HealingWell
Search Close Search
☰

Surgery on May 8th, 2012

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/23/2015 1:19 PM (GMT 0)
I had an Ulnar Nerve Decompression and Transposition almost 3 years ago and I am grateful for the numbness and pain to be gone in my hand and fingers. That's as far as I can say I am grateful for after the surgery. The rest of my arm is in a constant state of pain (throbbing, stabbing, and just awful). My doctors have never given me anything that worked except the muscle relaxer I was prescribed after my surgery. After about a year of using it, I was told that I shouldn't need it anymore and they wouldn't prescribe it anymore.

I cannot move my hand without shooting pain through my arm and yet they still think I don't need it anymore. I can also barely type on a computer because resting my arm or hand on anything makes certain parts of my arm go numb and other parts feel like they are on fire.

I am at a loss. I've tired writing to specialist in the country and no one ever responds. I just want normal function in my arm and hand. I'm 22 and in college and I have to have photo copies of my typing "disability" on hand to every class I attend. Every profession looks at me like I'm crazy, but I just can't type for long periods of time, or sit in desks that are higher than my waist. People around me think I'm weird too because I have to randomly shake my arm out if its numb or I crack my elbow because I get a numb-free and pain-free moment of bliss.

No one understands and doctors just think I'm faking it.
Posted 1/23/2015 3:28 PM (GMT 0)
Hello Kruse & welcome to the chronic pain forum. I am sorry to read about what you are dealing with. Someone your age should be out there getting on with their life & not be struggling like you are.

The type of surgery you had often leaves the patient with residual problems. The problem with many surgeons is once they do a surgery as far as they are concerned they fixed the problem by doing the surgery. Then the patient continues to have problems & the dr says I did my job. Yes, this happens more often than you realize. Has any of your drs tried you on any of nerve pain meds like Gabapentin/Neurotin, Lyrica, or Amitriptiline to just name a few?

I would suggest to anyone in your circumstances to look into getting a consult at one of the leading teaching hospitals/universities. Lots & lots of folks end up doing this when the drs all say I don't know why you are having this pain or I can't find anything wrong with you. The drs at these facilities have access to information & even medical equipment that our mainstream drs do not because they are a teaching facility, there is a huge difference. If you will look in CP101 above you will find a list of these facilities & they do accept lots of different insurance.

Keep us posted on how you are doing. Take care.
Posted 1/23/2015 4:48 PM (GMT 0)
Hi Kruse,

Geez, I'm sorry to hear of your difficulties. What kind of physical therapy did you have after the transposition? Ice therapy and 'points' were very painful but really helped me. I had mine done back in 1996 and it's mostly good. Look, the nerve is now buried in muscle, so when you use the muscle, it irritates the nerve. When you bump the muscle, it will feel like you hit the funny bone. When the lower part of my arm comes in contact with cold, it sends a 'wet' signal to my brain. Hot, thank goodness is still read as hot!

I totally get the arm rest situation. I totally get the typing 'in bulk' thing too! Some things will just not change. If no one has told you yet, you must inform health care professionals that you had the transposition done and cannot have any venipuncture done in the cubital area of that arm! My scar is so faint and so well placed, most don't even see it!

Oddly enough, the best thing you can do is massage the arm, even if it hurts, to help desensitize the nerve. I wish you the best.
Posted 1/23/2015 5:22 PM (GMT 0)
Pitmom-
I was never told not to have IVs in that area. I have a port, but I'm inpatient so often that I've had IVs placed when needed-and in that area as well. Why were you told not to?

Kruse-sorry to hear of your troubles. It took me about 1 1/2 to get things kinda back to normal. 3yrs is a long time and I'd be frustrated, too! If your local drs aren't helpful, I agree that a university hospital would be a good next step. I go to Duke for multiple reasons and I'm very pleased with my care. They are used to see the oddballs of the medical world so I fit right in.
Posted 1/23/2015 10:38 PM (GMT 0)
Right, I should have clarified before, no venipuncture because they could hit the nerve not the vein. This is what my surgeon told me and I have followed his instructions ever since. If they have to do surgery on my right arm, they put the i.v. in on the back of the left arm or in the left hand, avoiding the cubital area.
Posted 1/24/2015 9:44 AM (GMT 0)
I have to say Roc we were taught not to stick in the area either so don't know why you were not told that unless your surgeon knew it would not be an issue for some reason.

I agree with the others and would look into a University hospital and possibly they can help.
Posted 1/24/2015 12:30 PM (GMT 0)
I don't know what to say to help as the others have other than that STINKS and I'm sorry for you.

As far as professors looking at you like you're crazy, I'm sure it isn't that. Most people don't understand a disability (temporary or not) and aren't prepared to face it head-on, so they get nervous and that might be why they come off as thinking you're "crazy." Just because it makes them nervous. You do not need to feel ashamed.

Do you record your lectures? That could take some of the pressure off as far as typing.
Posted 1/24/2015 2:26 PM (GMT 0)
This has really stayed on my mind. I'm trying to think back over the years to remember how I managed.

I used to be self conscious about going out to eat, because I can't (still!) rest my arm on the edge of the table and it is 'rude' to put the elbow on it. Well, I'd rather be considered rude than be in pain that I can avoid. I also learned to rotate the shoulder, so that my elbow is pointed in towards the center of the surface so that the forearm rests differently on the flat part. I even choose my cars by how comfortable the arm rests are! I remember rolling and taping up a towel to use as a cushion. That might be an option for you.

I don't know what kind of set up you have for typing, but, I used to put the keyboard on my lap. Try one of those pillow/desktop things they sell for laptops. It was a better angle for me.

You will learn to ignore the looks. If it's that important for people to know 'why' you shake out your arm, just show them the scar! I have found this 'shuts them up' pretty quick! No one likes to hit their funny bone and when they learn where yours is, and that the feeling is constant, they understand your discomfort. They may even offer to help with the typing stuff for you!

People don't understand chronic pain partly because we try so hard to act as if we are not in pain. I don't hide any of my scars like I did in the beginning. Well, some aren't supposed to be in public view to begin with, ha ha.

There are meds that can help with nerve pain...post op I was given Elavil. I don't even know if it's still used for any purposes (it's an antidepressant). There are others though, have you seen a neurologist? Ice is still my best friend when mine acts up. I garden and in those seasons, I tend to 'overuse' the muscles where the nerve is buried.

I had a consultation for more surgery, but the odds of it helping were not worth the pain of a do over! It gets better, but never completely gone. Oh, and I've heard there is an elbow 'brace' for when you sleep, to keep you from having the elbow bent during the night. Others have posted about it here, though, I've never used one myself. Yet. I hope something here brings you relief.
✚ New Topic ✚ Reply