Tuesday, May 20, 2014

PRS Update~Nearly One Year Post-Revision Surgery

Many have asked about Tatya's recovery from her revision surgery which she underwent last June. How is she doing? Has the swelling subsided? Will she need any more surgeries? How is her health? Thank you to so many of you who have prayed for her this past year, shared encouraging words, and asked questions which show your concern for Tatya. We have been in communication with her surgeon, Dr. John Seibert, and we were happy to receive his recent comments on her recovery and his prescription for the coming year.

Tayta's revision surgery was intended to be her final facial surgery, a follow up cosmetic surgery to remove excess tissue present from her free-flap tissue transplant surgery which took place in August 2012, and to correct the atrophy in her left lip. The surgery was successful, but Tayta has experienced residual swelling (left side) which, though decreasing, is still present.

After viewing the last round of photos of Tayta's face, her surgeon is overall happy with the results. Tatya will continue to massage the affected area a few times a day and may do a couple more steroid shots over the next year. We'll re-evaluate  her condition at two-years post-op, which will be next summer. Tayta was thrilled with this decision and prescription; she is happy with the results of her surgery, the condition of her face, and strongly felt that she didn't want to undergo another surgery at this time--not because it was painful or uncomfortable, but because she feels that her face is still healing and needs more time to recover fully from the last surgery.

 Tayta and friend 

We are all thankful that Tayta has not experienced any other symptoms of her disease, Parry Romberg Syndrome, which is believed to be an autoimmune disease, and thus has no cure. We pray and hope that her PRS is in permanent remission. Meanwhile, we are trying to educate ourselves about autoimmune diseases, as many who suffer from one autoimmune disease seem to be more susceptible to other  autoimmune diseases. Tayta has been working on establishing consistent, healthy life habits: exercising regularly, getting enough sleep, and eating good foods. I was surprised at how willingly she decided to drastically cut back her sugar consumption. Tayta has developed her repertoire of desert recipes which contain no sugar and no flour, and we are all enjoying the benefits.

Thanks you to those who have cared for us these past two years by your prayers and words of encouragement. God has blessed us with so much love and support through your care.


Carlene Brown said...

What a journey this has been! And what an amazing young woman your daughter is ..... her inner beauty shines in her outer beauty. Praying for continued remission .... her acceptance of this health issue is a lesson for all of us! I so appreciate all the updates and pictures .... a wonderful way to follow along with you all in prayer!

Woman of the House said...

I'm so happy to hear the good report! Praise the Lord! I would love to see some of Tayta's sugar-free, flour-free recipes. Perhaps you could do a blog post sometime?

Anonymous said...

Alhamdulilah! That is so nice to hear! Your daughter seems to be such a sweet young lady, an example for everyone; young and old. And if Tayta would like to share her recipes, well, we could all benefit from a better diet!!/S Susan

Laura A said...

I'm glad to hear that the Tatya continues to heal and that, best of all, she is in good spirits about it. I've been learning about autoimmune diseases lately, and they are indeed difficult, so I hope and pray that she will continue to have a respite from the symptoms.

Anonymous said...

Your daughter is really beautiful inner and outer and she seems a really good soul!

I 'm a 33 years old woman and I've PSR too. I had 2 surgeries.I try to be in good spirits.

I really hope that medical world will go on with researches on this disease.

I want to do some exercices too but i don't know what? I easily tired. Could you please tell me what sport Tayta do?

I send you all my strength!

Heather said...

Thank you for updating us on Tayta, it is great to be able to lift her up in prayer and know how to pray. I am encouraged by all your children and the lives they appear to be leading. May you know God's presence as you travel this summer.