The latest NS I met with indicated I was not a good candidate for decompression surgery. After reading some horror stories online of people who have had the surgery with no success I was okay with his determination. However, it left me in this void.
The void falls somewhere between the NS who won’t operate on me, the neurologist who says there isn’t a medicinal treatment plan and we’ll have to just work by trial and error (it’s been all error so far), and daily pain that people outside of this forum do not seem to understand.
Challenging the marketing strategy of my medical institution (“Defining Personalized Care”) I asked for more - something else that might help me see relief. As a result, the NS put in a referral to the physical medicine and rehabilitation department. But I didn’t get from him what he felt they may be able to offer me. Thankfully my sister attended the NS appointment with me and recalls hearing him say that they could give me “shots”. But we don’t know of what.
Does anyone have any experience working with the physical medicine and rehabilitation department without first having had surgery?
Im not sure about the physical medicine and rehabilitation part. Please update me if it help you. But I do know that after my surgery in 2007 i am still having trouble even bad mood swings since 2014. I have been given all kinds of meds and the only thing to help is a shot from the ER.
I hope you find at least some relief
Thanks for the reply Emilyc. I’m sorry the surgery didn’t relieve all of your symptoms. And I will be sure to let you know if whatever shot they provide offers me any relief.
Not knowing your specifics, there are some non-surgical things that do help lessen Chiari symptoms - at least until you are a candidate for surgery. I lived with the Chiari (diagnosed) for 15 years before mine worsened to the point requiring surgery. Here are some tips I found helpful: keep moving if you can. Walking and exercising was very effective for me at limiting my symptoms. Particularly try to focus on strengthening your postural muscles. And find exercise that doesn’t make your symptoms worse. That can be trial and error. Second, if you have access to a qualified Physical Therapist, take advantage. They can guide you to strengthen your neck and help you use better posture, which really can help stop some headaches. When you do have a headache, try as many different pain relief methods as you can find. Experiment with heat and ice, Tens machines, etc. if you can, try to reserve the strong meds for the worst of the worst. Steroid packs can sometimes help if you are getting into a headache cycle. They have nasty side effects but for the last two years prior to my surgery were the only thing that helped my pain by reducing the inflammation and this the brain stem compression I was dealing with. Also, do your best to get plenty of rest. Chiari for me became a state of constant fatigue. I did use a prescription sleep medication, which helped. If you have room in your budget for monthly or bi-weekly
Myofascial Release massage from a specialist, consider it. Even post surgically I continue with it because it makes such a difference to how I feel. And my last tip is to track the headaches, their symptoms, intensity, and particularly their frequency. Be armed with that data to show a progression of symptoms. Seek further opinions on surgery if you feel you are getting worse. I was lucky because my neurosurgeon specialized in Chiari, and worked with me over time, helping me as I decided when to finally operate. I had my surgery almost a year ago and honestly even with some initial complications and a difficult recovery, my surgery was a tremendous success and I feel like I have my life back. Good luck! I know how difficult what you are going through is.
Thanks Rlmac. I’ll be sure to ask the rehab person about exercises to try. I’ve already given four medications, OTC anti-inflammatories, heat, and ice the opportunity to help. I hope to start massage therapy soon and may pick up a TENS unit. I just get so frustrated that I feel like I’m deteriorating but my doctors tell me I’m not because Chiari is not progressive.
Unfortunately, I had not found the different therapy and rehabilitation options that I have used or am currently using before I had decompression surgery. For myself, I think that it might have staved off some symptoms but ultimately I was in free fall deterioration of my brain function!
Exercises and therapy approached that I have mentioned in previous posts can all be used prior to surgery. For some, they may keep more pesky symptoms under control and a person can be content with that. They can also keep medication use down as I, and others, have found that medications are not terribly helpful in controlling Chiari symptoms.