I am almost 2 years post surgery (29 may). Just wondering if anyone has the same experience as me. For most part has been great. BUT at times I get a sensation that the surgery area feels “bruised” again. Feels like someone is pulling my hair in that area. Then my memory, thoughts, and speach goes away just like before surgery. Also where drain tube was gets very sensitive.
All these occured after surgery but cleared up finally about 8 months after. I’ve gotten these “episodes” On and off but this last one lasted for 2 weeks. They seem to be getting worse. Just curios if this is normal or should be expected for rest of life or there could be an issue that should be looked into? Has anyone been told minor strokes could be side effects also? Had one 1 week after surgery but did not do any permant damage. Again is this another side effect?
I do not believe that it is “normal” but it sounds similar to my experience and is simply a side-effect or consequence of having Chiari and the surgery. By all means double check with your doctor for any medical concerns that they might be able to address. Other wise I can list the things that I have done to help the head pain and the cognitive issues. I am not perfect with the cognitive but have improved greatly and still have more to do so I remain hopeful on further improvements.
- Scar management for any incision areas.
- Motor control
- Neurodynamic exercises for neck and upper limb
- Neuro-orthopedic Institute graded motor imagery app for the neck.
Just because tissues have healed does not mean that pain goes away. Brains are wonderfully complex organs that allow us to do many marvelous things but do have weaknesses that tend to be revealed by Chiari, surgery, and the physical stressors that come with both. The brain can develop faulty ways of processing sensory imput or even our thoughts!
I have been told to see a psychologist, a psychiatrist, take nasty meds for pain and for vestibular migraines. I have found that what I listed above has worked wonders even after a time period when doctors said I would see no further improvements.
If you are interested I could explain things further or point out what the next step would look like.
Good luck with sorting it out
PS pain meds for what you are describing tend not to be terribly effective!
Dear “Brainless,”
I like your screen-name! Very “Chairian!” I am 6 years post-surgery as of today - and permanently seem to have to straddle super-good days with super-bad ones. I get three totally functional days - but every fourth day, ALL my Chiari symptoms come back and I am a brain-dead, pain-filled, vegetable on the couch for 24 hours. Then, all the “Chiari Ick” fades away, and I’m back on-line again. Everyone asks me why my re-occurring Chiari symptoms come back on such a regular basis. I can’t answer - but guess it’s 'cuz of the brain stem just “Remembering” old injuries. 
“Phantom Pains…” seems to be the best way I can explain an otherwise healed Chiari site that still says “OUCH!” I like how jazzypants explains it; that “the brain has faulty ways of processing sensory input…”
Right now, I’m in the middle of freaking out about losing total control over being able to manage that “faulty input” -or- “fake pain” as I often describe it. For the last five years, I was doing quite well being pain-free on my 3-good functional days with a very small dose of amitriptilyne. (like… 3 to 5mg is all) It’s a very old antidepressant that they have since discovered works well for stopping nerve pain. Amitriptilyne has never been able to stop my every-4th-day mega-bad symptom day, but it has very much stopped non-stop nerve pain issues on my good days. 
I just found out this week that the new pharmacy that my SSD supplement provider is networked into does NOT carry the brand of Amitriptilne that works well with me. I’m freaking out. It means phasing the amitrip out of my system and phasing into something else… maybe noritriptelyne (same variety of antidepressant - has worked well in the past, although not quite as well as amitirp) These kinds of nerve-pain blockers take WEEKS to become effective. It’s agony. I’m already moaning and groaning with nerve torment as I’m phasing out the amitrip. (Trying to think of something to stop-gap the pain until noritrip builds up in my system 6 weeks from now. Oh, good grief! 
OR, should I say, “Oh, wretched grief!”
But, do take courage, Brainless! You can possibly live pain-free. If your CNS is still making “fake pain” and saying “ouch, ouch, ouch,” for no good reason, there are some non-narcotic nerve-pain blockers that can be effective - if you find the right one that works with your body chemistry. I’ve read of several on this website. If you’re able to take a dose that’s small enough to do the job, you won’t get snockered with too many icky side-effects. (And for some people, the side effects fade away after time. Most of mine did - with the exception of slight dry-mouth issues.)
-beth
Jazzy I would love it if you could explain some these. I have not found a
therapist in my are that has any specialty with the head or brain. I wish
you were in my area. You gave me things to try right after surgery it
really helped. I look forward to your response.
Thanks for the info. It is nice to know others are out there with same
problems. I tend to feel like no one understands. As for meds I’m not big
on using them. I have found anti inflammatory are wonderful and something
for muscle spasms work.
Good luck with the health care stuff. If politicians just understood there
are people out here that need the meds just so we can live a “normal” life
and aren’t abusing them you wouldn’t be dealing with the changes. Hang in
there. Hope all works out.
You bet! My first place to start would be the scar management. Let me know if you have given this a shot and what you have done if you have. I lean towards addressing tissue troubles before going on to wonky brain stuff! Keep in touch as there is much to be done even just through the computer.
All I have done was the “touch” massage therapy right after surgery. The only thing with scar is itching if it stays wet/ damp. About 1/2 inch above where drain tube was feels bruised at times. Crown of head feels like hair is being pulled also only at times. It’s when both these happen at same time that I notice my thoughts and sharpness get really bad. That’s when I become tired fast also. I have times when i feel NORMAL which is AWESOME😁.
Any guidenst you can offer is welcomed.
I am going to start another topic, “scar management” for you to follow.