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Hip pain which radiates into thigh and lower back, Chiari related?

Hi All,

I've not posted until now, but always keep an eye on anything that may explain anything to me!

I was hoping someone may be able to shed some light on my symptoms! Apologies if this goes on a little bit...

First some background - I suffered from severe headaches for as long as I can remember, along with left side weakness and several other symptoms. After many years of doctor’s apps and misdiagnosis, Early 2017 I was diagnosed with symptomatic CM Type1 with a 23mm herniation, no syrinx but with CSF restriction. I underwent decompression surgery in May 2018 and after a few rough months my symptoms started to improve!

Late 2018/Early 2019 I was experiencing severe aching pains in both legs, my neurologist prescribed me Pregabalin which seemed to ease the pain but was by no means a ‘fix’. I was formally discharged from neurology in March 2019 (to my displeasure). The past 8-10 weeks I have been experiencing excruciating pain in my left hip which radiates down the back of my thigh and up slightly into my lower back, several doctors appointments later my gp decided I have Piriformis syndrome and have loaded me with zapain and baclofen, neither of which seem to make any difference. Next option is physio, due to start in the next couple of weeks. Following this the past 3-4 weeks I have also been experiencing upper left side weakness again, my left arm feels noticeably weaker than it ever has, clenching a fist is more of a challenge than an exercise! I have been referred back to neurology for this, and am awaiting appointment details.  

I was wondering is anyone else has had similar hip symptoms or whether this could be related to CM at all? I am fairly confident the weakness is linked as I experienced this before decompression, however my hip/lower back pain seems to be pushed off as a different issue completely.

Thanks for taking the time to read my story if you got to the end!☺️
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620923 tn?1452915648
Hi and welcome to the Chiari forum. I am glad you decided to post a question, being part of the community can many times help more then just reading other posts.....since you have more of a give and take of thoughts and concerns and sharing how others may have dealt with a similar issue..
My situation is a tad different than yours, but we have some similarities too.
Surgery for me was in May of '09.....and it took almost a year till many post op issues calmed down, but I did begin to see improvements.....and for years after saw even more.
One issue I started with before my surgery was numbness in my left leg...the lower calf to be exact.....jump forward to 2018 and I started to have more severe leg pain starting at teh lower back and hip.....sciatica....which the same muscle that is aflicting you is a big part of for me as well.....so I found so ways to stretch the Piriformis and it has helped.

Is this Chiari related....to some degree yes, I do believe it is, even if it is a comorbid condition like Ehlers-Danlos being the root....it comes along with Chiari so, Chiari is quilty by association in my book.

In addition to my left leg being an issue, I also get numbness in my left hand....it comes and goes....and I am sure it is related to the same reason the Piriformis acts us....the problem is not too many Drs understand the comorbid conditions and how they affect us....so many times our other issues get back shelved, ignored completely or they chalk it up to us over exagerating ....so they plakate us with meds for the immediate pain but they do not seek the cause.

For me, I use CBD topicals and stretching.....meds are something I avoid at all costs since in my personal experience meds to not help with neuro pain....and most of what we have is neuro in nature....JMHO

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