United Brachial Plexus Network, Inc.

hello,
read your story,i was on the sight looking for infomation on a drug,the same thing happen to my cousin while on vacation , hit by a drunk.you will get through it . i have a number of a doctor in new york i go to for pain and injections his name is dr moldover his number is 212 581 4488 or www.nybackpain.com or if you need more call me at 516 244 3891 i trust him and the best surgens are in the ny city area, (hospital for joint diseases )KIM TAKE CARE AND CALL IF YOU NEED MORE INFOMATION OR NEED TO CHAT , MY THANKS SALVATORE MONACO SR.

I can't believe you nice everyone is here...thank you!!! I am so fortunate to have stumbled onto this forum.

I have a question that's been bothering me and was wondering if anyone could help.

When I had my MRI, I refused to have the dye injected. I was wondering what the dye does for the scans. I can't find anything about it on the internet.The reason I'm asking is maybe I'm hoping that the neurosurgeon's diagnosis is incorrect because he said I torn my C7 and C8 but I can move my fingers a little bit. Regardless, if I avulsed the nerves, why can I still bend my fingers, only if it is is very minimal. Right after the accident, I couldn't bend my fingers but now, after two months, I can see a little bit of movement. Also, right after the accident, my arm was extremely sensitive but now, the sensitivity is gone. I should also say that I can only feel half of my hand ( I can feel my thumb, index, and half my middle finger.)

I know I'm rambling on and it doesn't even make sense to me what I wrote ( gosh...I'm pathetic) but could someone help me out?

Thanks.

Hey Kim
The procedure you are speaking of is called a myleogram. You lay face down on a x-ray table while dye is injected into your lower back. The table is then tilted so your head is lower then your feet so the dye runs to the cervical spine area. Then x-rays are taken of that region with film that shows the dye. What doctors look for is areas where the dye is "squirting" out of the spinal cord. If this is found, it's a good indication that the nerve is avulsed at what ever vertebrae the dye is leaking. When a nerve is avulsed, it leaves a hole in the spinal cord where the nerve root used to be, therefore that is why the dye can be seen leaking out with the cerebral spinal fluid.
In your situation, I would definately advise you not to get this procedure. Myleograms are archaic and quite painful. In today's age of technology, MRI are much safer. Mylegrams have been blamed for causing many lasting neurologic problems from migraines to other spinal problems. I, unfortunately had a myleogram and I blame it on the severity of my neuropathic pain. I was virtually pain free for at least two months after my accident until I had my myleogram. My theory is that they injected to much dye into my spine which created such extreme internal pressure that it tore out my C8 and T1 nerves. Granted those nerves had been injured during the accident but not diagonosed as avulsed in my MRI and I don't have Horner's syndrome which is associated with T1 avulsions.
In your case, it sounds like you have scar tissue or something else pressing on your nerves or maybe you just stretched them real bad. I am not a doctor (although I had a 3.95 GPA in Biology at VA Tech). This is just my opinion and hopefully some of the info will be helpful.
TAKE CARE LOVE SUSAN
GO HOKIES!

Kim,
The dye they use is for contrast. They do a scan before and after injecting the dye. It helps point out damaged areas. If you want to check out some info on your hand and the nerves feeding it, try this web site...www.eatonhand.com. It's a little analitical, but if your persistent you can make sense of it all. Go to the anatomy section and you can see which nerves are feed by C5,C6, etc. Or which muscles are feed by which nerves, blah blah blah. Anyway, Sue is right about the Myelogram being no fun. But I will say this about my Myelogram, it was the one test that showed definitively that C5 & C6 were torn at the spinal cord. Also ,trust me, your not rambling. All your questions and concerns are valid. The stuff that goes through your mind after getting hurt can be very intense. Take a deep breath, in and out, and keep asking questions (don't forget to breath).
Cheers....Karl....

Hello Kim,

I am sorry to read that you are now in this club of pain, and frustration. I too was hit by a drunk driver but it was a long time ago. I lived in the horrific world of pain meds, and no hope. However I too was at my end, until I had a DREZ surgery by a Dr. Osenbach at Duke University. I now feel so much better then before, my DREZ surgery was very hard to go to, I actually thought about it for a couple of years, (what a waste of time due to fear) If you find yourself needing a great doctor, Dr. O is the guy who "perfected" the DREZ and basically saved my life... I truely wish you the best of luck in your search for answers, and I hope that stem cell research can be a future cure for people in the next couple of years..
Good luck and "never give up hope"
Kenny G.

Very sorry to hear about your unfortunate accident.

I am in a similar situation to yours. I can feel my thumb, 2nd and 3rd fingers a bit. I have hardly any feeling or movement in my fourth and fifth fingers. Those fingers are controlled by the ulnar nerve distribution. Your thumb - 3rd finger are median, from what i understand.

The best thing you can do for yourself is learn as much as you can about your condition so you know what questions to ask the doctor and more to understand your injury. It's almost 4 years since mine and I am still learning.

Hang in there and you are always welcome to drop me a line with any questions
Gillian

Hi Kim...I am so sorry to read about your accident. I hope the drunken idiot who hit you gets whats coming to them...meanwhile, I hope you eventually find that your BP injury isn't serious and that you will make a good recovery.

It is very important that you find an expert in treating adult BP injuries, and I know Dr Terzis has vast experience in this. I've heard her present several papers at BPI Symposiums in Europe and she does seem to be at the cutting edge (if you'll excuse the pun!) but I do realise she isn't everyones cup of tea.

The Mayo clinic has, quite rightly, a huge reputation for treating adult injuries and I expect Ellen who posts here can give you loads of info on them. I don't know too much about medical insurance in the U.S (I'm from the UK)but I believe from reading other posts on here that there shouldn't be any problems with Mayo where this is concerned.

I'm a bit concerned about someone trying to give you a spinal dye before doing an MRI scan; I personally have never heard of this. Myelograms are usually done to help the radiologist detect leaking spinal fluid when using x-ray equipment. I have come across people having CAT scans using the dye method, but this is (in my experience anyway) very rare. Check out this site http://www.nlm.nih.gov/medlineplus/tuto ... 39101.html It's an interactive tutorial; it's a bit childish, but at least it lists the risks involved.

MRI scans are used more frequently now than myelograms simply because the myelogram procedure is so barbaric and more than just a bit risky. I think you did right to refuse it.

Let us know how you get on and if I can help with anything please don't hesitate to ask! (been 11 years with this injury and researching it for 5 of them) Also, have a look at the TBPI Group website which is authored and run by people with a TBPI and has quite a bit of information on it. There is another message board there attached to the site that you might also find is a help. http://www.tbpi-group.org

Lizzyb :0)

Hi everyone, I thank you for your comments. I still haven't heard anything from Dr. Terzis' office for my appointment. I paid her in advance but she is taking a long time...

Anyways, I found out the dye that they were going to use. It's called gadolinium-enhanced for MRI scans. Is this what you were talking about?

Thanks.

Kim
The best tests available are not definitive. The only way to be sure of the extent of your injury is to explore the upper plexus surgically. All the other methods leave so much room for miss interrupting that they only indicate a further exploration surgically any way so......... cut to the chase and find a Dr who will explore and then repair what needs to be repaired. Reconnecting the nerves is also the best way to get relief from the neural pain you are experiencing. I agree with Sue's evaluation of Dr Belzberg who will give you way better advice than I can. Remember you have a 6mo window for optimum results.
Keep the faith, Red

Hey, how is everyone? As for myself, I'm doing okay but the pain in my left fingers are unbearable most of the day...the only relieve I can get is when I'm asleep. Anyways, just an update, I have scheduled an appt. with Dr. Terzis on Dec. 1st. I also will ask my doctor to refer me to the Mayo Clinic when I see him this Monday. I'm very skittish about letting Dr.Terzis do my surgery. Other than that, nothing is new with my condition. I just wish that I can have the surgery right away and get started on recovering so I can be back to school for spring semester. Oh well, I guess I just have to look at things optimistically. I have to go but I'll write back soon and any inputs would greatly be appreciated. Thank you. Bye!