Chiari Online Support Group

Checking in again

Hi guys! It’s been a while since I’ve been on the site. I pray you are all managing well. I’d love to say that I’ve been gone bc things have been great…alas, I cannot. Hope has been struggling immensely again and the lack of help with her doctors has become debilitating at times. However, after more than a year of circles, yesterday we finally had a NS acknowledge her pain, other symptoms and the fact that her Chiari and EDS are the cause. Unfortunately, it took a huge (and quick) degeneration in her cervical spine for them to finally admit she needs real help. We were told that she will definitely need surgery to stabilize her cervical spine and the Chiari surgery as well. Of course they would like to wait as long as possible bc she’s is only 11 but her quality of life has degraded so much that I’m afraid that she won’t be able to wait much longer. I know our journey has been short in comparison to many others and I’m thankful for that. I simply cannot imagine waiting years on end for validation. For once, someone finally said to her “I know you are hurting, I know you are suffering. I want to help.” Those simple words felt like winning the lottery.
Now, I have a question for you guys, especially ones with littles that are diagnosed. She is almost 12 but as big as many adults (5’3” approx 110 lbs). I know she is still growing and it would be best to wait as long as possible before permanently altering her anatomy, however, they have offered nothing for pain control and nothing to help with sleep (aside from the clonidine she has been taking for a year with little help). Is it a cut and dry “no” for pain meds? Sleep meds? She is at the point now that if she showers, that’s all she can do that day. If we leave the house for even an hour or two, she is bed bound for the next two days. Surely there is something that could help. She’s tried all the anti depressants but had severe negative reactions to them all. She can’t take the typical migraine meds for the same reason. We are waiting for testing but I highly suspect she also has MCAD. Any thoughts would be greatly appreciated!
Although I’ve been out of touch, I haven’t stopped thinking of you all and thanking God for sending this group into our lives!
Much love :purple_heart: Angel

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Hello, Chiarisupport.org members! Myangelface, who you may remember, has dropped in with an update on her daughter and some questions that she thinks you may be able to answer. The complete thread is here, if you want to read it on the site. (Copy to @trust_level_0)

myangelface, I know that many of us here will be relieved to hear that you and your daughter are making progress. You aren’t “there” yet, but at least you are moving forward. I’m – we’re – so happy for you.

Here’s myangelface’s question:

I have a question for you guys, especially ones with littles that are diagnosed. She is almost 12 but as big as many adults (5’3” approx 110 lbs). I know she is still growing and it would be best to wait as long as possible before permanently altering her anatomy, however, they have offered nothing for pain control and nothing to help with sleep (aside from the clonidine she has been taking for a year with little help). Is it a cut and dry “no” for pain meds? Sleep meds? She is at the point now that if she showers, that’s all she can do that day. If we leave the house for even an hour or two, she is bed bound for the next two days. Surely there is something that could help. She’s tried all the anti depressants but had severe negative reactions to them all. She can’t take the typical migraine meds for the same reason. We are waiting for testing but I highly suspect she also has MCAD. Any thoughts would be greatly appreciated!

I know myangelface is looking forward to receiving some input from you.

Hoping this post and message finds you as well as you can be!

Seenie from ModSupport

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Hello, I pray for relief for her! Have you tried melatonin for sleep, its natural? Tumeric/curcumin for pain, also natural and OTC? I am 41 years suffered since childhood. Had depression surgery one year ago tomorrow!! I understand symptom return and progress rate is higher in children and scar tissue. I believe in a good pillow too, and for me at my age walking no matter how tired I am and eating healthy always helps me. Hoping for relief :pray::crossed_fingers:

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Try all the natural remedies that Sak1079 said…in addition to that, yoga and healing meditation music on YouTube has helped me tremendously. I never had the surgery.

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Valium tends to work the best for pain.

Also Ice.
Lastly, the surgery has better outcomes in kids than adults. Don’t wait. Get her relief. My dtr was 8 when she got hers done. It changed everything for the better. I hope this helps. Also, my dtr did not sleep until
After her surgery, because her CSF wasn’t cycling, so you should get a CINE MRI to see how big of a deal it is.

Tlgb

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I was put on pain meds and it helped me at least function for 5 years before my surgery. I am off all narcotics. The most helpful, however was a combo of Motrin/Tylenol. I have had to be on Ambien for sleep for MANY years, now even post surgery, due to pain and pressure. My c1-2 is just unstable and I also get numbness and pain in my arms. Without Ambien I would not sleep and go insane! Unfortunately, these meds cause dependency, and cause entirely new issues.
I understand your struggle. I, for one, having gone through Chiari pain and decompression, think it is cruel for doctors to not offer her some relief, at least for sleep. Good luck you guys!!! :heart:

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Hi,

So I take hydrocodone 3x a day 10mg. If I didnt I wouldn’t even b able to function. It doesnt take away all the pain but enough to dull it. I also have a topical compound cream for my neck & shoulders that has gabapentin, a muscle relaxer, ketamine, diflocun I think it’s spelled. the compound I use as an extra when things get really bad. I see a pain specialist because my pcp isnt about meds & he gets it. Not many drs believe symptoms of chiari. I’ve been really struggling going on 3 wks now with a flare up I’ve never had before so if I were a mom of something like this I would absolutely get something for her. Good luck & I hope you find something so she can be somewhat pain free!

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Hi… I was diagnosed with Chiari Malformation in 2013 and had surgery Dec 2014. I was in and out of the ER so much the staff knew me by name. Migraine pain is awful! Thankfully, I finally found a combination of medication that work best for me - gabapentin, amitriptyline, magnesium and melatonin. Unfortunately, it’s a matter of trial and error… Children do recover faster than most adults. I know first hand what it’s like to watch your child suffer because they are in pain. Sending prayers your way!

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Hi there. I’m a zippered Chiarian as of 2006. I manage my Chiari and Rheumatoid Arthritis with diet. I really struggled with pain and other Chiari symptoms until I started the Autoimmune Protocol (AIP). It changed my life maybe even more so than the decompression surgery. It made such a difference that I got certified in nutritional therapy and I am a certified AIP coach as well. A lot of our symptoms come from inflammation around the herniation as well as throughout the body, if we can keep inflammation down the symptoms are much better. I also ice/ herbal heat pack the back of my head and neck when I need to and take an occasional ibuprofen. Turmeric is an excellent analgesic if you want something natural, ginger too. When I used to have bad migraines I would take 1 ibuprofen, 1 tylenol and a sip of something caffeinated. Hope this helps and wishing you the best!

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Hi, I am sorry your daughter is in need of surgery at her young age, and it saddeens me she is struggling with pain management. I wish I vould give you some good advice on pain, but my physical symptoms are not half as bad, and I am much older than her! I am seeing a PT who has been wonderful, but they can only treat so much. Have anti-inflammatories worked for her during the day/night or a small starter dose of anti-anxiety med at night work? If you want to avoid the meds and start somewhere holistic, have you tried a LLT (low level red light therapy) device through chiropractor or PT? Do some research on photobiomodulation therapy for pain. I am doing this myself because I want to avoid any surgery if possible, and pain meds are never a long term solution. I am sure you have all the ice/heat therapy at home and have tried wedge pilliws for her body positioning comfort. My husband and I pray alot too, and I know that uas helped us with stress.

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This is a tough one- because of her being a child, she will be limited in choices. She sounds just like me- in bed - and the slightest extension of energy ( taking shower, etc.) places me into a pain-cycle. I’d google “top pediatric pain management docs” in area or find an adult PM doc who will take your daughter’s case on. Unmanaged, long term, chronic pain ( and sleeplessness) wreaks havoc on the body. Unfortunately, pain medicine that might give relief, may be only at a narcotic level, which at her age, would probably be reserved for acute, severe pain episodes under a doctor’s care. ( Hospital).The only thing I can think of, but of course ask doc if age-appropriate: gabupentin, tizadine ( non addictive muscle relaxer), and possibly nerve blocks/botox injections. Botox may help her migraines too. The clonidine might help more when taken in in tandem with other medications or a natural resource, like melatonin. Tens unit? Heat packs? I had to switch between meds, tens unit, heat packs and alternative treatment, like melatonin or Voltarin cream. Gabupentin can help with sleep, but concerned again, if age- appropriate. A good PM doc should be able to come up with a comprehensive plan for her. I feel for your daughter- chronic pain untreated, IMO, is inhumane. ( Not implying you are being inhumane of course- it’s doctors who are often gun-shy to offer humane-relief). Especially for minors. Nothing is worse than seeing your own children suffer, If she has cervical pain and/or instability, this is a serious, debilitating disorder and the chronic pain will leave her in a non-functioning state. If surgery is ahead, the PM doc may just offer pain meds until the issue is addressed with surgery. PT can be tricky- it can’t “fix” an anatomical defect, and therefore, IMO, doesn’t offer immediate relief ( if any) from pain. Unless her muscles can be build up to help give support but that can only do so much. Diet, stress relief, calming-efforts are all good advice, but if her pain levels are severe and constant, a PM doctor will be your best bet.

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Massages also work wonders! Please keep us posted- I am curious how doctors view pain management for minors and what they will/won’t do for minors with chairi/cervical issues.

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Wow! Thank you for this input. I will definitely research this. She has been on melatonin for a year and we use meditation for sleep…honestly, it has helped her to relax so she is at least resting but she still doesn’t sleep. Sometimes for days in a row. We use a combination of ibuprofen and benedryl when she is having a particularly high pain day. We also use ice packs (a tip I’ve learned here) and topical creams including cbd but with little relief. She tried Amitriptyline but she had a severe reaction to it :confused: I’m definitely more interested in the natural remedies but I would also like the option of having something to offer her on her worse days. I appreciate you all so very much!!

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I just had decompression surgery on Aug 25th 2020, 4 days after my 44th birthday. I’m day six post op. Day 3 and 4 were my worst. But my world is clear, my head isn’t in pain. My headaches are controlled with Fioraicet…most amazing med ever. Heating pads are your friend! No matter her strength she needs to walk and stretch. Valium or Ativan helped along with tizadine (zanaflex) a non narcotic muscle relaxer. Another natural relaxer 303 formula. Occipital nerve blocks and Botox were a saving grace. I have had symptoms since I was a kid but never knew I had a Chiari until 2017, when I couldn’t find my words and was confused all the time. As a kid I sucked my thumb until I was a teenager. It was a pressure point relief issue for me. Try pushing the point right above her eyes where the eyebrows come together. I also change to a protein diet before surgery and prior to that the API diet. I developed POTS and passed out every time I stood up. I know you said anti-depression meds don’t work for her but Cymbalta works for me and was put on it for back pain, bonus for depression. I had to advocate for my surgery as all neurologist kept saying it was migraines. I found the Colorado Chiari Institute and highly recommend that you check them out. If you need help with costs there are ways. Try GABA you can find it in the vitamin isle, ask your doctor about before giving any meds. I’m not a doctor but did work at Children’s of San Diego for 10 years. It helps with anxiety and mood. Also check to see if she doesn’t absorb vitamins. I don’t absorb vitamin A,B, E, or K. No vitamin D means muscles hurt, bones hurt, you don’t get good sleep. To combat this I take a supplement of L-methylfotale. I hope this helps and I pray for her and your future endeavors. Loves and hugs! ~B

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Hey Makinyoulaugh, welcome to the Chiari community. The company’s good here, isn’t it? (And it’s just got better with your arrival, right? :upside_down_face:) We’re glad that you found us, even thought it’s too bad you’re a member of this club. But seeing you are, we hope you will be glad you’re here too.

So at this point in the discussion, ModSupport often chimes in with a safety reminder. When “we” get going on meds and supplements and things like that, we like to remind our members that it’s very important that you tell your docs (and also you pharmacist) about everything that you take in the way of OTC meds and supplements. Even the most apparently benign ones can have serious interactions with something else you maybe taking, or unintended consequences with respect to your condition.

Seriously, play it safe! The last thing any of us “rarees” need is a rare interaction or surprise effect we weren’t expecting.

Great that you’re posting and sharing the love!

Seenie from Modsupport (with Sharon, Merl and TJ)

PS I have a feeling you’re going to like our Complementary Therapies section. That’s the place where you’ll find loads of tips and tricks!

Agreed, Anything mentioned is only as a suggestion and of course, only under guidance from professionals/doctors. I do not want to recommend, nor am I recommending anything, even OTC, - as it could have adverse affects, Just things that you can ask doc’s about. I wish your daughter the best!

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Thanks Seenie, all my meds/supplements/MMJ are known through all doctors from my Pcp, to the neurologist (I am not happy with him), my pain MD, and my surgery team. (Best surgery team ever) Dr. Oro and Stephen in Denver along with Kimberly Sexton and the team at the Chiari Institute were the first people to hear me an tell I wasn’t crazy. Because of them, I am still here today. I used to work for Rady’s Children’s Hospital in San Diego…supervisor specialty call center. I know many great Dr.s Dr. Levy and when I worked there Dr Revivo. I would like to become a spokesperson for Chiari! I hope in my post I said to check with a Dr as I am not one. All meds need to be disclosed at all times.

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Perfect, Mainyoulaugh! We admin-types get kinda hung up on these things y’know!

the Chiari Institute were the first people to hear me and tell I wasn’t crazy. Because of them, I am still here today.

Wow … I work all over the Ben’s Friends network, and I think of all the things people say, this is the one that gets said most often. An undiagnosed problem does exactly that: makes you feel like you’re a nutbar. And a solid diagnosis, aside from giving the potential of relief, reassures us, more than anything, that we’re not crazy after all.

Your post was fab, especially the part about not being a doc! You’re well on your way to being a Chiari ambassador as well as a warrior!

:heart_eyes: Have a great day!

Seenie

Turmeric and ginger are great natural analgesics. You might want to check into high oxalate foods, they may be increasing pain levels and can affect sleep as well.

Hello, I want to make sure you knew I wasnt discouraging you from surgery for your daughter. Decompression surgery really is the only way to restore the flow of CSF that I am aware of from my research. I did have a CINE MRI and it showed I had blocked cerebral spinal fluid and according to the surgeon I saw in NYC, chiari malformation 1.5.