Janelle54's Journal

11/23/08

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.

10/12/08

Where to start? 10/7/08 was my muscle transfer date. I have so much trouble getting IV’s that this scared me more than the surgery. I don’t know how she did it but she did it on the first shot. I believed I was headed for a great procedure. I woke up in the recovery room with excruciating plus pain in my left arm.  They turned off the MCS (Motor Cortex Stimulator). We tried to turn it back on. I could not get my right arm in the correct position to do it myself. I had never turned it off. I did not know why it was not working.

They called everyone they could think of to call. Jolene was with me. She got my wallet that had the card from Medtronics in relation to the implant. They tried all the numbers on it. A doctor finally reached John and he walked him through getting it turned back on. THANK GOD! My pain was better. It was 12:30 AM and I was finally being moved to a room. I got there at 6 AM.

The next morning Dr. Wong, Dr. Lee’s resident, came in. She asked if I knew about the operation. I told her sure. They were taking muscle from my right leg and putting it in my left arm. Well actually, now I knew it was my left shoulder. She told me Dr. Lee tried in every way possible. The flow of blood was excellent but when the nerves were placed in my arm, it would not flow. Either I hemorrhaged or there was no flow. Dr. Lee has performed this for years and has never had a failure. She was sorry but he tried everything but the operation was a total failure.

Dr. Lee told me this operation was my last chance of gaining movement in my elbow, wrist and hand. I never expected my wrist and hand to move. I prayed my elbow would. With that, I could get out of a sling. I see Dr. Lee on 10/20. We will talk then about amputation. Where on my arm, when, how long till I can have a prosthesis and what kind.

Now I am having severe spasm in my left arm. I have increased my dilaudid and taking it every 3 – 4 hours. My swelling in my leg and arm are severe. I have visiting nurses, OT and PT coming to the house. I see Dr. Kelly 10/13. We have a lot to talk about including getting the pain managed. I hope it is just the nerves being upset about the operation, scar tissue removal and just generally pissed off. I will call Dr. Eskandar and Dr. Lee tomorrow to let them know what is going on with me.

I can’t say I was surprised this did not work. Where the nerve graft failed, I never believed my wrist and hand would move. I just hoped my elbow would. Now, it’s a matter of knowing where my arm will be amputated, getting prosthesis and learning to use it. The next operation though it is the most dramatic it will be the true road to my recovering from the accident.

I have to say Jolene was amazing. She knew the results of the surgery when she was with me in the recovery room. She did everything she could to support me while waiting for them to get the implant working. She was so upbeat.  How she held it together without showing the slightest sign is beyond me. She went with me to my room. She was at the hospital at 6 AM. She left when I went to the OR. When I woke up, she was in the recovery room. She is a beautiful and wonderful person. I’m so lucky to have her for my daughter. 

She brought me Rozito Cheese Ball for lunch and Assagio’s lasagna for dinner. She was not about to make me eat MGH so called food. Love that girl. Mike went home at 6:30. She spent the evening with me till I was ready to sleep. I went home Thursday. She followed us home and stayed till I went to bed. She had to work a double all weekend.

Mike is his usual wonderful loving and supportive self.  We got to enjoy a fire on the deck last night and tonight. He made his delicious fried chicken for us and our friends Paul and Jan.

He’s talking about changing our Sat night fires to Sat breakfast fires. What a great way to wake up with coffee, oatmeal and a fire on the deck.

I’m glad to be home.

9/29/08

I’m blown away. My shoulder, arm, wrist, hand and finger DON’T hurt. This is the first time I can say this since 1/2/07.  Motor Cortex Stimulation is the most amazing surgery. I thought

I would be happy to deal with pain that was not severe to excruciating. Mild to none depending on the area is something I never thought I’d see.

I am no longer having violent spasms. I have minor ones that are more internal. Sure is nice for my arm to not be flapping out of control. The spasms also increased the pain. No spasm no pain.

When Dr. Eskandar adjusted the implant he and John talked about which of the three sections to adjust and whether positive or negative was the right direction, what combination and what power level. I had no side effects from the implant. They asked if my face, neck, chest or shoulder felt any tingling. I didn’t. My arm did start to spasm violently. It took a little bit for the arm to calm down so that I could tell if the wrist, hand and fingers were feeling less pain.

Then Whoa! All of a sudden, the words coming out of my mouth were not the words I wanted to say. I had to concentrate to get the words in my mind to be spoken. Guess the implant was set too high. My tongue even tingled.  They fixed it immediately and told me to keep talking.

I got to admit, I listened very carefully to be sure my words sounded correct. I told Mike to let me know if I sounded weird at all. I can’t be sure but I think I have some understanding of what a stroke victim feels like.

My remote can only be adjusted up or down one degree. At this time, I don’t plan on adjusting it.

If the muscle transfer effects, the MCS it will set the program back to the factory setting. If this happens, I’m to tell my nurse to call them. They’ll be right up to fix it. Sure is great to have all your doctors at Mass General Hosp.

Once I recover from the MT, I’ll be able to start getting off drugs. I’m so lucky to have the doctors I have. I’m on my way to start getting me back.

Janelle