Chiari Online Support Group

4 months post surgery - symptoms more frequent


#1

Hi All,
I am four months post surgery and struggling with an increase in symptoms and am wondering if other people have had similar experiences.

Prior to decompression surgery in April, I dealt with a persistent low-grade headache most of the time. On top of that, I had issues with extreme pain when I laughed, sneezed, etc. I also couldn’t lie down for extended periods of time without getting a nasty headaches that would last for a day or so. Only on rare occasions did I have issues with moving my head too quickly, standing, or bending over. Barometric changes affected me greatly. I also had serious neck pain that had been attributed to pinched nerves in my neck.

Since the surgery, the tightness in my neck has relaxed significantly. (This is an amazing result that no one even mentioned prior to the surgery and I am very happy with.) However, many of the other symptoms persist and are actually occurring more frequently. It seems like I now get a headache 5-6 times a day when I stand up. (Again, this almost never happened before.) Bending over nearly always results in a headache. Both are also accompanied by dizziness. The instances are usually brief, but can sometimes last a bit, and they are more painful than before. I still get headaches when I sneeze, though they aren’t always as painful and they don’t seem to last as long. Most physical activity seems to cause a headache as well, which has really put a damper on my hiking this summer.

My neurosurgeon has been very unhelpful in explaining what is going on and has basically told me to continue to relax for longer. I’m going to work but I’m not hiking or doing much physical. (Even a 30 minute walk around my flat neighborhood last night gave me a headache!) My neurologist ordered an MRI at 2.5 months and nothing unusual showed up. He wants to medicate me more, which I am not thrilled with as I tend to react poorly to medication. Neither of them is able to tell me what’s going on, which is super frustrating. I certainly wasn’t expecting an increase in symptoms coming out of the surgery and it would be nice to know what’s causing them.

Has anyone else here experienced an increase in frequency of symptoms similar to this? Is this something the usually occurs and my NS just didn’t bother to tell me? Any help would be appreciated.

Thanks!
Ian


#2

Hi Ian

I hear what you are saying! I had surgery a number of years ago but still retained and gained symptoms. I have learned a tremendous amount of what works and what does not!

I do think that it is important to differentiate between symptoms that are associated with the actual physical compression of the brain stem and spinal cord and other symptoms that arise from a challenged brain, chronic pain states, and altered cervical positioning and motor control issues of the neck and shoulder. All of these situations can and do arise in conjunction with Chiari and need a different form of treatment than surgery or medications.

I have found that neurosurgeons and neurologists are not trained nor do they take the time to differentiate between symptoms and their origins and do not know what to do with a client even if they could differentiate between symptoms! I do not mean to be disparaging of these professionals as they need to be skilled in their areas of expertise - surgery and medication. If the symptoms require other treatment than these, these specialists often do not have the knowledge base to assist. Not that they are being insensitive nor incompetent, they just do not know what to do.

With that all being said, you are only 4 months post surgery. I am with you that medications do not seem the answer at this stage, but I do agree with your doctor that a type of rest could serve you well here. Prior to running around to different doctors, specialists, and others, I personally would first scale back on activity and screen use of all types. Kind of like a reduction of external stimuli that brain concussion folk do in their recovery period. You might want to research up on brain concussion rest, what that actually looks like and the symptoms that happen when a brain injured person over-does it.

I tend to put Chiarians in the brain injured category. It is amazing the different things that tax the brain. Noise, medications, conversation, lights, physical activity, math, cooking, occupation, lack of sleep… All this stimuli can affect the vulnerable Chiari brain and result in a variety of symptoms, some of which you mention.

Your MRI shows that the anatomical structures of the neck are compatible with his expectations. If the neurosurgeon does not see a need for surgery, he does not see a need for his expertise.

Once you have a better idea of your base-line health status with more rest incorporated, you will have a clearer idea of your activity tolerance and your symptoms. A lot of concussion/brain injury treatment is gradually increasing activity levels (of whatever type) while keeping below the level when symptoms begin or increase. It is a fine balance and fluctuates day to day. Very tricky to implement.

Again, once you have found a base-line, there are well-researched therapy treatments to address dizziness depending on the origin (vestibular or central processing), and head pain (central processing, muscle triggers, and motor control exercises). The key is that the client needs to become their own advocate and researcher. With complex situations like Chiari, no one specialist will have the answers.

Good luck in navigating the journey as it does not always finish with a successful surgery in the eyes of the neurosurgeon. Get a binder and start collecting information!


#3

Hi Gabby,
Thanks for this! I think there are more good ideas in your response than my doctors have given me in the last couple of months! Per your suggestion, I’ve been looking into concussion rest quite a bit. Unfortunately, everything I’ve seen talks about what to do in the initial days after the event - there’s not much about long term. However, I do see how the same ideas can be applied to what I’m dealing with. My current thought is to essentially start from scratch again. I’m going to see if I can take some time off from work or at least cur way back on my time and work from home. (My commute plays into all of this as well.) I’ll stay away from physical activity and just let things settle. I’ll slowly work my way back in and keep a journal of what I’m doing, what works, and what causes pain.

Having said all of that, are there specific resources around concussion rest that you’re thinking of? Also, you said that gained symptoms. Did they eventually disappear?

Thanks!
Ian


#4

Hi Ian

It has been some time since I looked at resources, but I do remember having the same difficulties. Concussion literature seems to think that after a month of rest the concussed brain is good to go. Even with concussion that does not work, let alone Chiari. I ended up reading book resources rather than online sources which proved to offer more depth.

You seem to be on a good track of assessing the fatiguing elements of your day. Searching under “brain injury” recovery may give more long-term strategies for managing stimuli as a brain injury is seen as more long-lasting.

In terms of gained symptoms, they included insomnia, dizziness, and a change/worsening of body pain. A family doctor told me that the insomnia was a result of the physical nature of the suboccipital decompression surgery. The manual irritation of the brain stem affected the autonomic nervous system which controls sleep. He only knew this because he himself had had a brain surgery. It resolved after 6 months or so. Not so fun of a time though. Now, that same type of insomnia only emerges when I fatigue my brain way too far.

The daily dizziness came on after surgery and stayed for 8 months until I found something that worked. The neurosurgeon, neurologist, and vestibular therapist were not helpful in determining a cause nor a solution. In a previous course manual, I came across some vestibular-driven primitive reflex exercises which had not been covered in the course. I kid you not, but I did them for two days and the dizziness was gone for 6 months. The dizziness returned, and I did them again. They came back in 9 months… you see the picture. I have these exercises listed in detail on this site though you have not mentioned this concern.

The worsening and emerging body pain included my head, neck, thoracic, left shoulder, hands and feet. The irritants became increasingly odd and the pain patterns bizarre such that, again, the medical community was irritated with my presentation and psychologists encouraged. It turns out that the problem was indeed with my brain.

My brain had faulty wiring in terms of how it related to my body in space, with touch, with movement, and with memory of activities. A good example is that looking up pre-surgery resulted in a whole host of symptoms that fellow Chiarians can list off with me. Unfortunately, my brain had a problem with letting those go.

With faulty wiring, the brain interprets stimuli as pain - pain for no good reason in my mind and in no one else’s. The research organization in Australia, the Neuro-orthopedic Institute has excellent resources and does a way better job of explaining this wonky phenomenon. Treatment is strange and takes a lot of work. I am wandering… hopefully you are not experiencing the body pain business.

A running thread throughout my post-surgical experience is that while surgery may have corrected the physical abnormality at the foramen magnum, surgery does not correct the faulty patterns the brain adopts while under physical stress. Neurosurgeons just hope that the brain automatically reboots itself. Unfortunately, that does not always happen as we see on this site. That is why it is important to differentiate between the physical symptoms correctable through surgery and those symptoms that arise from a brain trying to make sense of odd stimuli.

Good luck in finding that balance and know that there are treatments that may assist you in increasing the work aspect to levels that more approximate previous levels.


#5

Hey!
I had surgery 10 months ago and had a similar situation, thinking symptoms would just go away after about 3 months. I noticed and have been told that healing of nerve damage can take up to a year. I’ve noticed a considerable improvement between months 5 and 10 post op. Don’t lose hope yet! Reducing stress has actually helped the most. Praying for full recovery for you!


#6

Hi my name is Dee Dee, I was dizzy and off balance all my life. At age 66 I woke up and nothing worked. My surgeon said he could promise me nothing.Took 13 months for my legs to wake up. Had 2 good years played 18 holes of golf everyday. 1 year ago I went down there is no symptoms I haven’t had. I am so weak I can’t walk. I thought I had saw the worst, but now this is unbelievable. I don’t feel like a human.