Re: [TMIC] Hobbies, Creative Outlets, Amputation
Hello! Well, it is another one of those nites – legs spasming. Have taken an extra baclofen, but it will be a while before it takes affect. I have been playing “Quiddler” a couple afternoons a week (I should say Eddy and I have, when he is not golfing) with friends of ours that live up the street.We absolutely love the card game. Instead of numbers on the cards, this has letters. You are dealt 3, then 4, and on to 10 cards a round. You make whatever words you can out of your cards.It is really fun. I also go to the show once a week with a couple of my friends.What a group. I have TM, another has MS and just had a knee replacement, and the other has just been diagnosed with diabetes. But, we have a lot of fun together. I have also been doing volunteer work in the office of our church about once a month in the morning.Also have done volunteer work at a place called the “Wardrobe”.The people that run it go through all the clothes, etc., that are donated and put them in baskets that we volunteers put on hangers or in shelves for hanging in the main area.Of course, with both volunteer jobs, I am mostly sitting to do the work.I usually come home from the “Wardrobe” pretty pooped! After 6 years with TM now, I am still showing some improvement with leg strength. Of course, I think a lot of it is the implant I have that covers nerve pain.It just makes my legs feel stronger.Well, enough of me. Keep us informed with you and keep posting! Janice From: heyjude48...@aol.com Sent: Thursday, July 11, 2013 2:22 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] Hobbies, Creative Outlets, Amputation Hi Everybody~ What are you all doing this summer to pass the time? I've been writing back and forth with a couple of other members and they have sent me pictures of the things that they do for creative hobbies, places they've been and things they like to do. I'm stuck here in bed, in this hot,clammy weather and need some inspiration to get me through these long days. Whatever you're doing to make yourselves happy, will you send me a note and maybe some pictures of what you're doing? Does anyone know of another person who has had a leg or an arm taken off? I want to talk or write to someone who lives with an amputated limb. I am possibly going to have my leg removed, but I can't make that decision without talking to someone who has had it done. Love & Hugs, Jude
RE: [TMIC] Baclofin Pump
Hey Rob, that's encouraging! Please keep us posted. I don't have banding, but the spasms are bad, especially late in the day/evening BERNARD BUTCHER Honeywell Engineering 516-577-5868 From: Robert Pall [mailto:robthe...@aol.com] Sent: Thursday, July 11, 2013 7:49 PM To: tmic-list@eskimo.com; ahope...@optonline.com; shirleyabreu2...@msn.com; vet2bi...@aol.com; iluvt...@hotmail.com; suelau...@optonline.net; frosscl...@embarqmail.com; mike.fitzger...@us.deltagalil.com; purple442...@yahoo.com; lbieh...@earthlink.net; amy.war...@cigna.com; judyd...@aol.com; lbilli...@aol.com; robthe...@aol.com; cgs...@comcast.net; mpk0...@comcast.net; traqu...@yahoo.com; margo.or...@gmail.com; ppet...@wiley.com; campeo...@msn.com; bac...@ramapo.edu; aac...@rkco.com; suela...@aol.com; tikicon...@verizon.net; fd...@aol.com; baea...@aol.com; fulltimewmc9...@aol.com; mae...@thestettlergroup.com; rmom...@comcast.net; nzipu...@yahoo.com; caree...@aol.com; arp1...@aol.com; tac8...@aol.com; mother...@gmail.com; suela...@aol.com; jandpstev...@optonline.net; jaydeeteef...@gmail.com; kaysquare...@aol.com; mrsde...@aol.com; louie405phi...@aol.com; r1aquil...@aol.com; alke...@hotmail.com; ktek...@aol.com; deefi...@yahoo.com; thav...@optonline.net; teamba...@hotmail.com; rollinmama...@yahoo.com; niyu...@yahoo.com; doctora...@aol.com; aberc...@aol.com; aberc...@aol.com; sharoni...@yahoo.com; sharoni...@yahoo.com; andreeb...@aol.com; gary5...@comcast.net; gary5...@comcast.net; momc...@optonline.net; amanda...@comcast.net; beans...@aol.com; hart...@comcast.net; flynch8...@gmail.com Subject: [TMIC] Baclofin Pump Here is my first journal after having the Baclofin Pump placed in my body. The surgery took place on 6/28 early morningit took about 2 1/2 hours. After waking in recovery I was transferred to the ICU where I spent the next 24 hours and was then released to go home. Almost as soon as I woke from surgery I could feeol like a weight had been taken off my legs. The banding was significantly reduced. That being said after being released from the hospital I began to suffer severe headaches and nausea. The neurosurgeon advised that I lie flat on my back and drink lots of caffeinated beverages in order to replenish my spinal fluid which he felt was leaking at the catheter site. I did this and still the headaches got worse and worse...to the point where I had to be readmitted to the hospital. At the hospital I was told to stay flat 24/7 and was given antibiotics and a low dose of steroids.After 3 days in the hospital I had them release me even though I was still suffering from headaches and fatigue. Today it is almost 12 days since my surgery and I am finally starting to feel better. The headaches are gone and the fatigue is less. Not everyone getting the Baclofin Pump goes through the leakage...they say one in 10I was one of them. I know that so far everything has been negative...yet I am still very happy I had the procedure. My legs feel better than they have in 15 years and they are likely to improve even more as the dosage is increased. The pump does stick out of my left side lateral to my naval and is the size of a powderpuff. It is made of titanium and is only slightly under my skin. The surgery consisted of placing the pump on the left side of my naval and the catheter is inserted through a separate cut near my spine. The catheter is placed in the spinal fluid as near as possible to my lesion. The pain from the surgery is minimal and if it were not for the side effects I encountered would have been a piece of cake.The pump is refilled approx. twice per year by an injection through the skin directly into the pump. The pump is programmed by the neurologist via a handheld computer. It is my hope and expectation that this pump will greatly benefit the quality of my life. I should be able to walk better,faster and with far less fatigue and banding. I have no restrictions on physical activity once the sutures have healed (about 2-3 weeks). I can resume swimming and almost any activity my body allows me to do.I will be able to walk my 70 lb Golden retriever and not have a problem even when he sees a rabbit and starts to pull me. I will have to carry a special medical card when I fly as the pump will set off airport alarms. The only other thing I cannot do is get an MRI. I am not ready to recommend and or endorse the pump for everyone. The people who it will help the most are the ones suffering from spasticity and banding. I will keep everyone up to date on my progressand that being said I would recommend anyone considering this procedure to first go through the hospital trial. At the trial a 3 hour dose of the medicine is injected into your spine (similar to a lumbar puncture). Once the injection is done you should see major changes in the way you feel. That is what happened to me and I felt I would never forgive myself for not trying the procedure. T
