Cervical stenosis 'mystery man'

[the_aborigine]

Yup, that's what I was called by the last clinician I saw.
No real mystery to me but the way I have been treated has been.

I'll be brief but firstly I'd like to give my respect and thanks to this whole community. I have been reading and I have deep compassion for what so many of you have dealt with.

51, male, good health, active most of my life, always had subtle 'low back issues'.

About 3 years ago working with my daughter prepping for high school soccer I noticed I couldn't quite get my feet out in front of me running. A few months later I noticed balance issues and more pronounced numbness in my feet. More months later at my annual physical my GP says stenosis of the cervical spine, orders MRI's.

I attended a LaserSpineInstitute seminar and was identified as a candidate. I went to the PA facility and after more MRI's and xrays was told I needed more than they could do.

I saw a surgeon at Lahey Clinic who said I was not a surgical patient. And then the most recent doctor at a NH spine clinic (referred to me as 'mystery man') who said fusion was the only answer but may not result in lessening of symptoms.

I am confused about what to do, my family is confused about my confusion. I had a phone consultation with Dr. Ditworth who was mainly interested in what all the other guys told me.

So many specialty clinics around the country, hospitals here in New England . .
I'm waiting to hear back from Texas Joint and Spine to see if I am a candidate for Dr. Pauza's Fibrin procedure.

Thanks for reading and all the best to everyone here.

[Maria]

Don't know what to say but to wish you good luck with finding someone you trust in terms of correct diagnosis and prescribed treatment plan. I think the confusion sounds normal at least to start with and by and by some things become clearer (hopefuly) depending on who you see and diagnostics you have done. It's difficult for families to watch our lives come apart so to speak with regard to the "new" person we become with loss and limitation. I do wish you all the best in your efforts to find your "path" so to speak and I'd recommend talking to Mark Mintzer here (mmglobal) as he can be incredibly helpful and has loads of experience working with spine patients as an advocate.

btw ~ welcome to the forum tho sorry you find yourself here amongst us!

[jsewell]

Hi and welcome,

I have a question what were they going to do at the Laser Spine Clinic?
What exactly did they say was wrong or what did the MRI say was wrong.? Is there a written report and do you have a copy? These things might be helpful for those that can interpret things. I am not one of them, although i don't do too bad with my reports. Just can't make heads or tails out of the MRI images.

Hopefully you can give us more info . Do you have any other symptoms ? I had pain in the neck, limited motion, an electric shock like sensation and then the arm symptoms started. When it was obvious the arm was loosing its strength was when my surgeon said it was time for surgery.
judy

[the_aborigine]

My going to LSI was based on having my MRI reviewed at a seminar in Rhode Island. The physician saw the films, listened to me and said I was "definitely a candidate".

The surgical nurse who spoke to me first at the LSI facility was surprised I was there because I am not a "pain patient".

I'm not sure how much detail to go into, the specific facilities, doctor's names, etc.

I believe my condition is the result of a trauma in high school football (1977), helmet-to-helmet and I went to the ground feeling like I'd been hit by lightning. I was back-boarded and examined but I had no peripheral symptoms at the time. In fact, I played that weekend wearing a neck roll

I have disc compression and herniation and an osteophyte, cervical spine. In the MRI you can see the very subtle pressure on the spinal dura, just enough where the cerebral spinal fluid disappears. The images are taken when your lying down. The disc instability is enough where, if I walk or rake or vacuum I am disabled from the waist down in about 35 minutes. My symptoms (burning, clonus, hyperreflexivity) have been acknowledged to be cervical in origin.

I believe I am a candidate for MISS but I feel the Fibrin therapy may be very appropriate.

[jsewell]

Hi Aborigine
Funny , i am from Rhode Island and never hear much about the state except in jokes.
I understand more about what is going on now. Now i have no idea what fibrin therapy is so i must find out.
Judy

[Maria]

Aborigine..
I'm from Mass. Used to live in Somerset and walk across the bridge to Fall River.. know where that is?? It was little Portugal as I recall back when we were living there (I was in my teens back then and am nearly 60 now).

Have you had any good consults in Boston by any chance? Please let us know if you decide on a certain procedure and how you fare.

I orig injured my spine in the early 80's.. I think my choices are limited now just based on number of years with probs .. unless a terribly new injury tho most of what bothers me is from the past~

Would like to hear more about the Fibrin therapy should you undergo this.

Best and take care ~ Maria

[karreymetris]

Are you talking aboue Laser Spine Institute in Florida?

[the_aborigine]

Originally Posted by karreymetris

Are you talking aboue Laser Spine Institute in Florida?

Philly, but, yeah . . .

OK, folks. Did a search here, did not find anything; 4 surgery groups, 2 neurologists, 3 chiropractors, no one said,"maybe you should look into disc decompression therapy."

I'm at work one day talking to our sales guy who's not in the office much, describing what I'm dealing with and he says,"the chiropractor I see has a machine for that I think."

I started SpineMED therapy 12/4/13. It's expensive and not covered, not FDA approved. I go everyday, 30 min session with heat before, ice afterwards. And today I can say I am pretty sure I am quantifiably better.

Has no one else heard of this??!!

[Maria]

I have heard of it as I'm sure here in SoCal there must be machines like this but I've not actually known anyone that goes.

Tell us more if you're so inclined. What does a daily 30 minute session involve? What is the out of pocket cost?

glad to read that you are improved! I wonder if imaging would show any difference in findings after the amount of treatment to date?

[the_aborigine]

Originally Posted by Maria

Tell us more if you're so inclined. What does a daily 30 minute session involve?

I show up, heat is applied to the neck, climb on the table, 1/2 hour treatment of computer controlled cervical traction. Not painful but not 'comfortable' per se. At the end, ice is applied. I am now also doing some light leg rehab exercises.

Originally Posted by Maria

What is the out of pocket cost?

Mine is a package, covers treatments until recovery, not totally sure what that means but they've said some folks have gone for months, approx $2K

Originally Posted by Maria

I wonder if imaging would show any difference in findings after the amount of treatment to date?

Me too but I ain't gonna pay to see

[Maria]

Thanks for the answers to ?'s. Yeah I guess if you're feeling better would anyone even bother to order an MRI on you and if you have to pay cash that's a consideration in even trying to pursue getting one unless perhaps one goes outside the U.S.

Hope you continue to improve with it. Keep us posted!

[Ringo]

Did they do flexion and extension x-rays on your neck. You might have a profound instability. You symptoms sound like cervical spondolosis with some intermittant myelopathy. Get a neurologist to look at you and tell him what is going on. Ask him if you are having some type of intermittant myelopathy. I am not an expert but that is what I would do. Usually myelopathy from cervical spondolosis happens real slowly over time. You might be starting to experience it and it just hasn't gotten to the point where they think you are a surgical canidate. I think that I have similar symptoms. My neck is trashed and I get weird stuff happening in my legs but I have also had 4 back surgeries. I will see a physiatrist in about a month and I will be seeing someone that specializes in migrains as well. When my neck gets real bad I tend to loose a little feeling in my hands and feet and I sort of feel like I walk funny. But, my doctor has me parade around the room and says you look fine to me. They're terds! Just sort of joking.... Any MD's out there need not take it too serious. They have to go by the book and untill you cross the magical red line, they typically won't touch you or shouldn't touch you. You have something going on. Severe flexion or extension can damage the cord and cause problems also but, I would think they would be more constant or permanent. All just my humble opinion based on my own experiences. Take care, Terry

Originally Posted by the_aborigine

My going to LSI was based on having my MRI reviewed at a seminar in Rhode Island. The physician saw the films, listened to me and said I was "definitely a candidate".

The surgical nurse who spoke to me first at the LSI facility was surprised I was there because I am not a "pain patient".

I'm not sure how much detail to go into, the specific facilities, doctor's names, etc.

I believe my condition is the result of a trauma in high school football (1977), helmet-to-helmet and I went to the ground feeling like I'd been hit by lightning. I was back-boarded and examined but I had no peripheral symptoms at the time. In fact, I played that weekend wearing a neck roll

I have disc compression and herniation and an osteophyte, cervical spine. In the MRI you can see the very subtle pressure on the spinal dura, just enough where the cerebral spinal fluid disappears. The images are taken when your lying down. The disc instability is enough where, if I walk or rake or vacuum I am disabled from the waist down in about 35 minutes. My symptoms (burning, clonus, hyperreflexivity) have been acknowledged to be cervical in origin.

I believe I am a candidate for MISS but I feel the Fibrin therapy may be very appropriate.

[Ringo]

You can buy a similar device I think on ebay. I did that in PT and it works but doesn't last. My head feels great when I do it. The home device works by filling a jug or water bottle and hanging it on a door or something. Doing it that way is more affordable. Terry

Originally Posted by the_aborigine

Philly, but, yeah . . .

OK, folks. Did a search here, did not find anything; 4 surgery groups, 2 neurologists, 3 chiropractors, no one said,"maybe you should look into disc decompression therapy."

I'm at work one day talking to our sales guy who's not in the office much, describing what I'm dealing with and he says,"the chiropractor I see has a machine for that I think."

I started SpineMED therapy 12/4/13. It's expensive and not covered, not FDA approved. I go everyday, 30 min session with heat before, ice afterwards. And today I can say I am pretty sure I am quantifiably better.

Has no one else heard of this??!!