try and fix the leak (one blood and one glue) and she is scheduled for another patch in Mid-December. Hopefully she will continue to improve and she won't need it and then we can deal with the Chiari. The interesting thing is that a spinal fluid leak can also cause acquired Chiari but her herniation is now at 6-7 mm so I presume she will still have to have the decompression surgery once the leak is resolved. Oh, and the CSF leak specialist is also pretty sure she does have Ehlers-Danlos Syndrome. Yes, long post. Sorry..this has been ongoing for a very long time! Thank you for the info. I don't know what EDMR is but I will look into in. So far pain psychology and biofeedback and really helped her. Hugs. Another vote to research EMDR. EMDR gave me my life back. It's an amazing therapy for PTSD. Edited February 6, 2017 by BooksandBoys Quote Link to comment Share on other sites More sharing options...
caedmyn Posted February 6, 2017 Share Posted February 6, 2017 I don't know if this would be helpful, but I have a friend with Chiari and EDS and her 4 children also have both. She and 2 of the kids have had the brain surgery in the last 2 years. I know she be happy to talk to you...if you want her contact info, PM me. Quote Link to comment Share on other sites More sharing options...
Guest Posted February 6, 2017 Share Posted February 6, 2017 I don't have anything useful to add; just wishing health and healing on your dd. â¤ï¸ Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted March 2, 2017 Author Share Posted March 2, 2017 Well true to the way this journey has been for us, surgery did not happen on the 20th of Feb. :sad: She got sick about a week from the date and since I didn't want to see surgery cancelled I took her to her primary just to see if there was anything they could do. He put her on antiobiotics and I honestly thought she was going to be fine. The anesthesthia team said no and cancelled it the Friday before surgery, we were scheduled to leave on Sunday. So frustrating. They said that the meds actually complicated things and she would need to have completed them and then wait another 10 days to be cleared. We are 5 days out on that now. Surgery has been re-re-scheduled for March 15th. Praying and hoping that this is the last time and nothing comes up for us. We are SO tired of waiting. :scared: :scared: She is on so much medication now and I just see things getting worse and it's just so hard to wait this out. I know it was the safest decision for her but this needs to happen soon. 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted March 2, 2017 Share Posted March 2, 2017 (hugs) Quote Link to comment Share on other sites More sharing options...
displace Posted March 2, 2017 Share Posted March 2, 2017 That must be so frustrating. :(. Hang in there. It's almost here. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 2, 2017 Share Posted March 2, 2017 I hope it does happen March 15. Quote Link to comment Share on other sites More sharing options...
Guest Posted March 2, 2017 Share Posted March 2, 2017 Oh how annoying, I'm sorry! Fingers crossed the next day goes off without a hitch. Quote Link to comment Share on other sites More sharing options...
Mama Geek Posted March 2, 2017 Share Posted March 2, 2017 :grouphug: and prayers for your daughter, for you and for your whole family. Quote Link to comment Share on other sites More sharing options...
creekland Posted March 2, 2017 Share Posted March 2, 2017 :grouphug: May the next two weeks go by quickly and all go as planned on the 15th - then success and recovery afterward. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
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