Has anyone heard of...?

[rohrer01]

Hey, all.
Has anyone heard of a Dr. Jeremy Fogelson at Mayo Clinic in Rochester, MN?
I have been referred to him for evaluation and possible surgery by the head of the neurosurgery department at the hospital I go to. Mind you, this hospital (the one I go to) is one of the top 50 in the U.S. My neurosurgeon basically feels I need a head to tail fusion, especially in lieu of the severity of my hypokyphosis. My scoliosis is progressing quite rapidly despite the fact that I was under 40^o at skeletal maturity. I need new radiographs as my physical appearance has been altered quite a bit over this last year. My doctor is holding off on the radiographs until he finds out what he can arrange and know exactly what they want at Mayo. The insurance is also a bear to say the least!
My doctor insisted that this doctor was "the best" spine surgeon in the country and people flew from around the world just to see him. I've never heard him mentioned on the forum, nor have I ever heard of him period.

So there's a little update on me. More importantly, I would like to know something about this surgeon if anyone knows anything...please?

Thanks,
Rohrer01

[LindaRacine]

Hi Rohrer...

I've never heard of him, but he did a fellowship at Wash U (Bridwell and Lenke), so that's at least something. I don't know the set up at Wash U, in terms of Ortho vs. Neuro, so I don't know how much training he got from Bridwell and Lenke.

--Linda

[rohrer01]

Thank you, Linda. I was planning on doing some research on him. Facilities differ with neuro and ortho. They all have qualified neurosurgeons and orthopedic surgeons there simultaneously. It just depends on which department is considered to be the handler of the cases. Is that even a word? LOL

Thanks again!
Rohrer01

[rohrer01]

Okay, this is why I've never heard of him. He's only been in practice for EIGHT years, eek! However, there are prodigies and hopefully he is one of them. He went to medical school at the University of Minnesota, Twin Cities. He is considered a "neurosurgeon" but does spinal fusions. He co-authored a paper that, if his technique is as good as it seems, would be right up my ally with the curve type that I have. Here is an excerpt of the paper since I don't have full access to it. I'm putting it in the research section, too.

http://www.thespinejournalonline.com...09)00318-0/pdf

Sounds promising, heh? My only concern here is a lack of experience in years. But, if he were involved in all of these surgeries, he would have more than three times the experience of my current surgeon who has been practicing for over 20 years. I'm hoping that these types of surgeons are NEVER alone in the OR in complicated cases such as mine, or any case for that matter. If they are, I don't want to be under their knife. If surgery is recommended, that WILL be a question I will ask. These are big surgeries that require brut force along with delicate manipulation. These docs are people just like the rest of us and can have unforeseen things happen in the OR. So I would expect that they would have a back-up or helper surgeon/s along with them just in case.

Feeling nervous and hopeful. We'll see what the insurance company says. That will determine if I even get a consultation.

If anyone has had surgery by him, I'd love to hear from you. If anyone has any more information, I'd love to hear from you, too.

Thanks,
Rohrer01

[rohrer01]

Okay, I found out that he is also a member of the SRS. I'm totally surprised since Mayo Rochester, MN did NOT have any SRS members the last time I checked. Admittedly it was quite awhile ago that I last checked, like a few years.

Jeremy L. Fogelson, MD

Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile

Mayo Clinic Rochester-MN

200 First Street SW

Rochester, MN 55905

United States

(507) 284-4871

This was taken from the SRS search engine. I'm feeling a little better since these are his specialties. Although, a doctor doesn't have to belong to the SRS to be an excellent scoliosis surgeon as some here on the forum (Ed) can attest to. They just have to commit 20% of their patient load to spinal deformities. But maybe the younger, up and coming surgeons are bringing new ideas to the table. I know from experience that some older doctors get stuck in their ways, not all, but some.

I'm sharing what I find so I can have easy reference, but just in case there may be others that read this and feel he may be a good fit for them. Enough for tonight.

Good night everyone,
Rohrer01

[titaniumed]

My neurosurgeon basically feels I need a head to tail fusion

You never mentioned this Rohrer, unless I missed it....I did have a hunch but didn’t want to say anything.

Can you define exactly what he told you? Was it C3-Pelvis? That’s a long one, no doubt.

Have you done all the testing for surgery? Do you have that green light? No osteoporotic issues? Etc....

Some younger people have the ability to remember everything.....Crystal is in that group, and she will be off for her surgical training here soon. She is involved with many doctors in her training, and is used to working in a group setting which is par for the course. I don’t think that doctors should work solo, or think solo. You understand what I’m saying? Going into a surgical center like Mayo, your not going to be operated on by one single person. Its good to bring this up, but I would assume that there will be quite a few people present if they operate on you. I had 2 scoli surgeons, and an elder vascular surgeon who had been to the moon and back. There is always something new, and always something to learn, and its nice to have an elder surgeon present even if he isn’t operating. Wouldn’t it be nice to have someone like Dr Bradford hanging around? (smiley face) There are mentors and relationships, and wise people utilize friendships....

On a side note, I was wondering if you were following the news on the opioid situation in the US possibly triggered by Prince’s death? I came close to starting a new thread on this subject matter, but didn’t want anyone getting mad at me again, just in case they had an opoid problem. (smug face) Its not as easy as it seems, quitting meds can be a bitch and is probably the hardest part of doing scoliosis surgeries. Prince had a hip surgery years ago, and became addicted, but we don’t know if he ever became clean or how the events panned out.......respiratory depression from opioids is a very alarming wake up call if I might say so. Its why I quit cold turkey. When you have to constantly think about your inspiration effort, you will know what I am saying. I agree that doctors need to take control of this situation and not prescribe 100 Percoset’s for each stubbed toe that happens. I saw this happen to me and had $30,000 worth of meds in my medicine cabinet.

When we do surgeries, we have to face this since we are given opioids. The weaning process is never really addressed on the level that it should be with our surgeons since they are surgeons that do surgery, and not really into addressing weaning or long term pain control. I know you know this, but wanted to throw out a general statement for readers that are learning.....It is something to think about. Getting clean is a goal worth considerable effort.

Be sure to let us know how everything pans out with your new surgeon.

I would love to attend your meeting and try not to ask too many questions.....(Probably get kicked out LOL) but, would love to be a fly on the wall. One of these days here soon, I will retire and probably start fulltime RVing so I can travel around the US and visit friends.

Ed

[Pooka1]

A few things...

Rohrer, sorry you are at the point of a major surgery. I was hoping you would never need it especially given your atypical case.

I agree with Ti Ed on a few things... the opioid situation is really off the hook. I recently had gum surgery ans was given a script for 30 percosets. I only needed one and I didn't step down to anything, not even over the counter pain meds on day 2. I am assuming that is usual for this surgery so that results in many, many unused pills out there. I think this is over-prescribing.

In re Prince, I thought the thing was he was taking the pain meds because he was refusing hip surgery because they couldn't guarantee that he wouldn't need a blood transfusion (He is a JW). If that's the case then his religion might have killed him. So know I am not sure what is up. Hip surgery is generally very successful and is almost done on an outpatient basis these days I hear.

It is so sad and ironic if he died of a pain med addition as Paisley Park is literally only a few minutes from the premier treatment facility in the world, the Betty Ford Center.

[titaniumed]

Sharon, I have a good friend who will lose 2 sons here soon....Age 26 and 28.

He is a multi-millionaire, and has sent the boys to multiple re-hab clinics in California over the last few years and still the problem exists. Open doors, heavy communication, and tough love have been tried. Mike would buy them each a new Mercedes and a house if they became clean, it’s the worst sort of scene or click that these kids get snared into. Damn it.

They are in Santa Rosa, California which seems to attract the oxy community. I don’t know what to say other than that patients should either return their meds to the pharmacy or simply hit them with a hammer in the garage. A gun safe would be a good storage area.

Maybe the CDC will enact new regulation, we will see. I hear that Percoset cost around $30 ea.

Prince could have donated his own blood before surgeries to avoid the blood bank. I didn’t since I was told it was safe. Besides, young stem cells are a good thing. My transfusions were like a breath of fresh air.....There was a HUGE difference in the way I felt after they gave them to me.....

It took a lot of determination on my part to clean up, and I don’t understand why people get addicted. They could go to Oregon and smoke all the weed they want, at least it wont kill them.

Opioid awareness is a necessary thing right now. It kills people.

I hope your gums are ok, Periodontist’s can be a scary bunch.

Ed

[jackieg412]

Just I thought on the death of Prince. I think things aren't settled yet but if it was pain drugs, it will help the drug addiction problem move forward. It it's a major problem in every community. I,like Ed have a closet full. Mostly all of the drugs make me sick. Even after this last shoulder surgery, I took only a total of 4 tramadol. Got violently sick and put up with the pain. I know they are needed short term but something must be done to help people with pain and not cause addition. Search pain on the Web and you will find many discussion how there isn't any benefit to long term opioid use. Such a shame it claims the life of so many.

[LindaRacine]

But, if he were involved in all of these surgeries,

Unfortunately, it's doubtful that he was involved in all, or even most of those surgeries. The paper was published in 2009, so it probably involved surgeries done in the early 2000's. At best, it may be that this surgeon held retractors during a few of these surgeries.

That is not meant to infer anything negative about this surgeon. I only post this because, unfortunately, I think published research isn't necessarily a great way to judge expertise. Some of the most published authors in complex spinal surgery do relatively few surgeries. That doesn't mean it's not useful. At least the authors have spent some time trying to understand the issue. That's light years ahead of other surgeons who not only don't do these complicated procedures, but who might also never even read about them.

I don't know about all facilities, but when the more complex spine surgeries are done at UCSF, there are generally at least two surgeons (typically one or two attendings, or one attending and a fellow). There is frequently at least one resident as well.

Once you've determined whether your surgeon has the necessary experience, all you can do is hope that any complications are minor. IMO, having a cervical to sacral fusion is about a 90 on a complex scale of 0-100. You almost certainly wouldn't need to be worried about PJK, but people with neurodegenerative diseases (which you probably have), have a tendency to have complications that require additional surgery. (For example... http://www.ncbi.nlm.nih.gov/pubmed/25988602).

By the way, when I did a PubMed search to come up with the above link, the first result (which wasn't at all related to the issue), has more authors, by many magnitude, than I've ever seen before. I feel really sorry for whoever had to type all those names! http://www.ncbi.nlm.nih.gov/pubmed/26799652

--Linda

[rohrer01]

I don't know how this turned into a Prince conversation. No, his religion didn't kill him. I know there are hospitals all over that do hip replacements without blood. There are even bloodless hospitals that specialize in nothing but complex operations. They do complex operations all of the time completely bloodless. He had enough money that if he wanted the surgery he could have had it without blood. I have a friend that chose not to have back surgery and kept her opiates because she was afraid of the surgery. Maybe that was his fear? I can give you countless examples of people I know having bloodless surgeries. I had an elderly friend who had a hip replacement without blood. My ex-father-in-law had a huge aneurysm at the junction of the aorta and the femoral arteries replaced without blood. My ex step-dad had a six-way bypass done with no blood and two knee replacements without blood, not even pre-donated (not JW). My DIL had a bloodless T2-L1 fusion without blood, also not JW. Two other friends have had double knee replacements without blood, one at our small town hospital and one at a VA hospital. Doctors now use blood as a last resort. Respectfully, I don't want religion brought into this conversation. There are people out there that will claim to be JW just to avoid blood. You don't have to be JW to make this request and doctors have to honor it or refuse to operate if they aren't capable or comfortable doing it. Look at Dr. Hey. He NEVER uses blood in ANY of his post-op updates. There is a reason for that. Blood is one of the most dangerous medical interventions out there and should be avoided for everyone if at all possible despite their beliefs. JWs have actually paved the way in the pioneering of bloodless medicine. So, even if you hate them, the next time anyone has a huge operation that used to always require blood, you can thank them. Mortality rates are lower and cancer recurrences are lower in patients who receive bloodless medicine. This isn't a religious debate, especially about Prince. There are many studies on bloodless medicine if you care to look them up. My own study in biochemistry and working with bovine blood plasma has taught me that there can be a lot of tag-a-long viruses that we don't have the capability of filtering out.

I would love to attend your meeting and try not to ask too many questions.....(Probably get kicked out LOL) but, would love to be a fly on the wall. One of these days here soon, I will retire and probably start fulltime RVing so I can travel around the US and visit friends.

Ed

As far as you, Ed, being a fly on the wall... you'd definitely have the right questions to ask! I actually would appreciate your feedback since you've been through it. You would be a welcome visitor at some point in the process so I'll keep your offer in mind. Thanks.

But before we get ahead of ourselves, my neurosurgeon has said I need fusion before. Then I go to a surgeon and he says no, then yes if pain increase or any change, then I go back and he says no and has no recollection of what he said. The neurosurgeon then cow-tows to what the spine surgeon says instead of getting me a second opinion.

So IF I get to see this new surgeon, it will be a consult. I do NOT want to be fused head to tail. I don't know how far up the neck it would need to go. I wouldn't consider fusing the whole neck right now for a couple of bulging discs. I would wait until they were actually causing some significant neurological problems before I would ever consider it. As far as the lumbar, I'm in horrible pain from L5 down. That is a lot of good lumbar to save. I don't know if my very low problems would play into the equation or not. I would like to keep my L2,3,4 if at all possible.

My biggest problem is the severity of the hypokyphosis that I have. It is causing my esophagus and aorta to vie for space. The shape of my neck could be a contributing factor in my swallowing issues since it is stretched and twisted. My stomach is also twisted due to lack of room. Plus the fact that my scoliosis shouldn't be progressive considering I started out at <40^o at skeletal maturity. I have documentation from cardiology that my heart is deformed and displaced and I have documentation from gastroenterology that my esophagus/aorta and stomach are affected by the scoliosis.

Just a thought. I know there is a bracing debate going on out there. I would HIGHLY recommend that anyone considering a brace for their child consider the consequences of intentionally creating hypokyphosis just to get a straight lateral spine. I'm in a real pickle and I was never braced, thankfully!

I do want to say that I have been on and off of narcotics since my late 20's. Currently it's been several years. There was ONE point when I was on a 50mcg fentanyl patch with up to three or four 5mg Percocet a day for the breakthrough pain. I was in a lot of pain when I went to bed, so I took a Percocet. When it kicked in I found it hard to breathe and had to work at it, then fell asleep. Thankfully I woke up! That scared me, as did the patch because of the deaths from defective material causing too much drug leakage. One pinhole in that thing can overdose you. I asked my doctor to wean me down. I actually nearly got off all the narcs except for the occasional 5mg Percocet. That was BEFORE the leg pain. I now take 40-50 mg of oxycodone/day because of lower and upper back/neck pain. I've had multiple surgeries where my level, at its highest was 80mg. But I had back to back surgeries. So I went from 40mg standard dose to 60 after the surgery. That was hard to come down from before I had my next surgery, shoulder surgery, where I was allowed two more pills/day which was the 80mg. I didn't need that for long and am back down to 40 most days, 50 on bad days and 60 on a REALLY bad day. My doctor will allow me to take 80 to keep myself out of the ER if and only if it's just pain related. I have never taken that much since two weeks out from my shoulder surgery a couple of years ago. I know how dangerous this stuff is. I also know that I'm never going to be pain free. I don't know what surgery will do to me. It scares me. I would like to get off the stuff completely. That's why I'm doing all this other stuff to help with pain. If I get an ablation, I'm afraid it will affect what neuro function I have in my legs. I'm also curious if my pain will equalize after a while off the oxy. It's just getting to that point without ending up in the ER with a LOT more narcotics because I let the pain get out of control. I have gone through the withdrawal process many times as I have been on fentanyl patches several times and a little oxy every three then four then five hours each day or two still doesn't cut it. It's horrible. You feel burned all over and have diarrhea every time you swallow your own spit. You are hot and cold and just sweat all the time. Honestly, I don't know how Ed kicked a 100mg/day habit cold turkey. That takes huevos! (sorry if that's crude, not meant to be)

The end of a very long post. Feel free to ask me questions. I will try to answer them.
Rohrer01

[Pooka1]

In re Prince, it may not have been a matter of being able to get the surgery without needing a transfusion. It may have been a matter of the surgeon not being able to guarantee that he wouldn't give him blood it is meant him dying without it. Surgeons take oaths to do no harm.

No surgeon should be asked to respect a promise not to give blood if the patient will die without it and could be saved with it. That is an impossible situation and I am wondering if any surgeon could ethically agree to let him die rather than to save his life if he needed blood.

If it is the case that he refused surgery because he couldn't find a surgeon to promise not to give blood to save his life, and he then died of an opioid addition, that is what it is. If that is how it went down. Can't sugarcoat that.

[jackieg412]

I know we are off topic but I work at a hospital and about 2 years ago they had to let a new mother die that needed blood after a major hemorrhage after giving birth. Very hard on all medical personnel. But that was her and her family's decision. And by law it has to be respected.It was hard on every one that knew.
Sorry but we'll turn this back to the thread that was started.

[rohrer01]

Unfortunately, it's doubtful that he was involved in all, or even most of those surgeries. The paper was published in 2009, so it probably involved surgeries done in the early 2000's. At best, it may be that this surgeon held retractors during a few of these surgeries.

That is not meant to infer anything negative about this surgeon. I only post this because, unfortunately, I think published research isn't necessarily a great way to judge expertise. Some of the most published authors in complex spinal surgery do relatively few surgeries. That doesn't mean it's not useful. At least the authors have spent some time trying to understand the issue. That's light years ahead of other surgeons who not only don't do these complicated procedures, but who might also never even read about them.

--Linda

Thank you, Linda. This actually makes sense. He's been on his own practicing for eight years. That doesn't mean he's only been a doctor for eight years, which I knew. I would like to think that he was involved in the whole study and just didn't jump in, as I doubt other doctors would want to share credit with a newbie. He may have been in the OR or he may have been involved in the imaging part, or both. Either way, this puts me more at ease that he knows a lot more about this issue than even some of the old timers. I can't imagine more than two cervicals being fused. I just need to hold my head upright.

I have thought about the number of adults having surgery and the revision rate. It seems like almost 100% on this forum, sadly. I don't want to spend the rest of my life having surgery after surgery. I've had my fair share already.

I will look at the articles you found when I have some time to really look at them. I don't even know if I'll get to see this guy or if this will go anywhere. It might all be a bust as it seems it has been my whole life. It's hard to live your whole life with a big surgery hanging over your head. That's what it's been for me. If only I'd had it done as a teenager. The old Harrington technology would have prevented all of this as only about 4 - 6 vertebrae would have been involved vs 15 or more. Grrr...

Rohrer01

[Pooka1]

It is not fair to put doctors in that situation. That is so bad for the family and for the doctors.

Can you imagine the death threats any surgeon would live with the rest of their lives if they let Prince die while respecting his wish not to receive a blood transfusion when he could have been saved?

If all of this is the case, I doubt he would find a surgeon who would agree to the surgery under those circumstances.

There are the Darwin Awards but that is cold comfort in the case of that young mother or Prince or anyone.