I am 2 years post my 2nd decompression and 5 months post my 2 level disc replacement in my cervical spine. Over the past 4 years I have had a total of 6 surgeries and after every surgery by body feels weaker and my pots symptoms get worse. My doctor recommended I do physical therapy to help me out. This is week 3 of therapy I feel like it is making my Chiari symptoms come back. I am having pressure headaches, ringing in my ear,more right sided numbness and worsened fatigue. It is so frustrating because therapy has consisted of mostly massage and manual work and slow and easy exercises with breaks in between. Since my 2nd Chiari surgery, most of my Chiari symptoms have improved and it scares me that they are returning. Has anyone else have this happen or is there a different therapy approach I should try?
Yes! Yes! Yes
Traditional physical therapy, what you have described with massage, manual therapy, and (probably) basic cardinal neck movement exercises, typically makes people with Chiari worse. A number of posts over the years on this site will indicate the same.
What I have found that helps Chiari folk is:
1) Neurodynamic exercises - starting distally (feet and hands) and working up the line to the head. I personally have been doing this strategy for some time with slow but steady results. A physical therapist needs training in Neuro-orthopedic Institute (NOI) course and progress SLOWLY working up to 30 repetitions before progressing.
2) Graded Motor Imagery progressions are invaluable as there tends to be an element of central sensitization with Chiari given its chronic pain tendency. This is also though NOI. There are excellent book resources for client and therapist alike on their web site. When I ordered my books it was cheaper to order through there Australian site than amazon, but that might have changed.
3) Primitive exercises for any balance or ear stuff is very effective if a client is screened appropriately. This information is not through NOI. See the "Chiari Info for Members" for that stuff. This knowledge base is much less common to find in the physical therapy clinic which is why I put it on this site to review. There are also many others that I did not list that can be contributing factor to other aches and pains.
4) When any centralization concerns are dealt with, motor control exercises of the neck are an important finishing step to insure that movement is normalized. Proper anterior, posterior, lateral, and rotation control of all segments of the neck are important with Chiari folk. You may be able to start with shoulder and back motor control at the beginning to give a good base for later neck exercises. Again, not through NOI but through other sources. I am not familiar with all physical therapists that might offer such instruction. A physical therapist should be able to tell you if they are trained in this more common approach in physical therapy. If they look at you a little vaguely and mumble on, they just want your business. Get them to list the instructor or book that some one based the information on and research if they are good to go.
Again, a physical therapist will do you a disservice if they continue with an therapy approach that worsens symptoms into a "flare-up" situation. The pain information in the NOI books is invaluable in understanding activity levels and therapy progression. Especially given cervical disc involvement which can also a contributing factor to chronic pain situations and central sensitization.
Discussing these different physical therapy approaches with your current therapist may be beneficial to see if another therapist in the clinic has this skill set or if there is someone else in the area they can consult with or to refer you on to them. Good luck with finding someone. I know that I continue to see results, again slowly, with theses various approaches when "traditional therapy" worsened my symptoms just like you.
I went thru this. About an hour after physical therapy the chiari pain would become much worse and i would get cluster headaches and lose most vision in right eye. And as you said was mostly massage and very light therapy. The heat they insisted on me using for 10 or 15 min a session to "loosen me up" always made me worse. Ice for me is okay but heat makes things worse. I did 16 weeks of physical therapy and felt better once it was over. So i suggest if your pain is getting worse dont force yourself to finish the sessions.