I heard from my Surgeon!! (Dr. Perra) So scared!

[babyboomer16]

Hi ,
I think some of you know my story. I am right now in very bad shape from two surgeries to fix scoliosis caused by a surgery back in 2006. It was a small fusion on L3/4 L4/5, with two cages and screws & a small rods. In 2010 I had surgery to fix the onset of scoliosis, three months later I had revision for it. I ended up fused from the back only, T2 to pelvic. Now I have ended up in Minniapolis with a Dr. Perra from the Twin City Spine Center.I have a bad case of flatback syndrome and saggital imbalance. I am bent over so that I see mostly the ground because I can't bring myself up. He is going to take a different appraoch to this second revision, such as going in from the front. Also he will do quite a few osteotomies(I had one)and has done lots more tests to take a look at the over all picture. It will be a 12 hr. surgery, split into two 6 hr. surgeries. As the loss of blood is too dangerous for 12 hrs. straight, because of the osteotomies.(bone bleeds terrible). It's going to take a lot to pull me up. And I know his plan is a solid one. But it still scares me. If anyone has any questions, I will be glad to answer them. I did't put too many details about the surgery in this post. But I am very tired tonight. I will post again, and keep you updated. This won't take place for a while, as I have to be on the drug FORTEO for a few months. Best wishes to all~~boomer

[Doreen1]

Hi Boomer,

I'm sorry to hear about your fear and your past spine issues. When is your surgery scheduled? Is a TLIF surgery an option for you to help minimize surgery time (it's basically an anterior surgery done from the posterior)? I am on Forteo too. What are your bone density scores? Have you had any side effects?

Warmly,
Doreen

[mabeckoff]

If your surgeon knows what he is doing then I think you will be fine. I had a 15 hour surgery in July with many osteotomies and came thru it with flying colors. This small three hour surgery is the one giving me the problems

[babyboomer16]

Hi Boomer,

I'm sorry to hear about your fear and your past spine issues. When is your surgery scheduled? Is a TLIF surgery an option for you to help minimize surgery time (it's basically an anterior surgery done from the posterior)? I am on Forteo too. What are your bone density scores? Have you had any side effects?

Warmly,
Doreen

Hi Doreen, I don't have a time set for my surgery yet. I have to start on the Forteo after I see my GP on Thurs. How long have you been on Forteo? And what , if any, side effects have you had? I will mention the TLIF to my surgeon. How does your surgeon do an anterior from the back?
When I had my dexascan they couldn't do anything but my wrist. I can't remember the reading, except my GP said it wasn't too bad. However, the cat scan that Dr. Perra ordered told a different story, and he said it wasn't good, as he could tell that I had osteoporosis . Anyway, thats why I have to be on the Forteo for a while. Wishing you the Best~~boomer

[Doreen1]

Hi Doreen, I don't have a time set for my surgery yet. I have to start on the Forteo after I see my GP on Thurs. How long have you been on Forteo? And what , if any, side effects have you had? I will mention the TLIF to my surgeon. How does your surgeon do an anterior from the back?
When I had my dexascan they couldn't do anything but my wrist. I can't remember the reading, except my GP said it wasn't too bad. However, the cat scan that Dr. Perra ordered told a different story, and he said it wasn't good, as he could tell that I had osteoporosis . Anyway, thats why I have to be on the Forteo for a while. Wishing you the Best~~boomer

Today is my 4th week, just finished my first Forteo pen. Several days ago, I started having bad aches in my knees and ankles. I haven't had any dizziness or nausea. I can live with aches, but not nausea/dizziness. I keep telling myself that the aches are new bone growing. Dr. Lenke is a pioneer in the TLIF field. What he does is basically a "reach around" from the back of the spine to the front through a posterior incision. He stopped doing anterior surgeries about 10 years ago and only does posterior surgeries now. The TLIF method (while not necessary for every patient) eliminates the need for a second surgery and less stress on the patient during the recovery process.

I found comfort in realizing it is better for a surgeon to tell you now there is a bone density issue and there is a way to improve it prior to surgery, rather than the you being under the knife and the surgeon saying, "Oh, no. Her bones are too soft." That was my situation; upset at first but then realized the blessing in the chain of events.

I started doing Forteo injections at bed time (I inject my thighs instead of tummy) since a lot of folks say it minimizes the dizziness/nausea, but now I do the injections in the morning to get them over and done with. I've also discovered chilling the needles in the frig along with the pen minimizes burning. Make sure your doc orders small 5mm or nano sized needles. It was interesting today when I was throwing out the old pen, I loaded one last injection but squirted it into a small dish to see how much of the "special juice" gets injected. The amount is teeny tiny, like the amount of two tear drops.

Try to focus on what your options are and move forward with whatever steps you feel are the right ones for improving your situation. I'm praying for you to have peace and guidance.

Warmly,
Doreen

[babyboomer16]

If your surgeon knows what he is doing then I think you will be fine. I had a 15 hour surgery in July with many osteotomies and came thru it with flying colors. This small three hour surgery is the one giving me the problems

Hi, I have been following your quest for a better quality of life! You have been through so very much. Your posts have helped me and I'm sure many of us on here. You accually went through a 15 hr. surgery? I knew it was long, but I couldn't remember it being that long. When do you plan on moving back home to New Jersey,is it? I'll tell you, I have a terrible memory anymore.It's too many surgeries I think. My husband took me to Minnisota from So. Dak., and I was lucky I found an experienced surgeon that close, as I think my hubby of 32 yrs. is tired of the world of Drs. and all the hub bub that goes with it. He should be in my shoes! Truley, I feel good about this surgeon after the last two. He seems to have a good solid plan. Anyway, just hope you get to feeling better. You have come a long way, and it is too bad your having issues. Keep posting, as you give me courage to go on with this--as if I have a choice. Healing prayers for you~~boomer(Linda)

[mabeckoff]

Hi, I have been following your quest for a better quality of life! You have been through so very much. Your posts have helped me and I'm sure many of us on here. You accually went through a 15 hr. surgery? I knew it was long, but I couldn't remember it being that long. When do you plan on moving back home to New Jersey,is it? I'll tell you, I have a terrible memory anymore.It's too many surgeries I think. My husband took me to Minnisota from So. Dak., and I was lucky I found an experienced surgeon that close, as I think my hubby of 32 yrs. is tired of the world of Drs. and all the hub bub that goes with it. He should be in my shoes! Truley, I feel good about this surgeon after the last two. He seems to have a good solid plan. Anyway, just hope you get to feeling better. You have come a long way, and it is too bad your having issues. Keep posting, as you give me courage to go on with this--as if I have a choice. Healing prayers for you~~boomer(Linda)

Thank you for your kind words. I am off to see Dr Bederman tomorrow and will report back here what he says

[Doreen1]

My husband took me to Minnisota from So. Dak., ~boomer(Linda)

Hi Linda,

My son lives in Spearfish, SD and have extended family in Rapid City.

Warmly,
Doreen

[loves to skate]

Hi Boomer,
I'm so sorry you have to go through yet another surgery to fix what two other surgeons did to you. I hope just knowing that others on this forum are pulling for you will be of some comfort to you. I wish you well and pray for peace.
Sally

[golfnut]

BabyBoomer,
I'm sure pulling for you. You've been through a lot. Be sure to keep us informed when you get your surgery date. Keep that positive attitude!

[babyboomer16]

Coincidence~~

Hi Linda,

My son lives in Spearfish, SD and have extended family in Rapid City.

Warmly,
Doreen

My son live in Spearfish also. My sister lives in Rapid City. I am about 250mi. south east of there, in Winner So. Dak. Spearfish is a pretty town. But that whole area is beautiful. Small world out there!

[SpineTime]

About osteoporosis

Today is my 4th week, just finished my first Forteo pen.

Hi Doreen,

I've been following along with your journey and I'm wondering about something. I hope this isn't a dumb question, but once you finish with the Forteo and have your surgery, do you have to continue to worry about osteoporosis affecting your fusion at some point in the future?

I'm wondering what happens to people who are fused when they are younger, then develop osteoporosis when they're older. Could osteoporosis or even osteopenia cause the fusion to break down if it's not diagnosed and treated promptly? That would not be good!

Lisa

[Doreen1]

Hi Doreen,

I hope this isn't a dumb question, but once you finish with the Forteo and have your surgery, do you have to continue to worry about osteoporosis affecting your fusion at some point in the future?

I'm wondering what happens to people who are fused when they are younger, then develop osteoporosis when they're older. Could osteoporosis or even osteopenia cause the fusion to break down if it's not diagnosed and treated promptly? That would not be good!

Lisa

Hi Lisa,

Not a dumb question at all. My surgery will occur before the end of the 2-year Forteo cycle. That was one concern of mine; do I have to wait 2 years then have surgery? Fortunately, no. In fact, Dr. Lenke will do surgery even if my surgery date is bumped up earlier which is what I'm praying for.

Unfortunately, the bone gains as a result from Forteo will quickly diminish once the 2-year cycle ends. Bummer. I'll have to go on a maintenance drug for a bit. At this point, I'm leaning toward Prolia as I'm learning there are much less side effects compared to the other choice which is Reclast which is literally killing people. There are a couple of things that may change for my options at the end of 2 years.

#1 I am now actively taking supplements (that do not clash with Forteo): Vit D, Calcium, Vitmain K, Magnesium, plus multi-vit. In December, I will have another blood test to see what my Vit D levels look like because last year it was a bit low. This new routine of supplements may be sufficient down the road (post-maintenance drug), but I definitely will take a maintenance drug for a bit post-Forteo because I do not want to gamble on losing my Forteo gains.

#2 There may be new options in 2 years for post-Forteo. The 10 year Forteo study will be finalized, I think next year, so there may be some new information about post-Forteo.

So it depends on the person as to whether or not osteo returns or worsens. At my "weakest link" so to speak (L5 is my worse disk), Lenke will implant two cages and pack it with BMP to create a stronger, faster fusion. Lenke plans to do 5 - 8 osteomoties which may also help with bone growth for fusion. My bone density everywhere else in my body is completely normal, so I am praying for strong fusion post-op.

Even though I had a hiccup in my path of pursuing surgery (Atlanta surgeon cancelled surgery because of bone density issue), I now see the blessing in that decision. I would have hated to be on the operating table and have her discover the osteo issue at that point and decide I was too soft to continue the surgery or for her to press forward with the surgery and get minimal correction.

Osteo can create issues with fusion if undetected/untreated. Keep in mind, not everyone needs to go the route of medication to boost bone density. Some effective changes are modifying lifestyle; consistently eating healthy and exercising. Since I've already been living that way for years (although I used to be very overweight), I had to go to the next step, medication because my scoli is deteriorating so quickly. I'm keeping track with other members on this group who are further along in their Forteo therapy as to what they decide to do post-Forteo.

Warmly,
Doreen

[SpineTime]

So it depends on the person as to whether or not osteo returns or worsens. At my "weakest link" so to speak (L5 is my worse disk), Lenke will implant two cages and pack it with BMP to create a stronger, faster fusion. Lenke plans to do 5 - 8 osteomoties which may also help with bone growth for fusion. My bone density everywhere else in my body is completely normal, so I am praying for strong fusion post-op.

Even though I had a hiccup in my path of pursuing surgery (Atlanta surgeon cancelled surgery because of bone density issue), I now see the blessing in that decision. I would have hated to be on the operating table and have her discover the osteo issue at that point and decide I was too soft to continue the surgery or for her to press forward with the surgery and get minimal correction.

Osteo can create issues with fusion if undetected/untreated. Keep in mind, not everyone needs to go the route of medication to boost bone density. Some effective changes are modifying lifestyle; consistently eating healthy and exercising. Since I've already been living that way for years (although I used to be very overweight), I had to go to the next step, medication because my scoli is deteriorating so quickly. I'm keeping track with other members on this group who are further along in their Forteo therapy as to what they decide to do post-Forteo.

Thank you for sharing this information. Honestly, if it weren't for this forum, this subject would not even be on my radar. But even my pain mgmt. dr. said at my most recent appt. with him "I'm sure your surgeon will mention it, but be sure you get a bone density test before surgery." If that was the first I was hearing of this, I think that comment would have freaked me out a little! I didn't think osteoporosis was something I needed to worry about just yet, at my age. (I see you and are are close in age. Actually I just turned 45 and need to update my signature.)

I'm really curious now as to how early the bone changes of osteoporosis start, and what part it plays in curve progression.

Lisa

[Doreen1]

Thank you for sharing this information. Honestly, if it weren't for this forum, this subject would not even be on my radar. But even my pain mgmt. dr. said at my most recent appt. with him "I'm sure your surgeon will mention it, but be sure you get a bone density test before surgery." If that was the first I was hearing of this, I think that comment would have freaked me out a little! I didn't think osteoporosis was something I needed to worry about just yet, at my age. (I see you and are are close in age. Actually I just turned 45 and need to update my signature.)

I'm really curious now as to how early the bone changes of osteoporosis start, and what part it plays in curve progression.

Lisa

Lisa,

I clearly recall the Atlanta surgeon saying the last time I saw her, "... you're young.... hmmm... I'm sure you are fine, but let's have you do a bone density test just to be sure." It's a simple 10 - 15 minute scan with you lying on a table that is NOT enclosed like MRI machine. I knew something was wrong when I called the nurse for my results days later and she refused to give my results and just said, "... it's a difficult test to read... a lot of numbers... surgeon will call you when she returns from being out of the country."

I recommend to anyone planning surgery to ask for a bone density scan DEXA.

I have since learned there are children with osteo; couldn't believe it. I belong to an osteo forum and I see a lot of folks talking about losing height, imbalanced hips and a ton of other scoli-related symptoms. When I ask if these people are aware if they have scoli, most say they just assume the osteo is the issue and never thought about scoli being a culprit. One woman said she recently found out she has scoli but is terrified of surgery and has moved it out of her mind (meaning she is doing nothing to learn more about her options for scoli). She said she is focused on osteo meds only.

Warmly,
Doreen