Leg cramps

[reelman]

Is anyone else experiencing tight hamstrings and painful knees due to Chiari 1?

[*Stormy*]

I replied to you on the other post about some of my post surgery experience... but I just wanted to say that I am SO sorry that you are experiencing more symptoms than before.

Also, you need to find a new DR!! They should care and be doing something about it, there are those Drs out there but unfortunately you have to dig deep!

Stormy

[Mannas]

I would love to hear what you hear from your Neurologist today if you ask about this.  I am scheduled to go in next Tuesday to mine but my balance has been noticeably worse this week and I have also had the tightness in my legs and pain in my knees much more lately.

[selmaS]

Hi and welcome to the Chiari forum.

It is so hard going thru recovery as there is no support from the drs as to what to expect....it is a roller coaster ride for sure, and that is something they tell us to avoid.....

If ur HA's r worse u may have a CSF leak....if u have new symptoms and feel worse overall u may have developed related conditions....suck as ICP, POTS, or u may have scar tissue, or rejection of ut patch if u had one placed.

It is typical to have symptoms return during recovery...at 2 to 3 months is when u may begin to experience this, depression that it may not have been successful sets in, but it may be a stage.....

The issue u want to look at is ur HA debilitaing...is it worse than b4 surgery and if so, how much.....

Since u said ur lower back is giving u problems , do u also have bladder issues?Were u checked for tethred cord?

  "selma"

[reelman]

As I understand it, it can take up to a year before symptoms improve. PT is supposed to help. But since I haven't had surgery yet, I am going on the word of others. Be blessed!

[MrsJ34]

I am 34 years old and I was diagnosed with chiari in December of 2010.I had surgery in March.Before surgery my only symptoms were dizziness headaches and numbness in my left arm and fingers.Since the surgery my symptoms are worse and my dr doesn't seem to care.I now have extreme pain in my left arm and shoulder,the left side of my face and head are numb the headaches came back and the middle part of my lower back hurts,just to name a few.I know it hasn't been long since my surgery but I am not on any pain meds and my life is miserable.Has anyone else  experienced this and if so is it normal for this to happen after surgery.

[littleone3611]

Hi! I am so glad that I have found this community and know that I can talk to others who understand exactly what I am going through.  Like you my pain began in my leg and my DR told me I pulled a hamstring and took me out of work for a week. The pain never got better just worse. I was getting pain in the right side of my lower back and then pain in my right hip and it hurt so much that I would be in tears at work. I couldn't walk without being in a lot of pain and I was constantly bumping into things. My doctor had me on so many diff anti inflamatory meds and pain pills but nothing helped, I was even told by my dentist that I had Lyme disease. I was finally diagnosed with Chiari1 with a syrinx in my cervical spine that went into my thoracic spine this past Oct.My neurosurgeon told me that my leg pain is associated with Chiari due to the fact that my brain is putting pressure on my spinal cord. I had surgery this past Jan and was hoping this would be the end of my leg pain but as of right now I still have it along with pain in my left shoulder blade and shoulder. My Neurosurgeon told me that the surgery was only a preventive surgery and may still have nerve pain.Before the surgery I would sleep on my left side but now because of my shoulder pain I have a hard time getting comfy. I am currently going to PT to help with my balance and corodination but it hasn't helped much. I go back to to my surgeon next week to get another MRI and I am going to ask him if I could got to a pain Dr. I am only 36 but I feel like an elderly arthritic person.

[*Stormy*]

Have you found the recliner to be helping? It's not the perfect solution but I find it's the only way I can find some relief short of going to bed!!

Stormy

[reelman]

Thanks for the reply

[reelman]

Thanks for the info.  I have not been checked for that particular syndrome, but will mention it when I see my neurologist this Friday.  

[Mannas]

Yes, I have definitely noticed this.  I feel like I have had a lot of my symptoms hitting hard all of the sudden.  My legs feel stiff and my muscles ache.  I also have pain in my knees and ankles.  When I walk my legs are very wobbly and I often feel like I am going to fall.  Luckily I haven't yet but have stumbled quite a bit and get close.

[niki3350]

Hi yes like stormy and many others here it has been my pain and this has been severe in my legs,hips,knees,ankles lower back and between shoulders alongside my awful balance that the chiari has affected the most.

Im now very very stiff walk with my right foot turning outwards and struggle to get up from sitting on the floor, I cannot sit for more that 15 mins without feeling in pain and uncomfortable.  So much so that I have just had a recliner delivered so im hoping I can get relief or at least a little anyway, nighttime is the worst for me as just cannot get comfy in bed and when I do I stiffen that much its awkward to move around in my bed.

But im struggling to get my ns to take me seriously as he says this is not chiari and all chiari causes is headpain and balance issues.

Niki x x

[*Stormy*]

Hello and Welcome,

Yes, one of my worst experiences with Chiari has to do with leg pain and stiffness. Long before I started to have other symptoms I would go through bouts of extreme joint pain and I would keep thinking that I had a virus. What I realize now is that Chiari causes muscle weakness and pain in the joints is one of the first signs as your joints are not being supported by you muscles and ligaments as they should be. Also, the stiffness a lot of the time is you body's way of reacting to the weakness, when one group of muscles isn't working, a different group will work to stabilize. Ultimately, the cause is usually cerebellar damage as it is in control of how your muscles coordinate. When this is off and only some muscles are working it really puts a stress on your whole body to still accommodate movement. I read somewhere not that long ago that it takes about 200 muscles to walk so you can imagine what would happen if some of those weren't doing the job anymore!!

Hopefully that helps..
Stormy

[selmaS]

  Hi and welcome to the Chiari forum.

I had many issues with tight ham strings more so when I was a child and I was told it was growing pains, the pains I had as an adult, I was told it was most likely from the fact I was dx'd with Ehlers-Danlos and my joints r not stable and I believe I tend to try to hold tight to help balance and hold myself together......

Have u been checked for EDS?

   "selma"