POST-SURGICAL SKULL PAIN
A CASE HISTORY
I had skull reconstruction surgery in 2015. They removed part of my skull on the left side and filleted it in half. 1/2 was replaced back on the left side of my head while the other half was placed on my right side of my head where skull was missing initially due to an epidermoid cyst which was removed in 2012, got infected and caused two additional surgeries, 1 in 2013 to remove cranioplasty and wire mesh, and in 2014 I got a second opinion and found out that I had infected material that was missed along with parts of my own skull that had been dead and also left in my head causing the incision from 2013 not to close up all the way. I would be dead if I’d had not gotten that second opinion. The surgery in 2014 involved removing Group B strep and staph infection from my head and had to have a PICC line for six weeks.
The first three surgeries were considered brain surgeries and I recovered from them thankfully. This last surgery however is different from the rest. I was recovering okay for a few months after my last surgery and then it started to change. I noticed that I was very very tense in my neck and upper shoulders and very tender and sore around my head in general I thought I was just having a lot of stress on a particular day but it’s never gone away since.
There is a crunchy sound on the left side of my head it doesn’t necessarily hurt but it is terrifying because I have no idea except for that it’s not normal. I have little bumps around my head here and there and it seems like when I’m really tense my head goes from round to really bumpy and it just seems like it changes shape. I have noticed that anytime I’m trying to focus on any one thing or sustained a position while focusing on any one thing that that’s when the cinder block tightening feeling starts and the area where tightening start changes on a daily basis leaving me completely unable to locate any root cause.
I’ve definitely had follow-ups on this and I’ve took Flexeril and I’ve had CT scans done. Everything shows up as fine and the flexeril sometimes made me feel worse at points until I was so exhausted and wanted to give up so I just went to sleep because not moving at all was the only thing I could do for relief. It sometimes gets that bad but not as much as it used to I’ve been really really trying hard to get on the right track on my own. since I’ve been taking magnesium, turmeric, and vitamin D I’ve been feeling a little bit better however it just seems like it’s more of a me coming to terms with reality in my situation and now in order to survive it’s more of me fighting with my own mind because I’m consumed with this taking over my life it seems like but then I can just relax and meditate and I’ll be ok.
I am really tired of not doing anything just to feel okay. It seems like anytime I put focus on something, everything just gets really messed up. There have been a few times, and those times are becoming a little more frequent, where I’ve let go of some of that fear from the feelings of tension and moved my head around anyway and I’ll hear fluid moving around, and things seem to let go in a sense and I get really hopeful, but it never lasts. It’s just that when it gets so tense, I have a natural flight or fight reaction to move my head and shoulders around and my shoulders and try to figure out how to move an order for me to move if that makes any sense. I always end up with more tension with movement I just don’t get it it’s like things are trying to stop me from moving around by causing the symptoms of desperate attempts for free range of movement.
I know that I need to be able to move freely and that something is causing me not to be able to do so but I also know that me gaining the ability to move involves me moving but moving causes restrictions. After reading up on this webpage, I just know that everything you have stated is a home run as far as matching up to my situation. I mean come on what else could it be? I would really like your input as I found that being educated and gaining more knowledge in general has help me put a little bit of Peace back in my mind allowing me to have things to refer to when a certain physical symptoms starts appearing. I am just really striving for the quality of life or at least some of the quality of life I used to have. Sorry for the horrible grammar I am using talk to text as it is easier on my head and neck than looking down and trying to type. I look forward to hearing from you and we’ll be sure to check my inbox frequently. Thank you for your time.
Epidermoid Cysts are benign cysts that go by a number of different names (Epidermal Inclusion Cysts, Infundibular Cysts, Sebaceous Cysts, Keratin Cysts, Epithelial Cysts, etc, etc). These rarely cause pain and are usually self-limiting, meaning they'll resolve on their own. They typically contain a COTTAGE CHEESY LOOKING SUBSTANCE (keratin) that frequently has the distinctive smell of sweaty feet. At times, however, they can turn CANCEROUS or become infected and cause problems.
Julie ended up having a surgery to remove the cyst, another surgery to remove the mesh that was installed in the first surgery, and then another two surgeries to remove leftover decaying tissue, and infection (STAPH & STREP) growing inside of her head, and then deal with the aftermath. It sounds like the result was probably a month and a half of hardcore antibiotics. While certainly necessary in cases like these, the resultant DYSBIOSIS can cause any number of hardcore side effects (HERE), with the whole mess driving large amounts of INFLAMMATION (not to mention the fact that head injuries are associated with autoimmunity --- HERE).
Remember that inflammation always leads to the scar tissue that the medical community typically refers to as fibrosis (HERE). When this fibrosis attacks the CERVICAL FASCIA or CRANIAL GALENA APONEUROSIS (the fasica on the skull), the result is likely to be microscopic scarring, which could certainly cause either or both NECK PAIN and SKULL PAIN (it sounds like Julie is probably dealing with LEVATOR TRIGGER POINTS as well).
The sounds that adhesed fascia makes on the head (CREEP / CREPITUS) is not really "normal" but could probably be considered common for what she has been through. As far as the "tightening" is concerned, just remember that one of the many ways that scar tissue is different from normal tissue has to do with the fact that it does not move as freely (HERE or HERE). In other words it can act in a TETHERING FASHION, sort of like a HAIR BALL as compared to well-combed hair, relentlessly pulling the surrounding tissues (nerves included) every minute of every day.
I cannot say that I am surprised that CT didn't show anything since fascia is extremely difficult to image using standard technology (HERE), although there is new technology that might possibly do the job (HERE -- great stuff but I have real doubts about its ability to image skull fascia). As for the flexeril; MUSCLE RELAXERS --- many of which are actually "HYPNOTICS" --- have a myriad of common side effects, including large numbers of premature deaths (see link). The "desperation" and "fight or flight" responses Julie is having are indicative of SYMPATHETIC DOMINANCE, which is common in CHRONIC PAIN situations. The result is people who are perpetually exhausted, but frequently unable to sleep.
The real question here is whether her pain is still related to an actual mechanical dysfunction (SCAR TISSUE), or has become "CENTRALIZED" (Central Sensitization) --- locked into the brain. The truth is that it can be extremely hard to tell the difference, which is why as long as there are not contraindications present (HERE), I will frequently examine and then treat people in hopes that they are not dealing with CS. The biggest problem is that no matter what other changes Julie makes, if there are significant amounts of FASCIAL ADHESION and scar tissue present in her neck and/or skull, it's likely that no amount of LIFESTYLE CHANGES are going to solve the problem until said tissue is dealt with.
Because people will invariably ask whether or not I can help someone in this situation, about the best I can answer is "I don't know". I have treated lots of folks who have skull pain over the years (NOT TO BE CONFUSED WITH HEADACHES), and the best I can do is say that someone in this situation would know after their initial visit whether what I do will be effective for them or not. I wish you well with your situation Julie and pray that this post helps you in some form or fashion.