Hello - I'm back and developed osteopenia

[rohrer01]

Hello everyone,

I'm back after several years of not having a computer. I'm posting in this section because I've opted not to pursue surgery. I have developed osteopenia and my curve has been stable in the upper 40's lower 50's depending on who reads the radiographs. I couldn't keep up with posting after my computer fried. I was too cheap to buy a new one since I could do my essential tasks from my phone.

My HMO hospital hired a new scoliosis surgeon whom I was not impressed with. In "his" professional opinion anyone over the age of 25 is too old to be having this surgery. If you ask me, that just goes to show the degree of his skill level, which is low.

I came to the decision on my own not to have this surgery. A surgeon at Mayo Clinic in Rochester was willing to do the surgery, but over the years my neuromuscular disease has overshadowed my health concerns.

My major concern is the degeneration of my neck, for those of you familiar with my case already know, is involved in my extremely high left thoracic curve. I know I will have to eventually have to have some sort of intervention there due to 4 bad discs, but not at this time. I don't know what to expect on that front because of the cervical curvature, but I will address that in the surgical section if/when the time comes.

I just wanted everyone to know I haven't dropped off the face of the earth. My son just gave me a new computer!

So hello to all... I still see a multitude of familiar names. ;-)

[Pooka1]

Hey Rohrer! Welcome back! I think of you from time to time. You were a very effective contributor to the forum in my opinion.

Wow!

[rohrer01]

Thanks, Pooka! I will try to post here again, now that I have a computer. I've missed the discussions, but honestly haven't been physically well. I am grateful that my progression has been stable. Hopefully, it will stay that way...but I'm over 50 now with weakened bones, something I need to discuss with my doctor. Since I left the forum I fell and broke a rib. It's been a couple 2 or three years and it still hurts. It just goes to show how much torque is on my ribcage from my unusual curvature. I didn't actually fall hard. I rolled down a short embankment in the neighbor's yard and felt the snap. That makes the prospect of surgery that much more terrifying to me.

I have some interesting news for all you fellow scoliosis ladies out there. I have DDD in my L5/S1 disc. I had severe sciatic radiculopathy clear to my toes. My doctors were baffled because the DDD wasn't that severe so as to cause the severity of pain that I was enduring. I had a hysterectomy in 2018 and when all my organs were out of the way, it was discovered that I had endometriosis growing on the sciatic nerves low on the abdominal wall. Once it was zapped away and my ovaries were taken out (female hormones make endometriosis grow), the pain was GONE! So, just in case any of you are having sciatic pain and you have your female parts intact, have your gynecologists evaluate you for endometriosis. It is the great mimicker. I could have gone through a totally unnecessary back surgery if that had not been found. As it is, I went through many epidural injections that eventually quit working.

The voice of experience! Back problems can be a red herring for other underlying issues.

[titaniumed]

Rohrer! Yes, it has been a few years......Glad your son got you a new computer, welcome back

I am down in Colombia again. Flying back on the 21st, then down to Mexico 5 days after.

Having a little trouble keeping up here lately and will be a little slow with any replies.

Ed

[LindaRacine]

Glad to hear from you. I just thought about you on Saturday, and was going to try to make the effort to contact you again. Sorry to hear that things aren't really all that much better.

--L

[rohrer01]

Thanks for the welcome back Ed and Linda!

Things could be worse. They didn't expect me to live to see 50 and I'm 51! I'm seeing a neurologist every three months right now so he can get my meds right. I have less trouble walking. In fact, for short distances, one would think there's nothing wrong with me! So life's pretty good.

It's been three years since my last radiographs were taken, so I'm not quite sure where I'm at. I'm guessing about the same. I'm not sure if I posted this, but my friend that was born with congenital scoliosis died a couple of years ago. She was a very severe case and had had at least two surgeries over the years. Her lungs were severely compromised and she smoked on top of that. By the time she quit smoking it was too late to recover from for her. It was all very sad since she was only in her 50's. The perils of smoking are so much worse for our "community", not that they aren't life and death for everyone else, too.

I hope everyone stays safe through these rounds of storms. I saw where there was an avalanche at a ski resort near Reno/Tahoe. So glad you aren't there now, Ed!

You all take care,
Rohrer01

[titaniumed]

I saw that. They lose a few each winter in the Tahoe basin.

I was in a slide at Alpine Meadows in March 1983. It was up to my armpits and took me for a quick ride down about 500 feet or so. (Like an ocean wave) The snow was super light while travelling and when it settles, it has the consistency of cement. I skied out of it at an angle and was not in the settle zone. I have been in 2 slides over the years. My winter mountaineering skills are pretty good because I am still around. Not skiing anymore also helps in this regard. (smiley face) I made the news on one of them, I wish I had the article. "Lone skier and boarder trigger off massive slide and leave" I didnt know your supposed to notify the authorities? The Sherriff dept get kinds jumpy about these things. I didnt know this at that time.

Here is a little skiing tidbit. Line of the winter. Stress management.
https://www.youtube.com/watch?v=EMVPpPE_Bx4

Interesting on the endometriosis....I am also aware of scar tissue formations from my large ALIF from Karen Ocker. So far so good in that regard.....
Renal Colic from kidney stones will produce mind blowing amounts of scoliosis related soft tissue pain. It was the worst pain I have ever felt. Opioid constipation also is up there on the pain scale. When one poster posted about it having the consistancy of wood, I had to ask, what kind of wood? Teak or Mahogany? We sure have had some detailed discussions here through the years.....(smiley face)

Getting meds right is not easy. If they are not right, you really have to make adjustments slowly and wait for a response and try to evaluate. My neck is also roasted, and its been almost 7 years of trial and error with pain, and figuring out why it happens. Diet plays a strong part, eat crappy, feel crappy, weather changes are also a factor, atmospheric pressure changes. I manage with Diclofenac, you can buy it OTC for $3 down here. No problemo....I dont know what will happen with my neck. Will it eventually autofuse? I just dont know?

I keep the stress down and laugh as much as possible. It works well.

Ed

[rohrer01]

I'm on OTC painkillers now. Nothing stronger than Tylenol and Aleve. As some of you know I was on very STRONG opiates for many years. I struggled more then with pain management than I do now. It seems as your narcotic tolerance goes up, your pain tolerance goes down. I took myself off of everything. I eventually began struggling again with walking. So my neurologist is trying to find a balance of muscle relaxants that don't over relax my muscles while still treating the spasticity. I still get Botox injections around my neck and shoulder area.

I didn't know leaving the scene of an avalanche was a crime, either! I guess I learn something new every day!

[titaniumed]

I didn't know leaving the scene of an avalanche was a crime, either! I guess I learn something new every day!

No, It cant be a crime because you have to assume that the rest of the mountain can slide and take you out. Its dangerous hanging out in slide prone areas. Always ski with a partner, and account for you partner. Never ski solo in these kinds of conditions.

Weaning is a painful process....To learn about what happens, here is a thread you will find interesting
http://www.scoliosis.org/forum/showt...ors&highlight=

Ed

[LindaRacine]

I'm on OTC painkillers now. Nothing stronger than Tylenol and Aleve. As some of you know I was on very STRONG opiates for many years. I struggled more then with pain management than I do now. It seems as your narcotic tolerance goes up, your pain tolerance goes down. I took myself off of everything. I eventually began struggling again with walking. So my neurologist is trying to find a balance of muscle relaxants that don't over relax my muscles while still treating the spasticity. I still get Botox injections around my neck and shoulder area.

Thanks for your note on getting off of narcotics. I frequently take a lot of crap for my view on being on long-term opiates, but I saw SO many cases of people who were certain that they needed opiates to even put a dent in their back pain. When they were forced to wean from the opiates, they typically said that their pain was actually somewhat better off narcotics than on them. I'm sure that weaning is really tough, as one's brain is constantly telling them that their pain has increased, but if they get past that initial stage of addiction, their brain starts to react more normally.

Glad you're managing without the strong stuff.

--Linda

[rohrer01]

Narcotics are definitely a touchy subject. Weaning is very painful. The best help I found was to exercise when I could and keep myself distracted. There are individuals that seem to manage better on long term narcotics. The thing about it that upsets me is the hype of the opioid crisis always in the news. When I was taking my meds, I always took them responsibly. But somehow I always felt like a criminal. My daughter had two ribs removed from spine to sternum and the day OF surgery and the day after (2days in hospital) they would only give her oral Vicodin. Needless to say she ended right back in the ER the same day they released her. I absolutely hate it that they make us feel like criminals and junkies. My decision was made because I felt like my pain was never stable. I hurt all the time except for maybe 20 minutes or so after the meds kicked in. Then the pain came right back. So do I have significant pain now? Sure I do. I just manage it differently. I hold no judgement on those who need narcotics. I might end up there again, who knows?

I am open to questions anyone might have.

[rohrer01]

Just an FYI: My pain is no worse now than when I had been on the narcotics. In my case, they seem to lose a lot of efficacy after about a month. Then chemical dependence kicks in. Once you get past day 4 it's much better. Day seven it gets a lot better. For me, once I hit the one month mark, my pain stabilized completely to where it was on narcotics. I realize that this is probably not the case for surgical patients, so I wouldn't know what to expect after a fusion.

[jackieg412]

Glad you are back. Medication can be so difficult. Do also be very careful with over the counter meds. Trying to recover from my broken neck I began using high dose motrin. That is once I could because at first it was Tylenol.
The high dose motrin has began to have an effect on my kidney function. The blood work shows a drop in function in just a matter of 3 months. So just be careful.
Managing this latest surgery has taken a whole team of pain management doctors.

[rohrer01]

Thanks, Jackie!

I am very careful not to go over 3,000mg of Acetaminophen. I can't use ibuprofen as it interferes with my heart rhythm. I use naproxen sodium. I stay well within the recommended guidelines. I have watched my kidney function fluctuate, but all is well on that front. My kidney function has actually improved. But yes, this can be a very serious problem for those that aren't aware of the side effects. I only take the naproxen when the pain is too much for Tylenol alone. We need to educate ourselves and keep the lines of communication open and HONEST with our doctors.

It's really great to see so many familiar names here. I'm sure I'll get to know some newer members, too. :-)

[rohrer01]

Going to Graduate School to study Cellular and Molecular Biology

Sorry, I had to keep things going on this thread. I couldn't start a new one for some reason.

Just wanted you all know I got accepted to start graduate school in the Fall. I have been diagnosed with autosomal dominant mononeuropothy of the median nerve (MNMN). This is related to Charcot Marie Tooth disease. However, taking a look at my genetic screening made me question the severity of my symptoms and that of 80 -90% of my relatives related to my dad have neurologic symptoms...some have scoliosis. Scoliosis is very common among other neurologic problems. I have a variant in my DNA that is unstudied and is in the coding region for a protein that causes a nasty dominant form of CMT. I'm going back to school to study this variant, a single nucleotide polymorphism that results in the switch in an amino acid in this vital protein (for all you fellow science geeks out there). I do not believe that scoliosis is truly ever idiopathic, but caused by some other undetected disease process or gene mutation. Idiopathic just means, "We don't know, and stems from the root word idiot." I do believe that most cases are unique and should be looked at on a case by case basis. I am determined to get to the root of MY family's genetic problem. Not everyone has scoliosis, but enough do to make me hypothesize that it is a variable symptom over a wide range of symptoms that make us suffer. If I'm chasing a red herring, I'll figure that out. I'll try to keep you all updated. I will be taking mostly classes at first until this Covid-19 virus dies down. Please, everyone stay safe and wear your masks.

Rohrer01