United Brachial Plexus Network, Inc.

I had my left arm amputated above the elbow on 11/21/08. I was at MGH at 6:30 AM.

The surgery actually started at 9AM. I was in recovery before 11:30. Jolene came to the recovery room to give me my 1:00 Lyrica. John from Medtronics came to make sure my MCS was operating properly. It was. Surprisingly in the recovery room, I felt like I could go home. I couldn’t believe how good I was feeling. I was in my room before 2 PM.

Mike brought me a delicious taco from a true Mexican restaurant. Mike & Jolene stayed for a while then they went out for their own dinner and a relaxing evening at the Cigar Bar. Mike spent the evening at the Liberty. A gorgeous upscale hotel that provides MGH discount rates.

Dr. Sethy came in to check on me. He told me I would probably go home tomorrow. What a surprise. I thought I would be staying until Sunday. I finally got discharged around 5 on Saturday.

I’m really doing well. Mike & I went to Kohl’s, Old Navy and a Craft Fair today. My arm is wrapped in a HUGE bandage. It makes it difficult to put any sleeve on. I found a sweater I could put on at Old Navy.

I’m to keep it firmly wrapped in this bandage until I see Dr. Lee on Dec 1. This surprised me. I have had all my bandages changed after 3 – 4 days. I spoke directly with the resident before leaving MGH to verify this order. The bandages were placed in a sterile environment and placed firmly on the arm.

I guess I just have to deal with a huge bandage till I see Dr. Lee. , after the stitches are removed, I’ll be able to wear my regular clothes. It’s a good thing I have a very warm poncho. My winter coat would never go over my arm.

I do find that rubbing the bottom of my arm helps with the phantom pain. I only had one set of spasms the day of the amputation. I haven’t had any since. I do have pain occasionally at the end of my arm. I find taking Dilaudid takes care of it. I only had Dilaudid at 11 this morning when we were out shopping. It’s 5:45 now. I’m ready for some now. Not bad considering. I’m really pleased at how well I’m feeling and the amount of energy I have.

Glad to hear everything went well! Dec 1 will be here before you know it. Will you be fitted with any kind of prosthesis? (I know most functional ones require use of an elbow, but will you get one for aesthetic purposes?)

ALRIGHT Janelle!
I've been holding my breath. Honestly, I have no right to be pacing around as I have waiting for your post.
I am thrilled for you. I am also relieved. If you never posted I would've gone crazy(er).
I wish I knew you were going to MGH(great facility!).
I wanted one of my bros or sis's to bring you some flowers.
I bet you are about now beginning to itch? It'll drive you crazy. But you know that right? You probably had that arm casted after the accident? Don't shove any coat hangers down your bandages. This is different.
Oh, one more thing, I thought of your tattoo. A Celtics clover?
Get some rest I now I will. e'ya later.
Scott

As far as a prosthetic is concerned it all depends on the movement of my shoulder. Dr. Lee is not real hopeful.

Scott,
I never had any casts. Right now there is no itching but there is phantom pain. Rubbing the end of my stump helps greatly in reducing the tingling, electric shocks, pain from the surgery and the pain. When the pain is constant I take Dilaudid. Evenings seem to be the that I need to take Dilaudid to get the pain under control.

This has been pretty much my issue all along. The huge difference is my spasms have almost disappeared. I have had a few but nothing like I used to have. Believe me I'm grateful to be able to say that.

I feel so much better. I have a lot more energy. I got my pantry cleaned and the living room cleaned today. I have not had this much energy in a very long time. The fact that I'm 3 days after amputation, too feel this good is amazing. Yeah I'm tired and ready to take a nap. But, not bad, don't you think.

I can finally get out of bed in the morning without having to reach over, grab my arm, pick it up and put it across my chest so that I can get up.

I can actually put my seatbelt on without my arm getting caught or tangled. It is really nice not having to work around my arm. It may sound odd but I don't miss my arm. I haven't had use of it for 20 months. I only had to fight with it. Now the battle is over.

I think the Motor Cortex Stimulation is greatly helping with reducing my pain. I think once my arm heals my pain will be reduced if not gone. I hope to be able to start getting off the drugs. All and all I'm glad I finally had my arm amputated. I believe I am really on the road to recovery.

Janelle

Hi Janelle,

It's great to see you're doing so well already. It's interesting that it's the little things that you don't have to do anymore, like lifting your arm out the way when you sit down or holding it when getting out of bed, that make all the difference. And I'm sure once all the healing has been taken care of it will get even better.

That's me 3 weeks post amputation already. There's no more bruising or swelling (but there never was much) and the scar looks neat. The bottom of the stump is still a bit sensitive but is getting better. My main problem is still this neuropathic pain. It's been 20 years since I've had pain like this so it's taken me by surprise. I just hope it settles down soon. I still have the prescription for Amitryptiline but have managed without them so far. I guess if I'm getting by without them then the pain can't be as bad as others out there such as yourself.

Anyway trying not to let it get me down as I'm sure it's short term pain for long term gain.

By the way it will feel good getting the bandages off, your arm will feel even lighter. Did you have that strange thing after the operation when it felt as if the remainder of the arm wanted to float away. It kept rising up and I had to make a conscious effort to keep it down. Weird!

Take care


Mike

Great to hear it is going so well for you Janelle
Happy thanksgiving.
god bless
Shaun

Hi Mike & Shaun,
I still feel my arm & hand. I used to think the pain in my wrist was from resting it on a pillow too long. I still get the exact pain. Phantom. Who knew? The one pain that seems to be gone is the spasm pain. That was always my worst.

The evening pain I have now, I'm hoping is just surgery pain. It is different pain than I had previously. I'm so hopeful that the Motor Cortex Stimulation is blocking most if not all my pain and the pain I have now is just from the surgery.

I find it interesting that evenings are still my issue. I'm really glad I had this done. I just wish it was done earlier. I would have prefered to not have gone through all the surgeries I had trying to save what was a dead arm.

I know it's easier for my family to accept that everything was done to save my arm. I wish it had just been taken at the time of my accident. Hindsight is 20 /. 20. Alway was always will be. I'm just g;lad to finally be moving forward. 2009 I going to be a good healthy year for me. I know I will be drug free before it's over. Who knows maybe I'll even be able to work again.

Happy Thanksgiving to everyone.
Janelle

thanks Janelle your post is very inspirational. I have an appt in Jan to discuss amping my left arm. Its been dead so to speak since 99. Its scary but i'm tired of the days I stay home because my back or shoulder hurts from carrying this thing. I am pretty active but as I get older the flail arm limits me more than I am willing to accept.

I just have to get over the fear of not having something to hold on to when its screaming. You know those days...

Hi John,
I had my amputation on 11/21/08. It is just over a month. The only regret I have is that it was not done sooner. My pain is greatly decreased. I'm on the long slow process of getting off all the drugs I've been on since my accident on 1/2/07. It will probably be May to accomplish this.

My violent spasms are gone. I have occasional spasms. They are minor and shorter in time.

I feel like I have a real shot of getting my life back. I no longer spend every minute of every day dealing with my arm.

I don't miss it. There is nothing to miss. I had no movement or feeling from my elbow down since the accident. I don't have to carry dead weight any longer. My right shoulder is not carrying the weight of my left arm in a sling. That was causing pain in my right shoulder. I lost nothing having it amputated. I gained plenty by having it finally gone.

I had all the surgeries and therapies that could be done. I know every effort was put forth be me and my doctors. I can honestly say I wished they hadn't tried so hard. The muscle transfer attempt from my right leg to my left arm is the one surgery I wish had not been tried. The severe cold in NH bothers where the incision in my leg is. That surgery is my biggest regret. However, I know that was the one that made it clear to everyone that movement was never going to return.

Next month I see Dr. Lee. We will discuss then if I should consider a prosthesis. He is doubtful. My BPI is too severe. I need a very light weight one. I only want one if it is functional. Otherwise what's the point? I've been without a left arm since 1/2/07. If I can't have one, I'm OK with that. I do have to say that there are always new developments and designs. That is a window of opportunity time is in my favor. My arm recovering was not in my favor.

I know a lot see amputation as giving up. I see it as reclaiming my life back

I'm glad I did it and have no regrets.

Janelle