Hello Everyone! Lumbar patient (L4-5, L5-S1) Rambling Intro...

[Genn]

Hi Everyone,

I've been reading the forums and figured it was time to say

I'm 32 and have experienced LBP since my teens. ~1998-99 I was in a MVA & hit from behind by a drunk driver, injuring 2 Lumbar discs. My reg Ortho referred me to PM and this incident prompted my first visit to a Neurosurgeon. He advised me I would need surgery in the future but, not then. I was "too young" at the time and he said "You will know when you need surgery". I did conservative treatments for many years until my acute episodes became chronic... Only took about 1/2 a second, on a light weight day, with my x-trainer at the gym. I woke up, couldn't move my legs, and had 1 episode of loss of urine after injury. Luckily, that was temporary and I regained the use of my legs (it was strange and scary) but, not w/o severe pain. That will be 3 years this December. Most of which has been spent in bed. Ufff!
Sooo.. What happened?? Why is it so difficult to get treatment/help?! I'm in the NY/NJ area and have lost count of how many drs I have seen here. It wasn't until I saw a Neurosurgeon/Spine group in FL that couldn't understand why the drs in my area didn't operate. ( The law varies greatly with these States!) Anyway, it was the first time a Neurosurgeon called in the other Drs from the group to discuss/exam my case. All staying an extra hour- after hours- with the end result being "We can help you".. I cried! It was the first time I heard those words and, with what seemed like sincerity.
My time spent under their care (looking back) was the majority of my 'good days' since I went down in '08. He ended up recommending fusing both levels using the TLIF method. I *almost* had the surgery but, got held up in pre-op w/ an abnormal EKG on a Wednesday, an ECO and Lexiscan Stress test on Thursday, and by 6am Friday- I was in the Cath lab having an angio! Which was clear but, happened so fast- it scared me! However, I was now cleared to get back on the surgery schedule.
Well, a couple more weeks to go and I get a call that my Aunt (who cared for me while I was bedridden the first year and my husband was on tour) just had a massive heart attack and was life-flighted to another hospital having a second heart attack en route. Needless to say, I was on the next plane out to NY and straight to the hospital. I stayed with her for 2 weeks in the CICU.
Unfortunately for me, that was the end of- what I call- Round 1. I was already running out of my pain meds and couldn't bare the thought of traveling. I was stuck back in NY- w/o a Dr.
A year later and I'm still here. After doing another year in bed, I'm on 'Round 2'. 3 drs. later and my PM&R gave me a Rx for PT!!!!
Sometimes I just want to scream... and, I do!! Who knows.. Perhaps it was a blessing in disguise (twice) that things kept happening just prior to that surgery. I didn't even know there were different approaches/options, at that time.
Sorry~ I have been awake since Friday. I went to roll on my side in bed and something went POP! No sleep, tears, exhaustion, pain... and, i'm ranmblinggggggggggggggg!

Thanks for taking the time to read this Hope it makes sense in my delirium!

-Genna .... now 3" shorter o.O


-2009 MRI & myelography reveal DDs @ L4 & L5. At L5 there is loss of height w/foraminal compression. Disc protrusion @ L4 is predominantly to the left. There is an annular tear. The degree of canal encroachment increases on Ext. compared to Flexion. Mod. distal R foraminal bulge abutting L5 root & posterior bulge abutting S1 root. L5 Mild degenerative facet arthropathy.


-09/2011 MRI: L4/5 DD w/disc space narrowing, hyperintense signal posteriorly in the disc annulus compatible w/ annular tear w/ midline protrusion indenting the anterior aspect of the thecal sac in the midline. L5/S1 DD w/disc space narrowing, altered marrow in the end plates, generalized bulging of the disc annulus w/spondylosis & broad-based disc extrusion into the anterior epidural space across the midline, obliterating the fat anterior to the thecal sac.
Transitional vertebra at the lumbosacral junction w/partial Lumbarization of S1.

[Katie]

Welcome Genn....and you haven't been here long enough if you think that you were rambling We have some real experts here....me being one of the best or worst!

Such irony...I went through similar problems with doctors until I sent my images off to NYC, and finally got my first proper diagnosis of my problems. Things started to fast forward from there, and while I couldn't afford the great surgeon there (Dr. Fabien Bitan), he offered me the most help and information that was needed to get help elsewhere. I'm from Canada, and he fought my provincial health insurance tooth and nail for me...without luck, but not from lack of trying.

I would HIGHLY recommend getting in for a consult with him. He got my images on a Thursday and he insisted that I see him ASAP...the following Monday. He spent hours with us, explaining our options and his opinions....a great man, both in bedside manner and in talent from what I've learned from others. He was going to do a hybrid on my neck and again in my lumbar. Because of FDA regulations, I couldn't have more than one level of ADR, so a hybrid was the next best thing there in the US. I'm not sure if the regulations have changed since, but he would be a good man to check out.

I hope you find peace and good information here...this forum has literally been a lifesaver to so many of us...and we're always happy to add to that list

[Genn]

Katie Thanks so much for the Welcome!

It sure is ironic. Thanks for the info on Dr. Bitan. It sounds like you had a great experience with him. I've checked out his website and will make an appt w/ him and see if he is willing to help me and/or steer me in the right direction. At this point, I would be happy to get a proper diagnosis.

My experience in NYC has been less than favorable.... by "The Best" (they all say that here! LOL ) I saw one there last month that walked into the room just long enough to tell me to go on PM.. then walked out. My friend looked at me as my eyes were bulging out of my head- and said " Well, that was an absolute and complete waste of a time!" And, it was..
I was more devastated than anything else. I was certain that if *anybody* could figure out why I was in so much pain and do treatment accordingly.. it would be this Hospital. Perhaps, I just chose the wrong Dr. to have a consult with. Who knows... He gave me the impression that NS has become more of a business than medical treatment. The longer this journey takes, the more I'm inclined to agree.
I saw a few more back in 2009. Another one of 'The best!!!!!!' (my cousin had a successful major op by) ordered many tests. I went for the Myelogram that he ordered- and had a spinal headache. I was informed that happens often and is normal so I was waiting it out. As my neck got stiff and I couldn't move my head in any direction, my Aunt started her usual panic...After unsuccessfully getting any info from calling the on-call dr.............. She called my MIL! At the time, I didn't know what was worse.. my back or when my Aunt panicked!! LOL
Anyway, she asked me to lay down on the floor and Waaaaaaa La! I could move my neck and head around- no problem. So, off to the ER I go w/ my MIL to have a blood patch in my spine. Which worked immediately since I was no longer leaking fluid. Nice! Something good did come out of that fiasco!

Fast forward to 'now'.. I started the PT yesterday. Today was my 2nd session. After a lengthy exam, she said I need to have this surgery- Sooner than later. She is helping to relieve some pain while exploring my options and will get my core ready for surgery. I will continue to see the drs. in the group I am in now, since they tend to *not* do many injections where I am. I'm scheduled for SNRBs in 2-3 wks and another consult with the surgeon next Friday. After that (if I'm still not getting anywhere) ... The search is ON!

One of the PTs there made me laugh shortly after I arrived today.... Since being upright floods me with pain (we do everything lying down right now), a short wait quickly shows. I was completely hunched over and starting to sweat. He asked me what my drs. say. I replied, " Continue with Pain Management". He says, "Yeah, How's that working out for ya?!" We both laughed.. It was funny in a sad. kind of way! LOL

Although he is not my PT, he asked who I would be consulting next. I told him I would be making an appt w/ Dr. Bitan. He wrote the name down to look him up. I was shocked! I've never been surrounded by so many people who actually care. I told him he not only has the credentials but, was recommended by a previous patient with first-hand experience as an accurate diagnostician, who not only tried his best to help (Ins.) and when you needed other options, he helped point you in the right direction. To me, that is a great help, and I thank you very much for the recommendation!! I reallllyyy hope it goes well. I'd love to know if I'm even a candidate for ADR. Ahhh.. So many questions and now hoping for some answers.

I'm ramblinggggggg again!!!

All in all, I'm pleasantly surprised and extremely grateful to have such an experienced PT. (neurological, SCI, JR) Its a wonderful feeling -finally... having someone on my side, w/o any other interests.. other than helping me get back to life. As, I'm sure you can relate. ;-)

Calling my PCP tomorrow... Make an appt to get some blood work done and check for Lyme's. I was also asked if I was tested for MS.. if that was ruled out?? o.O One step at a time....

[laid up doc]

don't know your $$$ situation is... but i would at least get consults from Drs Boeree and Clavel - a 2 level fusion at your age should, imho, only be done for instability/stenosis/scoliosis, or if it's really the only thing you can have done under your insurance or due to your financial situation. i am just a year older. see my signature... i have a sense your best option may be overseas as well.

you will need your most recent xrays/MRI/CT/discogram/whatever you have in electronic format on your computer to send to them. i also created a word document chronicling my back history - which they found very helpful.

gotta run, but best of luck to you...

[Pbchoclovr]

Hi Genn,

Welcome to the site!

I'm sorry to hear that you've had such a rough time getting a proper treatment for your spine issues. We all certainly understand where you're coming from, since we're either going through it now or have in the past.

If you're in the NY/NJ area and not really impressed with the choices there due to history, have you considered looking into Johns Hopkins in Baltimore? It's only a couple of hours south and is currently rated the number one hospital in the country. They have a top notch neurosurgery department. That's where I had a TLIF of my L4/5 in June this past summer. I can't speak highly enough of them. I absolutely love my surgeon, Dr. Daniel Sciubba. He spent over 30 minutes in his initial consultation and then called a week later and spent another 45 minutes on the phone answering questions and calming my concerns about surgery. He was the complete opposite of the steroetypical neurosurgeon who's distant and not open to questions. As a matter of fact, when he introduced himself, it was with his first name, not his title. While that has little to do with his ability, it certainly made me feel much more comfortable with asking questions.

Anyway, just thought I'd throw that out as an option since you're within driving distance. There are many choices out there. Keep asking questions and looking. You'll know when you've found the doctor that's right for you.


Linda

[Katie]

Genn, good luck with Dr. Bitan. Say hi to him from 'Sue in Ontario' please. The cutest comment he made about my case is that he had never written so many letters for a woman (to my Gov't insurance, trying to help), even when he was courting someone He literally spent hours with us, showing us around the hospital as well, even though he had not had great luck getting the Canadian gov't to cover surgeries with him in the past.

I really hope he can help, and your insurance comes through. I can call you and chat if you like...I work from home and need to ramble sometimes

[Katie]

Oh, and just to add...I had to go through the other useless tests for MS, etc as well. Glad they were thorough, but geez, let's work on the obvious stuff first!

[ajj1001]

Welcome to the forum, sorry I haven't said hi before but I'm having a grotty time post op. What surgical options are you considering?

[Genn]

Hi Everyone~ Sorry, I have not responded in so long. I've been going through the ringer...Again. And, not feeling very social-to say the least.

Let's see.. Did my PT.. No change.
"won" the argument with a surgeon I saw 3 yrs ago and said it was time for surgery. He ordered a discogram. Unfortunately, his partner refused to do it (age! and against me having surgery). The NS did warn me that he will most likely say No and he would send me out to have it done. Well, I showed up at the Hospital yesterday for my appt expecting to have my discogram and the dr came in and said he doesn't do them there anymore. to go to a different hospital!! Grrrrrrrr!! He told me he hasn't done on one 2-3 Years!! I was pissed off..still am! That they even took me for an appt! Why have me come in for a discogram when you do not do them??!!!!!
Whatever..

Katie.. I am leaving in less than an hour for my appt with Dr. Bitan!!

Linda Thanks~ So many have told me about Hopkins~ So, I gave them a call. I am sending all my films/reports/ contact info. I like their system. All the info is send prior, the panel reviews the info and will assign a dr. for my case. Of course, they said I can request, as well. Since that will be a short travel, I'm happy to know they do this and helps me believe it wont be a another waste of a trip.

I'm not sure if I'm getting the hurry up and wait..'dangle the carrot' BS right now or what.. But, I'm not a happy camper. I've been very depressed... So , I apologize for SUCH a late reply

Doc~ I'm in agreement with you. When it came down to it in my debate with the surgeon- He said " My problem has been my age. Nobody wants to do such a procedure on me. However, he has a hard time leaving me crippled for so long, as well." I told him my next step will be International consults.. He was happy with my research but, want to try and keep me Domestic. Not looking good for them right now..we'll see.

ajj~ Thank you for your response.. I do hope you are feeling a bit better post-op by now.. When I get back, I shall do more reading in the forums to catch-up a bit. I wish I knew what options I am considering.. Right now, I am still searching for a more proactive surgeon.. I don't feel there are many options to choose from at this point. After my meeting with Dr. Bitan, I am hoping for some... He doesn't take many Ins.. only 2 and the majority of ppl aren't covered. So, Well see what he has to say..

OK.. Off to the City in this Crazy grid-lock Holiday traffic! Joy! Hope you all are doing well. Catch up later!

[laid up doc]

see what Dr Bitan says... but the issue is going to be whether both levels are symptomatic, or what are called "pain generators"... a discogram is what would tell you/your surgeon that info.

if you have 2 bad levels, the problem you will run into is that most US insurance companies won't cover a 2 level ADR nor a "hybrid" - 1 level ADR and 1 level fusion. that is part of why i said to look overseas... they routinely do both of these things, which one would depend on the condition of each level.

good luck - i was very, very lucky to just have 1 bad level. and i had my surgery at 33, know of several others who had ADR surgery in their 30's. Justin, iirc, was in his late 20's. surgeons citing an age issue is crazy... unless they're just talking fusion, which i imagine the are.