Hi all! Please forgive me for not posting for like a year! We got married last October and then moved. Today is our 2 year TBPI anniversery. Things seem to be getting more difficult for us rather than better. The pain is worse and he takes 5 80mg Oxcontin a day. The tolerance he's built up is incredible! He literaly woke up one day and the medication stopped working on his usual dose. So we are now battling pain and drug addiction/tolerance problems. We are now back in IL with both our families. I found a great job with a mom and pop law firm assisting people with getting Social Security/Disablity benefits. How ironic! I also have great health insurance that covers the drugs Jason needs, so that is one plus for us! I have so much I want to share with everyone, but I want to start with this first:
I have great news! As most of you do, you search online for more information on tbpis. Have you noticed in the last couple of years there seems to be a splurge of info on it? Jason and I have been to multiple pain specialists and I don't know if it's just us or what, but we seem to get the same thing over and over. They just up the Oxycontin and herd us through the door. We are going to Barnes Jewish Pain clinic in STL. That doctor is just like the rest, and that hospital is supposed to be one of the top in the nation. What a joke! I have been researching and printing out information for doctors on tbpi's since this happened and they never read it or say it won't work or they never heard of it. Everyone here knows that conventional methods of pain treatment just don't cut it for many people suffering from a tbpi. Well, after 2 years of searching for a good, quality doctor(aside from Dr. Nath, he's our miracle worker! He got Jason's bicept working again!), I finally found someone I can hold an intelligent conversation with regarding the tbpi. I will not release his name yet b/c I don't know if he wants it spread on the net, I am impressed with his knowledge and experience in treating this horrific injury, but need to discuss referring people to him first plus I want to see what happens with this surgergy before getting our hopes and anyone else's up. Anyway, I found him online in July and I emailed him on a Friday night. His sight said he had a special intrest in tbpi's. He called me the following Monday and spoke with me for an hour! He is a neurosurgeon at one of the top teaching and research schools in the US. We made an appointment and went out of state to see him and he spent an hour and a half with us at his office. He is going to preform a DREZ on Jason in November. I'm sure most of you know what it is, but for those of you who don't, it stands for the Dorsal Root Entry Zone. He has been doing the DREZ for several years and the results for pain releif vary anywhere from 0-90% pain relief. They will opening the spinal cord and manipulating the area where the nerves were avulsed. There are serious side effects from it. Most comman is weakness in the leg of the side of the affected bp. Jason's being the left. There is a chance of paralysis, although this has not happened to this doctor in the past. There is all the standard surgery risks too, like blood clots and that. Jason and I have discussed the pros and cons. This is not garunteed to work first of all and the risks of something happening are frightening. But Jason is in so much pain and he is willing to take that risk. The pain has not let up at all over the last 2 years and if he keeps up this pace with the Oxycontin he will be dead by the time he is 35. We are really starting to see the signs of the adverse effect of long term narcotic use. The memory loss, loss of appetite, teeth problems. We are just praying that at least 10-25% of the pain is relieved. Jason would be a different person and I know his quality of life would improve greatly! He is severely depressed and has started antidressants for the first time since this happened. We asked the doc at BJH to refer him to a pain psychologist and he refered him to a general psychologist who said she COULDN'T HELP HIM AND TO GO BACK TO HIS PCP AND BE REFERED TO SOMEONE ELSE! When we asked why he did that, he said they didn't have any pain psyc's there. I called his bluff and researched the BJH sight and found an entire list of them so I emailed the director of the department who contacted the doctor and he is scheduled to see a pain psychologist! This is kind of crap we have been dealing with for 2 years!
If any of you have any info on the DREZ to share I would really appreciate it! I have been finding some stuff but it's all dated bac to the 1980s.
Thanks all! How are you guys holding up?
Amy and Jason
We're back with good news (we hope!)
Re: We're back with good news (we hope!)
Hi Amy, I can put you in touch with several people who have recently had DREZ surgery, and others who had it a few years ago. Would it be alright to pass on your email address to them? Some might see your post and reply directly to you anyway, but others don't always look on here.
On a personal note, I must say I am disgusted by the way you and Jason have been treated by these so called pain management experts; it seems all they want to do, as you say, is up the dosage of whatever useless drug they have given you, then give you the bum's rush out of the door. I guess that, at the end of the day, they really and truly just do not know what to do with us and the levels of pain some of us reach are too scary for them to contemplate.
I agree with you that there has been a sudden influx of info on the internet in the last couple of years about TBPI but please be careful about believing everything you read. During the years we have spent researching this injury, me and Jen (from New Zealand) have come across so many sites that give false and misleading information, or the site is just a heavily disguised advert for a product or service that needs paying for. We have even found websites about TBPI that provide contradictory statements or info even within their own pages. Sites that contain references to recognised and researchable studies are usually pretty safe since most if not all of these studies are peer reviewed. Unfortunately, BPI surgery has become kind of 'sexy' since the results from it can be pretty spectacular on ocassions, and there are so many inexperienced surgeons jumping on the bandwagon and dabbling in it now and it is cause for concern...anyway, bit off subject there..sorry...!
Has Jason ever tried actually coming off the oxycontin? Jen and I between us have spoken face to face with dozens of people with a TBPI and have been in touch with over 100 more and we have found that the people who deal with the pain successfully, or feel it a lot less are those who take very little, or better yet, nothing at all for it. You can read other messages on the boards here about this; also, if you received the last Outreach magazine from UBPN, there is an article about pain in there written by me and Jen, and is mainly people talking about what has worked for them. We also have a couple of pain articles on the TBPI Group website that might give you a different insight into this http://tbpiukgroup.homestead.com/faq_1intro.html
and
http://tbpiukgroup.homestead.com/centralpainbpi.html
Email me if there is anything I can do liz@tbpi-group.org...the pain is without doubt the biggest and worse part of this injury. Take care..
Lizzy B
On a personal note, I must say I am disgusted by the way you and Jason have been treated by these so called pain management experts; it seems all they want to do, as you say, is up the dosage of whatever useless drug they have given you, then give you the bum's rush out of the door. I guess that, at the end of the day, they really and truly just do not know what to do with us and the levels of pain some of us reach are too scary for them to contemplate.
I agree with you that there has been a sudden influx of info on the internet in the last couple of years about TBPI but please be careful about believing everything you read. During the years we have spent researching this injury, me and Jen (from New Zealand) have come across so many sites that give false and misleading information, or the site is just a heavily disguised advert for a product or service that needs paying for. We have even found websites about TBPI that provide contradictory statements or info even within their own pages. Sites that contain references to recognised and researchable studies are usually pretty safe since most if not all of these studies are peer reviewed. Unfortunately, BPI surgery has become kind of 'sexy' since the results from it can be pretty spectacular on ocassions, and there are so many inexperienced surgeons jumping on the bandwagon and dabbling in it now and it is cause for concern...anyway, bit off subject there..sorry...!
Has Jason ever tried actually coming off the oxycontin? Jen and I between us have spoken face to face with dozens of people with a TBPI and have been in touch with over 100 more and we have found that the people who deal with the pain successfully, or feel it a lot less are those who take very little, or better yet, nothing at all for it. You can read other messages on the boards here about this; also, if you received the last Outreach magazine from UBPN, there is an article about pain in there written by me and Jen, and is mainly people talking about what has worked for them. We also have a couple of pain articles on the TBPI Group website that might give you a different insight into this http://tbpiukgroup.homestead.com/faq_1intro.html
and
http://tbpiukgroup.homestead.com/centralpainbpi.html
Email me if there is anything I can do liz@tbpi-group.org...the pain is without doubt the biggest and worse part of this injury. Take care..
Lizzy B
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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: We're back with good news (we hope!)
Hi there Amy, great to hear things are going well.
I can only second what Liz has said-I think I must have read every site there is mentioning tbpi, and whereas 4 years ago there was NOTHING out there for tbpi, suddenly there are 'experts' everywhere-I'm afraid someone cottoned on to a new lucrative market and suddenly everyone wants onto the bandwagon. Like Liz I have seen sites with contradictory info, others where severe side effects are minimised or not mentioned at all-it's a big worry. I visit sites for specialists tbpi tell me they are using and find not one mention of tbpi or our particular problems on their sites, and no indication of numbers treated-others report things their specialist has said that reveals they are very much not up to date on the latest treatments and protocols for tbpi, some find out AFTER surgery that their 'specialist' has never performed their particular surgery before....this is more worrying than the complete lack of interest shown in tbpi by many specialists in the past.
I met and spoke to someone who had the DREZ at the UK tbpi gathering, he was really happy with the results but emphasised how traumatic a surgery it is, and was aware that apart from the side effects already mentioned, in some cases the pain returns after a while, sometimes worse......
I hate saying discouraging things like this, I know how debilitating the pain is and that frankly anything that eases it is acceptable whatever the risks-DREZ surgery exists because sometimes it's the only hope. You seem to be doing your research pretty throughly and I hope the pain guy you are now seeing can deliver the help Jason needs.
Keep us posted and GOOD LUCK!!!
I can only second what Liz has said-I think I must have read every site there is mentioning tbpi, and whereas 4 years ago there was NOTHING out there for tbpi, suddenly there are 'experts' everywhere-I'm afraid someone cottoned on to a new lucrative market and suddenly everyone wants onto the bandwagon. Like Liz I have seen sites with contradictory info, others where severe side effects are minimised or not mentioned at all-it's a big worry. I visit sites for specialists tbpi tell me they are using and find not one mention of tbpi or our particular problems on their sites, and no indication of numbers treated-others report things their specialist has said that reveals they are very much not up to date on the latest treatments and protocols for tbpi, some find out AFTER surgery that their 'specialist' has never performed their particular surgery before....this is more worrying than the complete lack of interest shown in tbpi by many specialists in the past.
I met and spoke to someone who had the DREZ at the UK tbpi gathering, he was really happy with the results but emphasised how traumatic a surgery it is, and was aware that apart from the side effects already mentioned, in some cases the pain returns after a while, sometimes worse......
I hate saying discouraging things like this, I know how debilitating the pain is and that frankly anything that eases it is acceptable whatever the risks-DREZ surgery exists because sometimes it's the only hope. You seem to be doing your research pretty throughly and I hope the pain guy you are now seeing can deliver the help Jason needs.
Keep us posted and GOOD LUCK!!!
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Kathleen M
Re: We're back with good news (we hope!)
Amy & Jason
I e-mailed you but if you are interested in a doctor with current and active information on tbpi pain management check out Dr.Belzberg from John Hopkins in Maryland.
Recently we held Camp UBPN in Lake George. He was part of our Medical Panel of outstanding doctors from different areas of the US. He also gave a pain management class (that is all I can think to call it)
It was amazing how much he knows both about OBPI and TBPI pain and the different types of pain each one has... he explained drez surgery and for the first time I understood what it was about... He also exlained how different medication help with different causes of pain... and of course the usual advice about medications not always working and using other methods he was very honest about the lack of help for pain and how bad the pain of tbpi is.
Kath
I e-mailed you but if you are interested in a doctor with current and active information on tbpi pain management check out Dr.Belzberg from John Hopkins in Maryland.
Recently we held Camp UBPN in Lake George. He was part of our Medical Panel of outstanding doctors from different areas of the US. He also gave a pain management class (that is all I can think to call it)
It was amazing how much he knows both about OBPI and TBPI pain and the different types of pain each one has... he explained drez surgery and for the first time I understood what it was about... He also exlained how different medication help with different causes of pain... and of course the usual advice about medications not always working and using other methods he was very honest about the lack of help for pain and how bad the pain of tbpi is.
Kath
Re: We're back with good news (we hope!)
Hi Amy, good to see you posting again, I've been an absentee for ages too! ;O)
Sorry I can't help you with the DREZ decision, you guys seem pretty clued up about the injury and treatment options. You mention Jason has depression, I was diagnosed that too and the antidepressants help. They seem to calm the pain down too as well as stop my mood going too low, I think depression can make pain 'feel' worse and hopefully he will get relief from the depression (emotional pain) and some of the physical pain too. If you and/or Jason want to talk about it or anything my addy is tarmacsurfer@aol.com mail any time. If you do mail put something in the subject line as mail from unknown senders is usually spam and deleted unread, thanks and good luck!
Dave
Sorry I can't help you with the DREZ decision, you guys seem pretty clued up about the injury and treatment options. You mention Jason has depression, I was diagnosed that too and the antidepressants help. They seem to calm the pain down too as well as stop my mood going too low, I think depression can make pain 'feel' worse and hopefully he will get relief from the depression (emotional pain) and some of the physical pain too. If you and/or Jason want to talk about it or anything my addy is tarmacsurfer@aol.com mail any time. If you do mail put something in the subject line as mail from unknown senders is usually spam and deleted unread, thanks and good luck!
Dave
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Nancy (Eric's Mom)
- Posts: 90
- Joined: Mon Nov 05, 2001 10:06 am
Re: We're back with good news (we hope!)
Hi Amy and Jason
I just want to add that we met Dr. Belzberg at the UBPN camp on Labor Day weekend and we were very impressed. We managed to get some one on one time with him and we thought he really understood the pain issues and felt confident that he was the man for the DREZ. My son (TBPI 3 years ago) knows that it can be an option for him in the future. No immediate plans for it but it's nice to know it's there if need be. Good Luck. Keep us posted.
I just want to add that we met Dr. Belzberg at the UBPN camp on Labor Day weekend and we were very impressed. We managed to get some one on one time with him and we thought he really understood the pain issues and felt confident that he was the man for the DREZ. My son (TBPI 3 years ago) knows that it can be an option for him in the future. No immediate plans for it but it's nice to know it's there if need be. Good Luck. Keep us posted.
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: We're back with good news (we hope!)
Hello Amy and Jason,
I am going to have the DREZ procedure done on 7/12/04, I was hoping that you could tell me "what" happened to Jason? I am very worried about having this surgery done, and can not find a positive article any where on the web. Please tell me what Jason's outcome has been? Your posting was in 03 and the november surgery is already here and done. I want to thank you in advance for you open and frank note on this subject. I am going to have it done by Dr. Osenbach at Duke U in NC. Any words either negative or positive would be helpful..
Kindest Regards,
Kenny G.
I am going to have the DREZ procedure done on 7/12/04, I was hoping that you could tell me "what" happened to Jason? I am very worried about having this surgery done, and can not find a positive article any where on the web. Please tell me what Jason's outcome has been? Your posting was in 03 and the november surgery is already here and done. I want to thank you in advance for you open and frank note on this subject. I am going to have it done by Dr. Osenbach at Duke U in NC. Any words either negative or positive would be helpful..
Kindest Regards,
Kenny G.