Chiari Online Support Group

Physical Therapy


#1
Has anyonne had Physical Therapy as an alternative or form of treatment for #Chiari? If so, what did they do? Did it help? What was the reason for PT as apose to any other treatment?
I'm asking for another Chiarian who is having trouble finding information on this topic. I can't seem to find much as well.

#2

I had PT right before I found out about my Chiari. when I saw the doctor and told him about all the pain I was having in my neck he sent me to PT. For me it did more harm then good. I would walk in feeling ok maybe alittle tightness in my neck and I would leave in tears. They tried massage and traction. It killed me each time. I went for 3 sessions and quit. Granted this was before the PT and I knew about my Chiari maybe they would have done something different given my condition. Now I don't let anyone near my neck. I don't think I would ever go back for fear that I maybe hurting myself even more. All I do at home for pain is take my pills and put Ice on my neck.


#3

On April 20th it has been 2 years sice i had decompression. Drs said PT was unnecessary after surgery, now 2 years later they decided to start. I have been going 3 times a week. They decided on this to strengthen some of the muscles that were cut in my neck. So far I can see some little improvements. I am of course tired and played out by the evening but i am used to that. So until improvements stop I will continue. They do ultrasound therapy, massage and strengthening exercises. i so far like the ultrasound therapy best. it seems to get deeper into muscles. Hope this helps.


#4

My NS ordered PT when I was diagnosed because I have stenosis and bulging discs in my cervical spine as well as CM. Sometimes people have symptoms of CM when they have stenosis which also causes decreased flow of CSF. I was disappointed as it really had no impact on my symptoms, the cervical traction was agonizing and I went home with a bigger headache than ususal. My NS wanted to try conservative measures first before resorting to surgery. However, my symptoms quickly progressed over the year, and I had decompression with a C5-7 laminoplasty on 3/12. I had my 6 weeks follow-up yesterday, and he ordered Pt for my neck as the muscles are very tight and I have pain where he did the laminoplasty. My NS combined two surgeries and my recovery has been rough to say the least. My MRI of my brain looks so much better than preop, so I'm hoping for some relief of symptoms. My NS is a very confindant man, and he says I'm cured. I pray every night to be better than I was. I take it one day at a time, and so far, everyday has been better than the last.


#5

It's ten years out from my surgery and I just did PT again to help strengthen my neck muscles. For me the laminectomy and fusion kinda messed up my posture and the way my neck "sits", so strenghtening it does help. I see a Neuro PT who actually has been formally trained to work with Chiari patients. It takes many months to really notice a difference. At the beginning it is pretty painful getting those muscles back in the shape they need to be in.

I have also done Acupuncture off and on for years. It does help some of my pain from Trigeminal Neuralgia (caused by the Chiari) and sometimes helps relieve some pain from migraines and headaches. It definitley helps the paresthesis I get in my limbs!

Good luck! Monique


#6

Hi Alicia, I'm in my 6th week of PT and for me it has made a tremendous difference. I'm not doing PT neccessarily as an alternative treatment, just to relieve some of the headaches and neck pain. I first saw my neurologist in March. I was having horrible head and neck pain, sometimes lasting as much as 8 days. I was taking Butabital, robaxin and IB 800's and nothing was helping. Anyway on my first appt my Dr. ordered MRI's and CT scans and suggested I do PT. 4 weeks later I was diagnosed with Chiari type 1. I chose to continue PT because it did make a difference in the way I felt. I understand it doesn't work for everyone but it has surely made a differnce in me. I wish you well in whatever form of treatment you choose and I hope it works for you. BTW my Chiari is at 10mm and I don't know if that makes a difference ( I'm still trying to read and learn all I can about Chiari)


#7

My granddaughter has had symptoms for a couple of years before she got a diagnosis. Her GP diagnosed her with Trigeminal Neuralgia and gave her pain meds and sent her to PT. The PT was very painful and made her worse. Her eye doctor wanted her tested for MS, so she eventually ended up at a neurologist. Her MRIs did not show MS, but in an off handed manner the NE said "But you have Chiari Malformation". (We should have asked more questions.) We had never heard of it so started searching for information on the Net. Then the NE's office called and said that he wanted my granddaughter to have PT. She is refusing to go because of how painful the first experience was. Plus now her gp told her that she didn't believe that there was anything wrong with her because the NE had never sent any information about Chiari. I don't think that a lot of medical professionals know what to do with Chiari. If PT would help, I would be all for it, but I do know that the first experience was not good. Any thoughts?


#8

I did PT after surgery. It included neurodynamic exercises to help with the extensibility of spinal cord and nerve dura.

Primitive reflexes to help with dizziness, balance, and faulty patterns of movement

Motor control exercises for head. neck and shoulders (and back and hip for my pesky hip) also strengthening of SPECIFIC muscles not just global movements just to d something.

No traction as contraindicated for Chiari, no modalities (electronic devices as not effective in improving conditions and not always covered by insurance), no other passive treatments as effectiveness also not proven!

With Chiari, treatment may be uncomfortable as muscles and joints are used in different ways, but it should not be painful for two days. Massage killed my neck and head so I stayed away from it. Sometimes it was difficult knowing how much to progress as my sensitivity was high but we learned.


#9

I have had really good success with cranial sacral therapy. It is very gentle and works on CSF flow and scar tissue among other things. It was created by John Upledger and you can learn more from his book Your Inner Physician. I am working with a therapist trained by him and she is amazing. I have worked with others who are not so good and did not receive the same results. I've had two brain surgeries and two spine surgeries so I've had a lot of scarring and pain. This has been a great source of relief for me. I hope other people can find some relief from this therapy. One word of advise, do your research in finding out how the person is trained. A connection to the Upledger Institute is very helpful.

This is a great therapy that is not widely known or understood especially by doctors. But, it did recently get acknowledgement by the Chairman and CEO of Aetna after suffering a broken neck from a skiing accident. He was on narcotics for pain and was told to go on disability. He credits cranial sacral therapy (in conjunction with yoga and acupuncture) for allowing him to get off of narcotics and return to work. His interview is on-line on UTube. It's quite a testament from the CEO of one of the biggest medical providers in the country. Notwithstanding his ringing endorsement, most insurance companies, will not pay for it. It may go towards your deductible.