Hello all. My name is Terri. My daughter is 16 and 5 days ago had a rib resection done at Johns Hopkins by Dr Riefsnyder. I am concerned as the numbness in her 4 th and 5 th fingers is even worse after surgery. Almost debilitating. We were expecting numbness under arm but not this. Her dr has said not to worry yet as this is not uncommon but as a mother of a child who has already been thru so much I am worried. Can anyone shed some light on this? Perhaps ease my mind. I am a nurse and not completely ignorant but TOS is not something I even knew anything about untill Sara was dx with it.

Hi Terri
I hope Sara is doing ok. Tough surgery for a young girl. I had surgery on Feb 4th at MGH with DR.Donahue. My surgery was above my collar bone. My lower arm and hand are really numb still but Dr.Donahue said because of all the manipulation of the nerves while he was cutting out scar and muscle tissue around them it irritates them. He said the numbness could take a couple of months to go away completely. There is another poster "Lisha" that had the surgery a couple of weeks before me and is doing better. You may look up the posts and contact them. I really wish the best for Sara. It is tough recovery but after all the constant pain before there is a feeling of relief being post surgery and tell her it is going to get better from here!

I will keep in touch throughout the recovery as the numbness subsides.

Scott

Hi, Terri,

This has got to be hard for you. As moms, we want to take their hurt away, and TOS surgery is one big boo boo you just cannot fix! But as I'm sure Dr. Riefsnyder has told you, there is recovery from this; it can be a slow process, however. Steady wins the race. (I realize that's not particularly helpful to hear right now, as at only 5 days out, of course Sara is still in an acute postop phase recovery-wise).

As a nurse, I know you understand what an insult major neurovascular surgery is to the mind and body. What Scott says I think is very true, Sara's no doubt got some very angry and irritated little nerves coursing through her thoracic outlet and upper extremity right about now. They are letting her know it, too! The first rib resection is a delicate operation requiring special surgical skill; yet, it still manages to stir everything up in its execution, no matter how skilled and sure the hand of the mighty surgeon may be.

For me, I found as I stumbled along through recovery (from the same surgery your daughter just had), it helped to know that some of those painful (and sometimes bizarre) nerve symptoms were actually signs of healing, as my severely damaged ulnar nerve started to come to life again after being decompressed by the TOS surgery.

Has Sara got some PT or even OT (good for work on the hand) lined up for her, or already begun? Assuming you guys can access someone who is TOS-savvy, and won't have her doing any aggressive stretching or strengthening (at all), no theraband, no traction or UBM, etc. unless and until her pain and other symptoms have been brought down to a manageable level.

But, if she's not already, you might want to think about having her start to do some gentle nerve glides, ROM movements, posture work, and things like that… under the supervision, of course, of a knowledgeable physical terrorist - oops!!! - I mean, therapist (really!), who will probably also have a few tricks up their sleeve in terms of therapeutic stuff she can use at home to make her feel better, like: cold packs (I used frozen bags of peas, as I had traveled out of state for my rib resection) for the surgical site, or wherever she's hurting or spasming; hand putty (she can play with this while watching tv, it'll help her hand issues); container of heated grains of rice (again, for her hand); hot packs (moist heat is best - try alternating hot and cold packs, 20 minute intervals); simple stretches (none to point of pain); deep, diaphragmatic breathing; epsom salt baths. For starters.

Sorry to blather on like this, Terri, but my heart just goes out to Sara and to you. You are both going through a lot right now. I hope that Sara starts to feel better soon. Please stay close and let us know how you each are doing, will you?

Alison

Aiison. I believe Sara ulnernerve is damaged as well. She had things like claw hand prior to surgery. Her surgical pain is improving but that ulnar nerve is giving her a fit. It sounds like neuropathy as she said it burns and is very sensitive to touch. She was doing great with almost no sx until Friday when she decided to try and catch up on some homework and did some writing. now the pain is horrible. I know you mentioned you had a severally damaged ulnar nerve prior to surgery. Can you tell me about that. What were your sx and some of the Bizarre healing processes that you were talking about. Does anything help the pain? there has got to be a better answer then narcs as they just don't work well on this. Prior to surgery she tried Neurontin but the side effect were bad. It made her so depressed Iwe had to take her off. I know there is lyrica but that comes with its own set of side effects. Her follow up isn't until thurs and to be honest the tos surgery part is going well its the damaged ulcer nerve that is giving her problems. Im afraid her surgeon is going to send us to yet another dr and start all over again. It is so frustrating

If she can practice & use the built in voice recognition software on a computer to do the "writing" portions of homework it might be a good thing for her to try.

Depending on how recovery goes, you may want to look into online schools. She can take breaks as needed & no books to carry or backpacks...

The body position used in writing and/or or even reading /holding books is a static posture.
The neck has to hold the weight of the head the farther forward & downward as we use it, that is about 12 or so lbs balanced on top of our neck..and as we lean forward, that can really ad extra stress to those neck & upper back muscles..

Nerve TOS usually takes longer to recover from, perhaps she flared the elbow doing the homework, I would try to have her focus on healing & recovery first and avoid any activities that may stress or flare things..

If there are any clinics or chiropractors in your area that have a low level laser- also called soft laser, cold laser- I would try a few sessions of only that. no adjusting or PT.
Some places confuse LED light with low level laser - works similar but much weaker and less effective.
LED takes 30+ minutes while true LLLT takes 20 sec per spot tx. .. so make sure it is the correct light therapy.

I didn't have surgery but I did have some nasty ulnar sx for awhile.
I had to pad & wrap my elbows so I could sleep, they were so sensitive to just touching the mattress.
I think it was the spasms & trigger points in my neck & upperback that were part of the cause. After some PT & then finally chiro got the spasms resolved- my chiro addressed & treated the trigger points (PTs didn't mention them at all )

She can still have some lingering issues that the surgery couldn't fix. angry nerves
I would give some time for the elbow to resolve , if pain is bad try the low level laser if you can find someone locally that has it. Also someone that can check for spasm & triggerpoints..and address those if they are present.
TrP sticky thread-
http://neurotalk.psychcentral.com/thread125577.html


How did Sara acquire TOS?
sports, car accident, extra c rib, or other bony anomaly ?
Is the hand clawing gone away?

Sara is a trumpet player. She noticed a pain in her rt arm after periods of heavy practice when she was in 8th grade. ( she is very good and played practiced a lot) she also felt like it was hard to get a good deep breath. To be honest I kind of poo pooed it off. She was in 8th grade for crying out loud. @ years go she fell and injured her lower back. Thru a series of MRIs they ended up finding a syrinx in her thoracic spine. she was complaining again about pain in the upper back and down both arms but we chalked it up to the syrinx. Finally her neuro surgeon told her there was nothing he could do and referred her to pain management. I did not want to go. I have seen lots of pain management pts and did not want Sara to have to go down that road but with no other options available we found a narcotic conservative dr and went. He took one look at her and said he thought she had TOS and sent us to dr riefsnyder. By this time she was having sx on both sides. She does not have an extra rib no injuries other then the fall that injured her lower back just the trumpet playing. The surgery has seemed to help some things such as headaches and the achy pain. she has not had one headache since surgery and she was having them daily. Her claw hand is not completely better but is improved along with her ability to do things like hold a pencil extend and flex her wrist but the pain is different and in its own way much worse. Its sensitive to touch and as sara told me " like my arm is on fire" Is there a specialist she should be seeing for this or is it a just wait and see kind of thing? Is this a normal nerve healing kind of symptom or something I need to look further into? Her pain management dr did suggest voice recognition prior to surgery but Sara has muddled thru because she feels like the actual writing helps her to remember and learn. I think we may be at the point where we don't have a choice though. She is on hospital teaching right now...basically the teachers come to the house and teach her. I do think the TOS surgery has helped I just think the nerve involvement before has made the recovery worse.

Thanks so much for the replies. It helps to know what is ok and not ok. Sara is healing. It has been a much harder road then either of us expected but she is putting one foot in front of the other. She actually has pretty good Rom in her arm and shoulder. Yesterday she tried to work on some homework and I think she overdid it writing because last night and today she started with nerve pain in her arm and fingers ( where it was numb before) personally I think it's a good sign but it hurts and sara is frustrated and worried . I will show her these posts and maybe it will help her feel better. Thanks again. Any other advise we will gladly take!
Terri

After my surgery,my fingers and forearm were very numb and had parasthesias (sp?) like I was in a huge flare. I put pillows under my left elbow and that helped a little. I agree with Donahue's remark about nerves being ranked around and flaring it up. It was confirmation to me that a lot of my TOS problems come from my upper forearm and distal arm (on the inside).

So we are a little past 4 wks post op and I will have to say things are getting better. Slowly....so very slow but if I look at the big picture Sara is doing better. The trileptal is working ok and she gets blood work tomorrow. if its normal we can increase the dose and hopefully it will work even better. She is slowly starting to wean herself off of Percocet. No easy task. Saras tolerance to Percocet grew quickly and she was up to 10/325 every 4 hrs in no time. Now the dr says he thinks she is having pain from narcotic withdrawal more then anything. I tend to agree as we have unfortunately been down this road before when she had a disc herniation and the signs are the same so we are weaning off of it and are now down to Percocet 5s 3 to 4 x a day. She is doing well. We took a walk yesterday and this morning she changed the sheets on her bed. She has developed this nagging rash and I was sure she had RSD but the dr said no. I think I needed to hear him say that because I am a lot more relaxed and as a result so is sara. For the first time since Sara was diagnosed I feel like its going to get better. There are more good days then bad now. I will check in once a wk or so just for an update. Not that I think anyone is really all that excited to hear about Sara but because it seems so many of these threads get started and and then fade away without ever really knowing if and how they improved. If you are reading this for the first time and are newly diagnosed have hope. Find a good dr. Do whatever it takes to find a good dr. Travel if you have to. Pay out of network insurance if you have to. If you have found a good Dr and are thinking about or getting ready for a rib resection. Have hope but be prepared for a serious surgery. Its not easy. Have patience. Go slow with recovery and have hope.!!!! Talk to you next wk