Hey guys
I’ve was diagnosed with chiari 1 and Syringomyelia (syrinx) when I was 17 and I’m now 30 and 2 months from having the decompression surgery. But I’ve recently been having back spasms on my left side and every thing feels stiff and tight down the left side of my body. I have been having trouble with my hip flexors and knee. I was wondering if there was anyone one here who has a syrinx caused by chiari and if it has caused scoliosis? if so what you did for diagnosis and treatment? wondering if I should wait till after surgery to address it or start addressing it now so it’s less work after surgery.
I developed scoliosis in my late teens after I had stopped growing. It showed up on XRAY and bone scan - mild to moderate but still there. My mom took me to a chiropractor every year as a kid so we knew it did not happen earlier! Looking back it was the same time as I developed other Chiari symptoms. As I aged, it was my right side that developed problems and pain.
I found that I was plagued with a series of primitive reflexes that altered my muscle tone and gave me grief that was not addressed by standard physical therapy for any length of time. Primitive reflexes are reflexes that babies have to assist in motor development and are repressed by higher levels of the brain as we develop - normally. Primitive reflexes can be retained past what is appropriate or emerge when older when the brain is stressed - brain injury, stroke, concussion, dementia, MS, Chiari…
The spinal galant reflex was the worst culprit for my back. Fortunately, there are more and more therapists who train with the primitive reflexes. The difficulty is finding someone who works with adults! I do have a post up with a variety of primitive reflexes that have a vestibular component as well as a motor component. “Dizziness and Chiari” under the Newbie section. If I had known about the reflexes before surgery, I wold have done them then! They help with tone and ease of movement for sure and I am glad that I have done them all.
As a note, I do not have scoliosis any more on assessment nor on imaging!
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I have chiari, scoliosis, syrinx. I’ve been decompressed for 4 months now. I have had nerve damage due to the syrinx in my spinal cord, that has led to numbness, and tingling down my left side all the way down to my toes. I have had this numbness for 10 years though so I do not know if I am a good person to answer your question. But you are not alone. Side note: my symptoms as far as, nerve pain/tingling has not improved from surgery. Hoping the syrinx does though!
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I was diagnosed with Chiari, syringomyelia, and scoliosis when I was 3 and had decompression surgery at age 4. I’m 32 now, and my right side is very stiff and tight with spasms, including my hip flexor. Acupuncture (particularly with gua sha and cupping) and Pilates have really helped me, but honestly what my body needs changes pretty regularly. I think it’s helpful to have several approaches, including some type of meditation/breath practice. If it’s not too painful to address it now, I say the earlier you start the search for what works for you, the better. Best of luck with your surgery!
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Are you saying Chiari surgery corrects the scoliosis and vertebral disk problems and body alignment issues? I am trying to figure if the scoliosis and alignment problems led to the Chiari or vice versa. It is really frustrating, and I am struggling with the correct route to go as well.
Chiari surgery does not fix scoliosis nor disc problems nor body alignment issues. Read on…
I had what is called a “functional scoliosis” before Chiari surgery for many years - 20 years. This happens when outside forces (aka muscle tone) pulls the spine out of alignment or into torsion and side-flexion.
After Chiari surgery, I still had the functional scoliosis in my lumbar spine with a complimentary twist in the thoracic spine. My increased muscle tone in my spine did not go away with surgery.
What straightened out my spine were exercises for the spinal muscle tone. These are “primitive reflex” exercises which target faulty muscle tone in the body.
Chiari did not fix my scoliosis. Reintegrating primitive reflexes and normalizing my spinal muscle tone did fix my scoliosis. However, I do not think that the primitive reflex exercises would have been helpful long-term before the Chiari surgery. My brain would not have reintegrated those primitive reflexes long-term with the continued stress of Chiari on my brain function. You need a good brain to keep those reflexes integrated!
Sooo… Chiari surgery did not fix my scoliosis, but I needed the surgery for the primitive reflex exercises to work. Complicated!
Hey guys thanks you so much for the responses!
@gabby_jazzypants this has helped me so much. I’m not sure whether or not I have scoliosis but feel like my left side is so tight due to the muscles spasms that it’s pulling everything out of place I also know I probably have a lot of weak muscle on my left hand side as well due to loss of feeling on that side. regardless though just knowing there is away to approach the tight muscles has been very helpful. getting rid of the problem first and then working on then exercises sense.
I’m on the count down to the surgery so I think for now I’ll focus on try to release the muscles just for maintaining my pain but once I’ve recovered from the surgery I’ll have a look it to the primitive exercises. Thanks So much everyone. Truely have helped my mental state!
That is good information! The scoliosis and alignment issues are much more bothersome than the Chiari for me now, so I hesitate to just have the surgery if I am not having too many symptoms at this point. A lot to think about for sure. Sigh…
I find it paradoxical that neurologists and neurosurgeons often advise people to wait until symptoms worsen yet also say that recover post-surgery is better the fewer symptoms you have! Check out the Chiari
Surgical Index. When Chiari was finally diagnosed for me, I was bed-bound so I never had the option of choosing surgery or not.
Any who… Hopefully, if you give the primitive reflexes a go with a change in posture that will help your body alignment issues.
I called 2 recommended neurosurgeons in my area for potential consulting, and they do not take my insurance. We are going to try to upgrade our insurance in Nov. 2020, but insurance coverage is only part of the problem. I know if I am ever going to have the surgery, now is the time since I am 44, but I am not ready to go that route.
With any consultation, they require recent MRIs, and my last ones done were in Feb. 2019 which are too outdated. The thought of going through more scans stresses me out all over again!
There is a lot to think about right now, and I know a lot of people have worse symptoms than I experience and financial issues going on right now. I am being very stagnant rather than proactive at this point. I am still seeing the chiropractor for low impact/manipulaton kind of treatments.
Please let me know how you are progressing after having Chiari surgery as well as any treatments for other spinal alignment/arthritis/cysts. I would love to hear any opinions or stories whether they are good or have some setbacks.
@kkdaycare75 hey I totally understand what you’re going through! I was told by my neurosurgeon when I was first diagnosed to wait till symptoms got worse I was pretty active, 17 and my only symptoms at that point was the occasional headache and loss of sensation on my left side. Up until recently my headaches got a lot worse and the sensational loss is creeping up in to my hands. So I went and saw two neurosurgeons and they both said that they would have operated when I was first diagnosed. Every one I have spoken to about this has said The point of the operation is not “fix what’s not work properly but to stop things from getting worse”. Why wait till till it’s too bad to cope with? I also had to wait for my insurance to kick in to be able to use the neurosurgeon I felt most comfortable with. Buts It’s taken me about a year to be be mentally and financially prepared. I’ll be happy to let you know how the surgery goes 
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Yes, please keep us posted in how your surgery goes and how your recovery and healing process is. I will keep you in my prayers!
Also, can I ask where everyone 's syrinxs are located? I did not see any were detected from my MRIs, but they just did brain, cervical and lumbar in Feb. 2019 which are all outdated now. Not sure why they did not do the thoracic region since that was where I had the mild scoliosis diagnosed from an xray in 2012.
I had a syrinx that was down by my C3. It was pressing into my spinal cord and causing my severe balance and walking issues. I had my surgery 1/13/20 and I just had my 3 month scan, 4/29/20 and my syrinx has completely diminished! I can walk again without balance issues, my headaches are gone, and my vision is back to normal. Surgery worked out great for me, but it was a process and it took me time to recover. Two weeks after my surgery I wouldn’t have guessed things would be as amazing as they are now. Embrace it! Let people help you, take it a day at a time, and remember how much you kick ass! You’ve got this, keep us updated! Good luck, sending my healing vibes your way!
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@Ktbelcher thank you 
I really needed to hear that!!! I’m glad you’re doing well it makes me kind of excited for it all just be done. 4 weeks now! Keep us updated on how your going.
That is wonderful to hear, and thanks for the update!
Hi,
I hope you are all doing well and can post some updates soon.
I noticed no improvement for a year and a few worsening symptoms on my end and went to a new neurologist and got another brain mri, cervical MRi and a thoracic MRI instead of lumbar as of 10/9/20. Chiari is still there with no progression, cervical disc disease worse at c5-c6, and a thin syringomyelia starting at T4 and extending to T11-T12 with prominence at T11-T12. I have one neurosurgeon referral, but I am would like a couple more if possible. The thoracic imaging is what is throwing me off now, and I also joined a FB page called Chiari & Syringomylelia support, and FB ignored my post and reprimanded me for asking for recommendations? Grrr…
Katie, I have Dr. Krumerman on my list to schedule a neuro consult with, and I am scheduled to see a referral from my neurologist at Methodist RIchardson on Oct. 29. I am googing obsessively because I never thought I had a syrinx until last week. Is surgery worth it if your symptoms are not horrible yet?
If I get annoying with all my questions, please shut me up!
Hey @kkdaycare75
I’ve just hit the 14 weeks post decompression surgery and I feel amazing. Seriously I haven’t felt this good in years. My syrinx has collapsed. And I have started to regain feeling in the lower part of my left leg. Which I didn’t think that could happen it’s been 16 year since I have had any sensory feeling on my left leg. My energy levels have increased, I still get a little tired later on in the day but that is to be expected. My parents are over the moon and keep saying how we should have done this sooner. Your question is a hard one to answer because it totally depends on you and your quality of life at the moment. I had to have the surgery as I had just turned 30 and I was was struggling to walk and get through the day due to the effects the syrinx had on my body. My quality of life was decreasing quickly. But I found a surgeon here in Australia who only does decompression surgeries he’s a specialist in chiari and syringomelia and I’m so glad I waited because I may not have found him if I had rushed into it. I have attached my most recent scans so you can see the difference it’s pretty amazing google can tell you all the different symptoms and the worse case senerios and to be honest I didn’t realise how bad I was until coming out on the other side. I feel talking to people you can get to a bit more of a clearer picture. Of what people are going through rather then just symptom checking on google and don’t worry I did the same thing and that how I found this place
Wow, that is incredible how much your syrinx has shrunk, that was huge! How wonderful you are feeling better, and that gives me hope. So much to think about, and too bad your doctor is in Australia!! I appreciate your advice, and hope your recovery keeps going well. I will probably check back with you at some point as I am trying not to let this consume my life.
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I am delighted to hear of your progress post-surgery. Yeah for improved quality of life!
Carry on with reclaiming and improving your day to day and your future plans.
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Hi who was your doctor who did the decompression in Australia?
