Showing posts with label treatment. Show all posts
Showing posts with label treatment. Show all posts
Monday, August 19, 2013
My Left Kidney.
haha (the title's making me chuckle)
Hello Everyone,
Last week I had an appointment with my Urologist. I wish I had kept the letter because I wanted to know the exact dimensions of the stone that the CT showed up. Anyhow it seems to be at the bottom of my kidney which is blocking the flow of urine into my bladder. No wonder I've been getting so many UTI's the last few month (yay...NOT!)
He has booked me in for next Monday, he wants to just explore what's going on then decide if he needs to remove the stone if he thinks it's going to effect my kidney/bladder in the long run. I have my fingers & toes crossed that he will get it out!!
The stone is left over from the one that he removed last November. That stone was the biggest one I have ever had! I didn't want to see it as I have a pretty weak stomach for those kinds of things which most probably find strange due to all the operations I've had over the years. When he takes most stone out he "blast them out" and because they're shattered into so many tiny pieces it means you can leave bits behind. Over time (say months) if the stone hasn't come out on its own then it gets stuck and just grows and grows until bam! It needs to be removed. I have this procedure anywhere between every year up until 3 years. It always seems to be my left kidney in which this thing keeps recurring! Dr. Vaughn says that this kidney is hard to get to, not only is it smaller (everyone's is I believe) but the "tube" leading from the kidney to bladder is smaller and my kidney isn't in the "usual" spot which means it takes longer for him to find and get in there to blast the stone out.
When I was in my early teens I made a life changing decision to take over one part of my life. This meant no more help was needed from family or nurses. I don't exactly remember how we found out about this thing but all I know is that when Mum and I heard about it we (I) knew it was something I had to do to take control over my life, to be able to one day maybe live almost independently (which I do now). We researched what is know as an SPC. SPC stands for Supra Pubic Catheter. A SPC Catheter is a tube that goes into your bladder through your abdominal wall (at your pubic bone) which continuously drains urine from your bladder. It is held in place by an internal balloon that you cannot see. The catheter should be changed every 4-6 weeks. From day one my bladder has been unable to sustain this as i have so much "yucky" stuff in my bladder so mine is changed 2-3 weeks. I remember Mum and I made an appointment with a Dr (not Dr Vaughn) who did this procedure. He took one look at me and says something on the lines of "I don't recommend a SPC for a girl as young as yourself!". Then he turned to my mother and told he that "you're daughter could end up getting cancer because of the SPC". Now if you all knew my mum she is one tough lady... Not much makes her cry! When caring for someone with Spina Bifida I guess you have to be a little tough. Anyway as soon as this Dr said the word cancer I just looked over at mum (I was in shock) and I saw her cry! I don't think I've ever seen my mum cry before that day. It broke my heart that the one thing that I could do for myself could give me something so bad!!. Fast forward a few months and we had heard that there was a Urologist that had just started working at the Private hospital. He had moved from Melbourne and in my opinion it's the best thing he has ever done!! If it wasn't for him I don't think I would be living the life I have now. I know he won't read this but...
thank you Dr. Vaughan you have changed my life forever!!
There is not much information out there only from other people's experience. If you would like to know more please leave a comment & I shall try my hardest to answer you questions.
The catheter is something I have been wanting to talk about for a while but have not plucked up the courage (only close family know about it) to speak or write about. But in the end my book is about my life, not just all the good and things I want to share but things that are bad and things I keep close to my chest. If I'm only to write about my good experiences it will never be out there to help other's understand what I've been though or to help those with SB. Which is why I want to write my book in the first place.
I don't tell people about it because I am embarrassed and I don't want to be bullied or people to make fun of me.
But I hope you can now understand a little more about me.
Have a great day guys & keep your fingers crossed this kidney stone gets taken care of!
Amanda <3.
Monday, March 4, 2013
exciting news :)
Hello everyone,
I have the most exciting news someone with Lymphedema could possibly have!! After a long & tedious 2 year battle with a pressure sore on my left heel I am pleased to announce that...
It has finally healed.
The nurses & Dr's kept telling me that I was going to loose my foot/leg. I was so distrort. So for them to actually be happy with my progress it's fantastic.
have a great day/night all.
Amanda <3
Saturday, October 27, 2012
busy week!
Hey Everyone,
This weeks been a busy one!
First I had an appointment with my Urologist on Wednesday afternoon. He has sent me off to get a CT scan of my Kidneys & Bladder. Those damn kidney stones have been giving me hell for the past few months!! I've had said stones in for 3.5 years now, they hasn't grown much so nothing was done. But I've been getting a lot of UTI's and my SPC [will explain in next post] has been changed more frequently Grr...
Thursday was World Spina Bifida & Hydrocephalous Awareness Day!! In the afternoon we had dance lessons!
Friday the community nurses came to change my bandage on my left foot. I have had a wound on my heal for almost 2 years now. It's great now because its very close to healing. Can I get a "hallalulia!!!!" [more about it later]
Saturday [today!] we went to a local fair/show. It was SO much fun!! Even Hailee went on one of the rides, the Feriss Wheel!! If you know her she HATES anything like that! We go her a show bag [Dora of course] and we got Daddy one too! hehe. I shall put some photos up tomorrow! I won myself one of those "over the top-huge" plush animals, Giraffe. I am totally in love with him [whom has no name].
Well that's my week! How was yours? I have an appointment on Tursday for CT so will let you know how that goes!
Amanda
<3
Oh yah almost forgot...we have some pretty exciting news about miss Hailee. Will let you in on it next week ;)
Friday, September 28, 2012
lymphedema.
Is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system.
Tissues with lymphedema are at risk of infection.
Lymphedema affects approximately 140 million people worldwide
Lymphedema may be inherited (primary) or caused by injury to the lymphatic vessels (secondary). It is most frequently seen after lymph node dissection, surgery and/or radiation therapy, in which damage to the lymphatic system is caused during the treatment of cancer, most notably breast cancer.
associated with accidents or certain diseases or problems that may inhibit the lymphatic system from functioning properly.
The diagnosis or early detection of lymphedema is difficult. The first signs may be subjective observations such as "my arm feels heavy" or "I have difficulty these days getting rings on and off my fingers". These may be symptomatic of early stage of lymphoedema where accumulation of lymph is mild and not detectable by any difference in arm volume or circumference.
Stages
Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the "non- pitting" stage: when pressed by the fingertips, the tissue bounces back without any indentation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered "pitting": when pressed by the fingertips, the affected area indents and holds the indentation. Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.
Grades
Lymphedema can also be categorized by its severity (usually referenced to a healthy extremity):[citation needed]
Grade 1 (mild edema): Lymphedema involves the distal parts such as a forearm and hand or a lower leg and foot. The difference in circumference is less than 4 centimeters, and other tissue changes are not yet present.
Grade 2 (moderate edema): Lymphedema involves an entire limb or corresponding quadrant of the trunk. Difference in circumference is more than 4 but less than 6 centimeters. Tissue changes, such as pitting, are apparent. The patient may experience erysipelas.
Grade 3a (severe edema): Lymphedema is present in one limb and its associated trunk quadrant. The difference in circumference is greater than 6 centimeters. Significant skin alterations, such as cornification or keratosis, cysts and/or fistulae, are present. Additionally, the patient may experience repeated attacks of erysipelas.
Grade 3b (massive edema): The same symptoms as grade 3a, except two or more extremities are affected.
Grade 4 (gigantic edema): Also known as elephantiasis, in this stage of lymphedema, the affected extremities are huge due to almost complete blockage of the lymph channels. Elephantiasis may also affect the head and face.
Treatment
Treatment for lymphedema varies depending on the severity of the edema and the degree of fibrosis of the affected limb. Most people with lymphedema follow a daily regimen of treatment as suggested by their physician or certified lymphedema therapist. The most common treatments for lymphedema are a combination of manual compression lymphatic massage, compression garments or bandaging. Complex decongestive physiotherapy is an empiric system of lymphatic massage, skin care, and compressive garments. Although a combination treatment program may be ideal, any of the treatments can be done individually.
Compression
[edit]Garments
Elastic compression garments are worn by persons with lymphedema on the affected limb following complete decongestive therapy to maintain edema reduction. Depending on the therapist's discretion, a compression garment may be custom-fit or purchased in over-the-counter, standard sizes. Compression garments are meant to be worn every day to maintain edema reduction and must be replaced on a regular basis. Support garments may be the only Garment of Choice for patients with Scrotal edema.
[edit]Bandaging or wrapping
Compression bandaging, also called wrapping, is the application of several layers of padding and short-stretch bandages to the involved areas. Short-stretch bandages are preferred over long-stretch bandages (such as those normally used to treat sprains), as the long-stretch bandages cannot produce the proper therapeutic tension necessary to safely reduce lymphedema and may in fact end up producing a tourniquet effect. During activity, whether exercise or daily activities, the short-stretch bandages enhance the pumping action of the lymph vessels by providing increased resistance for them to push against. This encourages lymphatic flow and helps to soften fluid-swollen areas.
[edit]Sequential gradient pump therapy
Compression pump technology utilizes a multi-chambered pneumatic sleeve with overlapping cells to promote movement of lymph fluid. Pump therapy may be used in addition to other treatments such as compression bandaging and manual lymph drainage. In many cases, pump therapy may help soften fibrotic tissue and therefore potentially enable more efficient lymphatic drainage. Sequential pump therapy may also be used as a home treatment method, usually as part of a regimen also involving compression garments or wrapping.
A Stanford University medical study showed that patients receiving the combined modalities of MLD/CDT and pneumatic pumping had a greater overall reduction in limb volume than patients receiving only MLD/CDT.[14] However, some therapists have begun to raise concern that compression pumps can cause genital swelling when used on persons with leg lymphedema.
Surgical treatments for lymphedema
Several effective surgical procedures exist to provide long-term solutions for patients who suffer from lymphedema. Prior to any lymphedema surgery, patients typically have been treated by a physical therapist trained in providing lymphedema treatment for initial conservative treatment of their lymphedema. Complete decompression therapy (CDT), manual lymphatic drainage (MLD) and compression bandaging are all helpful components of conservative lymphedema treatment.
Lymphatic vessel grafting
With the possibilities of advanced microsurgical techniques lymphvessel can be sutured and used as grafts, a technique which is well known in vascular surgery. Locally interrupted or obstructed lymphatic pathway, mostly after resection of lymph nodes, can be reconstructed by a bypass using lymphatic vessels. These vessels are specialized to drain lymph by active pumping forces. These grafts are connected with main lymphatic collectors in front and behind the obstruction. The technique is mostly used in armedemas after treatment of mammary carcinomas and in unilateral edemas of lower extremities after resection of lymphnodes and radiation. The method was developed experimentally at the Institute of Experimental Surgery, the Ludwig Maximilians University (LMU) in Munich. It was introduced as treatment in 1980 by Prof. Ruediger Baumeister[16].
The method is proved to be effective[17]. Follow up studies showed significant reduction of volume of the extremities even 10 years after surgery[18].
The patients, who had been previously treated with both MLD and compression therapy, gained significant improvements in quality of life after being treated with lymphatic vessel grafting[19]. Lymphoscintigraphic investigations at the Clinic of Nuclear Medicine at LMU showed a lasting enhancement of lymphatic transport after grafting[20].
The patency of lymphatic grafts have been demonstrated by the Institute for Clinical Radiology after more than 12 years, using indirect lymphography and MRI lymphography.
Tissues with lymphedema are at risk of infection.
Lymphedema affects approximately 140 million people worldwide
Lymphedema may be inherited (primary) or caused by injury to the lymphatic vessels (secondary). It is most frequently seen after lymph node dissection, surgery and/or radiation therapy, in which damage to the lymphatic system is caused during the treatment of cancer, most notably breast cancer.
associated with accidents or certain diseases or problems that may inhibit the lymphatic system from functioning properly.
The diagnosis or early detection of lymphedema is difficult. The first signs may be subjective observations such as "my arm feels heavy" or "I have difficulty these days getting rings on and off my fingers". These may be symptomatic of early stage of lymphoedema where accumulation of lymph is mild and not detectable by any difference in arm volume or circumference.
Stages
Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the "non- pitting" stage: when pressed by the fingertips, the tissue bounces back without any indentation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered "pitting": when pressed by the fingertips, the affected area indents and holds the indentation. Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.
Grades
Lymphedema can also be categorized by its severity (usually referenced to a healthy extremity):[citation needed]
Grade 1 (mild edema): Lymphedema involves the distal parts such as a forearm and hand or a lower leg and foot. The difference in circumference is less than 4 centimeters, and other tissue changes are not yet present.
Grade 2 (moderate edema): Lymphedema involves an entire limb or corresponding quadrant of the trunk. Difference in circumference is more than 4 but less than 6 centimeters. Tissue changes, such as pitting, are apparent. The patient may experience erysipelas.
Grade 3a (severe edema): Lymphedema is present in one limb and its associated trunk quadrant. The difference in circumference is greater than 6 centimeters. Significant skin alterations, such as cornification or keratosis, cysts and/or fistulae, are present. Additionally, the patient may experience repeated attacks of erysipelas.
Grade 3b (massive edema): The same symptoms as grade 3a, except two or more extremities are affected.
Grade 4 (gigantic edema): Also known as elephantiasis, in this stage of lymphedema, the affected extremities are huge due to almost complete blockage of the lymph channels. Elephantiasis may also affect the head and face.
Treatment
Treatment for lymphedema varies depending on the severity of the edema and the degree of fibrosis of the affected limb. Most people with lymphedema follow a daily regimen of treatment as suggested by their physician or certified lymphedema therapist. The most common treatments for lymphedema are a combination of manual compression lymphatic massage, compression garments or bandaging. Complex decongestive physiotherapy is an empiric system of lymphatic massage, skin care, and compressive garments. Although a combination treatment program may be ideal, any of the treatments can be done individually.
Compression
[edit]Garments
Elastic compression garments are worn by persons with lymphedema on the affected limb following complete decongestive therapy to maintain edema reduction. Depending on the therapist's discretion, a compression garment may be custom-fit or purchased in over-the-counter, standard sizes. Compression garments are meant to be worn every day to maintain edema reduction and must be replaced on a regular basis. Support garments may be the only Garment of Choice for patients with Scrotal edema.
[edit]Bandaging or wrapping
Compression bandaging, also called wrapping, is the application of several layers of padding and short-stretch bandages to the involved areas. Short-stretch bandages are preferred over long-stretch bandages (such as those normally used to treat sprains), as the long-stretch bandages cannot produce the proper therapeutic tension necessary to safely reduce lymphedema and may in fact end up producing a tourniquet effect. During activity, whether exercise or daily activities, the short-stretch bandages enhance the pumping action of the lymph vessels by providing increased resistance for them to push against. This encourages lymphatic flow and helps to soften fluid-swollen areas.
[edit]Sequential gradient pump therapy
Compression pump technology utilizes a multi-chambered pneumatic sleeve with overlapping cells to promote movement of lymph fluid. Pump therapy may be used in addition to other treatments such as compression bandaging and manual lymph drainage. In many cases, pump therapy may help soften fibrotic tissue and therefore potentially enable more efficient lymphatic drainage. Sequential pump therapy may also be used as a home treatment method, usually as part of a regimen also involving compression garments or wrapping.
A Stanford University medical study showed that patients receiving the combined modalities of MLD/CDT and pneumatic pumping had a greater overall reduction in limb volume than patients receiving only MLD/CDT.[14] However, some therapists have begun to raise concern that compression pumps can cause genital swelling when used on persons with leg lymphedema.
Surgical treatments for lymphedema
Several effective surgical procedures exist to provide long-term solutions for patients who suffer from lymphedema. Prior to any lymphedema surgery, patients typically have been treated by a physical therapist trained in providing lymphedema treatment for initial conservative treatment of their lymphedema. Complete decompression therapy (CDT), manual lymphatic drainage (MLD) and compression bandaging are all helpful components of conservative lymphedema treatment.
Lymphatic vessel grafting
With the possibilities of advanced microsurgical techniques lymphvessel can be sutured and used as grafts, a technique which is well known in vascular surgery. Locally interrupted or obstructed lymphatic pathway, mostly after resection of lymph nodes, can be reconstructed by a bypass using lymphatic vessels. These vessels are specialized to drain lymph by active pumping forces. These grafts are connected with main lymphatic collectors in front and behind the obstruction. The technique is mostly used in armedemas after treatment of mammary carcinomas and in unilateral edemas of lower extremities after resection of lymphnodes and radiation. The method was developed experimentally at the Institute of Experimental Surgery, the Ludwig Maximilians University (LMU) in Munich. It was introduced as treatment in 1980 by Prof. Ruediger Baumeister[16].
The method is proved to be effective[17]. Follow up studies showed significant reduction of volume of the extremities even 10 years after surgery[18].
The patients, who had been previously treated with both MLD and compression therapy, gained significant improvements in quality of life after being treated with lymphatic vessel grafting[19]. Lymphoscintigraphic investigations at the Clinic of Nuclear Medicine at LMU showed a lasting enhancement of lymphatic transport after grafting[20].
The patency of lymphatic grafts have been demonstrated by the Institute for Clinical Radiology after more than 12 years, using indirect lymphography and MRI lymphography.
Wednesday, August 15, 2012
my struggles with lymphedema [info.]
Hello Everyone,
today I thought I might tell you all the story of how I came to live with Lymphedema. But first I thought I should explain what Lymphedema actually is:
Lymphedema is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. Some of that tissue can turn "nasty" and become infected. Lymphedema affects around 140 MILLION people worldwide.
There are quite a few "stages/grades" which I will talk. Lymphedema can be inherited (know as primary) lymphedema OR like myself it can be caused by an accident or injury to the vessels (known as secondary). It happens when lymph nodes are dissected via surgery or something like radiation therapy.
In my case I think (yes still not 100% sure) that after I had major surgery on my spine, to place a rod and screws onto my spine to correct the scoliosis. The doctors actually took out or "snipped" one(1) or more of my lymph nodes. Which in turn caused as you read before damaged to them and I now have to live with lymphedema.
To diagnose or to detect lymphedema early is difficult. The first signs may be subjective observations such as "my arm feels heavy" or "I have difficulty these days getting rings on and off my fingers". But unfortunately I was unable to tell as my legs are effected and the worst one being my left leg I have no feeling in at all.
Stages
Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the "non- pitting" stage: when pressed by the fingertips, the tissue bounces back without any indentation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered "pitting": when pressed by the fingertips, the affected area indents and holds the indentation. Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.
Grades
Lymphedema can also be categorized by its severity (usually referenced to a healthy extremity):[citation needed]
Grade 1 (mild edema): Lymphedema involves the distal parts such as a forearm and hand or a lower leg and foot. The difference in circumference is less than 4 centimeters, and other tissue changes are not yet present.
Grade 2 (moderate edema): Lymphedema involves an entire limb or corresponding quadrant of the trunk. Difference in circumference is more than 4 but less than 6 centimeters. Tissue changes, such as pitting, are apparent. The patient may experience erysipelas.
Grade 3a (severe edema): Lymphedema is present in one limb and its associated trunk quadrant. The difference in circumference is greater than 6 centimeters. Significant skin alterations, such as cornification or keratosis, cysts and/or fistulae, are present. Additionally, the patient may experience repeated attacks of erysipelas.
Grade 3b (massive edema): The same symptoms as grade 3a, except two or more extremities are affected.
Grade 4 (gigantic edema): Also known as elephantiasis, in this stage of lymphedema, the affected extremities are huge due to almost complete blockage of the lymph channels. Elephantiasis may also affect the head and face.
Treatment available
Treatment for lymphedema varies depending on the severity of the edema in the effected limb. Most people with lymphedema follow a daily routine of treatment as suggested by their physician or certified lymphedema therapist. The most common treatments for lymphedema are a combination of lymphatic massage, compression/bandaging. Complex decongestive physiotherapy is system realistic of lymphatic massage, skin care, and compressive garments. Although a combination treatment program may be ideal, any of the treatments can be done individually.
Surgical treatments for lymphedema.
Lymphatic vessel grafting. With the possibilities of advanced microsurgical techniques lymph vessels can be sutured and used as grafts, a technique which is well known in vascular surgery. Locally interrupted or obstructed lymphatic pathway, mostly after resection of lymph nodes, can be reconstructed by a bypass using lymphatic vessels. These vessels are specialized to drain lymph by active pumping forces. These grafts are connected with main lymphatic collectors in front and behind the obstruction. The method is proved to be effective. Follow up studies showed significant reduction of volume of the extremities even 10 years after.
Next time I post (which I am hoping with be Friday) I will be talking about my own experience with Lymphedema. Hope you all enjoy the rest of your week!!
Amanda <3.
today I thought I might tell you all the story of how I came to live with Lymphedema. But first I thought I should explain what Lymphedema actually is:
Lymphedema is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. Some of that tissue can turn "nasty" and become infected. Lymphedema affects around 140 MILLION people worldwide.
There are quite a few "stages/grades" which I will talk. Lymphedema can be inherited (know as primary) lymphedema OR like myself it can be caused by an accident or injury to the vessels (known as secondary). It happens when lymph nodes are dissected via surgery or something like radiation therapy.
In my case I think (yes still not 100% sure) that after I had major surgery on my spine, to place a rod and screws onto my spine to correct the scoliosis. The doctors actually took out or "snipped" one(1) or more of my lymph nodes. Which in turn caused as you read before damaged to them and I now have to live with lymphedema.
To diagnose or to detect lymphedema early is difficult. The first signs may be subjective observations such as "my arm feels heavy" or "I have difficulty these days getting rings on and off my fingers". But unfortunately I was unable to tell as my legs are effected and the worst one being my left leg I have no feeling in at all.
Stages
Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the "non- pitting" stage: when pressed by the fingertips, the tissue bounces back without any indentation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered "pitting": when pressed by the fingertips, the affected area indents and holds the indentation. Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.
Grades
Lymphedema can also be categorized by its severity (usually referenced to a healthy extremity):[citation needed]
Grade 1 (mild edema): Lymphedema involves the distal parts such as a forearm and hand or a lower leg and foot. The difference in circumference is less than 4 centimeters, and other tissue changes are not yet present.
Grade 2 (moderate edema): Lymphedema involves an entire limb or corresponding quadrant of the trunk. Difference in circumference is more than 4 but less than 6 centimeters. Tissue changes, such as pitting, are apparent. The patient may experience erysipelas.
Grade 3a (severe edema): Lymphedema is present in one limb and its associated trunk quadrant. The difference in circumference is greater than 6 centimeters. Significant skin alterations, such as cornification or keratosis, cysts and/or fistulae, are present. Additionally, the patient may experience repeated attacks of erysipelas.
Grade 3b (massive edema): The same symptoms as grade 3a, except two or more extremities are affected.
Grade 4 (gigantic edema): Also known as elephantiasis, in this stage of lymphedema, the affected extremities are huge due to almost complete blockage of the lymph channels. Elephantiasis may also affect the head and face.
Treatment available
Treatment for lymphedema varies depending on the severity of the edema in the effected limb. Most people with lymphedema follow a daily routine of treatment as suggested by their physician or certified lymphedema therapist. The most common treatments for lymphedema are a combination of lymphatic massage, compression/bandaging. Complex decongestive physiotherapy is system realistic of lymphatic massage, skin care, and compressive garments. Although a combination treatment program may be ideal, any of the treatments can be done individually.
Surgical treatments for lymphedema.
Lymphatic vessel grafting. With the possibilities of advanced microsurgical techniques lymph vessels can be sutured and used as grafts, a technique which is well known in vascular surgery. Locally interrupted or obstructed lymphatic pathway, mostly after resection of lymph nodes, can be reconstructed by a bypass using lymphatic vessels. These vessels are specialized to drain lymph by active pumping forces. These grafts are connected with main lymphatic collectors in front and behind the obstruction. The method is proved to be effective. Follow up studies showed significant reduction of volume of the extremities even 10 years after.
Next time I post (which I am hoping with be Friday) I will be talking about my own experience with Lymphedema. Hope you all enjoy the rest of your week!!
Amanda <3.
Tuesday, July 3, 2012
OUCHIES...I'VE HURT MY KNEE :( [act.1]
It was a normal night in our household we had just finished dinner, Steve was drying Hailee off from her shower when I decided I wanted to get changed into something warmer.
It was Wednesday night around 7pm [27th]. I was getting changed on my bed, rolled over on to my stomach and heard the loud POP!! I also felt this sharp pain radiate down my right leg. I instantly knew that I was in trouble. Hubby was in the ensuit and said he heard it too.
I sat up in my chair went and watched t.v for the next three hours it never hurt. What? I can't understand why..what's going on (I thought I may have "popped" it back into place when I sat in my chair. BUT as soon as I crawled into bed and lay down I knew everything was WRONG!. I cried on and off.
Had some panadol to try get some sleep and tried to convince Steve not to go to work because I needed to go to hospital straight away. Thursday morning I woke u, I couldn't get out of bed so luckily my Mum was here to pick miss Hailee up to take her to daycare(she does every week...thanks Mum).
As soon as she left I rang Steve at work and begged him once again to come home. He came home 2 hours later. I was feeling ok in the car, until I got the the hospital when I just wanted to throw up like I had been doing the night before.
You can read the rest on Thursday...hehe sorry guys it's late and I'm tired.
Night!!
Amanda <3
Friday, June 15, 2012
things are finally looking up!
I'm happy to report that things are finally looking up in regards to my left foot!.
I was diagnosed with Lymphedemia back in 1999(?) when I had surgery on my spine to help my scoliosis, by inserting a rod and 6 screws. At first my face blew up and doctors said it was normal to have that much fluid after an huge operation like that.
Aproximatly about 12 months after my operation when I finally could sit In my chair with out pain & my brace my mum noticed my legs starting to get bigger. The Lymphedemia had spread yao my legs. I could no longer wear shoes :(.
At the birth of my daughter in 2008 a family member asked if I had an Epi, because my legs were HUGE!! I of course said no, not really realizing how big they had gotten I started to get preasure sores on mt leg (left prominently) I had never had pressure sores before, even when laying for 3 months after my spine surgery.
Not until about 12 months ago was I concerened about the fluid in my legs. I had quite a huge hole in the soul of my foot, this not only is dangerous because well lets face it, our body's are not meant to have things like this BUT because it was/is on my left leg I can not feel it!! Only by my husband or community nurses checking my leg can they find such things.
While in hospital in Nov(?) they talked to me about the possibility of my left leg being amputated! What are these people serious? I used to joke about it when I was younger because I was in my wheelchair full time was there a reason to have my legs?. I came to the conclusion that YES! I needed it!!!
If I am sitting on something (like the floor or couch) I need it to balance me. If my leg was to be amputated just below the knee I would always fall over (hehe yeah I'm laughing too). Not only that but having an amputated limb you run this risk of infection. I didn't want to go through that! So I decided to finally let the severity of the situation get to me, I pulled my finger out and actually started to care. It's funny how things like the possibility of loosing a limb can get your butt into gear.
It's been over 12 months now since I first got the sore, I have been seeing (3 times in the last 5 months) the wound clinic at one of our local hospitals. What they have been doing has really helped! I'm not 100% sure on the dimensions of the hole (I don't ask or want to see a pic...it's gross!) but I think it was about the size of a Madeleine (or even orange) now its about the size of a 10c piece...YAY!!! I can finally wear stocking to help with the fluid.
Oh!! I forgot to mention once you have lymphedemia you live it for the rest of your life. There is no cure. You can massage, bandage, or use stockings and that's it! I have been having a 3 layer bandage put on my leg 3 times a week for aprox 3 moths. You should see the results..it's amazing!!! (one day I will share the pics)
Anyway I had my 3rd appointment at the clinic. They were very impressed with my results so far... but the discovered a problem :( (AWW! It was quite the word I used but I'm sure you can imagine). When they were looking at my ties she noticedmy big toe was a little red and there was a small amount of fluid coming out. Doctor wanted mr to goon antibiotics but I'm allergic to 99.99% of them so it means I can't go on any so we just have to clean it everyday and put cream on it.
Why oh why does this happen to me??! Things finally start looking like they are getting better and something has to go wrong :( I'm pretty sick of it now!.
Well that's my "news" for now! Something exciting is happening to our little family next week that I will be VERY happy to report..so until next time. have fun, find joy the little things and celebrate them!!
Amanda <3
Friday, October 7, 2011
Mental Health Week 2011
Hello Everyone.
http://www.beyondblue.org.au/index.aspx?link_id=104.1379
9-15 October.
Depression and anxiety are two of the most common mental illnesses in Australia!. and anxiety are two of the most common mental illnesses in Australia and it’s important to recognise the symptoms. Educate yourself and your colleagues and friends by sharing beyondblue’s resources on anxiety and depression.
If you think you could be depressed or suffering anxiety attacks please contact the lifeline on; 13 11 14.
I myself suffer from depression and anxiety from time to time. I'm not 100% ready to delve into why I became so depressed. But I'm sure one day I will be able to let you in on my experience.
If you would like to share a part of your story please feel free to leave a comment.
http://www.beyondblue.org.au/index.aspx?link_id=104.1379
9-15 October.
Depression and anxiety are two of the most common mental illnesses in Australia!. and anxiety are two of the most common mental illnesses in Australia and it’s important to recognise the symptoms. Educate yourself and your colleagues and friends by sharing beyondblue’s resources on anxiety and depression.
If you think you could be depressed or suffering anxiety attacks please contact the lifeline on; 13 11 14.
I myself suffer from depression and anxiety from time to time. I'm not 100% ready to delve into why I became so depressed. But I'm sure one day I will be able to let you in on my experience.
If you would like to share a part of your story please feel free to leave a comment.
Thursday, June 10, 2010
what is Spina Bifida
Spina Bifida is a developemental birth defect caused by an incomplete closure of embryonic neural tube. I have whats called Spina Bifida Myelomeningocele which is the worst of all 4 forms of SB, which leads to most people having a disability, like myself.
Spina Bifida can be surgically closed after birth, but this doesnt mean normal function can be restored to that part of the spinal cord. SB can be decreased by upto 75% when the mother takes a daily intake of folic acid upto 3 months before conseption. [When my mother was pregnant this was not known my family was told it was genetics that caused my SB].
The unfused portion of the spinal column allows the spinal cord to protrude through an opening and looks like a cricket ball on the back of the baby. That portion of the cord and nerves are damaged and or are not properly developed. Because of this there is usually a fluid filled sack surrounding the spina cord.
Signs and symptoms:
Children with SB often have what's called Hydrocephalus, this is excessive fluid on the brain (everyone has this fluid which our brain essentually floats in). According to the Spina Bifida Association in America over 73% of people with SB are allergic reaction to latex.
Pathophysiology:
Spina Bifida is caused by failure of the neural tube to close during the first week of pregnancy. In a normal baby the neural tube closes occurs around 28 days after fertalization. Spina Bifida does not follow a direct path of heredity. Studdies have shown that a woman who bares one child with SB have about a 3% chance risk of having another baby with it.
It is now recommeneded that all women who are wanting to get pregnant should take a folic acid supplement 0.4mg a day is the recommended dose. For women who have already had a child with SB should take 4-5mg a day.
Please see a doctor before taking these supplements though.
Prevention:
There is no single cause of SB nor is there a known way to prevent it completely. But as I said before folic acid somehow has been known to help lower the risk. Food sources with folic acid - whole grains, dried beans, leaf vegetables and some fruits.
Screening During Pregnancy:
Most neural tube defects can now be detected during pregnancy by testing the mother's blood and having a detailed fetal ultrasound. SB can be associated with disability as in Downs Syndrome because these pregnancies may result in a spontanious miscarraige. Genetic councilling and further genes testing can be done such as amniocentesis. Though now days ultrasound screaning for SB is parshly responsible for the decline in the defect, as many parents decide to terminate the pregnancy out of fear that the baby will have poor quility of life. But with Modern medical care and more being researched the quility of life for many SB kids has greatly improved.
Spina Bifida can be surgically closed after birth, but this doesnt mean normal function can be restored to that part of the spinal cord. SB can be decreased by upto 75% when the mother takes a daily intake of folic acid upto 3 months before conseption. [When my mother was pregnant this was not known my family was told it was genetics that caused my SB].
The unfused portion of the spinal column allows the spinal cord to protrude through an opening and looks like a cricket ball on the back of the baby. That portion of the cord and nerves are damaged and or are not properly developed. Because of this there is usually a fluid filled sack surrounding the spina cord.
Signs and symptoms:
Children with SB often have what's called Hydrocephalus, this is excessive fluid on the brain (everyone has this fluid which our brain essentually floats in). According to the Spina Bifida Association in America over 73% of people with SB are allergic reaction to latex.
Pathophysiology:
Spina Bifida is caused by failure of the neural tube to close during the first week of pregnancy. In a normal baby the neural tube closes occurs around 28 days after fertalization. Spina Bifida does not follow a direct path of heredity. Studdies have shown that a woman who bares one child with SB have about a 3% chance risk of having another baby with it.
It is now recommeneded that all women who are wanting to get pregnant should take a folic acid supplement 0.4mg a day is the recommended dose. For women who have already had a child with SB should take 4-5mg a day.
Please see a doctor before taking these supplements though.
Prevention:
There is no single cause of SB nor is there a known way to prevent it completely. But as I said before folic acid somehow has been known to help lower the risk. Food sources with folic acid - whole grains, dried beans, leaf vegetables and some fruits.
Screening During Pregnancy:
Most neural tube defects can now be detected during pregnancy by testing the mother's blood and having a detailed fetal ultrasound. SB can be associated with disability as in Downs Syndrome because these pregnancies may result in a spontanious miscarraige. Genetic councilling and further genes testing can be done such as amniocentesis. Though now days ultrasound screaning for SB is parshly responsible for the decline in the defect, as many parents decide to terminate the pregnancy out of fear that the baby will have poor quility of life. But with Modern medical care and more being researched the quility of life for many SB kids has greatly improved.
Subscribe to:
Posts (Atom)