Whirlwind of Doctors Once Again

Ok.  Now I have more time to write.

Starting about 3 weeks ago, the proverbial shit hit the fan again with my health.  My mouth.  For fucks sake.  It won’t end.  Near the end of May, my mouth was just hurting.  The swallowing issues returned.  The burning mouth.  Everything is coming back again.

Since I knew how things were going to be, and that I am completely out of time at work, I decided to go back on short term disability to figure this shit out.  What a fucking nightmare this entire experience has been.

Starting back at the end of May, ER visit #3 happens.  However, I got a Dr. that was willing to listen, and who could visually see what was going on with the left side of my jaw.  It’s swollen.  Puffed out more prominently than the right.  So, once again, to the donut of truth.  Finally, we found something.  My left parotid gland is swollen.  Badly.  So back on antibiotics we go, and I could finally go back to the ENT with evidence of something.  As of late, its been hard communicating my issues to my ENT.  Perhaps maybe just missed communication, or lack of.  My ENT’s NP (different one than usual) took a look at the scan, and confirmed it.  Sialadenitis.  Inflammation of my parotid is what she saw.  So back on antibiotics and steroids I go.

As that week went on, I wasn’t feeling good.  My head just hurt.  Aches & pains.  I felt sick to my stomach constantly.  I called into my ENT’s office for advice, however, my ENT was very different.  “This is beyond my help, there is nothing else I can do for you”.  I was shocked.  I didn’t know what to do at this point.  My throat was on fire.  My face was on fire.  The lump on the left side of my face just fucking hurt.  Everything hurt.  So I took a valium, and just calmed down.  I still felt like crap.

After that “episode”, I went back to my GP for help.  Earlier that month we were working on my heart issues, which turned out that we found no issues (thank god).  He took a look, and got concerned.  At this point he ordered another CT of my head (UGH).  Same results.  My parotid is enlarged, inflamed.  Whatever you want to call it.  It’s still a problem.  Over that weekend I still wasn’t feeling better, and work was really starting to get hard to balance.

So I decided to go back on short term.  I am out of vacation time, and sick time.  I burned all of that back in March and April for the tumor.  I did this so that I could focus all of my efforts on just getting to the bottom of this pain or whatever the fuck this is.  Infection.  Immune system going batshit… who knows at this point. 

I met with my GP again to fill out all the paperwork.  At this point he was 100% on board with what was going on.  He understood that I am in a severe amount of pain.  And I was.  It’s all I’ve known for quite some time.  I started to utilize him as the central point of communication between my ENT, Immunologist, and Oral Surgeon. 

The next day the pain was worsening in the upper left of my mouth.  It’s where the last tooth on the left side of my mouth was.  So I contacted my dentist to take a panorex of my mouth.  Sure enough, there was yet another infection under and to the side of that tooth.  We contacted all of the oral surgeons, however, nobody was available to pull the tooth.  So I went back home and just tried to relax.  The pulsing feeling returned.  It really is the worst when there is nothing you can do for the pain, except just deal with it.  My usual oral surgeon contacted me, and got me slipped in right before his vacation.  THANK GOD.  As usual, that appointment went really quick.  Got numbed up, and out it came.  Again, infection underneath and all around the tooth.  I was relieved it was out.  The pressure was gone out of my head.  It was a relief on many levels, but again, here we are again, pulling more teeth out.  I thanked him for getting me in, and I was on my way home.

The next day the short term company called to start working on my claim.  I answered a bajillion questions, but at this point, all of my medical documentation is on point.  I can basically produce any document they need.  It does make it easier.  I gave them all the physicians that were taking care of me, their contact info and all that.  Then they informed me that my FMLA is going to run out in a week, and that I need to establish an ADA request (Americans with Disabilities Accomodation) to basically become “protected”.  My immune disorder alone is enough to qualify, however, I wanted to make sure everything was clear that since my immune disorder, I get crazy assed infections, and the latest thing with the parotid was no joke.  So with that out of the way, I crashed hard for the rest of the day.  I was just exhausted.  The pain continued.  Post-extraction pain is never fun, however, I am on a fucking mission at this point to remove any tooth my old dentist touched.  Everything that is not natural MUST go.  At this point, its only 4 teeth left, 1 on the upper, 3 on the lower.

More towards mid week, I still wasn’t feeling good, so I returned to my GP to drop off the paperwork for the short term stuff, as well as get things figured out with my parotid.  I gave him the contact information for my ENT’s office, and he left the room to talk to them.  He returned back wanting to CT me again, and I started to push back.  I said that I think we have enough CT’s of my head, lets take a look using an ultrasound.  He agreed.  I’ve already had enough radiation in my head the past 2 years to last me a fucking lifetime.  He changed the antibiotics I was on back to Clindamycin, however, maximum dose per day this time (before it was only 600mg/day).  Shortly afterwards, I was escorted by his nursing staff across the street to see radiology.  I was met by a student, and the tech.  The student started off by taking a few images, however, she started to look concerned and looked at the tech, the tech moved over and replaced the student and started taking several images.  Well maybe this might be something.  Maybe we have finally gotten to the bottom of things.  It took about 30 minutes total, and I was on my way home.  About 3 hours afterwards, the results are in.  My parotid definitely has an infection.  No inflammation, no Sjogrens (thank god).  My GP contacted my ENT and requested that he see me (great, this conversation is going to be awkward as hell).

At the end of the week, things still hurt.  Pain sucks, but at this point, I am just used to it.  I reached out to my immunologist to get some guidance on what the best course of action is, however, he said that I am on the right path and to just stay the course.  He did however want me to consult with infectious disease.  My other oral surgeon had mentioned Actinomycosis.  Which is a very hard to get rid of infection that takes a long time to happen.  Maybe that’s the problem.  I just have some nasty hard to get rid of bug that is just going to take time.  He sent out a referral to a place here, however, when I called them they basically said “We only take patients that already have a diagnosis”.  Jesus christ people, I need help.

On that Saturday, the lower portion of my jaw just started to ache and burn.  The pulsing started up again, another tooth.  Problem, its Saturday.  There are 2 “emergency” dentist places here, I called them both, one was fully booked, the other was wide open.  The wife & I jumped in the car and headed over.  I filled out all the paperwork, and I was back in the chair getting yet another tooth pulled.  The lidocane went in, relief.  I knew something was wrong when the lidocane makes things feel better.  The staff was pleasant, and understanding.  Tooth came out with no problems.  More relief. 

The following week frustration starts to set in.  I messaged my GP over the weekend about the Infectious Disease response.  So then I decided to give UC Health another shot at this.  My GP got me into ID the next day.  I was surprised.  When I called them Monday to setup an appointment, the receptionist put me 3 weeks out, I guess referrals make all the difference.

Meeting with infectious disease was like every other doctor visit I’ve had.  Go over all my medical history.  It gets old.  It’s a very long, crappy story.  When I started to mention Actinomycosis, the ID Dr. started to perk up somewhat.  I mentioned that my entire left side of my face has been like this for awhile, and that I would like to rule it out.  She ordered labs, and you guessed it, another CT of my face, however, this would specifically be looking at my facial bones (with contrast… yay).  As I drove home, the lab results came in, I’ve been on antibiotics so I wasn’t expecting anything crazy… and that’s what the results were, everything was normal.

As this past week has dragged on, I’ll be honest, I am wiped.  Drained.  I am running on empty.  It’s always the last week leading up to my next IVIg infusion that I am just done.  I pushed through it.  This past week has been extremely busy with seeing tons of doctors.  I was also due for a refill from Pain Management, as well as a sit down talk with my immunologist.  Earlier in the week I sent him the short term paperwork to be filled out, and he got that sorted.  Today was seeing my ENT.  I was somewhat dreading the appointment based on what he told me earlier in the past few weeks.  The appointment went really well.  His NP started off by getting current on what has been done since I last saw them.  She disappeared, and he returned.  He warmly greeted me.  I felt somewhat relieved.  First order of business was to clear out whatever gunk I had in my head from the surgery, and to my surprise, there was a lot.  He said “This is primarily why your head is hurting”.  He pulled out so much crap.  I watched on the screen as he pulled more and more and more out.  It was almost like it wouldn’t stop.  Booger after booger.  Yes, it does hurt.  After cleaning me out, he started to feel the parotid.  After the evaluation, he sat down and spoke straight to me.  It’s his belief that the pain I am experiencing is due to the damage the tumor has caused over the years with the acne and the infections in my mouth.  This has led to damage of my nerves in my face.  My oral surgeon did touch on this, but I didn’t want to believe it.  My ENT was deeply concerned about the pain, and was hesitant to point the finger at my parotid gland.

The game plan for the next few weeks is to try another medication which helps with trigeminal Nerve issues.  The trigeminal nerve sits at your jaw, and breaks out into several different branches throughout your face.  My ENT thinks that the nerve is damaged based on all the crap I’ve had to deal with.  He also switched up my antibiotics back to Cefdin, and more Dexamethasone for another week in the event that I do have something going on with the parotid.  The new medication is called Tegretol.  I am to start taking it at night for the first week, then twice a day.  Should I not tolerate it very well, he can switch me to a different medication.  Should my symptoms not resolve by the end of June, he will order an MRI to take a look at my parotid gland and the trigeminal nerve of the left side of my face to inspect the damage.

So at this point, I’m willing to try this.  I mean, if it doesn’t work, we rule something out and keep going.  I just wish this was over, and I could resume “life” again.  Going to doctors daily has gotten old.  As much as I like seeing them, I would like to spend my time elsewhere.

At the end of today, today was infusion day.  Finally.  My pick-me-up.  The infusion went fine with no issues.  The only thing that was different, is that they upped my amount of IVIg to 50g (was at 40g).  My immunologist made the changes the day prior just based on everything that was going on, and felt that it wouldn’t hurt at this point.  No bad side effects this time, and man, its nice to have energy again.  I don’t know what I would do without my IVIg.  That stuff really does help.