Hi all,
I am 11 months post op and I still have nearly every symptom that I had before surgery. Fatigue, numbness of arms and legs, headaches.
I get through each day by taking alka seltzer cold and flu tablets twice a day. For whatever reason, they seem to help calm down my symptoms a bit.
Has anyone else experienced that effect from alka seltzer?
I am 38 years old and I have an appointment with a pain mgmt specialist this week and he feels that because I went so many years misdiagnosed with Chiari that sadly I have permanent nerve damage that cannot be repaired. Has anyone else had this diagnosis? I am totally into the pity party for myself right now...............and i hate that!! I am trying to keep upbeat
I thank anyone who responds to this :)
It means alot
Shane
I am sorry that surgery did not provide you as much relief from your symptoms that you had anticipated. Unfortunately, it is not a magic bullet. For myself, many of my neurologically-based symptoms were relieved through surgery (swallowing, articulation, occipital headache, one component of incontinence, facial numbness and I am sure others that I am missing). Many other symptoms were not resolved and I sought out other therapies to help with those. Scar management for incisional pain, nerve glides for the hand and foot numbness, vision therapy (while surgery helped here I still needed to reteach my brain how to process visual information), primitive reflexes for balance and dizziness, motor control and muscle imbalance correction for head, neck, and shoulder pain. I do a host of other exercises to help with fatigue and to improve brain function under the guidance of a specially trained physical therapist. I continue to see improvement and have not given up hope yet.
While I do have nerve damage (hand weakness) that has not resolved at this time, I am concerned that a diagnosis of "permanent nerve damage" may be premature for yourself and more indicative that the health professionals in your sphere do not have the knowledge base to assist you.
At the very least, a head ache clinic might be able to tease out the many different factors that can contribute to a sore head. Chiari need not be the only culprit. For me, I got bad headaches from restricted upper cervical vertebra. I keep them loose and am good to go!
So, no you need not despair that this is as good as it gets. You just need some direction on how to help yourself. Ask your questions away and you are welcome to contact me if you have any questions about the things that have worked for me.
Hi Shane,
Can I ask where you had your surgery? I have not had surgery yet, but have been considering it. However, if symptoms return after surgery, what is the point?
Hi Teacher,
Sorry for the delayed response. You ask an excellent question. I had my surgery done at Yale in Connecticut. My surgeon told me that after surgery my symptoms might still remain. He said that for most people the symptoms go away, but for about 10% the symptoms stay. He told me that my Chiari was gone and then sent me some specialists to treat the fatigue, numbness of arms and legs but none of them have helped. I found another doctor last month who told me as a result of the Chiari I now have permanent nerve damage that cannot be fixed and that is causing the symptoms. Now, I am a 38 year old male, perhaps you are younger? If you are in your early 20's or so, perhaps you might have better luck? I have been told that the longer you lived with Chiari, the worse the nerve damage gets.
Had i been diagnosed back in my teenage years when symptoms first hit me there is a good chance i could have avoided all of this nerve damage. As for the surgery, I will not lie to you. The first few days were pretty rough and it was a ton of pain! I recall that on day 2, I was able to get out of bed and walk to the bathroom and it took so much effort to accomplish that, it was unreal. I had my surgery last july and I am close to 1 year post op and I can say now that I am doing better.........but still not where I thought I would be.
I exercise daily and walk daily and have vowed not to let this condition rob me of my life anymore! Each day brings its struggles (I am sure that is something you can identify with)
If I were told to answer 100% honestly about the surgery and whether or not I would change my mind now? I can honestly say that I am glad I did the surgery because I have noticed a huge decrease in the pain in the back rear left of my head, and that i think is because of the surgery. While the numbness and fatigue remain.......which sucks, at least the intense headaches have decreased tremendously,
Sorry if I rambled a bit here........but I truly hope that I have provided some insights for you? And I would be more than happy to answer any other questions you might have
Talk to ya soon
Shane
I am 6 weeks post op and it seems the head symptoms are returning. It is scary; I hope not deadly. I have called doctors all week. They are treating one symptom, the tremors which have started. It is hard to deal with because I do not know what to expect. I know that I have not rested enough but what else could cause the re-occurence?