6 posts tagged “tsol brace”

Health Update

 It's been six months since I broke my back. Five months since the last surgery to fix my back. Its two months since the end of the radiation treatments.

So....the neurologist appointment.....

 The neurologist ordered physical therapy for ten weeks to increase my core strength so I can 'wean' myself out of my brace! He told me to wear it while traveling, driving, and when I have to sit for a long period of time so it reminds me to sit up straight. He would like to see me out of it by March so this is exciting stuff. It's also sort of scary because it hurts to sit without the brace on and there are no more good drugs to fall back on. I can take massive doses of ibuprofen and maybe some tramadol,  but no narcotics. I will remain on the very expensive medication for nerves that causes my legs to swell but I can cut down on it. I will also remain on a small dose of Cymbalta to help the nerve med work the right way.

I have been decreasing the time I wear the brace each day. I usually try to do something standing up and then something seated where I can retain good posture. It's been okay but it does feel weird without the brace.

I was told that the pain in my hip that comes from the nerves will eventual ease up as I stop using the brace. I'm not sure about that but I have to admit that my hip hasn't ached as consistently since I have tried to not use my brace while seating while watching TV in the last 48 hours.

 I'll have to get one of those exercise balls and try to use that for an office chair.  That's supposed to help increase core strength and help with my posture.

 I was tested for protein in my blood which would indicate a return of the cancer. I have to go back for some additional testing but I am stalling until January.  I'm sort of tired of doctors and consistently managing my health. I need a little two week vacation from this. The oncology team thought this wasn't a bad idea but ordered a 24 hour urine test anyways. So I'll be doing that this week and we'll see what the gamma levels are and go from there.

If they are high I can do more treatment and go from there.  I have oncology appointments during the first week of school but they are in the late afternoon so I shouldn't miss anything at work.

We'll see how I do. I am not looking forward to physical therapy, cancer treatment and work but I'm not there yet. I just need to keep thinking good thoughts.

 
Besides all of this stuff....I have to get a root canal. I have a nasty infection on the root of one of my back molars. That's part of what has been keeping me up at night.

 Work stuff

 I got very angry and frustrated last week at work. It's a variation on a theme. In the new year I am determined to leave the martyr attitude behind and work on a pro-active response to challenges. It's time to take a different approach with the parts of my job I don't enjoy.

I am preparing my stuff for next semester. I try to do a little bit each day.  I need to hit this one out of the park for the students. I need to do well because I know I am a good teacher and I enjoy that part of my job.

Personal Stuff

Otherwise I have read some good books and I am watching episodes of "The Office" which I had never consumed before. One of the books has some characters in it that broke my heart. Maybe I'll write a review. 

I'm going to a wedding this week so that should be wonderful. I think winter weddings are sort of romantic. And you know I'm not that way.

I'm going to visit my sister and my family for Christmas for the first time since I am not sure. The last clear Christmas Holiday I remember spending in Connecticut was in 2000 before my mom died. Now I know I have been there for the Holidays since then but I can't remember it very well. Maybe 2003 before I got the house? I am not sure on this one.

There's some other stuff happening but I don't really feel like sharing at the moment. There are times I feel like being a private person despite my public personae. Sometime it's just painful to look at the parts of yourself that aren't that pretty to look at. Since I am uncomfortable with those parts I am not sure I want to share it with everyone.

One last thing....my roommate is back since they don't let you live in the dorm over vacations. It's been pleasant so far but I made him leave the really good speakers for his computer in his room. I think that was wise.

I am still struggling with some pain in my hip. Sometimes my back hurts since it got colder so that might be because of the metal in my back but I am not sure about that. I wish I had better pain control at night. I don't know why it's so bad at night. I don't sleep on that hip. Or I try not to.

I am still struggling with sleeping. .I thought I had it made last night. I went to bed before 2am but still managed to sleep to a very late hour I will not record here. Let's just say by the time I got up I was still sleepy and wanted to lie down again. I was suppose to go to the President's Concert thing at school but I looked at the snow and thought why bother? It's warm in here and cold out there.  I am sort of sleepy now. I wonder if I could lie down and go to sleep now? it's a fairly civilized hour. It's not even bar time.

I am still struggling with medical issues.  I have no idea what the neurologist will say on Thursday. I was supposed to go last Thursday but the weather was less than ideal for someone who isn't all that mobile for driving through the no man's land with no cell service for half the drive by herself. Maybe I can get someone to go with me or maybe the weather will be better. I also have more cancer related appointments in January that sort of conflict with my classes so I will have to just figure it out.

I am also struggling with the weather. I hate not being able to shovel. Not that I liked it that much in the first place. I did a little shuffling of snow today to see if I could justify calling the plow guy but I think I'll wait and see cause I have 4 wheel drive. I'll just make sure the truck is warmed up when I have to bust through the wall at the end of the driveway caused by the town's plow trucks. I just wish my kid would come home and shovel. I don't want to wreck the healing my back has done with snow shoveling. If I hurt my back it should be because I went surfing or snow boarding not shoveling.

This semester is all over but the shouting and the next semester is on it's way. We'll have to see how I do. I just hope I have the strength to go back to school and do physical therapy at the same time. I am also going to have to walk more. I want to lose some weight.

The Huskers and I Are Having The Worst Week Ever.

I would like to tell you that I am having a worst week than the Huskers or my week has been as horrible as theirs has been. Now I know that is difficult for some of you to believe but I had some disappointing news at my ortho-neuro appointment. It may actually rival the problems my friends are having down at Big Red Athletics.

The Huskers and their fans are having a terrible time of it this week. Many of them are rejoicing at the firing of Athletic Director Pederson but still upset that the team isn't performing as well as it should. The University Chancellor felt the best way to handle this would be fire the AD. In my mind not a bad start, as the AD sets the tone for success for any athletic department. I know this from working under three very different athletic directors at WSC.

 

 The hiring of Pederson had always pissed me off. I hated that he didn't honor many traditions and just seemed to be motivated by celebrity or endorsements. Now I know some of you will argue with me about that but it made me angry that one of the first things the man did was fire former coach Solich, the handpicked replacement when Osborne left.  Solich was having a bit of rough time but wouldn't anyone after Osborne left? I mean come on. Give the guy a chance to build a team and tradition of his own. I am not sure he was given the opportunity to do that under the guidance of AD Pederson.

 

Callahan is doing the best he can and may well be fired at the end of this season but again I am not sure this would be
the best course of action. I think we as a state need to have some patience and remember that we aren't dealing with the players or the coaching style we had in the mid-ninties when we were back to back. That doesn't happen to every team every decade. Heck, some teams are lucky if that happens every century. We just have to be patient. Most Husker fans aren't. They are vocal bunch that have made their voices heard on national and local sports radio as well as numerous websites, message boards and blogs. You have to admire the older fans that have embraced the new technology to express their fears and hopes for their beloved team.

 

So I am not sure what's in the future for the Huskers and their fans. You will see how this applies to my life shortly.  

 

When I had my last oncologist visit the news was great. The future was so bright we all needed shades. I was winning. I was a cancer survivor. My game plan for recovery was working. My healing team was behind me and helping me to do all of the things I needed to heal successfully like eat high protein foods, take walks, and keep me in a positive frame of mind. The tone for success had been set and I was sure it was going to carry over into my ortho-neuro report.

 

I went to the ortho-neuro doctor this week. He is not sure what is in my future. I have been ordered to wear my TSOL brace for an additional six weeks which for those who are counting would make for a full six months after my first surgery and five months after the third surgery to fix my back. I hate the TSOL brace because it is a hot, limiting, uncomfortable thing to wear. It also takes me a few minutes to 'strap up' when I need to get out of bed to go to the bathroom or get up to answer the door after a nap. I also do not like the TSOL because it limits my fashion items to stretch pants that will fit over the wide parts at my hip. The brace does not make for a very flattering silhouette. It's damn sexy if you are interested in boffing an Imperial Storm Trooper but who the heck would want to do that.

I was hoping the doc was going to let me out of the brace based on my x-rays. He is pleased with the amount of fusion going on but has warned me that the 'front' part of the appliance planted in my back may never fuse correctly because of it's position. That will be okay but I will always have to be extra careful so this piece doesn't go slamming into my lungs. kidneys, or ribs. No skiing or rugby for me.

 

 After some discussion of how things are fusing the orthro-neuro told me that the horrible pains that I have been having in my hip may not go away. It's hurt in some way since I got out of the hospital on August 23rd. It's been x-rayed and cat scanned with no significant findings.  The pain is probably due to nerves in my back that were located in proximity to the appliance site. One of these nerves goes across the pelvis and is in charge of all of the feeling in my hip area. He is not sure that this pain will go away on a regular basis. This was not the news I wanted to hear about ortho-neuro recovery. I want my left hip to stop hurting now because it interferes with my sleep and also my ability to walk more than a mile which I need to do to build up stamina for going back to work.

 

The problem is these nerves are right up against the appliance that is implanted in my back where I have no vertebrae because of the cancer so they could be irritated because of that. The nerves could also be irritated because of the radiation therapy for the cancer. I have read that this is a common problem for cancer patients. Since I am only two weeks out from the radiation therapy the ortho-neuro would like me to be more patient about this pain.

 

The ortho-neuro would like to see me be more realistic and patient about my orthopedic recover. He said that now that the cancer part of my health difficulties is behind me I can concentrate on the orthopedic and neurological aspects of what's been wrong with me. He says I haven't had that much time for recovery. Three months is almost nothing to the body at my age. I am not a teenager producing bone and regenerating the mylan around my nerves at the speed of light.

 

All of this is just very frustrating. I want a winning season now but I can't have one because of a variety of issues, some of which are not under my control so I need to be more patient about how I proceed with myself. I need to set the tone for success by not being to impatient and realizing that there will be victory done the road. I just need to have the patience to do all of the things that need to be done to obtain it.

 

I think the Huskers and their fans need to do the same thing.

 

So.......all of you die hard Huskers are allowed to make fun of me if you will but this is what I believe. I want them to have a good season.  There have been some disappointing news along the way for the Huskers and myself but each week brings a new opportunity for success so I think there is still time to have a winning season.  

 

I would hope the Huskers would do a better job because I'm a middle aged woman and those guys are big tough highly trained athletes in their prime.

TSOL Brace 101

 

    

I am writing out some tips for those folks who are googling the TSOL brace. THe TSOL brace is used mostly for folks that have scoliosis, spinal injury,  or a broken back. I have a broken back. My TSOL brace is sort of weird because it has breasts built into it. It was custom made. Some models aren't but you can make adjustments for these sorts of things in different ways.  Here are some things that I wish someone had told me about it. Being encased in plastic from your hips up past your breasts isn't the most comfortable thing. The reason why your doctor will require the brace is to prevent you from bending your spine during the recovery. The best way to do this is to remain immobile in bed as much as possible but that can cause other problems including blood clots. It's worth the risk to wear the brace and move around a bit as long as you are gentle and take it easy upon yourself.

There are several different types of braces. There's the Milwaukee, Charleston Bending Brace, and the Boston Brace. Or you might have a custom made orthotic like mine.

       Some of the healthcare workers you'll be working with might not know much about your specific brace. They will know what it is for but since they haven't worked with one they won't know many of things that can help you use your brace more efficiently and comfortably.

 

10. Make sure it fits correctly. Your doctor or the nurse isn't always the one to check on this. Sometimes you need to talk to a physical therapist who is acquainted with the brace or get the person who made your brace to check it. If you lose or gain weight in the hospital this will change how the brace fits and works on your body. . I wore mine for at least two weeks when about ten inches needed to be trimmed off of it. This happened because no one at the hospital was sure how it should fit. It should fit across the small of your back firmly with no gaps. If you are curvy like I am this can be a difficult thing to accomplish.  You could actually be hurting your back by not paying attention to this. You should learn how your brace should fit and how to put it on. Not everyone in the hospital will know how to do this.

 

9. Have your orthopedist be clear about how they want you to put the brace on. Are you to sit on the edge of the bed or are you to try to get the brace on while laying down? This is important because the brace is supposed to prevent at least 50% of the twisting that our spine does when we lay down or sit up.

 

8. Wear close fitting t-shirts underneath the brace. Wrinkles are very uncomfortable and could cause long term blistering or skin problems for you. You can use baby powder to help prevent this. Change your shirt if you sweat alot during physical therapy. You will be more comfortable.

Some folks wear pants underneath and a large shirt on top. The only thing that might not work with that combo is that it is difficult to get in and out of your clothes and brace to go to the bathroom.

The easiest clothing combo to manage is elastic waisted pants with a t-shirt on underneath the brace. I would also suggest going commando. It's much easier when you have to manage the bathroom. You can wear a shirt or jacket over your brace if you feel like it. Just remember your brace is like your own little sweat lodge. It's hot under there. Again be creative, and do what you want.

 

 

7. If you have to shower with your brace on use a blow dryer to help dry the straps faster. You can do this while standing or sitting in the bathroom or you lay down while someone does it for you. Just be careful not to melt or shrink anything. Hold the dryer at least two inches from the straps. Towel dry first and then use your blow dryer. If you want to air dry your brace it usually takes between two to three hours to dry. If you shower at night this might be a good solution for you.

 

6. You should wipe your brace down everyday with a damp cloth to keep it clean. You can also wipe it with Febreeze if you are having issues with odor. If you use enough deodorant this shouldn't be an issue.

 

5. Try to learn to put your brace on yourself if possible. It will help you feel more independent.

 

4. Get the right tools to help yourself with daily living activities. Assistive Devices can help you become more impendent because you will not be able to bend while you are in the brace. I have talked before about how bending hurts.

 

I have something to help me put on my socks and shoes. I am surprised that you don't see more commercials for the device that I have dubbed "The Socker!". It's a handy device that you slip your socks onto that helps you put them on your feet without bending over. My sneakers have elastic shoelaces so I don't have to untie them everyday. I am also surprised not see these more often because they would be great in kid's sneakers. I have a reacher tool that helps me with a variety of tasks including picking remotes up off floor when I drop them.

 

 I wasn't going to talk about this last tool because it's used for a personal area but I was watching a "True Life" special on MTV and some of the little people on there were talking about this. One of them held up the exact tool that I use for toileting needs. The occupational therapist told me that I could use tongs for this. I decided to buy the actual tool and I was glad I did. It is more comfortable than the tongs. So don't skimp in this area.

 

3.  Feel free to decorate your brace. It's white, it's boring and doesn't have much resal value on ebay. Some of the more creative things I have seen are camouflage, and stars and strips contact paper. Or you can paint or draw on it.

 

2. Your brace was expensive.  So try to think of other ways you can use your brace after you are done with it. It can be recycled into a great Halloween costume. There are many choices including wonder woman, bohemian opera singer woman, Imperial storm trooper and the new white Teenage mutant ninja turtle.

 

1. Remember to give your body a break from the brace. Take it off sometime during the mid day and lay down. You don't have to nap. I use this time to read, listen to music, or meditate Your spine will thank you.

My X-Ray: A Non-Medical Explanation

 

 

When I get screw up and get hurt, I do it in a masterful style that requires specialized medical attention. I broke my back because there was a large tumor hiding in my L2 vertebra. I assumed as my doctors did that the bone density for the L2 wasn't that great. It wasn't. The surgeon said something about a gooey jello like mess that he had to scoop out that area. I am very lucky because it did not effect my spinal cord just the protection around it.

I guess this is what my spine would look like if I had not broken my back on that hot sweaty day in July. I think there is an xray of my back from February of 2007 but I haven't requested it from the clinic because everyone said it looked normal no lesions, no cancer. I would have no idea what I would be looking for anyways.

Now my back Xray requires some explanation. It does look strange to have all that hardware in me for a simple compression fracture of the L2 verterbra. I needed extra support to make sure my spine would work properly.  I think my surgeon decided on the third surgery that he should just take pieces of his Tinker Toys or an Erector set to build me a spinal column since mine was full of cancer. That is the joke around the Cancer Center. They like to think of a young Dr. Reeder building spines with Tinker Toys. All I can say is thank god he did so he would know how to reinforce my spine. I have an odd and impressive bunch of hardware in there that I am not even sure I want to try to explain. I do know that it makes my back a bit stiff and it will take awhile for fusion to occur. My back surgery is sort of like a spinal fusion they would do for people with disc problems. There are plates, screws, and other items in there that have to have bone grow or fuse around them. It's a long process that will take almost a year or more.

I know I have to wear my dang TSOL  (Thoracic Lumbar Sacral Orthosis) brace till almost Thanksgiving. I hate it but it will help me keep my back supported so it can fuse and heal. According to the U of Penn Health Systems because the type of compression fracture I have was caused by a tumor, the outcome depends entirely on the type of tumor involved and is variable. This is why I have no idea what's in store for me down the line.

I don't have pain in my back except it feels sort of stiff. I do have pain in my hip. I am going tomorrow for a CT scan of the soft tissues there to see if we can't find out why my hip hurts so much that it has been keeping me awake for the past week. Wish me luck! 

      Today I had an appointment with the neurosurgeon. My surgeon is Dr, Ralph Reeder. According to his bio he specializes in Degenerative Spine, Spinal Deformity, Trauma, Tumor-Infection of the spine, neck, and back.  He is board certified and belongs to the   Congress of Neurological Surgeons and North American Spine Society. He is an interesting guy for a neurosurgeon.

  Reeder  is a member of a rock band of doctors called, Dr. Dendrite and the Twisted Synapses . To quote the lead guitarist Dr. Case, "is sort of in the gray matter of the brain and a synapse is in the white matter.... Dr. Dendrite would be the head guy, the nerve cell, and the synapses are the connections. And if you change connections, hopefully for the better, you might twist them" ¹  Dr. Reeder also has pictures on his website of himself with red hair, brown hair, and I am pictured with him below with what I think is his natural color which is grey.  

 
      I liked Dr. Reeder from the moment I met him despite the fact I was hoping to pass out from the pain I was in while he was explaining that he had to scoop out part of spine to make me feel better. Reeder is also the one who insisted I get treated immediately for the myeloma immediately. He got me the best oncologist. He spoke to my sister and my family when I needed him too. He made sure that when my family had gone home that someone looked in on me everyday whether it was himself, or one of the PAs,  Pat. Reeder told me he had alot of hope for me because my tumor was so atypical. He really took time to explain why I had to go back to the hospital the second time. He understood why I got so upset and angry about that.   He has a soft reassuring voice and he usually comes in the room with a smile and a SWAT team of medical professionals.

     Today I didn't see Reeder or my favorite Physicians Assistant Pat (who deserves his own entry for his help in my recovery. There was another screw up with appointments made upon my discharge from the Mercy. Every appointment they made for me upon discharged was screwed up and when I realized that after the first one I was vigilant about confirming appointment times and dates. This screw up was on CNOS's part. I was very disappointed and angry that I couldn't see someone who was familiar with my case.

      CNOS is the huge ortho-neuro group that Reeder is a part of . CNOS stand for  Center for Neurosciences, Orthopedics & Spine. I did get to see Sandy,  a nurse practitioner who remembered me from the hospital. She was one of the members of Reeder's SWAT team who marched in during some of my lowest moments at Mercy Hospital. She said I was a good patient but she was so happy to see me with color in my face with a sense of humor.

      The good news from Sandy and some anonymous doctor as well as a  radiologist is that spine is fusing with the large appliance in my back. That is great news. It looks wonderful and I am healing like a young person. The fear was that because of my age and gender I might not make enough bone to for this fusion to take place correctly.  According to Sandy the fusing will take between six months to a year but my initial month out X-ray looks good. I am so happy!

       My annoying hip pain could be from the brace or from sleeping on it. I got kudos for icing it and using ibuprofen but really no relief from the medical profession. The rest of my questions were answered in a vague way. If I want to drive and feel comfortable I can do that.  Sandy did commend me for trying to walk and for lifting one pound weights so that I can keep my upper body strength up. She also told me that when my initial 90 day wearing of the brace was done in November that they would send me back to Physical Therapy for my core muscles because they would be so out of shape from being in the brace and using it for support. There is a long road ahead but everything looks good.

     I can't even explain how relieved I was to look at the x-ray with her and see light shadows which indicate bone growth. This is what I want for my back to stay stable so I can walk around and maybe bend someday.

 This is wonderful news!

1 - Taken from http://www.cnos.net/dr_dendrite.htm website.