Nuerology Appt.

Yesterday Rassie had a neurology appointment.  There was also supposed to be a nerve study done but for some reason it was not upset.  That is being worked on and means another trip to the hospital!  The medical student and Dr. L looked Rassie over thoroughly.  They seemed concerned about his blackouts and that the frequency is increasing.  They asked all sorts of questions and even caused a hyperventilated induced blackout.  That was a little creepy. While he was out they tried talking to him.  They lifted his arm and let it drop to see if he had some sort of consciousness and would catch it. Then they checked his blood pressure, heart rate and and eyes.  Everything was normal there.  Dr. L wanted to have an MRI and EEG done right then in the office but there were no machines available so those have to be scheduled.  Like always, they have to be approved by insurance.  They are filing it through workers compensation insurance.  But, we are not going to wait too long to get approval there, we will file with out own insurance if need be because we really need to know whats causing these blackouts. And if it truly is related to the worker's comp injury then we will worry about having it refiled with them.  Rassie will most likely have his 4 hour video EEG on February 3rd but that date is not set in stone yet.  The MRI is up in the air but we should find out soon.  We are actually calling today to check back on everything, get an idea on when it will be approved and also to check back about physical therapy and if its been approved or denied this time around.

Rassie is stilling doing well with the CML and Gleevec.  We forgot to get all of his counts when he did labs this month but we do know everything came back normal or they would have called. So no concerns there. Will Keep you updated as we find out more.

God Bless

2nd Opinions

Rassie had an appointment today for a 2nd opinion on his work related injury.  The worker's comp insurance wanted a second opinion and the Texas Dept of  Insurance set it up.  The doctor who saw Rassie agreed 100% that Rassie will get better but he NEEDS physical therapy to do so.   Pretty much, Zurich, the worker's comp insurance was hoping they would say this is as good as Rassie is going to get.  They don't want to pay for expensive therapy treatments even if that means he will walk again. How ridiculous is that?  This doctor also said he was going to suggest the same thing as Dr. F......AQUATIC THERAPY!   We are hoping since this is a doctor the insurance company wanted us to get a second opinion through he will have a little more pull when it comes to Zurich approving or denying therapy. 

More news.   The more people we talk to, the more we are learning just how to handle this situation.  We've even contacted the ombudsman at TDI (Texas Dept. of Insurance)  We are accumulating very helpful information from lots of people.   One being, when the worker's comp insurance denies you some type of treatment don't just call and ask why.  Send a certified letter so you have proof that you contacted them and if all else fails send certified letter stating that you would like a benefits review.  It has to be set up before an actual judge and it usually gets the insurance company moving.  I just hate that its taking so long to get the help he needs and to learn everything we can do to get things taken care of.  So if you have any information to share, please do!

  Rassie is still having fainting spells.  Two nights ago he was feeding Lane at the highchair and ended up face down on the tray. AH! I try not to leave the room or turn my back but geez.  Tonight he fell off the couch.  I knew he was having his episodes and made him get on the couch to lay back in the first place. But then I had to run Scarlett to the bathroom and Lane cried so he leaned forward to check on him.  Bad idea, he blacked out and ended up falling onto the floor.  No worries, he wasn't hurt and it was a short fall but this has got to stop.  He has been off the med supposedly causing the episodes  for over a week now.  It is only supposed to take a week to get out of his system so I'm thinking its something else or a different med.

Rassie has another neurology appointment tomorrow.  He is having yet another nerve study done.  We are also going to ask more questions about the blackouts and hopefully get to the bottom of them.  Something is going on and we need answers.  I have to be with Rassie at all times.  If he has a blackout and falls the wrong way he can end up cutting off his air supply and suffocating himself. Very scary thought!

Thanks for all your well wishes, thoughts and prayers.  They are greatly appreciated.

God Bless & Good Night

More & More Blackouts

Or fainting spells. Whichever you prefer to call them.  Rassie has been off 2 of his meds for over a week now.  Soma and neurontin.  They were blaming the blackouts on the neurontin.  Maybe its just me but I think if you're coming off something the symptoms would get fewer until they were gone. Not the other way around.   Rassie has been having more and more episodes.  He has them on a daily basis now and has several instead of just one.  Last night his episode lasted a while.  After passing out and having to hold him in his wheel chair while I wheeled him to the living room, my brother and I helped him into the lounge chair where we let him sleep.  He slept until about 9:15 off and on.  And he could not remember how he got into the chair.  It has never been that severe. Usually its a blackout and once we wake him up everything is fine.   I am tired of not having answers!  Thursday Rassie goes for another neurology appointment.  I am going to push for further testing.  I found out they didn't do an MRI at the emergency room. Only labs, EKG, and CT scan. All those came back normal.  Something is going on and its getting worse!  If it is the meds then it's not the one they were suspecting.

Please Pray that we get some answers and these fainting episodes STOP.

God Bless & Good Night

PM&R Appt. Today

No update on the CML.  Rassie has labs tomorrow and we should know the results by the afternoon or Monday.  As far as we know this far his numbers are all in the normal range.

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Rassie had a PM&R* appointment today. The nurse case manager "D" for the worker's compensation insurance attended this appointment.  So far, we are still waiting for physical therapy to be approved.  Dr. F made it known that he had tried several times to return contact with the insurance doctors whom he never got through to and that there was no way any of the numbness/tingling or paralysis was due to his CML.  He also said he could not believe that the worker's compensation insurance doctors would let Rassie go this long without physical therapy.   "D" asked if Dr. F could give a different or new diagnosis for Rassie's condition and he said "No" that he was sticking to his original diagnosis of paraparesis and that the nuerapraxia the worker's comp. insurance keeps referring to is only a partial diagnosis and they need to get that fixed.  So now we are going for Round 3 of getting approval for physical therapy.

The nurse case manager also told Rassie she thinks its going to be a long while before he gets better and he should consider finding another job.  Not likely. He's on worker's comp for a work related insurance. She also said he should consider going to school during his down time just in case he can't get back to where he was before.  We're going to check into that and see if we can't possibly get it paid for.

Rassie's been having blackouts.  We took him to the ER on Monday night I believe (my days are all messed up).  Everything is leading back to it being a medication called nuerontin that is used for nerve pain.  All tests are coming back normal for everything else.  Rassie's primary care doctor had written a RX to switch him over to Cymbalta but Dr. F and Rassie are just going to work on weening him off of it completely.  Rassie actually hasn't taken any yesterday or today and we've had no episodes.  Dr. F did tell Rassie he is a health risk right now because of the blackouts and not to be holding the babies until the episodes stop and we're completely sure its the meds that were causing it. 

Rassie also has another neurology appointment coming up on the 28th.  His last nerve study came back "normal with delays".  This is what is giving Dr. F the impression that Rassie will fully recover, it will just take time.  They are also going to do a more extensive nerve study on the 28th.  I am not sure of the name, it's 6 words long!  I will get back to you with the name of it.

Okay! I think I covered everything.  It's hard to remember it all.  But if you have any questions feel free to ask and I'll try to answer them when I can.  Thanks for the continued support.

God Bless & Good Night

*PM&R = Physical Medicine and Rehabilitation.

An Oldie but A Goodie

I love happy memories

Sorry It's Been a While

It's been a while. Sorry!  So far physical therapy has not been approved by the worker's comp insurance. We just got our 2nd denial in the mail.  This time they are saying he should be better and that the numbness and tingling he is still having is a result of his CML. That's not true.  This Thursday Rassie has another appointment with Dr. F the rehabilitation doctor and the nurse case manager for worker's comp wants to be there. I am glad. Maybe they will finally see the truth about what is going on and that Rassie really does NEED physical therapy.

Rassie's CML is still doing good and under control. No news to report there until after labs at the end of this month.

The only new thing really going on is blackouts.  Ever since Rassie's appointment on December 30th, when Dr. F pushed around thoroughly on his back causing lots of pain and discomfort, Rassie has had 7 blackouts.    (Dec. 30, Jan. 3, Jan. 8, Jan 13, Jan. 16, and 2 on Jan 17)    Crazy, Crazy!  We went in to see Rassie's primary care physician on January 12th.  He seems to think the problem is a medication Rassie is on called neurontin.  He prescribed him Cymbalta instead.  We're not sure of the switch because cymbalta  is used for several things including as an anti depressant.  We've decided to wait it out until after the appointment with Dr. F on Thursday and see what he thinks, since he is the one who originally prescribed the neurontin.  Rassie also has another appointment scheduled with neurology on the 28th.  Hopefully we will get some answers at one of these appointments and be able to stop these blackouts.

Please keep us in your Prayers.

God Bless & Good Night

I forgot to update..

Last week Rassie went back to the physical medicine doctor for his back because worker's comp is playing games when it comes to the physical therapy he NEEDS!  Worker's comp told Dr. F that they denied the claim because they didn't think physical therapy was needed for.... drum roll please.... BACK ACHE!  Are you kidding me? Rassie CAN NOT walk.  What about this they cannot get through their heads sure beats the heck out of me.   So Dr. F spent alot of time on the phone with worker's comp and here it is over a week later and we're still waiting.  This is getting old and fast.  We're being as patient as we can while staying on top of things on a daily basis.  That's all we can do right now.  We do as much PT here at home as we can and some days my brother and I help Rassie to stand with the walker.

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Rassie had a follow up type of appointment in oncology today. He saw Dr. W.  Everything is looking good.  All of his counts are normal.  He only has to do labs once a month now and will be seen again in 2 months.  He no longer has to take the allopurinol for the uric acid caused by the killing off of white blood cells (that was being caused by the hydrea that he is no longer on since he's on Gleevec).

Rassie went over all his symptoms from head to toe, including the ones caused by the accident.  Once again we were reassured that the CML or the Gleevec does NOT cause paralysis and so on.  The doctors have made sure to put this in their notes just because of worker's comp trying to play games here and there. The denial letter we received from workers comp for Rassie's PT stated that Rassie lost his balance and fell before being struck by a cable and that he was recently diagnosed with leukemia prior to the accident.  Rassie actually slipped in oil based mud on the rig floor during the RAIN. It was not just some random loss of balance because of his CML. It was hazardous work conditions.   He was then struck in the back with a cable not once but twice and never actually fell all the way to the ground.

Dr. W also referred Rassie back to neurology (worker's comp related) because Rassie is still having some cramping in his back and his left arm goes numb on occassion.  Dr. W said this is not anything caused by the CML or Gleevec and so he should probably be looked over by neurology once again.

So that's about it, in a nutshell.

God Bless & Good Night