How many actually use SRS docs?

[rohrer01]

So far I've had one very good neurosurgeon tell me that I needed the surgery, but he was not qualified to do it. He referred my to an SRS doctor that refuses to do it until the curve reaches a 60* magnitude. How absurd is that? I'm already in debilitating pain!

[ShariMSU]

Michigan surgeon

I did not use an SRS doctor and had not heard of this organization until after my surgery. My surgeon, Dr. Harry Herkowitz, in Michigan, is awesome. He has written text books that medical professionals and students use to perform adult spinal surgeries. He is Chairman of Orthopaedic Surgery at Beaumont Hospital, and on the board for American Orthopaedic Surgery. He only does adult spinal surgery and has spent his career reconstructing adult spines. I'm not sure qualifications that are needed to be an SRS doctor, but from my experience this was not a determining factor for me.
I would highly recommend anyone who lives in or near Michigan checkout Dr. Herkowitz. A truly skilled and compassionate surgeon!

[rohrer01]

Thanks Shari, it's definitely worth considering. Michigan is a little far, but then again so is North Carolina. I'm just fighting with my insurance company who doesn't have a single provider that can help me. They want me to only see one out of network doc, and he won't help me.

[twinsmom]

SRS and problems

My daughters' surgeon is SRS and we ran into mutiple problems. We are going for a consult with a non SRS surgeon with a Peds Fellowship under his belt who works in tandem with another experienced Peds Ortho. Our first Consult was with a SRS and long time Peds Ortho. We saw hiim when we were in the middle of all of this. Insurance was an issue but he also talked down to us and didn't have the medical records I had worked so hard with the hospital to be sent. It was a complete waste of time and money.
However the new doc is friends with our old one. Could be an issue here. We are also having an ID consult as well, just in case we decide to follow through with this new hospital.
It seems as if our old doc is running into problems. My daughter's case is well known now.If she were to go back to him, it would help him out alot. He said he would make her back look beautiful. I am finally at peace with this doc. But I would be very open to the other hospital as well. It is much further away from home so that would make it a hardship. I think a two to three hour consult will help all of us debrief from the awfulness we went through earlier this year. To put the past to rest and have closure with a good understanding of what happened would be so wonderful.

[Back-out]

So far I've had one very good neurosurgeon tell me that I needed the surgery, but he was not qualified to do it. He referred my to an SRS doctor that refuses to do it until the curve reaches a 60* magnitude. How absurd is that? I'm already in debilitating pain!

rohrer, I am struck today by your painful dilemma (after getting yet MORE - different - Cobb readings) by the fact that you"re unable to get relief because of a few degrees in your Cobb - if I remember right. Let's suppose the angle problem were suddenly resolved - do you know what you would want to do? I'm finding it so hard to compartmentalize decision-making - in my case, to simultaneously plan for surgery ("as if") and on the other, to try to retain objectivity and use the time for decision-making ("as if there were NO pressure"). It's not working.

If you suddenly found this "thresh-hold Cobb" weren't a problem, do you really know what you would choose to do? Are you truly 100% convinced you're ready to say "yes"?

I ask this because a) based on my wacko variable readings, I'm increasingly thinking the Cobb reading is a much more variable quantity than thought (and wondering if you couldn't find a way to "Fudge" a difference of a few degrees - all it would take for you AFAIR. Aren't you under by at most five degrees?).

Also, asking because b) I wonder if you are able to process your wishes (for or against surgery) while focusing on something you see as currently out of your control. Again, relating it to my own experience.

Maybe you've already asked and answered this question in spades - and you KNOW you're rarin' to go, on account of your pain level (which I realize is pure hell).

My "Cobb" is coming out so different (a range of 17 degrees including my local hospital - dubious, perhaps - but also a difference now of 9 degrees between two top facilities)! I am starting to think it's as much or more a function of different Xrays, as the readers (and human factors). (Heh, go to the Xray facilities I've been to and have your readings done all over and you may find your Cobb "qualifies you" - and then some - tomorrow! NOT trying to be frivolous about this - at all)

Just sayin'...

[rohrer01]

Amanda,
I've had two SRS docs measure my cobb angle. They were only off by 1/2*. I am at 46 and 38. I have a painful, progressive curve. I would definitely go for the surgery! I have tried everything. Sadly, today my doc put me back on all the meds I was on, plus one. I'm now on fentanyl, percocet, klonopin, and now gabapentin. I've gotten this weird phenomenon happen to my upper lumbar spine. I get these strange swellings in the skin above the spinous process. The first time it happened, it was only one HUGE swelling, which I attributed to a bug bite. The next time (this weekend) it spanned about 4 or 5 vertebrae (so maybe lower thoracic/upper lumbar region). My doc thinks it may be something to do with the sympathetic nervous system and the nerve pathway that is associated with some of my pain. It was really scary when that happened. I'm to the point that I don't care if I see an SRS doctor or not. I just need someone to help me. PT doesn't help anymore and I can only take so many drugs. I feel like my life is on hold until I can get off the drugs again. Sadly, I may just have to accept the fact that I may NEVER be drug free again. I just wished that someone who could actually help would believe me. All the docs that can't help me believe me, why not the ones who can?

[Back-out]

I'm so sorry to hear all this, rohrer. I don't know which is the saddest - the business with the pain meds (the ones you weaned yourself from with so much courage), the strange and horrible new affair with the swellings, or just your sad resignation.

I want to point out FWIW that there is a neurosurgeon I'm planning to see (if I can get there - a five hour drive) . He's a Dr. Chris Shaffrey at the U VA - board certified in neurosurgery AND orthopedic surgery, specializing in deformity work

He is reputedly very cautious and very good - I think he does a lot of revisions which makes him even more cautious than otherwise, I'm sure. I don't know if it would work for me within my time line ("Deadline" is starting to have two meanings to me ). He might be someone for YOU to keep in mind, though, because of his dual certification. His CV and resume are also non pareil! , A very fine human being too. Don't accidentally miss his first name as his brother is a neurosurgeon too!

If anyone deserves a break it's certainly you, dear sweet rohrer! I hope and pray you get it. Don't forget all the stories we've followed here of suffering patients who finally DID find their right doctor and everything fell into place. Don't give up. I do NOT believe you will always be forced to rely on narcotics. I believe this for many reasons, including your attitude towards them but also - why NOT? Why should you not find relief as so many have?

Not yet. No, but your turn will come. It's such a shame you have to wait in pain as you are, but don't let the pain beat your fighting spirit into the ground!!!

[Back-out]

BTW they are doing work at the Cleveland Clinic I think, on the premise that back pain and arthritis can be caused by an infectious agent. High level antibiotics are used in treatment. Have you had a CBC and sed rate checked recently - not to mention "the usual": ANA and LE tests?

[rohrer01]

I haven't had anything checked lately. I haven't even had a physical in over two years. It's like "let's add ANOTHER doctor's appointment" to me weekly (or at least it seems so) regimen.

[gmw]

Rohrer--your mention of sympathetic nerve pain sparked an interest. i have had an issue with my left foot since surgery. i had a stress fracture in it several years ago and initially thought pain was just settling there. Then it started to swell, turn red, sore and warm to the touch. My PCP gave me a shot of Toradol and it did get a good bit better. My surgeon says he thinks it is a sympathetic response to the nerves severed in my lower abdomen during the surgery and it will get better over time. It is better, the swelling has gone down, but is still pink, warm to the touch and a little sore. Has anyone else heard of this or experienced anything like it?

Glenda

[rohrer01]

Rohrer--your mention of sympathetic nerve pain sparked an interest. i have had an issue with my left foot since surgery. i had a stress fracture in it several years ago and initially thought pain was just settling there. Then it started to swell, turn red, sore and warm to the touch. My PCP gave me a shot of Toradol and it did get a good bit better. My surgeon says he thinks it is a sympathetic response to the nerves severed in my lower abdomen during the surgery and it will get better over time. It is better, the swelling has gone down, but is still pink, warm to the touch and a little sore. Has anyone else heard of this or experienced anything like it?

Glenda

Yeah, that's strange. It is "below" your surgery. I have upper thoracic and mid-thoracic curves and the swelling is below them. Maybe I am getting some pinched nerves in there. I know this is off topic, but since I started the thread I don't really care. Maybe someone will chime in or I will just start a new thread. I would really like to know if anyone else has experienced this as well.

[rohrer01]

I want to point out FWIW that there is a neurosurgeon I'm planning to see (if I can get there - a five hour drive) . He's a Dr. Chris Shaffrey at the U VA - board certified in neurosurgery AND orthopedic surgery, specializing in deformity work

He is reputedly very cautious and very good - I think he does a lot of revisions which makes him even more cautious than otherwise, I'm sure.

If he's cautious, he probably won't help me. I'm finding that at every turn, I have to fight, fight, fight with my insurance company as it is AND they have some very good neurosurgeons that can't help me. I'm SURE they don't want me to have surgery because they don't want to PAY for it. So very frustrating!

[Back-out]

I haven't had anything checked lately. I haven't even had a physical in over two years. It's like "let's add ANOTHER doctor's appointment" to me weekly (or at least it seems so) regimen.

I know, I know. Poor, rohrer.

The thing abt this lab work, tho, is they're the first things to check to see if you're having an inflammatory response to infection and or/autoimmune processes.

[gmw]

Yeah, that's strange. It is "below" your surgery. I have upper thoracic and mid-thoracic curves and the swelling is below them. Maybe I am getting some pinched nerves in there. I know this is off topic, but since I started the thread I don't really care. Maybe someone will chime in or I will just start a new thread. I would really like to know if anyone else has experienced this as well.

Rohrer --Glad you started a new thread. Will be interested to hear what folks know about it.

I am so sorry you are having such a hard time getting doctors and your insurance company to take you seriously. I finally had a meltdown in my PCP's office as I felt I wasn't being taken seriously and he was able to get my insurance company to move. Emory Spine Center was in my HMO's network, but they wanted me to stay in Tallahassee. My PCP had to convince the HMO the drs in Tallahassee could not help me.

[rohrer01]

I'm to the point that I don't care if I have to fly to Timbuktu. I just want someone to help me.