Chris’s Story

Site created on May 9, 2017

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  Chris' story starts June 2016 at the end of our Las Vegas vacation.  It was a great trip but the last couple of days Chris started feeling like he was a little dizzy and felt like he was coming down with a cold.   By the time we returned to Wichita he really felt as though he had a sinus infection and possibly an ear infection with pretty bad dizziness.  Went to see PCP,  diagnosed with some fluid in his ears and a sinus infection.  Started on steroids and Levaquin.  Sinus infection cleared but dizziness just continued to get worse.   6 days later he was so dizzy that he was falling down a lot, ended up in the ER due to a fall and hitting his head.  CT scan of head was negative, ER doctor diagnosed him with Benign Positional Vertigo and sent us home.  He was set up to see ENT.  He also had eye movements by this point that looked like Nystagmus which can go along with the vertigo.  After seeing the ENT she tried a maneuver to move the crystals in his ears to help with the vertigo.  It was unsuccessful.  He had an MRI of the brain, hearing tests and another visit with the ENT.  They gave him some meds to try and help and he continued to have severe dizziness, difficulty walking and the eye movements.  This went on for a few more weeks.  He got slightly better for a few days.  Then he got worse again.  By July 22 he went in for another outpatient test sceduled by the ENT which was a VNG, this test was to record the eye movements with position changes to help diagnose the vertigo.  Well within just a couple of minutes of starting the test the tech left the room and brought 2 more people in.  They were all just in awe of what they were seeing.  And they were all in agreement this was not Vertigo and this was not coming from his ears.  At this point he was sent to the hospital for admission for a Neuro consult.  He spent 5 days in the hospital undergoing tests, CT scans, MRI's, Lumbar puncture, lab work, EEG, cardiac montioring.  The neurologist kept saying he didn't know what was causing it and he didn't know why he was consulted.  At this point we were very frusturated.  On the 4th day they consulted a Neuro opthomalogist to come see him.  This Doctor walking in the room and looked at Chris for 30 seconds and said I know what's wrong with you, those aren't Nystagamus that's Opsoclonus.  This is not all in your head!  Finally we found someone that knew what was going on.  More lab work that was sent out to Mayo and would take about a week for results so he was sent home the next day while we waiting on confirmation of the diagnosis by the lab.  After the lab confirmed there was presence of a paraneoplastic Antibody in his blood he was readmitted to the hospital on August 3rd.  This hospitalization he spent 14 days in the hospital receiving treatment for the paraneoplastic opsoclonus.  And undergoing CT scans looking for sources of tumor that could be causing his body to produce the paraneoplastic antibody.  The only abnormal findings were a 3 mm nodule in his left lower lung which is typically a non significant finding and stable hemangioma's on his liver which we have known that he has had since he had his gallbladder out many years ago.   He was given high dose steroids IV for 5 days to help with the symptoms which didn't help much at all, then they placed a dialysis catheter in his neck for plasmapheresis to filter the antibodies out of his blood.  The plasmapheresis was successful at resolving his symptoms, the dizziness and opsoclonus resolved.  After 14 days in the hospital he was sent home and set up for an outpatient PET scan to see if any cancer would show up.  The theory with paraneoplastic antibodies is that the body produces these antibodies to fight a tumor.  These tumors are typically small and difficult to find.  The paraneoplastic antibodies do a good job of preventing the tumor from growing much or from spreading which is why they are difficult to find.  But as long as the tumor is present the body will continue to produce antibodies.  The PET scan was negative and we just waited to see if symptoms would return.  Every day and week and then month that passed we started to think that maybe it was just a fluke and that all was well.  That was until April 2017.  Chris started noticing that he was tired more than usual.  He also started noticing what he called "brain fog"  he was working night shift at the time so these symptoms were pretty easy to dismiss for awhile.  The problem was the symptoms kept getting worse.  The "brain fog" progressed to short term memory loss.  He was making lots of mistakes at work which was very unusual for him.  Then I started to notice changes at home in his memory, he was displaying symptoms of "mild dementia"  I had been trying to get him to go to the Dr for a week before this just due to his c/o of "brain fog" but he refused.  But once the "dementia" symptoms appeared like forgetting that we had eaten dinner 2 hours before I insisted that he go to the Dr.  We had assumed that when the paraneoplastic antibody syndrome acted up again it would be with the same symptoms as before but these symptoms were completely different.  Saw the Neuro doc the next day and he confirmed his suspicion that it was the paraneoplastic syndrome again.  Lab work was drawn at the PCP and it was decided to wait until Monday to admit him to the hospital for Paraneoplastic Limbic Encephalitis.  The lab work once again did confirm that the antibody was present in his blood.  he had a repeat Ct scans that were unchanged.  MRI of brain, EEG, lumbar puncture.  6 more treatments of plasmapheresis.  The symptoms mostly resolved by dismissal 9 days later.  But once again no diagnosis as to the cause for the paraneoplastic antibodies.  So at this point we decided it was time to consult Mayo to see if they can give us any better insight as to the cause, long term prognosis and treatment.  So that brings us to current situation.  Scheduled to see Neurologist at Mayo on May 23rd.  will post updates as we get them.  If you have questions please ask, I start typing and sometimes forget to stop and explain in non medical lingo.

Newest Update

Journal entry by Anne Gehman

Hello all!  It's been quite awhile since I updated this site, which in a way is a good thing, that means nothing too major has been going on! :)  Chris' overall neuro status is at his baseline with no big changes in the last year.  This has become our new normal and we've learned to adjust our lives to this new normal.  The biggest change has been increasing pain the last 6 months or so.  It started out with just increased aches and pains, progressed to sensitive/painful skin and then progressively has worsened.  His "Everything" hurts, bones, muscles, joints, skin, you name it- it hurts.  It's terrible seeing him in so much misery, he cries out and moans in his sleep he hurts so badly, it's heartbreaking for me and just in general TERRIBLE for him. We've been trying to get in to a rheumatologist in Wichita since June and there's such a shortage of rheumatologists in Wichita that the first available appointment was for Mid October.  In the interim he has just been "Sucking it up" and hurting like no other.  We tried increasing his gabapentin to no avail.  Just saw his PCP again last week for increasing pain and are in the process of switching from Gabapentin to Lyrica.  The PCP had him completely wean off of the gabapentin before starting the Lyrica and by doing this he realizes that the Gabapentin was helping some because his pain has increased 10 fold in the past week!  

He has returned to Mayo today for his follow up.  We weren't expecting much to happen since neurologically everything has been stable.  He saw the sleep Dr this am just to follow up on his CPAP and insomnia.  He got an A from the Dr for his 100% use of his CPAP, his sleep apnea score went from a 68 to a 4, that means that 1 year ago he would quit breathing 68 times an hour and now that is down to 4 per hour so HUGE improvement with CPAP therapy.  No changes there, just needs to keep doing what he's doing.  They were hoping that getting his sleep apnea under control would help improve his cognition, headaches and fatigue but it didn't but it sure did improve my sleep :)  LOL.  Overall better for his health as well as uncontrolled sleep apnea can lead to many other conditions over time.

He saw the neurologist this afternoon, we discussed that cognitively nothing has changed but his headaches and general pain have worsened.  He gave him the diagnosis I had been waiting to hear when he saw the rheumatologist in October, Fibromyalgia.  This is a centralized nerve disorder meaning that his nerves are overly sensitized and firing off constant pain signals.  To put the pain in the words of Chris, "It hurts to wear clothes, just the clothes touching my skin hurts"  "My joints and muscles hurt all the time"  As for the bone pain he describes it as "Feeling like being hit by a bat in different places over and over again"  He recommended that we increase the titration time of adding the Lyrica, his PCP was planning a slow up titration, but the neurologist says for someone in as severe a pain as Chris is as well as someone who has been on such high doses of Gabapentin for a long time the slow up titration is not necessary and we need to get him to max dose soon.  So will be increasing the dose every 3-5 days as tolerated.  Now the next hurdle is getting insurance to cover it.  Apparently since there's no generic of Lyrica it can sometimes be a fight with insurance companies to get it covered.  He currently has samples that he's taking from his PCP and we will drop off the prescription at our pharmacy when we get home and fingers crossed that it won't be a huge pain in the A** to get it filled.  Dr McKeon says that since he's been on gabapentin and failed that it should be fairly easy to get it pre-authorized but there's never any guarantees when you're dealing with insurance companies.  Dr McKeon says that we will stick with annual follow ups unless something new pops up and we need to see him sooner.  He also put in orders for Chris to be seen in the Fibromyalgia clinic here at Mayo clinic, it's a 3 day clinic.  He has to get fasting lab drawn in the morning to help qualify him for the fibro clinic and they will get back with us in the next couple of days to set appointments for that.  Those appointments won't be until probably November at the earliest.  Also if we don't come up with any improvements in pain, there are a couple of other medications that could be tried as well as a 1-3 week "pain clinic" that they offer here at Mayo clinic.  But potentially having to be here for 3 weeks isn't really an option financially for us.  As much as we love spending time in Rochester it gets expensive staying in hotels and eating out as well as me missing work for that long.  But we will worry about crossing that bridge if we get to it.  For now we're going to be hopeful that the Lyrica will help to improve his pain and that the fibro clinic will help as well.

As for other pain management, earlier this Spring we purchase an Alpha-Stim machine.  Alpha stim is a therapy that they use at the VA for veterans with chronic pain, depression and anxiety.  It helps with all of it.  It's a cranial nerve stimulator.  I saw such great results with pain from the veteran's I was working with that I wanted Chris to try it out!  It does help him with his headaches, it doesn't completely alleviate the headaches but it does decrease the intensity of them while he's wearing it and for a little while after he takes it off.  The issue being that he forgets to use it.

In other family news, Ally graduated from High School in May and moved in to her own apartment with her girlfriend the 1st of August.  She's taking a gap year and not going to college right away.  She's not sure what she wants to do when she grows up and doesn't want to waste a bunch of money on college until she gets it figured out.  She has so many college credits already from high school and dual credit classes that she doesn't have tons of pre-reqs to do.  So she's just gonna work and make some money and eventually figure it out.  She's still working at Oak & Pie as a server and making pretty good money doing it.  Tyler is also on break from school currently.  He put his Master's degree on hold in November, the further he got in to the program the less he felt good about it.  He's also been working at Oak & Pie as a server and bartender saving up some money while he figures it all out.  He's currently thinking about returning to school in the Spring for Personal Training.  He's still living at home, although I rarely see him.

I have been doing well myself.  I've made myself a priority and started "self care" about a year ago.  The last several years my life has been so focused on everyone else that I let myself go a bit.  So in the last year I worked hard and lost 30 pounds and managed to get off of 1 of my BP meds.  I signed up for a membership at Massage Envy and faithfully get a monthly massage to help control my stress.  I'm currently training for a half marathon in October, assuming that this "bum" ankle I've got cooperates and starts to feel better.  

I guess that's about all I know for the moment.  Thanks as always for following our journey and continued prayers for our family and especially for Chris.
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