Cystic Fibrosis and Scoliosis

Question

Im looking for field reports or studies regarding Cystic Fibrosis associated with Scoliosis. My 15 year old daughter developed a severe scoliosis (70 degrees Cobb angle) after resection of the right upper lobe of her lung. Doctors do recommend Spine-surgery. Does anyone have information about studies or experiences related to these topics? Are there any hospitals / centers in UK or Germany experienced in this?

Answer

Dear questioner,
I am afraid that I am not able to give you names of hospitals, which are specialized in both scoliosis and CF or to cite special studies on that topic, either. In my opinion it is not essentially necessary for your daughter to have the combination of competences at one single site. It would be more important that you have a competent and trusting CF-specialist and have or find a competent and trusting hospital for scoliosis. The specialists should then get in contact with each other about the case of your daughter and come to a decision concerning the ongoing therapy together with you and your daughter. From your e-mail I can conclude that an operative therapy was recommended to your daughter. If there is any uncertainty we recommend to get a second opinion. In the case of your daughter do this with two CF-specialists and probably also with two hospitals for scoliosis. In case all recommend an operation, it is probably easier for you and your daughter to make a decision.
In Germany I can name the Werner-Wicker-Klinik in Bad Wildungen as a hospital for scoliosis. Probably you could get some advice there.

The address:
Werner-Wicker-Klinik
Im Kreuzfeld 4
34537 Bad Wildungen/Reinhardshausen

Telefon: 0 56 21 / 8 03-0
Telefax: 0 56 21 / 8 03 2 08
www.werner-wicker-klinik.de

I am afraid that I am not able yet today to give you an address of a hospital for scoliosis in England. However we forwarded your question to the English CF-expert of ecorn-cf and are waiting for his answer. We will report as soon as his answer will be there.
I wish you and your daughter all the best and much strength but also confidence in the critical phase of making a decision.

Yours sincerely,
Christina Smaczny

08.01.2008

Here are the names of 2 hospitals for scoliosis in the UK:

Royal National Orthopedic Hospital Trust, Brockley Hill Stanmore, Middlesex, 020 8954 2300

Nuffield Hospital in Birmingham, Royal Orthopeadic Hospital, Birmingham, 0121 6854085