Chiari Online Support Group

We need help!


#1

My daughter was diagnosed 4 years ago with Chiari and Syringomyelia. She had decompression surgery. She’s battled headaches every since but until just recently the headaches have become worse and chronic. The doctors have tried everything to break this cycle of headaches and nothing has worked. She has missed so much school in the past 4 months. This has debilitated our entire family. Our most recent headache specialist told us that he doesn’t know what else to do. We are completely lost. All this time they have been treating her as if these were typical migraines. She’s been on Gabapentin, Topomax, Sumatriptan, Qudexy, Ritztriptan, Advil, Tylenol, Excedrin migraine, Aleve, Torodol and several infused migraine cocktails. She had surgery to remove a neuroma which they thought was causing the headaches. She’s tried physical therapy. I’ve tried buying special pillows and a diffuser. Nothing has worked. I’m hoping that by becoming a member of this support group that someone out there might be going through the same as us and might give us some other options that they have tried. Am I crazy?? I really believe these migraines are being caused by her Chiari but the neuro surgeon keeps telling us the decompressed area looks beautiful and sees no reason why she should still be getting headaches. I can only describe her pain as horrible pressure in the back of her head. Please…if your reading this and have any information to share we would greatly appreciate it!!


#2

Continual headaches are no fun and it sounds like you folks have done a lot of things. I am doing a series of posts for things that may help those pesky and possibly Chiari-related headaches.

1.Scar management for any incision areas.
2.Motor control
3.Neurodynamic exercises for neck and upper limb
4.Neuro-orthopedic Institute graded motor imagery app for the neck.

You can check out my recent scar management post and make sure that incisional pain is not an issue.

I too have had occipital pain pre and post surgery. Just recently, I reviewed some of my past posts and noticed that I was reporting that headache pain was not a big factor. Yet over time since my surgery, head pain increased and I became more sensitive to a variety of different things. I saw a neurologist who was convinced that I had vestibular migraines and wanted to put me on a selection of medications. I was not convinced both with my symptom presentation and “triggers” and the reports from people here that migraine medication is not often a winner for those with Chiari.

For myself, my headaches were caused by Chiari yet not caused by Chiari at the same time. My neurosurgeon and MRI reports also declare that Chiari surgery was an anatomically successful surgery. Unfortunately, what doctors do not tell you is that the brain can still be affected by the long term stress of compression on delicate structures like nerves and blood vessels. More surgery does not help those complications and neurosurgeons do not have anything else to offer.

For me, my brain has changed how it processes stimuli affecting neck movements and pressures to the head. My brain responds to these normal activities that should not cause pain with head pain that does not make sense.

The four items listed above are what I have done to minimize head pain. I am not finished the programme but have been tremendously pleased with the results so far. I went from getting worse for no apparent reason to seeing consistent improvements. I am just disappointed that it takes so long. Unfortunately, it takes a lot of time to make lasting changes to brain processing.

I made sure that scar management was not an issue. Then, I got myself set up with a physical therapist trained in techniques researched by the Neuro-Orthopedic Institute - a research organization based in Australia. You may be able to contact them to see if anyone is trained (and PRACTICES it!) in your area. Graded-motor imagery has been great for making normal movements and activities non-irritating. Wonky stuff for sure but effective.

Any questions give a shout


#3

Wow!!! Gabby-jazzypants! You’ve given me a lot to look in to. Thank you. My daughter actually had scar revision surgery in January. She was having sharp shooting pains from the scar area where the surgeon took a pericranial graft to replace the part of her skull he removed. It only took almost 3 years for them to believe us that she was having pain in that area. They thought she had a neuroma in that area and that might have been causing her pressure headaches. Unfortunately it didn’t help. Her headache specialist did mention something about biofeedback? It sounds similiar to the graded motor imagery that you mentioned.

Your explanation of Chiari headaches was very helpful. These past few years as the doctors kept telling my daughter the pain was just “migraines” we both knew it wasn’t just migraines but chiari migraines. This is so frustrating for all of us as up until this past November my daughter was able to live a normal and active life. She’s been an A student and a phenomenal volleyball player with goals of going to a top volleyball college. Now we are just trying to get thru one day at a time. We have an appointment with a Chiari Specialist/neurosurgeon in New York in two weeks but my fear is that he will have nothing for us either…Thank you for bringing other options to my attention. I appreciate it!!!


#4

You are very welcome. Best of luck in trying out different options to assist your daughter.


#5

Hello!
I am sorry to hear that your little girl is having severe Micronesia surgery!
I had 2 surgeries in 1998. My migraines returned and until last year, I had 2 or more a week. Last Spring I found a book the Migraine Miracle. It is written by a neurologist who had migraines. It is about
using too many meds & changing your diet.
Cutting out sugar and certain carbs. It has worked for me. I still get migraines if I eat the wrong thing or have a sinus infection.
If you use Facebook you can go to his site.
I hope that this helps. I am a big girl and I know how bad migraines feel. I also know the frustration of not being able to stop the pain.
Your daughter is in my prayers!
Rita


#6

Hi Rita,
Thank you so much for your feedback and especially your prayers!!! I have wondered for so long if all the meds they have my daughter on were contributing to her migraines. I most certainly am going to look into this book. I’m sorry for your migraines. It is a terrible thing to go thru. Thank you again for responding.


#7

hello again
I just read the post you received from
gabby!
It made me want to add some things that I have been doing the last year.
I returned to a Spine Specialist a year ago .
After surgery was ruled out, he sent me to a PT who has experience working a Chiari. She feels that Chiari surgery is the most damaging surgery you can have performed.
Her approach is to settle down the nervous system. Walking backwards is started very gradually. It sounds strange, but I did start to feel better.
I don’t know anything about what gabby is talking about, it sounds like it is helping her.
I have other things that might be flared by what she describes. It is worth checking out.
My headaches were pressure( occipital region) at times ,now they have moved to the top of my head & affect my teeth and eyes! I am hypersensitive to just about anything. Chiari does not stop hurting for everyone who has surgery!
(My lap top has a mind of its’own. It changes words. )
I have had 2 decompression surgeries & my
headaches returned after both of them. I have migraines and pressure headaches!
I am not minimizing your daughter’s condition by suggesting a diet change. It has worked for many, it might provide some relief.
She does need a PT who understands Chiari.


#8

I usually just read posts now & don’t reply. Life has been very challenging. Your daughters situation is similar to my son. My son is 14yo & has been suffering from headaches EVERY single day for the last 2 years. He had his 2nd Chiari surgery in June 2016. He hasn’t gone to school in almost 3 years. How I wish I could turn back time & make different choices.
No one can seem to help him. He has been on multiple meds, different combos & nothing helps his symptoms. He has so many bizarre symptoms & has been diagnosed in last 2 years with EDS, POTS, autonomic dysfunction, occipital neuralgia, Hashimoto’s & now is being checked for Cushings. At one point we we’re told he had intracranial hypotension & sought treatment for that & then we were told no actually he had intracranial Hypertension. No one seems to know what is the actual root cause of his constant headache or how to help him. He has stopped all his meds, as nothing helps. My suggestion to you is try Mayo Clinic- that is a team approach. Hopefully all the specialists will work together to come up with accurate diagnosis & treatment plan. I am tired of all the fragmented care & no answer or help. That is what we are doing now. Still praying for relief so our son can feel well & function. Take care & best of luck in healing to your daughter


#9

Dear Brian’s Mom-
My heart is breaking for all of you. I so understand the frustration and pain that you are going through. The pain and hopelessness that we as parents go through when we have a child with a chronic illness is unbearable at times. Always wondering if we made the right choices but I have to believe that as parents we make the best choices based on the information we have. We’re not doctors and we have no choice but to trust what the doctors are telling us. Thank you so much for sharing your story with me. I will pray that healing will come to your son and I will pray for courage and strength for you to enable you to be there for your son. Good luck to you as well!!!


#10

Hi!!! From my years of reading about Chiari and tons of sufferers stories it seems like Chiari is different for everyone but the one trait that seems to stand out the most is those darn pressure headaches…and I don’t think doctors know enough about it to be able to treat it effectively. So the Chiari community continues to suffer while trying to live normal lives. I think its so important that we have a forum where we can tell our stories and hopefully through our trial and error treatments maybe we can help even one sufferer. Its pains me to my soul to hear all your stories and how you all continue to suffer. I’m sure like most of you, we’re willing to try anything that will give our daughter relief and back to her normal life. I thank you for following up with your post and pray that you find relief. I’ll post next week what the doctor in New York has to say.


#11

I’ve tried a lot of things that haven’t worked, including some of the meds on your list. Lately, I’ve been having luck with massage- it helps to work out neck spasms that make the headaches worse- and botox injections. I also carry around peppermint oil in my purse. When I feel pain and pressure in my head and neck, I rub a little on the base of my hairline and it really does seem to help ease it a little bit.


#12

Thanks. Best of wishes to you & your family. I hope 5 years from now we are saying- “Wow. Look how great our kids are doing. Life is good”


#13

It would be good to hear how you and your daughter are faring.


#14

Im so sorry I’ve been absent for so long. From February till about July my family was living in a nightmare. My daughter got worse and wound up missing almost all of her sophomore year of High School. She spent everyday in bed not being able to get up. All we did was go from doctor to doctor- we saw a specialist atCornell in NY- he did nothing for us and dismissed us as there was nothing surgically he could do. Didnt even give us a lead anywhere else. We found another hospital in NJ which had a child neurology department. They took us on and were willing to try more than anyone else. My daughter had 2 spinal taps (they thought maybe pressure in her brain was causing the headaches) several MRI’s and even a bolt screwed in her head- not pretty she looked like a TeleTubby. Everything came back fine- so no answers and no relief. We were referred to a pain management dr who tried two nerve blocks and then a botox shot. The Botox helped for a little while but then he dismissed us saying he doesnt do pediatrics. In the meantime we had a wonderful catholic priest see us privately and blessed our daughter and ask for healing. We also went to an energy healer who measured our daughters energy level and said it was very low and he felt a lot of her energy leaking from the back of her head. He recommended her changing her diet drastically- no gluten, no dairy, no eggs, no cheese, no vinegar, no chocolate, and no tomato sauce. Pretty much nothing left. Shes also taking a boatload of vitamins- B2, CoQ10, Tumeric, Magnesium, Fish Oil and D. We also found a new pediatric neurologist (our 3rd) and shes wonderful. It took our neurosurgeon to call her and beg to get us in early (cause we all know getting an appt with a specialist takes months) We saw her beginning of August. She put our daughter on Amytryptline and will do Botox shots every 3 months. She also talked about how important sleep and drinking plenty of water is and trying to reduce any stress at school. With all that said-- my daughter is finally doing better!!! The weather still causes her alot of pain but its gone by the next day. She was able to continue playing on her high school varsity volleyball team and had an awesome season! She was named county Athlete of the week, made 1st team all-conference and all-county. Her team also made it to the states championship game but sadly lost. We are feeling positive and continue with her regimin of sleep, vitamins, diet, Botox and meds. Were finally starting to feel normal again. Both me and my daughter having been seeing a therapist for awhile to help deal with all of this. Its helped us tremendously and my daughter also got a puppy out of all of this too. Shes been the best therapy for all of us. Im hoping and praying that maybe our story can help lead some of you in the right direction for seeking help. Head pain is the worst to diagnose and treat. You have to go through so much to try and find an answer. Many times I felt like these doctors didnt believe us. Ultimately, you know your body and dont give up!!! Praying for answers for all of you!


#15

Hi ChiariMom

It is wonderful to hear such good news! Diet, an anti-depressant, vitamines, Botox, sleep, counselling, and de-stressing. Sounds like you folks are on a good path. So glad that you were able to find the help that you needed after a long, frustrating search. Hopefully you will be able to tweak any residual bits as you are able. Good luck on the continued journey!


#16

I share your pain and can only tell you CBD has been the only thing that helps when mine get this bad.


#17

Thank you so much!!! How have you been doing?


#18

I continue to get better myself. I have been treating Chiari like a brain injury or concussion and have been availing myself of the wonderful treatments available. I just went on a course a few weeks ago and found more missing links to my treatment. Very exciting!


#20

Have you tried Botox injections? My husband has terrible headaches and botox has made the world of a difference.


#21

I had my experience with daily headaches, specially when I was in college, have you checked her eyes for light sensitivity? The exposure to the white lights in class were miserable for me, I purchased the light sensitivity glasses- well worth the $112. Also, is she sensitive to wheat or dairy? Try cutting wheat for at least a week and a half, the relief for me was in about 3 days. Truly wishing this helps, best of luck.