I know this may seem pety to those who have lost so much but I guess the depression is keeeping me down about this.
I finally got to see a specialist (Shenaq) last week and was told that I was not a surgical canidate. I have full ROM with sensation loss in my hand and forearm. My shoulder is a good 1" lower than the other but compared to most of you I should be nothing but thankful for all that I have, yet....
It will be 1 year in just a few weeks of the accident and my pain is still 7/8 most days. I am on percs and something for the depression but I just don't feel I can give up yet.
I just wanted to know from my new "earned" family if I should just be thankful and rejoice in what I have and give up seeking a "cure"
Thanks for joining my pity party and letting me share with the only people who I know understand.
Shanna
When to stop
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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: When to stop
Hey, one year out is very early days! I wouldn't give up yet if I were you.
Dr Shenaq is a great doctor for obstetric bpi and sees hundreds if not thousands of kids with birth injuries. He also sees a few trauma injured adults but they are not his team's main area of expertise, and the pain issues are not as big a focus as they are in teams that deal mainly with adult trauma injuries. I don't know if they have a pain clinic at TCH, trauma injuries need help from a pain specialist. Some obstetric bpi doctors will not see trauma injured adults for this reason, they refer adult injuries to trauma specialists whose expertise includes the pain and depression side of things as well as repairs to the arm.
If I were you I would seek a second opinion from a team that specialise in adult onset injuries such s the Mayo Clinic (Ellenb will probably jump in with contact details...) or Drs Kline and Teil in Louisiana. There are others, try looking in the medical resources section of the homepage of this site and check in the listings whether they are adult or birth injury specialists. A trauma bpi doctor will understand that the pain is the worst part and may be able to give you some hope of when yours might subside based on previous experience of cases like yours. The two centres I have named are easily the most experienced in the US in adult cases but there must be others.
The sensation may return in your hand and lower arm, there is plenty of time for that to happen, the pain also tends to decrease for most of us within 3 years of injury. Please don't give up hope, and please realise you really are very much still in recovery, there is a lot of time for things to settle down.
Meeting other adult injured people through clinics at tbpi specialists is always a great boost, too.
Yes, rejoice your injury is not worse, but be prepared for more improvements too. Here's hoping you get some relief SOON :0)
Take care and let us know how you go
Jen NZ
Dr Shenaq is a great doctor for obstetric bpi and sees hundreds if not thousands of kids with birth injuries. He also sees a few trauma injured adults but they are not his team's main area of expertise, and the pain issues are not as big a focus as they are in teams that deal mainly with adult trauma injuries. I don't know if they have a pain clinic at TCH, trauma injuries need help from a pain specialist. Some obstetric bpi doctors will not see trauma injured adults for this reason, they refer adult injuries to trauma specialists whose expertise includes the pain and depression side of things as well as repairs to the arm.
If I were you I would seek a second opinion from a team that specialise in adult onset injuries such s the Mayo Clinic (Ellenb will probably jump in with contact details...) or Drs Kline and Teil in Louisiana. There are others, try looking in the medical resources section of the homepage of this site and check in the listings whether they are adult or birth injury specialists. A trauma bpi doctor will understand that the pain is the worst part and may be able to give you some hope of when yours might subside based on previous experience of cases like yours. The two centres I have named are easily the most experienced in the US in adult cases but there must be others.
The sensation may return in your hand and lower arm, there is plenty of time for that to happen, the pain also tends to decrease for most of us within 3 years of injury. Please don't give up hope, and please realise you really are very much still in recovery, there is a lot of time for things to settle down.
Meeting other adult injured people through clinics at tbpi specialists is always a great boost, too.
Yes, rejoice your injury is not worse, but be prepared for more improvements too. Here's hoping you get some relief SOON :0)
Take care and let us know how you go
Jen NZ
Re: When to stop
Shanna,
What was the reason given by Shenaq re not being a candidate for surgery?
Ellen
What was the reason given by Shenaq re not being a candidate for surgery?
Ellen
Re: When to stop
Hi Ellen,
None really, he just seemed disintersted after he saw that I had full ROM even though in cause bad pain. He said I should see an ortho for possible a broken bone to make my shoulder slope but I assured him all x-rays had been done and no broken bones.
Then he kept saying 6-8 months he would expected full recovery and I had to remind he it had been 11 already and at that he didn't say much else but that the course of treatment I was on is what he would prescribe and left the room?
I have called and spoke to Angel his assist. with questions that didn't make much sense to me (ei the bone thing) She said she would try to talk to him and clear things up for me but I haven't heard from her yet.
None really, he just seemed disintersted after he saw that I had full ROM even though in cause bad pain. He said I should see an ortho for possible a broken bone to make my shoulder slope but I assured him all x-rays had been done and no broken bones.
Then he kept saying 6-8 months he would expected full recovery and I had to remind he it had been 11 already and at that he didn't say much else but that the course of treatment I was on is what he would prescribe and left the room?
I have called and spoke to Angel his assist. with questions that didn't make much sense to me (ei the bone thing) She said she would try to talk to him and clear things up for me but I haven't heard from her yet.
Re: When to stop
I followed the links to the Mayo clinic and just got a call from the Mayo in AZ and they said they do not treat car accident injuries due to the case that may take the docs out of the clinic.
Now who should I try. I am NOT just seeking a quick fix like surgery for any thing. I just want to make sure I get the straight answers about what my injury is.
Dr Shenaq only touched my shoulder to move it. I don't think he even noticed the slope.
Any help?
Shanna
Now who should I try. I am NOT just seeking a quick fix like surgery for any thing. I just want to make sure I get the straight answers about what my injury is.
Dr Shenaq only touched my shoulder to move it. I don't think he even noticed the slope.
Any help?
Shanna
Re: When to stop
I expect your case is challenging for the very reason that you have full ROM - so you don't meet the "profile" of a typical bpi patient.
Drs Kline & Tiel in New Orleans are excellent. Dr. Kline (literally) wrote the bpi book that is probably still used in med school. They have a lot of experience & may have encountered a case like yours before.
Their contact info is in the medical resources section of this site.
Keep us posted.
Ellen
Drs Kline & Tiel in New Orleans are excellent. Dr. Kline (literally) wrote the bpi book that is probably still used in med school. They have a lot of experience & may have encountered a case like yours before.
Their contact info is in the medical resources section of this site.
Keep us posted.
Ellen
Re: When to stop
Hi Shanna
Wow can I relate to how you are feeling!
I have been searching for answers for 5 years and sometimes I begin to think, as you have, that maybe I need to just let it go, keep popping the pain pills and struggle on as best I can...but then I think...hey, I am only 46...I have a lot of years ahead and I am not willing to lie down quietly accepting that this is the best there is!
I will soon be trying a new form of accupuncture called IMS that a friend has found to be very helpful in lessening her pain and I will be starting pool therapy in the Spring.
Please do not give up on yourself! When nerves are injured, a year is really not such a long time (although I know it feels like an eternity). Nerves heal very slowly.
Have you had EMG/NCV testing or MRI's. Just because you have no broken bones does not mean there is no injury to the nerves.
Hopefully others can help you find a doctor who will give your injury the attention it deserves.
In the meantime, listen to your body and do not push yourself through the pain. I for one have found typing to be one of my most aggravating factors and so I now spend much less time on the boards doing just that.
Yes, I agree, with time the pain will ease up considerably. For me it was around the 18 month mark.
Please hang in there and don't give up the fight!
As they say on those hair colouring commercials...Because you are worth it!!
Wow can I relate to how you are feeling!
I have been searching for answers for 5 years and sometimes I begin to think, as you have, that maybe I need to just let it go, keep popping the pain pills and struggle on as best I can...but then I think...hey, I am only 46...I have a lot of years ahead and I am not willing to lie down quietly accepting that this is the best there is!
I will soon be trying a new form of accupuncture called IMS that a friend has found to be very helpful in lessening her pain and I will be starting pool therapy in the Spring.
Please do not give up on yourself! When nerves are injured, a year is really not such a long time (although I know it feels like an eternity). Nerves heal very slowly.
Have you had EMG/NCV testing or MRI's. Just because you have no broken bones does not mean there is no injury to the nerves.
Hopefully others can help you find a doctor who will give your injury the attention it deserves.
In the meantime, listen to your body and do not push yourself through the pain. I for one have found typing to be one of my most aggravating factors and so I now spend much less time on the boards doing just that.
Yes, I agree, with time the pain will ease up considerably. For me it was around the 18 month mark.
Please hang in there and don't give up the fight!
As they say on those hair colouring commercials...Because you are worth it!!
Re: When to stop
Thank you all so much for your input. It means alot.
Yes, I have had the MRI (which showed nothing) then I convinced them to do another EMG and that one showed the damage. I have done PT without much success just more pain, but I have been receiving massage therapy from a medical message theripist that comes to my house 2X a week. He is learning with me about my injury as is my DO and together we are finding out what helps and what doesn't.
I had been on hydocodone as needed (which was many everyday) but since visiting here I asked about Percs. and have been getting much relief without the side effects. I feel like I have gotten some of my life back. My fear is that with such stong drugs on board I may over do it with out knowing it and cause another flare up. Any suggestions on what besides this painful typing that is sure to irritate these sensitive nerves?
Know that all of your words bring much comfort.
shanna
Yes, I have had the MRI (which showed nothing) then I convinced them to do another EMG and that one showed the damage. I have done PT without much success just more pain, but I have been receiving massage therapy from a medical message theripist that comes to my house 2X a week. He is learning with me about my injury as is my DO and together we are finding out what helps and what doesn't.
I had been on hydocodone as needed (which was many everyday) but since visiting here I asked about Percs. and have been getting much relief without the side effects. I feel like I have gotten some of my life back. My fear is that with such stong drugs on board I may over do it with out knowing it and cause another flare up. Any suggestions on what besides this painful typing that is sure to irritate these sensitive nerves?
Know that all of your words bring much comfort.
shanna
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Karl w/ a K
- Posts: 154
- Joined: Mon Sep 15, 2003 8:48 pm
Re: When to stop
Shanna,
You are only one year into your injury. You still have time to get opinions from other Drs. But if you're looking for a cure, start with the depression. Now that is something you will want to rid yourself of, and you can. I tried been depressed, and it really sucked. So I gave it up. Life gets much better when you decide not to be depressed. Go have some fun, and don't hold yourself back. The battle is between your ears...Cheers...Karl...
You are only one year into your injury. You still have time to get opinions from other Drs. But if you're looking for a cure, start with the depression. Now that is something you will want to rid yourself of, and you can. I tried been depressed, and it really sucked. So I gave it up. Life gets much better when you decide not to be depressed. Go have some fun, and don't hold yourself back. The battle is between your ears...Cheers...Karl...
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: When to stop
I see you (and others) are bothered by typing. I am left BPI complete avulsion 16 months post accident so nothing on the left side works and I get chronic pain as a bonus. Anyway, typing one-handed is slow and gets tedious. My solution is voice recognition software, it has become remarkably accurate. If you speak clearly and not too fast, it will usually only make phonetic mistakes. I use Dragon naturally speaking version 8.0 so I can't vouch for other products. If you've tried voice recognition software in the past, don't let that dissapointing experience bias your thoughts. This stuff allows you to "type" faster than you ever could using your hands!