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Posted 4/10/2015 1:44 AM (GMT 0)
January 2013 I began having tingling and numbness in my left pinky and ring finger, I also had pain in my shoulder and my elbow was sore and burning, I told the dr but since I am diabetic and have MS he dismissed it as neuropathy.

I had been after my dr prior to this about my thyroid, that I was sure something was wrong with it but he said my levels were normal, by March my other arm began aching at the shoulder so I went to an orthopedic dr , he thought I had a pinched nerve but because he felt and saw on X-ray a lump just below my collarbone on the right side he did a nerve conduction test on that side and sent me for a cat scan.

The nerve conduction test was negative and when I asked why he did it in the right when it was my left side that was numb he said the lump concerned him , the cat scan came back showing I had a lipoma on the right side about the size of a pea but the real issue I had was my thyroid was substernal and 1 inch from my heart, I needed to have that taken care of and since a lipoma was always benign we could address that at a later time.

I was rushed in for surgery to remove my thyroid which blood tests revealed I had Hashimoto Disease and the thyroid had slipped under my sternum taking my parathyroids with it, thyroid was loaded with tumors and had grown from the size of a quarter to 5" X7" , the parathyroid had grown tendrils and what wasn't attached to my lungs and other spots were floating around in my chest, the removal of my thyroid messed up my sugars, cholesterol vitamin D and it has taken 2 years to get them back under control.

My left arm was bothering me off and on but I had learned to live with it, the lipoma is now the size of a walnut and moved to the top of my shoulder, recently I began waking up with my left hand swollen numb and stiff, the entire hand burns and tingles and I have lost all sensation my my pinky and ring finger and half of the middle finger, finally my dr caves into my demands and sends me to another ortho to see what is going on (I am on medicare now and have to get referrals).

They decide since my hand is so messed up it must be carpel tunnel, put me in a wrist and elbow wrap and send me for an EMG, the results were severe ulnar nerve compression in the left elbow, not carpel tunnel but can't explain why my hand is all lumpy swollen red and burning and I can't turn my wrist without being in agony, they want to do surgery right away but won't answer my questions as to what could be wrong with my hand or if blood work should be done to check for antibodies etc. When I asked what my alternatives were I was told I could live with it and the dr left the room.

Yes, I am getting a 2nd opinion, I wouldn't let that dr treat an animal.
I know this was long but I had to paint the background, 1st off shouldn't they run more tests before deciding on surgery? Is my swollen , burning tingling and intensely itchy palm normal for a nerve damage in the elbow and should my wrist be swollen and feel like it was sprained? Should I make them find out if there is another issue going on with my hand?

I can't take this pain and my hand and arm are getting weaker everyday, any thoughts?

I have made some paragraphs in your post to make it easier to read. Some of our members have tracking problems when reading. Thank.

Post Edited By Moderator (straydog) : 4/9/2015 7:55:15 PM (GMT-6)

Posted 4/10/2015 2:04 AM (GMT 0)
Thanks for the edit, I am not supposed to be using the computer for long periods and I rushed to get my post in, I'm sorry if it made it hard reading for others.
Posted 4/10/2015 2:36 AM (GMT 0)
Hey Deb and WELCOME to HW=)

Sweetie, it sounds like you've had a rough time of it.  Your description of the thryroid mutation is a bit scary.  I can't imagine the repercussions you've endured.  I'm not at all familiar with your symptoms in your hand/arm.  There are others here who will stop in and offer their support.

Meanwhile, I do hope that the second opinion gets the answers you need.

~Dixie

Posted 4/10/2015 2:53 AM (GMT 0)
Thanks Dixie,
Yes the thyroid issue scared me half to death, dr said I was literally an inch from death , thankfully the tumors were benign but I have a new endo now and she wants a cat scan to check because she thinks I may have a new tumor in my neck, based on the fact my neck and throat are still painful and i have a hard time swallowing.

I do hope someone can put my fears to rest about possibly having multiple issues going on with my left arm and hand, I had just begun to lose weight again and had dropped 40 pounds and tried to join a fitness center to enhance my weight loss but they won't let me join until I get an ok from the dr which they won't give until I get this arm fixed.
Posted 4/10/2015 3:00 AM (GMT 0)
Hello & welcome to the chronic pain forum. Sorry to read about what you are dealing with. A person should be able to get answers to their questions especially when surgery is being discussed.

Since the EMG says you have severe ulnar nerve compression, I am wondering if some of this hand pain is referred pain coming from the elbow which is possible. I would start looking for a specialist that specializes in the upper extremity if this were me. Nerve issues are real quirky & a completely different animal to deal with. This is why it is so important that you have the best surgeon around that knows all about nerve issues.

I had an accident years ago & sustained trauma to both elbows & was offered ulnar nerve transposition on both elbows. I declined the surgery because I saw too many of these surgeries back then & the success rate was not all that great not to mention all the new problems that cropped up after surgery. Add in carpal tunnel in both hands & ganglion cysts, my hands are a mess now. As bad as they are including how much function I have lost I still do not regret making the decision that I did back then.

I can understand your concerns, but patients cannot make or force drs to do anything. I would suggest that you make a list of questions to ask the & at the same time make any dr you see aware of your concerns. Also, make an accurate list of your symptoms.

If you do not get the answers you are looking for then consider going to one of the teaching hospitals for a consult. This is something lots of people do when they can't get help from private drs. They have all the cutting edge equipment & access to lots of information that private practice drs are not privy to.

Good luck.
Posted 4/10/2015 12:03 PM (GMT 0)
Hi Debnas. Welcome to the forum. Sorry you had to find us.

I had a traumatic injury to my left elbow and shoulder back in 1996. Workers Comp only authorized examination of the shoulder. I was put in physical therapy for about 8 weeks before the ortho decided to try order an MRI of the shoulder which showed a 3/4 thickness tear of the supraspinatus tendon and a partial tear of the biceps tendon. I had arthroscopic surgery and then was put back in p.t. in June.

It was the end of July before W.C. authorized examination of the elbow. The E.M.G. showed significant loss of ulnar nerve function, due to the fact that it had torn loose from the sheath and was rubbing over the bone every time I bent and straightened my elbow! Surgery was done in August. The nerve was basically shredded. You can read more about my experience with that in another post started by another member. I will tell you that the swelling has stopped, but I do have 35% loss of nerve function, permanently, due to the delay in having the surgery. My surgeon did a fantastic job but because I only weigh about 90 lbs there wasn't much muscle to bury the nerve under. I credit my physical therapist with helping me regain full function even though I still have numbness and tingling of the digits and fine motor issues, but seriously how much do we use our pinkies and ring fingers?

I think for you the issue is what is entrapping the nerve? Whatever it is may be interfering with blood flow and the lymphatic system contributing to the swelling. I used anti inflammatories, ice and believe it or not, Benadryl to help get the swelling down. See if you can get appointments with orthopedists that have neuro experience, like mine did.

I've seen some posts where people used a brace that kept their arm straight while sleeping. Perhaps something like that would be helpful to you. I am looking into this for myself as mornings are particularly difficult still with the elbow.

Good luck and let us know how it goes.
Posted 4/10/2015 8:39 PM (GMT 0)
Thanks Straydog and Pitmom,
WOW! Sounds like you two have been through a lot as well, but you sustained yours through injury which must have been very painful!!!! With mine I have no clue why it happened, I do use the computer a lot but i am right handed and you would think any damage from that activity to be my right hand more than my left, I do sleep with my arms bent as I am a side sleeper but I am the pillow queen and my entire body is supported by pillows so much that I no longer need to use a blanket to keep warm, lol!!

I have a new dr they are sending me to, he specializes in the upper extremities, specifically the the wrist and hand, the reviews online for him have been great and local people I am acquainted with say he is the best in his field and best of all he takes my medicare advantage plan. I spoke with his office and they were very nice to me answering all the questions I asked and assured me he would get to the bottom of this problem.

I am taking Tramadol and Meloxicam for the pain and inflammation, I have a brace for my elbow and one for my wrist that I can't function without, I wear the elbow one all the time the wrist brace only when I am up and about, I take it off at night to let my hand breath. The swelling actually has gone down, the pain in my wrist only if I move it certain ways, , I cannot open my hand all the way and can't straighten my fingers , forget lifting anything with that hand, I might be right handed but I am a left handed drinker, coffee that is, lol!!

I saw my PCP today for a weight check and we discussed the 1st dr he sent me to and he is so upset that this man has treated me the way he did and is glad we found another dr to see me, he recalled how he had sent me to that 1st group of drs in 2011 because I had had several falls and landed on my knees and 6 months after the last fall I was still in pain and had a hard time walking and my knee was still swollen, this
same dr was the one to evaluate my knee, he opened the door, stood there without looking at my chart or even introducing himself and said to me, "I know what your problem is, you need to lose weight" and I got off the table and said the only thing I am losing at this moment is you and I left.

I was sent to another ortho who did an MRI and found I had a torn ACL and Patellar dislocation, I had to have surgery to repair it and was practically walking the same day. Too bad that dr does not take my current insurance.

Anyway I got the orthos report and a copy of the EMG: Left Ulnar Motor nerve showed decreased conduction velocity across the elbow (A Elbow-B Elbow, 38.5 m/s). The left DorsCutan Anti Sensory and the left Ulnar Anti Sensory nerves showed no responses at this time.

Needle evaluation of the Left 1stDorInt muscle showed increased insertional activity, slightly increased spontaneous activity , diminished recruitment and decreased interference pattern. (reduced 50%)
The Left FlexCarpiUln muscle showed increased insertional activity, slightly increased spontaneous activity , diminished recruitment and decreased interference pattern. (reduced 75%)

There is electrophysiologic evidence consistent with left ulnar neuropathy at the elbow causing complete sensory axon loss and motor nerve demyelination.

I guess this is what he meant by severe, I have no idea how to read these things but hopefully the new dr will explain it to me.
Posted 4/10/2015 9:28 PM (GMT 0)
I hope your new doctor can explain things in a way that you understand. Good luck to you! Please let us know how it goes.
Posted 4/10/2015 9:44 PM (GMT 0)
No problem with the paragraphs. Glad to read the new dr specializes in the upper extremity. Folks don't often realize the difference with drs that do specialize in a certain area. I found this out with a knee problem. The good part was my original ortho tried fixing my knee with no luck. However, he was honest & cared enough to say I am missing something with that knee so I am sending you to a dr that deals with knees only because I feel he will know what is going on. He was right but how often do we find drs that will fess up they don't how to fix us.

Is the pending appt soon? Keep us posted.
Posted 6/8/2015 5:29 PM (GMT 0)
Sorry it's taken so long to post back, I finally saw the new ortho but some other things popped up, I was allergic to the tylenol/codeine they put me on and began having symptoms suggesting either kidney or liver problems so they would not give me anything else until this was resolved, now after many cat scans and repeat blood tests my liver and kidney are ok but I have kidney stones and hypercalcemia/hyperparathyroidism and my ulnar nerve was put on the back burner until the drs stop sending me to other specialists (nephrologist, gastroenterologist and rheumatologist) leaving me in pain , (now my stomach and back)vomiting, uncontrolled blood sugars, sever fatigue and irritability, so I aam going to search the other forums for help on this parathyroid because I believe if they take care of that i will be 95% better.
Posted 6/9/2015 1:12 AM (GMT 0)
Debnbas, thanks so much for the update. So sorry to hear of your additional difficulties! Yikes!

I have found that a heating pad helps me a lot with the left forearm. Mind you, I am post op, but it may still help you. Sometimes ice will help numb the nerve and calm it down. I've heard some people sleep with a brace on, although I've not used one yet myself. I also wore a special sling that supported my arm and also wrapped around my waist to keep the arm from 'bumping' against my body. Supporting the upper arm from the back with a rolled up towel while laying down and keeping the forearm across my belly helped too.

Can you take anti inflammatories? I used ibuprofen and occasionally also took Benadryl. For some reason it helped.

Hope everything gets resolved soon and you finally get some answers and some relief.
Posted 6/9/2015 4:45 PM (GMT 0)
Pitmom, due to the calcium situation it has affected my bowels and stomach, the heartburn is so bad and they suspect an ulcer has formed, so I can't take anything that would make that worse, my esophagus has eroded and scarred causing swallowing problems ,

my PCP claims he is not authorized to give me anything for the pain and the Ortho says because of the other issues he can't prescribe anything either, I use a brace on my elbow 24/7 to keep it straight, the wrist and thumb brace I use just when I am up and about,


I have now developed trigger thumb and both my PCP and Ortho think it may be from the diabetes (stenosing tenosynovitis.) I now think it may have something to do with my bones losing calcium.

I am no dr but sometimes I think I know more than they do, it just seems that they would see all the symptoms I have point back to the parathyroid and that admitting I have a tumor on one of the glands is the reason why all this is happening to me still.

The headaches I have been having have gotten excruciating waking me up screaming in pain, my elbow and wrist hurt so bad and now passing these kidney stones just adds to the equation, I don't know how much more I can take of this pain and their attitude of lets wait and see, my legs and feet have begun to swell and I refuse to tell the dr because all they know to do is take the same blood tests over and over and frankly the one arm I have left to take blood from is too bruised and sore to take another needle.

I am almost to the point of giving up and not wanting to live anymore, sleeping is the only thing I want to do because the extreme fatigue at least lets me have some peace.

I almost feel like I did towards the end of my thyroid issue in 2013, because my thyroid was testing normal they kept telling me nothing was wrong even though I was having all the symptoms, if I had not had that cat scan to check out the lump on my chest wall I would have died from the substernal thyroid touching my heart, when they finally tested me for antibodies it was off the charts, I had hashimoto autoimmune thyroid.

I was feeling so bad at that point, totally bedridden, I was making plans to die, trying to tie up loose ends and make arrangements for my family, I am almost feeling like that again, I know what is wrong with me but the drs wont listen and even if they did it scares me that the surgeon may not find the tumor or all of them and I will continue feeling like death warmed over.
Posted 6/9/2015 9:10 PM (GMT 0)
Awwww, I feel so bad for you! about 6 years ago my daughter was diagnosed with Premature Ovarian Failure. While researching it, I came across one of those 'Mystery Diagnosis' shows about a woman with the same problem. Turned out she had a pituitary tumor. After years of bugging this doc and that doc, we finally landed on one that ordered the appropriate tests. We are rather sure now that something is going on with the pituitary gland and she is in the beginning of the Cushing's Disease testing protocol. Hopefully, we will know soon if it's Cushing's or Pseudo Cushing's and be able to treat appropriately.

Life can wear us down so badly. I sincerely hope you find the solutions and start recovering quickly. In the meantime, I'm here to listen, anytime.
Posted 6/12/2015 3:01 AM (GMT 0)
Pitmom,
Thank you, looks like it might be awhile before anything can be done for anything now, my PCP called and said he thought it would be better if I got an Internal Medicine dr, he said a Family Practice could not deal with my complex issues and he wished me well. I spent the entire day pouring over drs in my area that accept medicare , I finally found a group and have an appointment Monday, all my referrals to specialists will have to be redone and hopefully I can keep the appointments I made months ago, now to get this new dr up to speed on 10 years of medical history. Hopefully I can make it through the weekend with this headache , I have had it the past 5 weeks but times like this it gets worse, surprisingly my blood sugar is down in spite of the pain, but what I could eat didn't stay down long so I guess it's a blessing of sorts, my A1C was 7.7 so it has been running high for awhile.
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