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Re: First time here

Posted: Sun Dec 18, 2005 12:08 am
by admin
I didn't get any reply back yet...
So please if someone has gone through this injury and surgeries...plese reply me back, as I am very keen to know about the results and outcome of these injuries. My husband has 4 nerve root avulsion, and it's seven months now after the surgery, he is still going to physical therapy, but there is no improvement noticiable, I would like to know that how much time it takes, and how much are the success rates.
Thanks,

Shafali.

Re: First time here

Posted: Sun Dec 18, 2005 12:47 pm
by EllenB
Hi Shafali,

Ask the doctor how much distance the nerves have to grow in order to connect with the muscle. Nerves grow very slowly - about 1 inch a month - so that might explain the delay in seeing any muscle movement. When John's nerves finally connected with muscle, at first we only saw a tiny twitch. The first time John was in a swimming pool, so gravity wasn't working against him - and he realized he could move his arm. Maybe your husband could get access to a swimming pool & see if he can move his arm in the water.

Take care,

Ellen

Re: First time here

Posted: Sun Dec 18, 2005 3:01 pm
by lizzyb
Shafali,

I didn't get any sign of anything until 9 months after my surgery, and that was just a vague itchy twitching feeling. It took a further 4-5 months to get my bicep working as good as it is right now.

It depends on the type of surgery he has had. Some surgical procedures do not show a positive result for up to a year, some even longer. It also does depend on age, and to a certain degree, firness of the patient. If you are really worried, contact the surgeon or his team and tell them your concerns.

Also check on whether he should be doing physical therapy. It is very important while waiting for the results of surgery to keep the arm, hand and fingers supple and keep the ROM going (ROM= range of movement)

Hope this helps a bit. Feel free to email me if you wish liz@tbpi-group.org I have had a TBPI for nearly 13 years now and am the Chairwoman of the TBPI Group which is a registered charity here in the U.K. We have many members and between us all have vast experience of these injuries, so ask as many questions as you like. We will do our best to help.

Lizzy B :0)

Re: First time here

Posted: Mon Dec 19, 2005 10:34 am
by susanfrey
Shafili,

Please check your e-mail as I've sent you a message regarding Paul St. John, a Neuromuscular Therapist in St. Petersburg, Florida who recently cured my 17 year old daughter of 4 1/2 years of chronic pain. The man is a godsend, a true miracle worker who has given Heather her life back again.

Susan Frey
soyasolutions@yahoo.com
239 898-8505


Re: First time here

Posted: Mon Dec 19, 2005 11:12 am
by admin
Hey all,
First of all thank you so very much for sending me the replies back.
My husband is 33 yrs of age, and doctor did 2 surgeries ..in first he took gracilis from his inner left thigh and put it in his arm from shoulder to elbow,for the movement of shoulder and elbow flexion, and in second he again took muscle from his right thigh( gracilis) and put in arm for the movement of his wrist hand and fingers, and also he took some donor nerves from his chest, i guess under the rib cage near lungs, and he hooked that to the muscle that he transferred in 2nd surgery.
My husband's surgeries were really long ..the first was of 18 hrs in OT and the second was for 15 hrs.
I mean he has gone through a lot already and more than that he has excruciating nerve pain going on all the time, for which he is seeing the pain control doctor but of no help.
We have 2 little boys one is 2 yrs and the other is almost 11 months old, and it is so hard when I see them going to their father and asked him to pick and play....
If someone has gone through the same injury like my husaband with avulsion of all nerve roots, plesae share ur story and the recovery with us as of now he is loosing all of his hope and is terribly depressed!!
Thanks,
Shafali.
shafalipalhan@yahoo.com
757-636-1981

Re: First time here

Posted: Mon Dec 19, 2005 12:09 pm
by admin
Ellen
If you don't mind, Can you please give me your contact no. or if you can call me at my number.
As ur son's injury is pretty much similar to my husband with nerve root avulsion.
Thanks & Regards,
Shafali.
757-636-1981

Re: First time here

Posted: Mon Dec 19, 2005 12:54 pm
by admin
hey Lizzy
Can I have your contact no. of U.K, or see if you can call me back .
Or if you can e-mail me personally on my id and tell me little bit of details about yours...like what kind of injury you had, was there nerve root avulsion involved etc.
Thanks& regards,
Shafali
757-636-1981
shafalipalhan@yahoo.com

Re: First time here

Posted: Mon Dec 19, 2005 2:16 pm
by lizzyb
Hi Shafali,

I do feel for you and your husband and truly do know what you are both going through.

Have a look at the TBPI Group website. http://www.tbpi-group.org Click onto 'Community' and 'Resources' I think it may help as we have many stories on there which are all about people who have serious injuries, some like your husband and who have not stopped this from living their lives to the full.

Some of us, including me, have all 5 major nerves avulsed and have found that life is far far better now than I could have even begun to think about at the start of this life with a TBPI.

The surgery your husband has had is great and the good news is that it is usually very successful. Having a very postive attitude at this stage is very important..it's crucial, but very difficult I know to keep focussing on the positives and try not to dwell on what has happened or what might have been.

For me, personally, my major positive is the fact that I survived such a major accident at all, and have lived to see my Grandchildren, and to do so many things that I never thought possible, even when I had two working arms.

I think you are great for reaching out on your husbands behalf like this. Again, if there is anything I can do, please don't hesitate to email me. liz@tbpi-group.org

Lizzyb


Re: First time here

Posted: Mon Dec 19, 2005 10:29 pm
by admin
Thanks Lizzy B
And I will check this website too..
But let me ask you that...how much functions you have gained back in ur arm including ur hand?..and also how much time it took for the recovery?
Please answer me back, whenever you get a chance.
Thanks,
Shafali.

Re: First time here

Posted: Tue Dec 20, 2005 4:49 am
by admin
I am the 17-year old son of Pfaye. I am some-what determined to do my exercises. I am, at times, lazy but I find time to work it out. As of now it's been about a month and I still have no feeling and very little muscle control. I'm starting to get very littlr control in my forearm, but for my bicep I am clueless until it comes back. I've been told many times that nerves take so long to heal. So, I'm just playin the waiting game. As for life, I've taught my self how to do many things. I get around just fine, but it's just a smigen tougher. I'll be glad to get my arm back because it's hard to type one handed. :) I would also like start working out again. For Physical Therapy I have been going 3 times a week. I put myself in pain to help get more movement in my shoulder. Thats how I've been doing so I thought I'f let you all know. If you have any further questions about my shoulder or questions that lead to my injury please feel free to contact my mother ( Pfaye, topic starter) and I'll get back on and be glad to answer any questions. Thank you.


Derrick Smith