They want to do surgery!

[tag0620]

..to correct that herniated thoracic disc!

Neuro #1 (who referred us to the als specialist) took all of our x-rays, ct scans, blood work, and mri's into the monthly meeting for their clinic. This included neuros, orthopedes (including the one who did Jim's fusion), anesthesiologists, etc. Jim's case was THE case presented yesterday.

The spinal cord signal on the most recent MRI is showing that slight signal change from that herniated thoracic disk...and that combined with all of the sensory disfunction, along with the fact that we've had strength increases on anabolic steroids, and the fact that almost everything has been confined to the lower body for two and a half years...and it all started with the accident/back break...makes them think that they need to fix this.

A couple of catches...he needs to have bloodwork done to check his thyroid...one of the neuros had a past case with lower body weakness with upper body facsiculations and it turned out to be a thyroid disorder...he's getting the blood drawn for that this afternoon.

Also, one of the anesthesiologists said he wouldn't put him "under" until he checked full pulmonary function...because just in case, if he does in fact have als....if they put him under...he may never come off of the ventilator...so if there's any pulmonary trouble...the surgery won't happen.

BUT...the fact that they're willing to operate points to the fact that they are less inclined to think it's als, even though they won't rule it out completely yet.

WHEW...don't know WHEN yet...and it's not a pleasant surgery (may have to remove a rib and colapse a lung to get into it)...but OMG we're anxious to have this done and see if we can start to move forward!

Just wanted to share what we HOPE is good news!

Tracy

 

[olly]

hi tracy
good to hear they are finally taking notice of your opinions and doing something.
i really hope the tests are ok to go ahead with the surgery,though i know it will be tough for you all.
i will be hoping and praying everything works out fine.

 

[hopingforcure]

Goodness the hoops you guys are going through..I am continually amazed of how many things the amazing human body can have as well as do. I think that is so amazing that sometimes ALS could have actually been a mimic to so many other things. I am of the school of thought that als is actually a syndrome, not so much a disease.. Here is hoping that whatever they call it, the surgery is a sucess. How inspiring what a partner you are.. Hats of to you...

 

[crystalkk]

Tracy,

I am so happy to hear that you got someone to listen. Wouldn't it be nice if it was just his thyroid.
Good Luck and keep us posted.

 

[KANSASTOM]

Congrats, It is a shame you had to work so hard to get this surgery, it should not be so hard. Once they focus on ALS then the Dr's have tunnel vision. Two and a half years with no progression and his past back problems to me it is a no brainer. Best wishes

 

[Al]

Even though it's not as bad as ALS it's still scary stuff. I wish you luck and hope for the best for you.

AL.

 

[lydia]

I am so happy to hear this! What an amazing and tireless advocate you are to pull this off. But, as others have said, it is too bad you had to fight to get it...but that is behind you now. You have done it, time to move forward. Am crossing my fingers that the pulmonary function is just fine.

So happy for you-

Lydia

 

[lovelily]

What amazing news, for you both! I hope that all the testing comes out fine, so things came move forward. God bless.

 

[brendapals]

Wishing you both all the best for what you've been thru! My goodness, I hope it's just a thyroid problem,but if not, that it is "fixable" with surgery,
Never give up!
brenda

 

[tag0620]

Thanks everyone!

Nope...not thyroid...but they were never looking at that as more than just a possible cause of the fasciculations...but he did have his thyroid tested in Nov and it was normal and our MD didn't think it would have changed since then.

The herniation is what they're going after and even then, we don't know what the prognosis is. Once you've had spinal cord injuries that are severe enough to cause the type of neurological symptoms that he's experiencing...you may not come back from it...the damage "may" be permanent. The good news is though...that this is considered an incomplete spinal cord injury and it is more common to come back from those...not usually fully after this length of time...but it's better than the alternative right now!

Jim's going to call tomorrow to find out how we schedule the pulmonary testing...because once that's done...and if it comes back ok...we're on for scheduling the surgery.

I'll keep everyone updated as to what exactly it involves once we have the consult appt with the surgeon. Fortunately, we've worked with him before...so it's just finding out what procedure he'll use and what the recovery will be like.

You all are so wonderful and so appreciated!

 

[planningguy]

Awesome news. We will eagerly await future updates.

Robert

 

[wright]

Bravo Terry and congratulations to you, your husband and your family. Take care and be cautiously optimistic that all will be fine. Take care.

 

[tag0620]

Another step forward. We have our appt for the pulmonary testing to be done tomorrow at 12:15pm.

Jim also left a message at the orthopede's office to get the ball rolling on scheduling surgery...He made sure to mention that when they submit an authorization request to our insurance company...DO NOT mention the als diagnosis because insurance would deny this surgery if it's mentioned....so....still moving forward...but paranoid because we've had so many disappointments along the way...it's hard to believe that this will happen....fingers are crossed though!

 

[rose]

Tracy,

I'm really heartened by the latest turn of events. Life is an adventure to be lived, not a story to be told, and you and your husband exemplify this.

Please know my thoughts are with you, I'm having computer problems at home, so not posting much, but I've been reading some today.

Keep on keeping on, it sounds like its not going to be easy, but its still so much better. Hope is best of all!