Emily, I have no idea what to say to you. You and your husband are in hell right now. But, remember that the doctors are working with you and your husband. Medical science can be stretched to do miraculous things. You are certainly a part of us and please continue to do so. We want to hear from you on a regular basis. I hope you will tell us about the outcome of tomorrow. Blessings to you and your husband, Janice
From: Emily Sent: Tuesday, January 18, 2011 9:54 AM To: 'Janice Nichols' ; tmic-list@eskimo.com Subject: RE: [TMIC] TM My husband was originally diagnosed with TM on September 4th of this year. He was put on steroids and was weaned off of them orally. At that point he was able to walk about 50 feet with a walker but was pretty much wheelchair bound. The lesion was between T7-11 with enhancement at T9. Within a few days after the steroids stopped, he would get a relapse. This happened a couple of times…..and then the docs scratched their heads and said TM doesn’t do this so they began looking at other possibilities. On November 20th they discovered that he had non-Hodgkin’s LYMPHOMA….and the lesion they saw was caused from Lymphoma. He is the only known case in the USA at this time and is currently being written up in the Medical Journal because lymphoma is NEVER found in the spinal cord. It is so rare that they didn’t know what the correct course of treatment and the head of oncology at Pennsylvania Hospital had to contact colleagues in various states to see if they had any experience with this. The good news is that the lymphoma is curable…..the bad news they don’t have any history as to what the prognosis could be regarding the damage done in the spine. At this point he is much worst mobility wise….he can only sit in the wheelchair for the max of 3 hours. He is extremely weak but that could be the chemo. We are going tomorrow for his 3rd chemo treatment and we are going to ask lots of questions because he is currently in a rehab and is not making any progress. He has only been in our home for a total of 26 days since the end of August. He has used up all of his Medicare hospital days and has dipped into his live-time reserve hospital days. It has been a long and grueling 5 months and it doesn’t look like it is getting any better. Along the way he has had pulmonary embolism, insertion of vena cava filter, pneumonia, a testicle removed due to urinary tract infection, Atrial Defib due to the chemo messing up his electrolytes. He is totally incontinent with catheter and diaper. He use to be able to transfer using a walker now he has to use transfer board because of the weakness. Don’t know what is going on and hope to find out something tomorrow when he goes for treatment. Although he doesn’t have TM, I continue to read these emails because when push comes to shove….it is a spinal cord injury regardless of what caused it. My heart aches for all of you as I read about pain, sensations, spasms, seizures, medications, etc. He too has some of this going on. I pray for his recovery but I also pray for each and every one of you!!! It just isn’t fair that there isn’t some cure that is available at a reasonable price to each and every one of you. I hope medical research quickly finds a way that all of you affected by a spinal cord injury finds relief from the horror of all of it and your lives can be restored to what you once had. In the meantime, stay positive, take one day at a time, pray, and keep a good mental attitude. Don’t let this pull you down because if you do it will only make your life and the people around you more miserable. Find things to do that will keep your mind off of what is going on in your body. Dump all of your problems on this fantastic resource when you are having a bad day. We are here for each other. Love and virtual hugs to each and every one of you!!! Emily Meyers New Jersey -------------------------------------------------------------------------------- From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Tuesday, January 18, 2011 10:30 AM To: em...@telephonelady.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM It is my right leg that is affected and is the one that has been the weakest all along. I may have to go to a lift, but my therapist says he can fix me. We’ll see. Emily, what all can your husband do? How did TM leave him? Janice From: Emily Sent: Tuesday, January 18, 2011 5:53 AM To: tmic-list@eskimo.com Subject: RE: [TMIC] TM My husband has a 1” lift inside of his shoe that was made especially for him due to the same problem….one leg shorter than the other. The orthotic is removable so he can put it in whatever shoe he wears. The one that is shorter is the one that has been effected by the spinal cord injury. -------------------------------------------------------------------------------- From: L T CHERPESKI [mailto:cherp...@msn.com] Sent: Tuesday, January 18, 2011 12:20 AM To: tmic-list@eskimo.com; Janice Nichols Subject: Re: [TMIC] TM Janice, I'm not sure if I wrote about it, but when I started another round of physical therapy several months ago, the therapist found that my left leg was one inch shorter than the right. And that really doesn't surprise me when I think about "walking/wobbling" with a cane for years. Our gait is slightly "off" The therapist worked on me from top of my neck to my toes for almost 2 hours, which didn't feel very good, but did I ever feel like a new person when she was done and I stood up!! Good luck, hope it all goes well and you find the relief you're looking for. Linda C (Eagle, ID) ----- Original Message ----- From: Janice Nichols To: tmic-list@eskimo.com Sent: Monday, January 17, 2011 9:14 PM Subject: [TMIC] TM Dear Friends, Some months ago, one of you wrote in asking if anyone had a problem with maybe 1 leg being shorter than the other since having TM. At the time, I had not heard of that being a possibility. I now know what whoever was talking about. My legs are still the same length and my spine is straight, but I am walking now as though one leg is slightly longer than the other. It is caused by the myelitis and they tell me with therapy, they can fix it - I hope. So, to whoever wrote in asking about that, I hope they got help for it. Something happens in the upper back hip area. Anyway, I am working on fixing this and hope no one else has this problem. Janice
