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Old 10-26-2003, 07:45 PM   #1
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BarbS123 HB User
Post Hi Carla!

Hi Carla,

I didn't want to take up space on Belle's thread, so I started one just for you.

Anyway, my story is pretty long, so my best suggestion for you would be to do a search by my user name (BarbS123) in this forum. (I've also done some posting on the "back" forum.) There's a chance that a lot of it's gone by now (some of it might be in the archives, though), but there's still a lot here, I think.

The contraption I was in was a Miami JTO. Many people here are in just the Miami J, which is the hard collar. The JTO includes the J plus an additional piece which covers the chest and back. It's horrendous. I think if you type "Miami JTO" in your search engine space, you'll find sites that will provide you with a picture. I used to wonder why the girl in the picture was smiling, but then I realized that she was probably getting paid lots of money to pose for that picture and that she would be removing the contraption when the shoot was over. I'd smile, too, in that case!

I was diagnosed with MS in January 2002 and have been on Avonex since February 2002. I've only had one major flare since then. It was quite bad, but I willed it away and was fine within a few hours. (That's another long story.)

I can certainly understand why you'd be worried about your "good" side being affected. I was lucky; my MS side is the same side that was affected by my cervical problem. But then again, it might also have been a curse. I probably had cervical symptoms long before the need for surgery came about, but I just attributed everything to the MS. Perhaps if I had looked into it sooner, the surgery could have been prevented. By the way, I agree that a neurosurgeon would probably be a better choice than an orthopedic one, but some of the orthos have great experience with this kind of surgery.

Well, I guess that's about it for now. Please take some time looking through the old posts, and if you have any more questions, please feel free to ask.

Lots of love,

Barb

------------------
Anterior Cervical Corpectomy/Diskectomy); own bone from left iliac crest; titanium plate with 4 screws. Freed myself of Evil Miami JTO (not just J) killer contraption against surgeon's orders (and happy I did it!!!!)
Rebellion worked--I'm free with the surgeon's blessing now! YIPPEE!!

[This message has been edited by BarbS123 (edited 10-26-2003).]
__________________
Anterior Cervical Corpectomy/Diskectomy); own bone from left iliac crest; titanium plate with 4 screws. Freed myself of Evil Miami JTO (not just J) killer contraption against surgeon's orders (and happy I did it!!!!)
Rebellion worked--I'm free with the surgeon's blessing now! YIPPEE!!

 
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Old 10-27-2003, 06:49 AM   #2
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CLJones64 HB User
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Hi Barb, and thanks for the thread! I've already been looking back and catching up on some of your experiences. You really went thru it with the surgeon from hell. lol I don't understand why she put you thru that, and I'm sure you don't. Good thing you were so informed and were able to take your recovery into your own hands. My hat is off to you for that. I do hope you're doing well now, and will continue to improve.

As for me, well I'm placing all my eggs in the basket with the injection, hoping and praying that it will help with the pain and allow me to avoid surgery. I'm seeing a chiropractor, too, figuring that's just another avenue to possibly help me. So far, he's not made much difference, but I keep hoping.

As for the MS, it's great to hear you're doing well with that, considering all you've been thru! I know stress definitely affects it, and you've had more than your share of that I feel sure. I worry about mine flaring up, too, but so far, so good. The Avonex has proven to be a wonderful drug for me as far as that goes, and I wish you the same luck with yours!

Thanks again for sharing your story with me, and I'm sure I'll have more questions for you along this path.

Hugs,
Carla

Oh, there is one thing from your post that struck my interest...you willing away your last flare. Care to ellaborate??
__________________
DX with Multiple Sclerosis 12/97. Weekly Avonex injection for MS.

2 bulging and 1 herniated disc 09/03. Bulging at C5/C6 and C6/C7 levels. Herniation with foraminal narrowing and obvious nerve root compression at T1/T2.

 
Old 10-27-2003, 01:38 PM   #3
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BarbS123 HB User
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Hi Carla,

Thanks for all the kudos!

Before I do anything else, I just want to wish you good luck with your plan of action. I hope that you will be able to get the relief you need without the trauma of surgery. Be careful with the chiropractor, though. I know that many people believe strongly in chiropractors, but I am not one of them. To be honest, I've probably heard just as many success stories as horror stories, so I would never be so presumptuous as to tell someone not to visit one. All I ask is that you be very careful.

Now, to answer your question about the MS flare. You know what they say about MS and heat, right? Well, June 25 was an incredibly hot day; it was close to 100 degrees, and the humidity was quite high. It was also the day that I had to take my daughter to the bus that would take her to sleep away camp. My husband couldn't come for the ride, since he had just been released from the hospital two days prior, (that's a whole other story!) so my brother came for the ride.

The first problem was that the air conditioner in my car was not working, so it was pretty hot in the car. But I had the windows and the sunroof open, and since the traffic was not too heavy, I was able to drive fast enough to catch a breeze. I also had my bottle of frozen water with me. So far, so good.

We arrived at the place about 30 to 40 minutes before the bus was supposed to arrive. But it didn't arrive when it was supposed to. The idiot bus driver got lost! There was no place to go to get out of the heat, and of course, I had no air conditioner! As the time passed, my right limbs started to tingle and burn. (My LEFT side is the one I call the MS side.) And the burning got progressively worse, until I felt as if I were on fire! Then, my head started doing what I call "MS things" (for lack of a better explanation).

Finally, the bus came. We had been waiting for about three hours! We said goodbye to Jennifer and started on our way. My brother asked me if I was okay to drive, and I said I was. Believe me, I was feeling lousy, but not lousy enough to be a passenger in my own car! But when we got to the highway, we saw that it was at a dead standstill! Luckily, I knew how to get back to Queens from Long Island via streets, so I got right off the highway.

As long as the car was moving, I was able to tolerate the heat, but every time I got to a red light, the symptoms got worse. Then, my hands started to contract, and my head started getting worse. Finally, I pulled over and told my brother I couldn't drive anymore. He knew at that point that this was pretty serious!!

I didn't know until I opened the door to walk around to the passenger side that I couldn't walk! I had to hold onto the car to manage this feat; I'm sure I would not have been able to take even one step totally unaided.

As we continued on our way, I continued to get worse. My hands not only contracted, but they were completely frozen in the "shadow duck" position. Even my brother couldn't forcefully open them up. All I kept saying was "GET ME HOME!"

Thankfully, a very dear friend of the family was at my apartment with my husband. (We couldn't leave him home alone.) When we got in front of my building, we called her from the cell phone and asked her to come down. She took one look at me and almost collapsed!! Apparently, I looked pretty bad!

Anyway, she helped me out of the car and up to the apartment. (I was able to walk, but quite unsteadily.) I went into the bedroom and lay on the bed. (Poor me--I had to go to the bathroom, but I knew it would be impossible, since my hands were virtually paralyzed!) Then, Lovie took off my socks and went to get an ice pack to cool me down. (The air conditioner was on, but I could hardly feel it.)

The ice felt good on my head, but--here's the funny part--when Lovie put it on my neck, where I really wanted it, I got a sudden pain! OMG!! I realized that I now have a metal plate in my neck!! Do you know what cold metal is like? Needless to say, we took the ice off immediately!

And here's where the will came in to play. I kept staring at my frozen hands and saying, "I have to do my husband's IV tomorrow. And I have to change his dressing. And tomorrow is Avonex day. My hands HAVE to get better." And I kept talking to my hands and willing them to "unfreeze". By the time I had been home for about two hours, I was back to my pre-flare condition! Whew!

So that's the story. (By the way, I love the Avonex! Well, maybe "love" isn't quite the right word, but you know what I mean.)

I'd love to be able to give you my e-mail address, since I know there's so much more we can share with each other, but unfortunately, they don't allow that around here. Sigh. Anyway, keep in touch.

Love and hugs,

Barb


------------------
Anterior Cervical Corpectomy/Diskectomy); own bone from left iliac crest; titanium plate with 4 screws. Freed myself of Evil Miami JTO (not just J) killer contraption against surgeon's orders (and happy I did it!!!!)
Rebellion worked--I'm free with the surgeon's blessing now! YIPPEE!!



[This message has been edited by BarbS123 (edited 10-27-2003).]
__________________
Anterior Cervical Corpectomy/Diskectomy); own bone from left iliac crest; titanium plate with 4 screws. Freed myself of Evil Miami JTO (not just J) killer contraption against surgeon's orders (and happy I did it!!!!)
Rebellion worked--I'm free with the surgeon's blessing now! YIPPEE!!

 
Old 10-27-2003, 09:19 PM   #4
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nanna02 HB User
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Hi Carla and Barb
Sorry to intrude on your thread , but I just HAD to leave this message for you both..

firstly, Thank You Carla , I did read yours, and yours also Barb.You did have a rough time eh?!

2nd.
I couldn't believe it when I read you BOTH have MS.. as I have also !!

I was dx way back as 'possible MS' in 1990, aged 38yrs. but had no MRIs' then.. got better rapidly .. no symptoms for the past 13 years , then just recently in Sept. my eyes became blurry , got the optic neuritis .. felt almost like going blind !! big blob in my eye.. Specialist said we'll wait see if goes away on it's own with no steroids. 1 month later it improved a little so no steroids..
it's a little better but at times worse than other days..
What I wanted to say was fancy us spineys having MS as well?!!

I have a white lesion on the brain and some say on the sp.cord./ showed on MRI,-- others argue "none!". but no one seems concerned about it.. -"it may have been a stroke .. or MS.. but it's not typical" Neurologist said 3 years ago..
Well.. it became calcification of spinal cord once operated on !!I guess I'm somewhat of a problem to all concerned!..I have 2 medical probs with similar symptoms !Who to believe ??
Oh well.. I've had so much happen I'm not going to bother worrying ..

Do yous' think it strange we have all had verterbrae /bulging disc probs?..or is this 'par for the course ' with MS do you think? Interesting ?

I never had an accident of my Thorasic spine, but I did fall & fracture my coccyx ( tailbone) 26 years ago.....
Interested to see what you both think ???
Cheers Belle xxx
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Old 10-28-2003, 10:35 AM   #5
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CLJones64 HB User
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Hey Barb and Belle,
Shocking news to find out that you also have MS Belle. I post on the MS board here also, and it's become obvious to me that people with MS often have disc problems. There's a thread on the MS board that has many others in the same boat as us. I'm surprised that the doctors haven't noticed this and performed some sort of study about it, considering how many it happens to. I find it occuring too frequently to ignore, and hope that someone will find a study somewhere that will shed some light.

Thanks Barb for the concern about the chiro. This is my first time with one, and needless to say I'm a bit skeptical since no progress has been made thus far and it's been almost a month. He doesn't want me to get the thoracic steroid injection but if it will relieve this pain I'm definietly not going to miss that appt. I already had one in the cervical region but it didn't help...or at least I couldn't tell that it helped. Who knows at this point?

Thanks for sharing your story about your experience in June. Man you had a rough day that day for sure! I tend to think maybe it was just pseudosymptoms brought on by the heat. I know I get them if my shower is too hot, so I've learned to keep it cool. I think heat intolerance and fatigue are my biggest problems to be honest. I did have a couple of bouts with my vision prior to my official diagnosis..one with double vision, and the other optic neuritis. Luckily, I haven't had any more recurences (sp?) with either.

The Avonex has proven to be a wonder drug for me, with no flares since I started it (jan '98). I hate the weekly "flu", but I know it's only temporary, so I continue with my therapy. My body has tolerated it very well, and my 6 month bloodwork has stayed good.

So Belle, are you on anything for your MS? Do you have regular problems with it? If so, you should really talk to your doctor about one of the ABCR drugs...they're doing wonders for me in keeping the disability at bay.

Whew, I've gotten long winded. Sorry. I would also love to converse with you via email....and I didn't know you couldn't post an email addy here. Yikes...I may have gotten in trouble at some point if you hadn't told me that.

Thanks to both of you for befriending me in this time of uncertainty. I look forward to corresponding with you in the future. Best of luck to both of you and I pray for your improved health!

Hugs,
Carla
__________________
DX with Multiple Sclerosis 12/97. Weekly Avonex injection for MS.

2 bulging and 1 herniated disc 09/03. Bulging at C5/C6 and C6/C7 levels. Herniation with foraminal narrowing and obvious nerve root compression at T1/T2.

 
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