Anyone have crazy immune system/skin issues after surgery/craniotomy? My body has recovered well overall, but my immune system and digestive system have taken a beating. My friend works in the medical field and says it’s normal for TBI patients to have multi-system issues because the brain is central for most activity. I just need to know I’m not crazy after all this time. I’m 7 months post-surgery.
I was invited to this thread as I have some experience in this area though I am not a AVM patient so here goes:
Not sure whether our AVM ruptured or not, but I’m going to assume that it at there very least caused some injury. It depends on the issues whether it is specifically the brain or not. Brain Injury is well known to cause a suppression of the immune system, but the effect there is in the order of infection. Gut issues skin irritation/breakouts are usually the result of inflammatory processes gone wild - in short an over-active immune system often actually an auto-immune system which is not directly related to brain tissue Damage.
BUT you are not crazy you very well could be having all of these issues as a result of your injury. There was a study recently completed that indicates that about half of all Brain Injury patients show evidence of injury to blood vessels in the meninges. Of course with craniotomy the meninges are effected (you to cut through it_ Unlike brain tissue that can not fix itself, the meninges can. The immune system goes into overdrive to do so. The molecule matrix metalloproteinase 2 (Mmp2) is produced in abundance.
The activity of matrix metallopeptidase 2 appears to be important for a variety of body functions. These include the breakdown of the uterine lining (endometrium) during menstruation, formation and growth of new blood vessels, repair of damaged tissues, and inflammation. Matrix metallopeptidase 2 also plays a role in bone remodeling, which is a normal process in which old bone is broken down and new bone is created to replace it as well as break down an replacing epithelium tissue. Most of us think of the epithelium as our outer sking BUT it is also lining the alimentary canal and other hollow structures. (the Gut)
So certainly it can be happening but is generally temporary (Temporary 6 - 12 months) but if the original Brain Injury damaged the Meninges and the craniotomy damaged the meninges it could be much longer. It can take months for inflammation in the brain to fully resolve and the repair process to begin.
So to sum it all up. no you are not crazy these things are indeed happening, it should get better, and it COULD be a sign there is a more healing going on elsewhere and good things lie ahead.
That was me
@ModSupport If Merl is around, he might add to the conversation.
No, you’re not crazy and that is despite what some medicos may allude to. Often their theory is ‘we operated, we fixed’ and sure, the surgery may have dealt with the AVM, but in doing so it can unleash a whole other range of symptoms. I often explain it like this:
"if you opened your computer case and threw in a handful of alfoil flakes you’d have short circuits all over the system and that’s if your computer ever worked properly again. Our brains are just like the CPU in your computer. The dr’s have opened your skull, disturbed the fine circuitry inside and this can cause all sorts of ‘short circuits’/odd symptoms ".
I have required 6 neurosurgeries and each one has had it’s own effects. After the first operation my symptoms were unbelievable. My temperature regulation was a mess, I’d sweat when I got cold and the heat was simply unbearable. My hearing was a mess, my sight was affected and my balance was awful. I spoke to the surgeon about this which he basically discredited as an overactive imagination on my behalf, but this was all very real. I queried him and he got VERY anti, like how dare I question him. “Well, that can’t be happening. I didn’t go anywhere near those brain structures…” but these things were happening and were very real whether he wanted to acknowledge it or not. Sometimes I think they make us question ourselves so we don’t question them, like “it’s nothing we’ve done. So it must be YOU…” like we choose to be in this predicament.
When it comes to neurosurgery 7 months is still early days in your recovery. I am now 7yrs on from my last neurosurgical operation and still today I’m symptomatic, so I have to agree with your friend “…it’s normal for TBI patients to have multi-system issues…” Surgery has altered blood flow, brain chemicals and brain circuitry. There simply MUST be a flow on effect from this. For some people this can be minimal and manageable, but for others (Me) it’s been one hell of a rollercoaster. I have weird symptoms every day, some days it’s manageable but then other days it’s like 'Stop the world, I want to get off this ride…" I simply never can tell what today will present.
So again, no, your not crazy (or if you are, you’re just as crazy as the rest of us )
Merl from the Modsupport Team
OMGOSH THANK YOU!!! I have been having the most random issues now that I am adjusting to my “new normal.” Every time I get used to a symptom, a random new one pops up that never occured before. I feel like I’ve been reborn into someone else’s body in good ways and bad. No more migraines for me (less painful headaches when I do have them), but a HOST of other things that make it hard to tell if it’s healing-related, medication-related, or an inflammatory response to infection(s). I feel like I’m in a ‘Where’s Waldo?’ book trying to figure out where the issue is. Lol. Smh. The doctors give me a possible reason, and then we’re back to square one. The only thing that makes sense is my rupture and surgery. I had NONE of these weird issues beforehand. Not complaining too much, glad to be alive, but I’d like a decent night’s sleep without all the extra SUPER RANDOM symptoms. Thanks!!!
Thank you!!! I just needed to know that I’m not just creating things in my head (which is a funny looking one now after that SUPERB haircut they gave me)…my surgeon was amazing, and even followups with him have gone well, but I kinda want them to hang the appropriate sign on me…“UNDER CONSTRUCTION”, not “THERE, I FIXED IT.”
What a ride!!!
@reallygeekin anytime we have trauma such as surgery it can cause an issue. It sounds like maybe Mast Cell issues which can impact your skin, gut or lungs or a combo - I have Ehlers Danlos and Mast cell issues are very common in us. This happened to my younger sister who also has Ehlers Danlos after she got the flesh eating virus and had to some serious surgeries. She still has something called Mast Cell Activation. Many drs dont know how to test for it and it can be hard. Dr Anne Maitland is one of the top drs on this subject and she treats with doxepin and combo of zyrtec - this is what works for my sister. I had a bad mast cell gut reaction after a bad allergic reaction to a shot in my neck that lasted 8 months. One thing that can calm down your skin in the meantime is a putting 1/4 cup of bleach in a warm bath for 10 minutes- My sister does this a 2x times a week before bed when her skin is bad but being on doxepin has really helped her. Oh and for gut issues they say to take prilosec for two weeks- I had to slowly build up my good gut flora. I drank a lot of mineral water and electrolytes. I still cant eat lettuce for some reason and its been 13 months. Dr Joshua Milner has being doing research on this as well and you can find a free video of his and a few videos of Dr Maitland on this site https://www.chronicpainpartners.com/webinar/webinar-update-on-tryptase-research/
@angela4 Exactly we all have mast cell activation with injury or illness (metalloproteinase 2 (Mmp2)) that I mentioned earlier is one of them. The problem is when those mast cells decide to fire off on their own.
Commercial Messsage here… We have a mast cell/mastocytosis group, led by a couple of amazing individuals who have actually themselves become sought after resources both by research and industry. with over 7,000 members its a tremendous research/support option. You and your sister may want to drop by:
Yep! My AVM ruptured 2 years ago and I’m still seeing doctors as they try to figure out what’s wrong. I get sick then I’m fine and my organs randomly spaz… it’s this ongoing battle with my immune system. I’ve just accepted it at this point.