Hello Everyone,
I am just confused????? My whole life I have been told that I had Classic EDS. Nothing had changed, my syptoms didn't changed and my life was just the same. I had my artery dissection in 2007 and the Doctor asked me if I had Type 4. "No, of course I do not have Type 4???" "Do you think you should be retested?" "NO!!!!!" I had all the characteristics of Classic EDS, right down to the 'Subcutaneous spheroids' the small cyst like, hard shot-like nodules, freely moveable in the subcutis over the bony prominences of the legs and arms'. But No......... Since the 2007 EDS review of the Classic Type, there is now a possibility of ..... 'The clinical findings of 'overlap' with the Classic Type'. These are the possible overlaps:
* Type III: Hypermobility Type
* Tenascin X Deficiency
* Familial Joint Hypermobility Syndrome
* Progeroid Form
* Kyphoscoliotic Type: Type VI
* Arthrochalasia Type: Type VII A & B
* Dermatosparaxis Type: Type C
The scariest of all TYPE 4: VASCULAR TYPE:
I am so sorry to all the Type 4 people that have lived with this since childhood or the people that have just been diagnosed, but it is scary. Life expectancy is aged 40 years and 'the median age of death is 48 years'. I am 39 and 10 months.
On July the 6th at 9am, I am going back to hospital with my gorgeous Tristan to find out our fate.
Love Rowena X
Sunday, June 26, 2011
Monday, May 9, 2011
Tristan finally got his Surgery Appointment!
Hi Everyone,
I hope you are all well, happy and pain free. My baby finally went to visit the Reconstruction Surgeon to mend his Pectus Ecavatum. Well we really wanted to go for the Nuss Procedure but the Surgeon told us the side effects and we have definitely changed our mind. He told us that the metal bar that they surgically insert can actually graze the heart. Well that freaked me out straight away. He also said that it can cause on going pain for years later. Because this is a cosmetic surgery and Tristan doesn't need it for health reasons, I just don't want him to be in pain. So we have decided to take option number two: Open surgery is more traditional.
* In this method, the surgeon makes an incision (cut) across the front part of the chest.
* The surgeon removes the deformed cartilage and leaves the rib lining in place. This will allow the cartilage to grow back correctly.
* The surgeon makes a cut in the breastbone and moves it aside. The surgeon may use a rib or a metal strut (support piece) to hold the breastbone in this normal position until it heals. Healing will take 3 to 6 months.
* The surgeon may place a chest tube to drain fluids that build up in the area.
* Metal struts will be removed in 6 months through a small cut in the skin under the arm. This procedure is usually done on an outpatient basis.
The Surgeon told us that this was definitely the more evasive way to go, but he will not have a foreign object in his body that may dislodge if he had a hard enough bump. He will be in hospital for up to 7 days.
Of course I am already so worried and so nervous and wish he didn't have to go through this at all. But Tristan wants to do this and so I have to be supportive and keep him as healthy as I can before the surgery date.
The next step is to get his heart looked at and then back to the Surgeon to let him know what path we are going to take. I will let you know how it goes.
Love Rowena
x x x x
I hope you are all well, happy and pain free. My baby finally went to visit the Reconstruction Surgeon to mend his Pectus Ecavatum. Well we really wanted to go for the Nuss Procedure but the Surgeon told us the side effects and we have definitely changed our mind. He told us that the metal bar that they surgically insert can actually graze the heart. Well that freaked me out straight away. He also said that it can cause on going pain for years later. Because this is a cosmetic surgery and Tristan doesn't need it for health reasons, I just don't want him to be in pain. So we have decided to take option number two: Open surgery is more traditional.
* In this method, the surgeon makes an incision (cut) across the front part of the chest.
* The surgeon removes the deformed cartilage and leaves the rib lining in place. This will allow the cartilage to grow back correctly.
* The surgeon makes a cut in the breastbone and moves it aside. The surgeon may use a rib or a metal strut (support piece) to hold the breastbone in this normal position until it heals. Healing will take 3 to 6 months.
* The surgeon may place a chest tube to drain fluids that build up in the area.
* Metal struts will be removed in 6 months through a small cut in the skin under the arm. This procedure is usually done on an outpatient basis.
The Surgeon told us that this was definitely the more evasive way to go, but he will not have a foreign object in his body that may dislodge if he had a hard enough bump. He will be in hospital for up to 7 days.
Of course I am already so worried and so nervous and wish he didn't have to go through this at all. But Tristan wants to do this and so I have to be supportive and keep him as healthy as I can before the surgery date.
The next step is to get his heart looked at and then back to the Surgeon to let him know what path we are going to take. I will let you know how it goes.
Love Rowena
x x x x
Wednesday, December 1, 2010
Tristan's Surgery Update
Hi Everyone,
I hope you are all well and pain free. I just wanted you to know our updates. I recieved a letter from the Manukau Super Clinic a few weeks ago. They said we now have to wait for 6 months just to have an appointment to see the plastic surgeon to examine Tristan's chest. I did think that perhaps his surgery may be of happened in that time but alas, patience is what we need.
I also just wanted you to know that since the letter, my son has gone on to be the 'Best High Jumper' for his age in Central Auckland. Next Thursday he goes to the Championship Athletics to jump for the title for the 'Best High Jumper' in the whole of Auckland. I am monstrously proud and I am so pleased he had an opportunity to experience this before his surgery.
Love Rowena
x x x x
I hope you are all well and pain free. I just wanted you to know our updates. I recieved a letter from the Manukau Super Clinic a few weeks ago. They said we now have to wait for 6 months just to have an appointment to see the plastic surgeon to examine Tristan's chest. I did think that perhaps his surgery may be of happened in that time but alas, patience is what we need.
I also just wanted you to know that since the letter, my son has gone on to be the 'Best High Jumper' for his age in Central Auckland. Next Thursday he goes to the Championship Athletics to jump for the title for the 'Best High Jumper' in the whole of Auckland. I am monstrously proud and I am so pleased he had an opportunity to experience this before his surgery.
Love Rowena
x x x x
Saturday, September 11, 2010
Tristans Hospital Appointment finally arrived!
Hi Everyone,
I hope you are all well and painfree! Well my boy finally had his hospital appointment. This is what they found:
* He has scoliosis of the spine.
* His shoulders are hunched.
* His hips are out of alignment.
* His pectus excavatum (sunken chest) needs to be operated on.
So the list is much bigger than I thought. But do you know what my gorgeous boy worried about throughout this whole appointment, that he wouldn't grow to be 6 ft, 4". The doctor told him that they think he won't grow for very much longer as his bone density of his pelvis bones showed this. He is already 5ft, 8" so he is tall enough. The silver lining on his growth slowing down is the fact that his spine, shoulders and hips will not have to be operated on as the curvature of all of them will stop, once he stops growing. So prayers, prayers, prayers that my baby stops growing very soon. His sunken chest is now being referred to a plastic surgeon who deals with skeletal deformities and this is going to be fixed, thank goodness. Tristan will now be under the care of Starship Hospital for the next two years to see if he needs anymore operations. Every six months he will need new xrays just to be sure.
So we waited almost a year for this information and it looks like things are going to be okay, due to the fact that none of his internal organs are being affected. He is such an amazing boy and just takes all of this in his stride. I am so blessed having such an amazing kid!
Love Rowena X
I hope you are all well and painfree! Well my boy finally had his hospital appointment. This is what they found:
* He has scoliosis of the spine.
* His shoulders are hunched.
* His hips are out of alignment.
* His pectus excavatum (sunken chest) needs to be operated on.
So the list is much bigger than I thought. But do you know what my gorgeous boy worried about throughout this whole appointment, that he wouldn't grow to be 6 ft, 4". The doctor told him that they think he won't grow for very much longer as his bone density of his pelvis bones showed this. He is already 5ft, 8" so he is tall enough. The silver lining on his growth slowing down is the fact that his spine, shoulders and hips will not have to be operated on as the curvature of all of them will stop, once he stops growing. So prayers, prayers, prayers that my baby stops growing very soon. His sunken chest is now being referred to a plastic surgeon who deals with skeletal deformities and this is going to be fixed, thank goodness. Tristan will now be under the care of Starship Hospital for the next two years to see if he needs anymore operations. Every six months he will need new xrays just to be sure.
So we waited almost a year for this information and it looks like things are going to be okay, due to the fact that none of his internal organs are being affected. He is such an amazing boy and just takes all of this in his stride. I am so blessed having such an amazing kid!
Love Rowena X
Friday, September 3, 2010
EDS is alive and well in NZ!
Hi Everyone,
I hope you are happy and well. I just wanted to post a quick link for you to see the funniest bloke I have seen in a long time who actually has EDS. See, some of us use our talents for laughter, which is the best cure! Check him out!
http://www.youtube.com/watch?v=E8kak_pbgIk
Love Rowena
x x x x
I hope you are happy and well. I just wanted to post a quick link for you to see the funniest bloke I have seen in a long time who actually has EDS. See, some of us use our talents for laughter, which is the best cure! Check him out!
http://www.youtube.com/watch?v=E8kak_pbgIk
Love Rowena
x x x x
Saturday, August 21, 2010
I feel so proud!!!!
Hi Everyone,I hope you are all happy and pain free, or at the very least, a little pain-less! I was so shocked this morning when I opened up my email. I have been awarded with this Community Leader Award for my EDS Blog. I actually burst into tears. I am an emotional wreck at the best of times, but I felt so proud. As many of you already know, I have been contacted by so many wonderful people who just needed to share their stories and not feel so alone with EDS. I just want to say a 'HUGE THANK YOU' to all of you, for your strength, at times your prayers and for the information that I have learnt from you. In turn, I get to share all of this with my son, so he grows up with the strength of knowledge and without a moment of uncertainty. For all of this, the words 'thank you' aren't enough, but......thank you!
Love Rowena X
P.S: Tristan's Hospital visit is on September 10th (we have had 5 cancellations) so fingers crossed we get there this time!
Saturday, May 22, 2010
Lumbar Puncture gone 'BAD'!
Hi Everyone,
I hope you are all well and pain free. Well I had another small visit to the hospital! I had another terrible headache (by sky rocketing blood pressure). After another CT scan, the doctors thought a lumbar puncture was the best option just in case I had experienced a brain bleed. Well prasie the Lord I didn't and it was a gigantic shame that I did have the lumbar puncture as I suffered dreadful side affects form it. I had the worst headache I have ever experienced in my life and it lasted 118 hours (even worse than my artery break). I was amitted back into the hospital 4 nights later and they discovered that spinal fluid was leaking out of my spine causing the Lumbar headache. The word headache really suggests that I had a slight pain, O.M.G.....I physically could not stand up and even had to crawl on my hands and knees to the bathroom. I could not sit up straight for 4 days and honestly I really got to the point where I just wanted one of my wonderful friends and family to smoother me with a pillow. The sad thing was, is that I had rung the hospital after 2 days saying I was in great pain and the lady I spoke to just said the pain would pass with rest. Yesterday I was given a 'blood patch' which was 20 mls of my own blood injected into the hole in my spine to cause a clot. Within moments the pain had gone, it was a miracle. The Doctors affectionately called it 'Voodoo' and they just can't explain why this actually helps so quickly. I tell you what else gave me some relief and that was 'Diet Coke'. The caffine in the coke gave my brain the ability to produce spinal fluid quicker and for a while the relief was good!!!! So today I am myself again. I have a teeny bit of lower back pain and I am a bit stiff but I feel like 1 Billion dollars!!!!! I feel so blessed for my Mum for taking care for my son and all of my friends for their love, their prayers and support they gave me. Don't live with pain because you worry about not waiting the right amount of days for things to heal, get the support you need and listen to you own heart to know what feels right and what definitely feels wrong!
Take care of you!
Rowena X
P.S: Still waiting for my sons hospital appointment, will keep you posted!
I hope you are all well and pain free. Well I had another small visit to the hospital! I had another terrible headache (by sky rocketing blood pressure). After another CT scan, the doctors thought a lumbar puncture was the best option just in case I had experienced a brain bleed. Well prasie the Lord I didn't and it was a gigantic shame that I did have the lumbar puncture as I suffered dreadful side affects form it. I had the worst headache I have ever experienced in my life and it lasted 118 hours (even worse than my artery break). I was amitted back into the hospital 4 nights later and they discovered that spinal fluid was leaking out of my spine causing the Lumbar headache. The word headache really suggests that I had a slight pain, O.M.G.....I physically could not stand up and even had to crawl on my hands and knees to the bathroom. I could not sit up straight for 4 days and honestly I really got to the point where I just wanted one of my wonderful friends and family to smoother me with a pillow. The sad thing was, is that I had rung the hospital after 2 days saying I was in great pain and the lady I spoke to just said the pain would pass with rest. Yesterday I was given a 'blood patch' which was 20 mls of my own blood injected into the hole in my spine to cause a clot. Within moments the pain had gone, it was a miracle. The Doctors affectionately called it 'Voodoo' and they just can't explain why this actually helps so quickly. I tell you what else gave me some relief and that was 'Diet Coke'. The caffine in the coke gave my brain the ability to produce spinal fluid quicker and for a while the relief was good!!!! So today I am myself again. I have a teeny bit of lower back pain and I am a bit stiff but I feel like 1 Billion dollars!!!!! I feel so blessed for my Mum for taking care for my son and all of my friends for their love, their prayers and support they gave me. Don't live with pain because you worry about not waiting the right amount of days for things to heal, get the support you need and listen to you own heart to know what feels right and what definitely feels wrong!
Take care of you!
Rowena X
P.S: Still waiting for my sons hospital appointment, will keep you posted!
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