Connect with others with Severe Scoliosis + Restrictive Lung Disease

@oregonk Welcome! The best thing I can say to you is to come to a multidisciplinary world class medical center where your specialists will actually talk to each other outside of their own viewpoint. If you can come to Mayo and your insurance is accepted, I would recommend that. It will take a while to get an appointment as there is demand for excellent spine specialists.

I had spine surgery at Mayo and my surgeon is a deformity specialist who takes difficult cases like yours. There is no reason to keep having issues with lung infections when a gifted surgeon may be able to give you back better functioning of your heart and lungs. I don't have scoliosis, and I found my surgeon because I had a case with unusual symptoms that confused a lot of local surgeons. I had been refused 5 times and my spinal cord was compressed. He gave me back the functioning and coordination in my arms and fixed all the pain I had all over my body.

His name is Jeremy Fogelson. He is excellent. Here is some information and a video where you can meet him. I don't think your doctors know how to help you, and your case is difficult enough that they lack the expertise in handling it, and don't know where to refer you for treatment.

If you want to apply to Mayo, you may use this link to get started. You can request that all the imaging and records you will be sending in for review be sent to Dr. Fogelson. http://mayocl.in/1mtmR63
I will be happy to answer any questions that I can about my experience at Mayo.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
I think you are too young to resign yourself to living with a disability, and I say that with compassion for what your journey has been. What are your thoughts?
https://medprofvideos.mayoclinic.org/videos/adult-scoliosis-treatment-options-at-mayo-clinic

Hi,

I finally got a referral to the Mayo Deformity Spine Surgery Department. And after my first appointment, am feeling truly blessed. The Deformity Spinal Surgeon explained everything and a plan to correct my spine. Can not say enough about how amazing Mayo is.. It took me 34 years of pain to finally get a referral, wish I had gotten it earlier.

Hello OregonK
I am so sorry you are going through so much. Hopefully, you find the help that you need soon.
I agree with Jennifer, that Dr Fogelson, at Mayo in Minnesota, would be a good choice to consider. After consultations with 2 other surgeons, at other institutions, I decided to have surgery with Dr. Fogelson, because he has a lot of experience in dealing in cases like mine. My surgery is scheduled for May.
Should it not be possible to go to Minnesota, there is also a Mayo Clinic in Phoenix.
In choosing a spine surgeon, I personally would select a neurosurgeon.
I quickly glanced at the website for OHSU Spine Center (University of Oregon) and saw one doctor --Dr. Orina, that has excellent background, including a Neurosurgical fellowship at Mayo and an Orthopedic fellowship in Complex Spine Surgey at UCSF.
You might want to take a look at him and the other doctors at OHSU.

Here is info. Zon Dr. Orina

Hello,

Am in need of taking a bone building drug first. Start that this coming Monday. Am hoping that works fast. And I’ll need my pain pump remove also. So, in several months the surgery will take place. It’s going to be hell, since they want me off most of the pain medication. Take care

@3986 Welcome to Connect. I’m glad you have a plan and a surgeon who will help you get there. I’m curious now as to who your Mayo surgeon is, and it’s always good for others to know when you’ve had a good experience. These are big surgeries that will have extensive recovery and rehabilitation afterward, and of course there are the limitations of movement from hardware and fusion. I’m not a scoliosis patient, but I can imagine it is a difficult choice to trade movement with compromised body function for a supported rigid spine that gets the body into improved alignment. As Dr. Fogelson says in his video, it doesn’t have to be perfect and sometimes it isn’t possible.

Is your pain pump removal procedure scheduled? I’m sure you’ll need to do things to get ready and also book your accommodations while you are at Mayo.

Hi,

The Neurosurgeon is Benjamin Enlder, he specializes in Deformity Spine Surgery, can’t say enough praise of him. I will be seeing someone in Pain Medicine to start the process of weaning me off the morphine that’s in my pain pump. As soon as that’s completed then the back surgery. Will I mentioned, my bone density is a bit low, so that’s another issue that hopefully moves quickly in the positive.

That's great that you are taking a bone building drug.

I have Osteoporosis and have been on a Bone Maintenance drug for years--Actonel, at first, then Reclast.
With my pending surgery, I was placed on generic Forteo to further build my bone density.
As it takes a long time to get appointments at any of the sites, should you want to schedule consults you may not want to delay.

You mentioned a video. Is that a video on what one may expect with a complex back surgery. And if so were can you find it?

Whoops, I got you mixed up with OregonK.