Hi friends – Some background: I am 22, I have Chiari Malformation 1, 19 mm herniation. I had decompression surgery in December of 2015, so I’m almost 3 years post-op, but since surgery my symptoms have come back on and off. Right now, my main issues are the following:
- I have excruciating Valsalva Headaches (or cough headaches) caused by “exertion” (I say that in quotes because exertion is relative; it’s not like I’m going for a run or anything extreme) - coughing, singing, shouting, laughing, going to the bathroom, bending down, standing up from lying down, lifting something heavy, etc. - they are debilitating, feel like ice picks in my temples and the top of my neck/base of my head, and make me extremely nauseous
- I also have numbness, pins and needles, weakness, and pain in my hands that spreads up into my elbows
- I also have TMJ (unofficially, not diagnosed), nystagmus, an extremely sensitive scar from surgery (I’m 4’11" so hugging people and having them wrap their heads around my neck is extremely painful), waves of heat wash over my body, fatigue/feeling exhausted and overwhelmed after simple tasks, and back pain
Here is my question to all of you: If you experience any of these symptoms, but MOST IMPORTANTLY the Valsalva Headaches, have you or your doctors found any treatments to prevent them successfully? My decompression surgery did not remove any of my skull, so if you had surgery where they put in a patch or even a shunt to release some CSF, please let me know. In my research it seems like there hasn’t been much treatment, so I want to see if anyone has found anything that works for them individually.
Thanks for reading and thanks in advance for your help! Sending healing & positive vibes to everyone!
I have found a few things that work
My head pain may not be the same as yours but I have found that graded motor imagery exercises have greatly helped with head pain, pain with movement, pressure. I am doing motor control exercises as well to normalize my neck movements after such a longtime of holding my head in static positions to avoid pain.
Scar management techniques worked excellently for my sensitive scar. Given the length of time and other wonky things with your head, the graded motor imagery exercises might need to come first before you can touch your incision site. I have posted about scar management previously.
Hand pain and tingling - I also used the graded motor imagery exercises - not finished yet as other things get in the way! and also nerve glides and motor control exercises along the neck and upper extremities. I am still sensitive but have improved greatly.
Of course, TMJ pain can be easily resolved with a skilled physical therapist.
No need to suffer as there are solutions out there. They take time, commitment, and patience. Good luck in working on it, sorry, no magic pill!
Hey purplesparklewriter7,
My condition is not chiari related but I’ve had 6 neurosurgeries, including a shunt and craniotomy. I also have to deal with ‘cough headaches’ and as for a sneeze… …ohh hell… sneezing drops me to my knees, like my eyeballs are about to explode from my skull. ‘Excruciating’ just doesn’t even come close to explaining it and can be the trigger for an all day headache. I too have all of the same symptoms from jaw pain, pins and needles to heat/cold issues etc. My last surgery was 5yrs ago (2013) and although I was told things would get better, I’ve come to accept that this is about as good as things are going to get, so now I have to manage it all, which is not ‘fun’. My symptoms fluctuate SO MUCH, trying to plan ‘life’ has become damn near impossible, I never know what will come nor when it will come.
As for treatment, the only thing that has made a difference has been time. I wouldn’t say symptoms have become less, but more that I have learnt over time what occurs, when it occurs and how best to cope. As I’ve said to others before “Some days I can jump a 10 storey building in a single bound, but the following day I can be bedbound” I can never tell. I have been trialled on all sorts of meds but none have been the key and the side effects of others have been nothing short of devastating. My main management meds have been opiate based, which has their own side effects, but for me, the opiates have been the lesser of all evils.
As for the scarring, over time they have become less sensitive. Initially though they were super sensitive. It was explained to me that the nerves had been cut, but when the skin was pulled together and stapled those nerve endings were exposed along the entire incision line. Overtime that sensitivity has lessened, but it took years for it to become my new ‘normal’ (if you can ever call it ‘normal’).
Has my treatment worked? Well, that depends on who you speak to. For the medicos, yes. The shunt is draining the fluid. The natural fluid drain, the aqueduct, is still blocked despite the numerous surgeries. For the dr’s there has been a medical outcome, but for me the outcome has not resolved the issues. In fact I’d say the medical outcome has in fact produced even more symptoms, symptoms that the medicos seem reluctant to acknowledge as they seem to have very little in the way of answers, which to say is disappointing would be a MASSIVE understatement.
So, that’s how I’d try to answer your questions above. Don’t get me wrong here, I do not have all the answers, not at all, but this has been my personal neurological experience/journey and I believe this is now my ongoing battle/route. I have to manage the best way I can for me and I strongly believe that those of us travelling through any neurological diagnosis have to find our own “Best way”.
Merl from the Moderator Support Team
Have you had a recent full spinal MRI to look for tethering or a syrinx?
Hello. I am sorry that you are going through all of this and having so much pain. I had decompression surgery Oct 2014- craniectomy (with patch) & laminectomy. I have Chiari with syrinx.
Some of your symptoms sound similar to mine but before the surgery. I had excruciating pain-instant tears- when I sneezed. (I learned to hold them) and intense shoulder and hand pain, specifically pointer and thumb. The hand pain was what prompted me to have the MRI as I had tried everything else. The headaches were very bad as well. I was also having frequent migraines, but they said they were unrelated.
After the surgery, the sneeze headaches went away immediately and the hand pain is much better but still there. The migraines went away for a whole year but came back, though they are fairly manageable. I am functioning almost like a normal person, as I say, but I have many things that I can’t do and have to be careful about.
Please let me know if you have any questions. Also, I noticed in your profile that you live close to me. I can talk to you on phone if you’d like. You can send me a message, if so.
I also had very bad hand pain (R>L) before surgery for a period of a couple of years which gradually improved but did not go away. Repetitive or different activities still bothered my hands. I had surgery, and my hands eventually started to worsen again to the point where I knew that I would pay a price if I did new activities, or even more of the old ones.
I eventually found out that my brain did not relate well to my hands, did not always know which was my right or left, nor did my brain know where my hands were, nor what my hands were feeling. I also found out that when the brain does not understand stimuli coming from the body it tends to perceive the stimuli as pain. I knew that lightly touching a screen, mending a pair of pants, or playing something as short as a scale on the piano should not hurt my hands - but it did. This pattern of pain made no sense to me and sent doctors in tizzy to get me off to see a psychologist. i finally found the help that I needed.
I now am on a course of physical therapy called “graded motor imagery” for my hands. It is from a physical therapy research outfit in Australia called the Neuro-orthopedic Institute. They research pain that is wonky and makes no sense. They have excellent books and an app for the first stages of the graded motor imagery exercises.
I have not found a physical therapist to help me on the exercise regime and have had to go it on my own. I am a PT so have taken the courses and understand what I am doing. Slow and steady has been necessary, but I have not always complied!
The programme starts with left-right discrimination, then imagining the body part, imagining the hand doing various activities, then onto mirror therapy. This course is used (and successfully researched) with phantom limb pain and complex regional pain syndrome. All I know is that Chiari messed up my brain and my brain is only doing the best that it can. It now needs some help to reconfigure its association with my hands and other body parts.
Give a shout if you have any questions
I am in a similar position. Almost 3 years list decompression surgery. I did have part of skull removed. Starting to get more migraines again. Not so much the typical chiari one’s, lime you discrib. I ask the same question about a MRI of the cervical spine. When my symptoms returned the MRI showed 2 MORE blown out disks. 8 years ago I had 2 level disk fusion, hoping that would fix the chiari symptoms ( at that time I did not know I had chisri), fusion solved hand issue only. I have found a wonderful pain management doctor. I dont like opioid or pills in general, but I have been on, antiinflamitor (take regular), long term muscle relaxer (as needed), pain pill as needed. And I feel more human. He is willing to try nerve block or anything for me. I go back go a spin surgeon next month for his reading of MRI. My chiari surgeon would not see me, thinking it does not have anything to do with chiari. The good thing is spine surgeon is chiari brain surgeon’s brother in same practice.
Guess in short, get new MRI to find out what the underlying cause is. Remember our brains are special. There maybe something else going on but the brain is remembering the chiari. Also no removal of skull did not give your brain any extra room to move, so it may be getting caught again.
Good luck. I will respond after spine apt if they suggest trying anything else.