dark hole - medication or not
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punchy sue
- Posts: 127
- Joined: Fri Sep 26, 2003 8:31 pm
dark hole - medication or not
I am in such a bad place right now. My pain is so out of control . I can,t sleep, can,t eat, or basically do anything. My accident occurred July 11,03 as I somehow fell out of a car, going about 40 MPH. I had emmence pain in my left arm in the hospital, so they gave me morphine, but I also cracked my skull in three places so that was the docter's main focus. for a month after, I had no pain in my arm, They did have me on Duragesic 25 for head trauma but my arm felt fine although paralysized. All of a sudden, I started getting sharp pains down the pinky side of my forearm. Then it moved to my hand. Then in was like cramping, fire electric shock up my forearm. It is now affecting my upper arm and my pecs and posterior scapula muscles. How can my muscles contract if I have avulsions C6-T1. There should be no ennervation to my arm muscles. I keep on reading on this website to get off of all medications. I am only taking Neurontin, an antidepressent and Valium. But the pain is slowly killing me. I do meditation and other alternative therapies, seeing how my back grond is in massage therapy. I am starting to get suisidal because I Keep reading that the pain can last forever. /It's like being in a deep black hole with no light to give me hope. Piease, will someone tell me how they controled their pain. I am sinking further every day!
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: dark hole - medication or not
Hi Susan
Sorry to hear about the pain. Early on in the injury is when it's worst-it's still vey early on for you. Pain at the level you are at is very rare long term, it can happen but not often. Most of us get the pain level tolerable within the normal nerve recovery timeframe, around 2/3 years. I do still get severe pain, but it's rarer, especially if I keep the arm warm-cold is one of my triggers.
I know you have had avulsions diagnosed, but you should be aware that the only reliable diagnosis is obtained by an EMG being performed intraoperatively during exploratory surgery. Very often avulsions ae diagnosed but when the surgeon takes a look the injury is not as bad as first thought. Here's hoping.
I have multiple avulsions and no part of my arm recovered except my biceps, but sometimes my whole arm, including muscles that hav had no innervation for 23 years, goes into a spasm and starts flipping around. It's a bit freaky, it flaps like a fish!
I did come off the pain meds after about 3 months but all you can do is read what others have said and find your own way-we are all different and what works for one might not work for another. It's very easy to say "Get off the meds " but I can't experience your pain, you need to do what works for you. My weaning off meds coincided with my return to full time work and I found that this was the biggest help-learning to do everything without my dominant arm kept my mind focused, the pain receded to the back burner. I have used marijuana for many years to control not so much the pain, but my response to it, and am hanging out for legalisation of this drug for medicinal use here in New Zealand so I can get the oral spray that many members of the tbpi uk group trialled in the UK over the last couple of years.
Sorry to hear about the pain. Early on in the injury is when it's worst-it's still vey early on for you. Pain at the level you are at is very rare long term, it can happen but not often. Most of us get the pain level tolerable within the normal nerve recovery timeframe, around 2/3 years. I do still get severe pain, but it's rarer, especially if I keep the arm warm-cold is one of my triggers.
I know you have had avulsions diagnosed, but you should be aware that the only reliable diagnosis is obtained by an EMG being performed intraoperatively during exploratory surgery. Very often avulsions ae diagnosed but when the surgeon takes a look the injury is not as bad as first thought. Here's hoping.
I have multiple avulsions and no part of my arm recovered except my biceps, but sometimes my whole arm, including muscles that hav had no innervation for 23 years, goes into a spasm and starts flipping around. It's a bit freaky, it flaps like a fish!
I did come off the pain meds after about 3 months but all you can do is read what others have said and find your own way-we are all different and what works for one might not work for another. It's very easy to say "Get off the meds " but I can't experience your pain, you need to do what works for you. My weaning off meds coincided with my return to full time work and I found that this was the biggest help-learning to do everything without my dominant arm kept my mind focused, the pain receded to the back burner. I have used marijuana for many years to control not so much the pain, but my response to it, and am hanging out for legalisation of this drug for medicinal use here in New Zealand so I can get the oral spray that many members of the tbpi uk group trialled in the UK over the last couple of years.
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cbe411
- Posts: 1393
- Joined: Sun Jun 01, 2003 8:27 pm
- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
- Location: Grosse Pointe Woods, MI
- Contact:
Re: dark hole - medication or not
Susan,
As Jen, I am sorry to hear that you are having such great pain! I was there myself a few years ago. Have you tried acupuncture at all? I ahve not but have heard from others that it is great, after a few sessions. I find that, as Jen said, keeping my mind busy helps! Have you seen a BPI doctor yet? They know best and I Agree that avulsions are best diagnosed in the OR with an EMG. Some opt for surgry, others are not interested. Its a personal decsion that you have to discuss with a BPI guy. I just had my second, 2.5 years after my accisdnt, and again, different pain. After my never graph I noticed pain rellief! But every case is different so every outcome is different! Good luck and email me if you need to! We are all here for you! courtney@ubpn.org
Courtney
As Jen, I am sorry to hear that you are having such great pain! I was there myself a few years ago. Have you tried acupuncture at all? I ahve not but have heard from others that it is great, after a few sessions. I find that, as Jen said, keeping my mind busy helps! Have you seen a BPI doctor yet? They know best and I Agree that avulsions are best diagnosed in the OR with an EMG. Some opt for surgry, others are not interested. Its a personal decsion that you have to discuss with a BPI guy. I just had my second, 2.5 years after my accisdnt, and again, different pain. After my never graph I noticed pain rellief! But every case is different so every outcome is different! Good luck and email me if you need to! We are all here for you! courtney@ubpn.org
Courtney
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cbe411
- Posts: 1393
- Joined: Sun Jun 01, 2003 8:27 pm
- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
- Location: Grosse Pointe Woods, MI
- Contact:
Re: dark hole - medication or not
Susan,
I just read your post on the lurkers threadand the insurance thing is really crappy, for lack of other words! I am in the process of appealing with my insurance companies to pay for the surgery that I just had. My mom went to Texas with me, we are in Michigan, we had to take $10,000 with us and they said we can figure the rest out. What a bunch of garbage! I am 2.5 years into this so if I was going to have this particular surgery, it had to be done right away! So we got the $$ together and went. Now we are fighting with them, the insurance company! My mom has called our state senator and he has gotten involved too! It is a tough battle but you have to fight for what you think is the best! Check into doctors in other states that will except your insurance maybe! Just and idea but DONT give up and let them win! You deserve the best medical treatment that you can get! Good luck!
Courtney
I just read your post on the lurkers threadand the insurance thing is really crappy, for lack of other words! I am in the process of appealing with my insurance companies to pay for the surgery that I just had. My mom went to Texas with me, we are in Michigan, we had to take $10,000 with us and they said we can figure the rest out. What a bunch of garbage! I am 2.5 years into this so if I was going to have this particular surgery, it had to be done right away! So we got the $$ together and went. Now we are fighting with them, the insurance company! My mom has called our state senator and he has gotten involved too! It is a tough battle but you have to fight for what you think is the best! Check into doctors in other states that will except your insurance maybe! Just and idea but DONT give up and let them win! You deserve the best medical treatment that you can get! Good luck!
Courtney
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punchy sue
- Posts: 127
- Joined: Fri Sep 26, 2003 8:31 pm
Re: dark hole - medication or not
Courtney and Jenny
Thanx for your support. Last night when I wrote my message, I had just been on the road for 22hrs in four days going to see a specialist Dr. Kline(the mvp in bpi)recommended. His name is Dr. Zager in Phillly, and I thuoght that he was a straight forward guy in what he said he could do. My mom, Who has basically overtaken my life probably for good reasons, thought he wasn't optamistic enough and was too far from home to have as my Dr. I live in Virginia Beach, but she has kidnapped me (probably for good reasons) to Mertyl Beach. So now I am seeing Dr.freidman at Duke on the 14 th of October. I really didn't start freaking out until I was told that there is a 6 month window of opportunity to have any sucsess rate with a nerve graph. I am at about 3 months now from time of my accident. I just really want to find a Dr. who knows what he/she is talking about so I know where I am heading - Thus the black hole therory. I so do not want to sound like a cry baby or a pessamist, I am just physically and mentally worn out.
Thanx for your support. Last night when I wrote my message, I had just been on the road for 22hrs in four days going to see a specialist Dr. Kline(the mvp in bpi)recommended. His name is Dr. Zager in Phillly, and I thuoght that he was a straight forward guy in what he said he could do. My mom, Who has basically overtaken my life probably for good reasons, thought he wasn't optamistic enough and was too far from home to have as my Dr. I live in Virginia Beach, but she has kidnapped me (probably for good reasons) to Mertyl Beach. So now I am seeing Dr.freidman at Duke on the 14 th of October. I really didn't start freaking out until I was told that there is a 6 month window of opportunity to have any sucsess rate with a nerve graph. I am at about 3 months now from time of my accident. I just really want to find a Dr. who knows what he/she is talking about so I know where I am heading - Thus the black hole therory. I so do not want to sound like a cry baby or a pessamist, I am just physically and mentally worn out.
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cbe411
- Posts: 1393
- Joined: Sun Jun 01, 2003 8:27 pm
- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
- Location: Grosse Pointe Woods, MI
- Contact:
Re: dark hole - medication or not
Susan,
So did you see Dr. Kline or you are in the process of trying to see him? He is a very reputible (sp?) man! There is a time frame window with nerves but I have pushed them all! I had my nerve graph 9 months after my accident and it helped! Then I just had a nerve transfer to get biceps function back... that is not done a fter about 18 months and I Am 2.5 years. There are time frames but they are different for each person! So what about Kline??
Courtney
So did you see Dr. Kline or you are in the process of trying to see him? He is a very reputible (sp?) man! There is a time frame window with nerves but I have pushed them all! I had my nerve graph 9 months after my accident and it helped! Then I just had a nerve transfer to get biceps function back... that is not done a fter about 18 months and I Am 2.5 years. There are time frames but they are different for each person! So what about Kline??
Courtney
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punchy sue
- Posts: 127
- Joined: Fri Sep 26, 2003 8:31 pm
Re: dark hole - medication or not
Courtney
When the accident first happened I saw a docter at South Carolina medical school and he said Dr. Kline was top of the feild. I emailed him and about twenty neurosurgeons in Virginia where I live. Dr. Kline called me the next day and recommended I see Dr. Terzis (noway) or this Dr. Zager. I would love to see Dr. Kline if he would take up my case but I don't think my mother will be willing to go that distance and I don't think I can do it all by myself. She not willing to drive to Philly for Zager, so I guess I am going to Duke. I don't even know if the guy I am seeing has much experience with BPI. I just feel lost right now. Thank you for letting me vent.
Susan
When the accident first happened I saw a docter at South Carolina medical school and he said Dr. Kline was top of the feild. I emailed him and about twenty neurosurgeons in Virginia where I live. Dr. Kline called me the next day and recommended I see Dr. Terzis (noway) or this Dr. Zager. I would love to see Dr. Kline if he would take up my case but I don't think my mother will be willing to go that distance and I don't think I can do it all by myself. She not willing to drive to Philly for Zager, so I guess I am going to Duke. I don't even know if the guy I am seeing has much experience with BPI. I just feel lost right now. Thank you for letting me vent.
Susan
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cbe411
- Posts: 1393
- Joined: Sun Jun 01, 2003 8:27 pm
- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
- Location: Grosse Pointe Woods, MI
- Contact:
Re: dark hole - medication or not
Susan,
How old are you? What exactly happened in your accident? Make sure that you see a BPI doctor, no matter where you have to go.... also check with your insurance company, some of them pay for traveling expenses (airfare, rental car, hotel, gas to drive). DO get the best of what is out there! I have been through the riger with insurance companies, I feel like a pro. Email me if you have anymore questions!
Courtney
How old are you? What exactly happened in your accident? Make sure that you see a BPI doctor, no matter where you have to go.... also check with your insurance company, some of them pay for traveling expenses (airfare, rental car, hotel, gas to drive). DO get the best of what is out there! I have been through the riger with insurance companies, I feel like a pro. Email me if you have anymore questions!
Courtney
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: dark hole - medication or not
Hi sue my is TODD I live in michigan to like couetny and i have had my tbpi for a year and a half. i'm am going the 29 of octoberto get my frist surgury,so it is very important to see a good doctor asap.there is a Dr. bishop at the mayo clinic in minnsota it is a great place so you might look in to it.Dr. bishop is really good so is spinner and shin they work together.good luck and keep fighting don't let them win,god bless:
Toddxoxo
Toddxoxo
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punchy sue
- Posts: 127
- Joined: Fri Sep 26, 2003 8:31 pm
Re: dark hole - medication or not
Courtney
I'm 29 years old and suffered LTBPI on July 11, 2003 by falling out of a car going @40 MPH. I am getting so confused, I just now got an appointment with Dr. BELZURG at John Hopkins for the 10th of Oct. while I still have an appointment with Dr. Freidman at Duke on the 14th of October. If anyone out there has good/bad comments on either docter's you can email me at I'm really starting to go bonkers -at least it takes my mind off the pain!
Thanx Susan
I'm 29 years old and suffered LTBPI on July 11, 2003 by falling out of a car going @40 MPH. I am getting so confused, I just now got an appointment with Dr. BELZURG at John Hopkins for the 10th of Oct. while I still have an appointment with Dr. Freidman at Duke on the 14th of October. If anyone out there has good/bad comments on either docter's you can email me at I'm really starting to go bonkers -at least it takes my mind off the pain!
Thanx Susan