Hello all,
Quick update...TBPI due to total shoulder replacement surgery in 2007...neurolysis surgery 7/2008 was unsuccessful. I am currently dealing with subluxing, pain, the constant sensation that someone is trying to pull my shoulder out of joint, weakness, atrophy, etc. I have recently (last few months) developed a near-constant twitch in my thumb and index fingers...not painful, just annoying...anyone else experience this?
FYI...I've been seeing my doctor every 2-3 months. We are in the "wait and see what develops" mode.
Thanks,
MB
twitching thumb and index finger??
-
Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: twitching thumb and index finger??
I am unfamiliar what a neurolysis surgery is. If you had the injury happen in 2007 and surgery in 7/08, then the "wait and see" mindset is a bit questionable to me. Muscle twitching can happen for several reasons. If that muscle worked fine before and never twitched, and now is all of a sudden, then I'd guess it's nerve impingement or vitamin deficiency. That's a guess. My thumb and index finger twitch regularly, but they have limited movement and sensation and are in constant pain, so it's chalked up to nerve injury/scar tissue/limited innervation. Basically the nerves are not getting full signal through to the muscles, so movement becomes erratic. Like when a light bulb flickers because of a short in the wire.
What did your surgeon say was the expected time of return of function? It all depends on how long the nerves have to regenerate from point of surgery/injury to the targeted muscle(s). If a nerve is damaged at the shoulder area and has incapacitated your hand, then the amount of time to regenerate correlates to the distance from shoulder to hand. Nerves regenerate about one inch per month.
I'm curious who did your surgery? Was it the same surgeon that caused the injury? Which hospital?
Good Luck,
Chris
What did your surgeon say was the expected time of return of function? It all depends on how long the nerves have to regenerate from point of surgery/injury to the targeted muscle(s). If a nerve is damaged at the shoulder area and has incapacitated your hand, then the amount of time to regenerate correlates to the distance from shoulder to hand. Nerves regenerate about one inch per month.
I'm curious who did your surgery? Was it the same surgeon that caused the injury? Which hospital?
Good Luck,
Chris
Re: twitching thumb and index finger??
Chris,
Thanks so much for your reply. Neurolysis is removing the scar tissue from around the nerves. Both my ortho doc (he did the TSR) and a neurosurgeon did the neurolysis surgery. But, unfortunately, it didn't work. My physical therapist said that if nerves are compressed too long, they may not become functional again, even if scar tissue is removed. Mine were compressed for a year.
My doctors have said that two years is the time line for return of function or not. The middle of July will be two years.
I'm guessing that b/c my shoulder is subluxing so much, it's pressing on the nerves affecting my hand, so they're becoming impinged like you said. I don't know what my surgeons will say when I go back at the end of June but I don't like the fact that I'm getting worse, not better, and that I have a brand new shoulder that I am unable to use.
Any ideas what could be the next step for me?
Thanks,
MB
Thanks so much for your reply. Neurolysis is removing the scar tissue from around the nerves. Both my ortho doc (he did the TSR) and a neurosurgeon did the neurolysis surgery. But, unfortunately, it didn't work. My physical therapist said that if nerves are compressed too long, they may not become functional again, even if scar tissue is removed. Mine were compressed for a year.
My doctors have said that two years is the time line for return of function or not. The middle of July will be two years.
I'm guessing that b/c my shoulder is subluxing so much, it's pressing on the nerves affecting my hand, so they're becoming impinged like you said. I don't know what my surgeons will say when I go back at the end of June but I don't like the fact that I'm getting worse, not better, and that I have a brand new shoulder that I am unable to use.
Any ideas what could be the next step for me?
Thanks,
MB
-
Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: twitching thumb and index finger??
You have to get yourself to a Brachial Plexus Injury specialist pronto! I wouldn't bother ever seeing your neurosurgeon again, if "wait and see" is the best he has to offer. There is a lot of wait and seeing going on with nerve injuries, but there are diagnostic procedures that can give a better idea of how the recovery is going on.
What part of the country do you live in?
I live in Los Angeles, CA and traveled all over this country and to Europe to find the best that I could, and my search ended at the Mayo Clinic in Rochester, Minnesota. There are other talented and respected surgeons out there, it's just a question of where you live and where you are willing to travel. For me, my right arm had no limit in what I'd do, so the answer was easy, for others it's different.
http://ubpn.org/medicalresources/mayo-contact.html
If you want to find out if anything is salvageable, you have to see qualified specialists that focus on this injury. Nothing is guaranteed, but at least see if anything is possible before the window is shut. It may be too late as it is already.
Best,
Chris
What part of the country do you live in?
I live in Los Angeles, CA and traveled all over this country and to Europe to find the best that I could, and my search ended at the Mayo Clinic in Rochester, Minnesota. There are other talented and respected surgeons out there, it's just a question of where you live and where you are willing to travel. For me, my right arm had no limit in what I'd do, so the answer was easy, for others it's different.
http://ubpn.org/medicalresources/mayo-contact.html
If you want to find out if anything is salvageable, you have to see qualified specialists that focus on this injury. Nothing is guaranteed, but at least see if anything is possible before the window is shut. It may be too late as it is already.
Best,
Chris
Re: twitching thumb and index finger??
Hi Chris,
I've had three EMG's, all of which were abnormal. I've also had a bunch of x-rays to check on the position of my shoulder replacement, a CAT scan and a bone scan (for a suspected nerve disease (RSD?...which was negative). I've always thought I was getting good care, but your thoughts and advice have me thinking I may need to switch gears.
I live in New Hampshire, so Boston is only 45 minutes away. Do you know of anyone I could see there?
Thanks,
MB
I've had three EMG's, all of which were abnormal. I've also had a bunch of x-rays to check on the position of my shoulder replacement, a CAT scan and a bone scan (for a suspected nerve disease (RSD?...which was negative). I've always thought I was getting good care, but your thoughts and advice have me thinking I may need to switch gears.
I live in New Hampshire, so Boston is only 45 minutes away. Do you know of anyone I could see there?
Thanks,
MB
-
Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: twitching thumb and index finger??
MB,
Dr. Waters deals with children primarily, so he may not see you, but if you can get in to see him go soon.
http://ubpn.org/medicalresources/wa ... ntact.html
Otherwise, depending on the affection you have for the use of your arm, get in the car and go to:
http://ubpn.org/medicalresources/us-bpi.html
Johns Hopkins
http://ubpn.org/medicalresources/be ... ntact.html
or NYC
http://ubpn.org/medicalresources/wolfe-contact.html
those are the best I know of on the East Coast.
You are really pushing the limit for surgical intervention at this point, if there is anything that can be done. Please understand, that many of "the best" neurosurgeons out there, including here in LA, don't have any real idea how tp deal with an injury to the brachial plexus. Almost all of them say "wait and see", but as folks are waiting, they are losing precious time in which they might get a surgery to bring back some kind of return of function. If I had listened to the best surgeons on the west coast, I most likely would have had my arm amputated, because the minimal movement they would have been satisfied with would have left my arm useless to me (my personal opinion). I have useful function now, but it is still a gross comparison to what was my normal function.
By the way, I grew up in Hanover NH, and am heading home next month for 10 days and can't wait. Your predicament is the exact reason I stay on these boards 6 years after the fact. 90% of the advice given by doctors for this injury is misguiding, or dated. Take good care of yourself.
Chris
Dr. Waters deals with children primarily, so he may not see you, but if you can get in to see him go soon.
http://ubpn.org/medicalresources/wa ... ntact.html
Otherwise, depending on the affection you have for the use of your arm, get in the car and go to:
http://ubpn.org/medicalresources/us-bpi.html
Johns Hopkins
http://ubpn.org/medicalresources/be ... ntact.html
or NYC
http://ubpn.org/medicalresources/wolfe-contact.html
those are the best I know of on the East Coast.
You are really pushing the limit for surgical intervention at this point, if there is anything that can be done. Please understand, that many of "the best" neurosurgeons out there, including here in LA, don't have any real idea how tp deal with an injury to the brachial plexus. Almost all of them say "wait and see", but as folks are waiting, they are losing precious time in which they might get a surgery to bring back some kind of return of function. If I had listened to the best surgeons on the west coast, I most likely would have had my arm amputated, because the minimal movement they would have been satisfied with would have left my arm useless to me (my personal opinion). I have useful function now, but it is still a gross comparison to what was my normal function.
By the way, I grew up in Hanover NH, and am heading home next month for 10 days and can't wait. Your predicament is the exact reason I stay on these boards 6 years after the fact. 90% of the advice given by doctors for this injury is misguiding, or dated. Take good care of yourself.
Chris
Re: twitching thumb and index finger??
I did the wait and see and by the time I said enough and went in search of a specialist it was too late. None would not even see me. I am nine years out and to date I have never seen a specialist. I recovered some on my own but I will never know what could have been.
This injury is such you have to got to see a specialist. In the US and other parts of the world we are behind with this injury.... Doctors figure we are a rarity and thus they don't keep up on what it is even.
I hurt my legs a little over a year ago and I explained my arm to the orthopedic. The orthopedic walked out of the room and not even five minutes later walked back into the room carrying crutches saying I was to walk with them. I again explained my arm was paralyzed and his answer was, "Just make it move." Seriously he was not the only medical person who did not understand the reality of what paralysis is either.
Its sad that medical professinals have not got a clue but it is a reality that has to be understood. This injury requires a specialist that knows this injury. Please just go.
This injury is such you have to got to see a specialist. In the US and other parts of the world we are behind with this injury.... Doctors figure we are a rarity and thus they don't keep up on what it is even.
I hurt my legs a little over a year ago and I explained my arm to the orthopedic. The orthopedic walked out of the room and not even five minutes later walked back into the room carrying crutches saying I was to walk with them. I again explained my arm was paralyzed and his answer was, "Just make it move." Seriously he was not the only medical person who did not understand the reality of what paralysis is either.
Its sad that medical professinals have not got a clue but it is a reality that has to be understood. This injury requires a specialist that knows this injury. Please just go.
Re: twitching thumb and index finger??
Thanks for the replies...you've given me lots to think about.
Chris, you sound like you've been very aggressive in seeking a solution to your BPI and I was the same way when I was looking to resolve my shoulder issues so that I could get back to my VERY active lifestyle (mom of 5, soccer coach and player, golfer, runner, b-baller, ping ponger, swimmer...you name it, I did it!). Unfortunately, I was one of the 4% of total shoulder replacements that suffered nerve damage as a result of the surgery. And since then, I've been following the advice of my doctors b/c I really feel that they are trying to help me. But, like you said, they are not BPI specialists, and despite their best intentions, they may not know what is truly best for me.
I will look into the docs/web-sites you posted...I really appreciate it! I need to do something very soon...I was clipping my fingernails last night and when I tried to use the hand on my affected side, I hardly had the strength to do it...I was quite alarmed. That's a new development and one that has me very anxious.
BTW, I live in Manchester, NH. I grew up in Mass. but my husband dragged me north when we got married!
Thanks again for all your help,
MB
Chris, you sound like you've been very aggressive in seeking a solution to your BPI and I was the same way when I was looking to resolve my shoulder issues so that I could get back to my VERY active lifestyle (mom of 5, soccer coach and player, golfer, runner, b-baller, ping ponger, swimmer...you name it, I did it!). Unfortunately, I was one of the 4% of total shoulder replacements that suffered nerve damage as a result of the surgery. And since then, I've been following the advice of my doctors b/c I really feel that they are trying to help me. But, like you said, they are not BPI specialists, and despite their best intentions, they may not know what is truly best for me.
I will look into the docs/web-sites you posted...I really appreciate it! I need to do something very soon...I was clipping my fingernails last night and when I tried to use the hand on my affected side, I hardly had the strength to do it...I was quite alarmed. That's a new development and one that has me very anxious.
BTW, I live in Manchester, NH. I grew up in Mass. but my husband dragged me north when we got married!
Thanks again for all your help,
MB
Re: twitching thumb and index finger??
Call Dr. Wolfe at HHS in NYC. He's highly qualified, great bedside manner, and is great at answering questions.
phone: 212.606.1529
phone: 212.606.1529
Re: twitching thumb and index finger??
My husband's injury 26 months ago was different in that his shoulder was only mildly affected, the denervation begins mid-way b/t elbow and shoulder ( sorry its late, I'm tired and cant remember the precise term used) no avulsions.
He does have minimal Range of motion but no stregnth in wrist and hand. He has a similar thumb twitch like you described, the doctors have little to say other than its the injured nerves reacting.
It varies as to how severe the twitch is but can be constant at time, no pain involved and nothing specific that can be done.
Sorry not much help but you're not alone in it happening.
He does have minimal Range of motion but no stregnth in wrist and hand. He has a similar thumb twitch like you described, the doctors have little to say other than its the injured nerves reacting.
It varies as to how severe the twitch is but can be constant at time, no pain involved and nothing specific that can be done.
Sorry not much help but you're not alone in it happening.