bpi-when is it too late to see specialist?
bpi-when is it too late to see specialist?
It was a year ago Tuesday May 5 I rolled my jeep (car ahead of me on highway decided to turn left and I went to right side of it to miss hitting from behind-tried to prevent right roll and overcompensated and rolled nose over nose down highway-do not remember-was told)and broke 3 bones in my neck-C5-7 and had already had 3 neck surgeries from herniated discs in same area-also broke right eye orbital bone,upper arm, wrist left arm and metacarpals L hand. I have BPI and the nerve pain is on both shoulders although it is just left one that subluxed. No surgeries except a tenosynvitis surgery right wrist probably from cane use when I had halo cast on. IS it too late to see a BPI specialist? Mayo in Rochester MN is 2 hrs away and I read it is best to see a spec before a yr is up. I hurt so bad and I am just weary of the "wait and see" the neurologist and rehab doc give. I am on Neurontin, Oxycontin long acting and Percocet for breakthrough pain although pain control is poor, but varied. Sometimes nerve pain releases after PT myofascial release massage and electrical stim and pool therapy, but not permanently. I found these boards awhile back, been lurking, this is my first post. I am in Minnesota USA and am a 56 yr old mom and grandmother-was an RN prior, but disabled now! Never heard of BPI until a few months ago...It is a lonely lifestyle. Thank you to all who post as watching the boards on Traumatic BPI is a help to see I am not alone! Life changes in a heartbeat, but I am a believer that there is a God and I am not Him! He is what I truly think gets me thru each day :>)Bless His Name! Thanks for the advice ahead of time...
Re: bpi-when is it too late to see specialist?
Hi Jannie and welcome to the club that nobody wants to be a member of. 
) I just stumbled in here myself a week or so ago and it really helped my psyche knowing there are others that are battling the same/similar issues.
I'm not a neurosurgeon, but after reading through many of the old posts, there appear to be people similar to yourself who were unable to get to a specialist straight away, so I think the 2 hr trip is mandatory for you. There was one patient that was treated by the surgeon who worked on me (Dr. Wolfe, Hospital for Special Surgery) that, according to the HSS website, didn't have the surgery for 16 years!
I'm sure others will chime in, but I think you have to make the appt and trip to the Mayo Clinic, esp. if it is only 2 hr. away.
Frank
PS - here is the story on the patient at HSS
http://www.womensportsmedicine.org/12221.asp
) I just stumbled in here myself a week or so ago and it really helped my psyche knowing there are others that are battling the same/similar issues. I'm not a neurosurgeon, but after reading through many of the old posts, there appear to be people similar to yourself who were unable to get to a specialist straight away, so I think the 2 hr trip is mandatory for you. There was one patient that was treated by the surgeon who worked on me (Dr. Wolfe, Hospital for Special Surgery) that, according to the HSS website, didn't have the surgery for 16 years!
I'm sure others will chime in, but I think you have to make the appt and trip to the Mayo Clinic, esp. if it is only 2 hr. away.
Frank
PS - here is the story on the patient at HSS
http://www.womensportsmedicine.org/12221.asp
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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: bpi-when is it too late to see specialist?
Jannie... it is NOT to late to see a BPI doctor! I did not have my first surgery until almost a year after my accident. Mayo, in my opinion, is the place to be! They can work wonders there. Please don't forget that each case is different and that everyone gets a different outcome!
We are here for the same reason, we have this injury! We are here to support each other and we do that as best we can! That is the purpose of UBPN!
Sad as it is, we are glad that you are here!!
Best of luck and please keep us posted!
Courtney
We are here for the same reason, we have this injury! We are here to support each other and we do that as best we can! That is the purpose of UBPN!
Sad as it is, we are glad that you are here!!
Best of luck and please keep us posted!
Courtney
Re: bpi-when is it too late to see specialist?
Thank you very much for the feedback. I do appreciate your advice. I will contact Mayo and try to get in. Anyone know how far out they are in appts? I am hopeful for more recovery as this pain is unbearable at times. It is hard also when the subluxing arm improves/then gets bad again/then improves...etc.etc. It is as if this whole thing is a roller coaster ride-at it is hard enough going anywhere in a car. Not driving yet after a yr, feel so many emotional changes. But reading this board helps.
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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: bpi-when is it too late to see specialist?
The Mayo's schedule changes according to patient influx, but for the most part, they'll not be able to see you immediately. I would get to them ASAP if I were you. It is the place to go for TBPI. Please don't listen to other doctors anymore about the "lets wait and see" routine.
Call the Mayo every few days and check to see if any cancellations have come up if your initial appointment is far off. I've done this and twice gotten in to see the BPI Team there with in a week, instead of over a month.
I wouldn't hesitate a moment more from getting proper attention for you injury.
Best of Luck,
Christopher
http://ubpn.org/medicalresources/mayo-contact.html
Minnesota BPI Specialists/Clinics
Brachial Plexus Clinic, Mayo Clinic
Dr. Robert Spinner, Dr.Allen Bishop, Dr. Alex Shin
200 First Street SW
Rochester, MN 55905
phone: 507-266-0537, 507-284-2511
fax: 507-284-8897
Call the Mayo every few days and check to see if any cancellations have come up if your initial appointment is far off. I've done this and twice gotten in to see the BPI Team there with in a week, instead of over a month.
I wouldn't hesitate a moment more from getting proper attention for you injury.
Best of Luck,
Christopher
http://ubpn.org/medicalresources/mayo-contact.html
Minnesota BPI Specialists/Clinics
Brachial Plexus Clinic, Mayo Clinic
Dr. Robert Spinner, Dr.Allen Bishop, Dr. Alex Shin
200 First Street SW
Rochester, MN 55905
phone: 507-266-0537, 507-284-2511
fax: 507-284-8897
Re: bpi-when is it too late to see specialist?
I have received a recent bpi (9 weeks ago) and it is not permanent. But I do have one question... Is it possible to get a surgery to speed the recovery if the damage is not seemingly permanent?
Re: bpi-when is it too late to see specialist?
Hello Janet! And welcome to UBPN!!!! I am kinda like you-I wonder so many things, as even tho my injury with the broken neck and other bones is over a yr ago, I only recently learned of BPI. I guess a specialist can answer your questions as they do at Mayo-but also others on this board. I would start a post that the topic says " Any surgery or interventions to speed healing?" and then see what experience folks here have on the issue. I would like to know also! Great Question and I hope there is as it has been over a yr for me and the pain and arm subluxing is difficult, at best...
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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: bpi-when is it too late to see specialist?
> I have received a recent bpi (9 weeks ago) and it is
> not permanent. But I do have one question... Is it
> possible to get a surgery to speed the recovery if
> the damage is not seemingly permanent?
Yes, depending on the type of injury to the nerve. If the nerve is compressed by scar tissue, a tumor, or a bone etc. etc., freeing the nerve up by cleaning the area of compression out may allow the nerve to regenerate better. But this has to be done by a very competent specialist, because it could equally damage the nerve permanently.
If you go down this road, please make sure you see a top notch nerve specialist.
Best of Luck,
Chris
> not permanent. But I do have one question... Is it
> possible to get a surgery to speed the recovery if
> the damage is not seemingly permanent?
Yes, depending on the type of injury to the nerve. If the nerve is compressed by scar tissue, a tumor, or a bone etc. etc., freeing the nerve up by cleaning the area of compression out may allow the nerve to regenerate better. But this has to be done by a very competent specialist, because it could equally damage the nerve permanently.
If you go down this road, please make sure you see a top notch nerve specialist.
Best of Luck,
Chris
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josieclove
- Posts: 4
- Joined: Thu Jul 23, 2009 2:51 am
Re: bpi-when is it too late to see specialist?
yes, it is still possible for you to receive treatment for, and possibly correct your injury, depending on the severity of your injury. you need to go to Dr. Rahul Nath's website. he performed 2 surgeries on my son, and is on the forefront of bpi. he is a genius. i owe much of what my son can do today to Dr. Nath. not to mention much, much, p/t and o/t, but Dr. Nath was the only one who would touch my son. please contact him.
Re: bpi-when is it too late to see specialist?
I'm 17 and 5 1/2 months into my injury and I just got back from appointments at Mayo in Rochester. It was the best desicion I could have made. Like you, the doctors here loved the "wait and see" excuse. My previous doctor didn't even want to see me until december where the Doctors at Mayo have me scheduled for a nerve transplant on September 20th. Please make the drive to Mayo. It will be so worth your time. Good luck!