About Me

[stacey484]

I'm 35 years old and i have a son who is 13 years old. I work part-time as an opticial assistant.

I suffered my 1st dvt while pregnant and the RAF doctors neglect me as i had pain, swelling, redness, hot leg but they put it down to my son lying on a nerve. It took them 2 months to dignoise a blood clot which damaged my muscles in my leg. They also did not monitor my warfrin correctly and i took another clot while on it then they eventually reffered me to nhs hospital who also put it down to pregnancy. It was till my 3rd dvt that i got reffered to the specialist military hospital in birmingham after 3 years which helped to get my condition diagnosed with mayturner syndrome which make my leg sore, swollen, give way and difficulty walking or standing for long but also cant sit for long, but I need to alleviate my legs so the pain comes to a bearable level. I have seen a surgeon who has told me that there is nothing else he can do as the operation i could get is to risky. The operation i had to put a stent in did not work as blocked off several times and the last time they said they could not unblock it again. The surgeon said the risky operation would only be done in extreme circumstances as a last resort and it's just a matter of me managing my own pain with the help of pain specialists.

I was a qualified stewardess in the RAF, but I had to leave after 9 years service as i was limited to the amount of flying i can do, since I cannot sit or stand for long periods either i am also limited to jobs they could put me on. I used to love mountain walking/ hillwalking, doing flying for a job, loads of different sports, going to the gym, cooking and baking, but I cannot do these things now, since I can only stand for 15 to 20 minutes maximum and walking on uneven ground serves to inflame my facet joints too.

I'm very lucky with my job as an opticial assistant as i can sit or stand when needed and its only part time as no longer able to work full time.

[Keithff]

Hi

One of the first things I would do in your case, is get two bricks, put one under each of the bottom legs of your bed.

If there is a support leg in the Center of your bed, have a Woden block made to fit under it, just measure the thickness. Your son could do that.

I slept like that for years, over ten years. Wish I had not stopped.

It assists your blood in returning to your body. Even my late partner got used to it. Takes a day or three to get used to sleeping like that. But it really helps.

[Elainepilk in reply to Keithff]

I’m going to try this, thanks Keith

[Elainepilk]

Oh Stacey, you’ve really gone through it. I’m similar, got a dvt after an operation 4years ago. I knew I had a dvt and went to A&E twice before they sent me for a scan. It was 3 months before I was treated (7 months on warfarin). I now wear support stockings, either thigh length or knee length depending on how much pain I’m in. I can’t believe nothing can be done for people like us. I’ve also been told that quinine can help (look for natural) and elevating legs. I have lost faith in doctors and hospitals, all they said to me was “unlucky!” Good luck, Elaine

[stacey484]

Thanks Elaine

Yeah it's horrible hopefully with time and research something is found. The pain clinic have told me to try something like reiki as that Can help with pain so looking into.

Hope you are ok and not in to much pain

Stacey

[Elainepilk in reply to stacey484]

Pain is bearable, thanks. I always think there’s someone worse than me. I tried reiki but it didn’t do anything for me. However, I do know people who think it’s great, anything is worth a try!

[Nina_noo]

Hello everyone, I was diagnosed with MTS in September this year, after I suffered an unprovoked extended dvt in my pelvis this February. I can relate to a lot of the pain and symptoms you talk about, it truly changes your life. I agree with all that had been said in previous posts, and although Reiki might not resonate with everyone, I (as a Reiki practitioner) found comfort in giving myself some Reiki energy work. Keeping with the theme of complementary help for pain, I have found a wonderful therapist in Cornwall who works with vibration and tuning forks. If anyone is interested, I will share her website details so you can find out more about her work and research. Thus lady comes from a medical back ground of nursing, so her medical knowledge and experience is very balanced and researched. I have also found swimming to be the most gentle and supportive way of exercising, when in not feeling too fatigued.

I am sure that education and the sharing of our stories is a positive way forward and will hopefully impact on the medical profession to be more vidulent and thorough in their treatment of all thrombosis patients.

Nina x