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View Full Version : Tired, scared, and FRUSTRATED - hypokyphosis



rohrer01
01-16-2016, 01:09 AM
Hey there, everyone.
I have concerns that about brought me to tears after coming home from a visit with the GI doctors yesterday. I've had several falls over the past few months and have had some serious injuries, like concussions with loss of consciousness, a broken rib, damaged kidney, etc. So there are a LOT of imaging studies on me. I've had a CT/angiogram for chest pain, two recent CT scans with contrast and several x-rays for abdominal pain. I have difficulty swallowing and have had several very unpleasant tests done for that. After the doctors collectively reviewed my scans after my swallow study came up abnormal, they were able to rule out a tumor or scar tissue around the opening of my stomach (cardiac sphincter), which is constricted. Oh, and after an endoscopy, I found out that my stomach is twisted just enough that it could easily twist around, which is an emergency.

What they DID find that has me concerned is that my aorta is putting pressure on the cardiac sphincter. My heart is already displaced and deformed, along with all of the valves due to underlying scoliosis. The good news is my deformed heart anatomy works. My reason for writing this is that all of this is caused by the severity of my hypokyphosis. Apparently there is no room for a trachea, esophagus, heart, stomach, or even an aorta in the very limited space that I have between my sternum and spine! Of course, the heart is the first thing to move, but I never would have attributed my GI issues to my scoliosis. That aorta has me freaked out!

I wish the doctors would quit focusing on frontal angles and look at what the hypokyphosis is doing to people. I may have posted this already, but my main curve has progressed at a rate of 2o per year and my "compensatory" curve is now only 8o less than my primary curve and progressed 3o per year. AND I'm developing a lumbar compensatory curve now. The neurologist I saw seemed pleased with this progression saying it was my body's way of evening itself out. They don't pay any attention to the sagittal view except to see if you are leaning forward or backward. No measurement was taken of my hypokyphosis. I think I'm going to e-mail that neurologist and ask for another referral to see my scoli doc, just to discuss it with him. IF I ever have surgery, I don't want to wait until my muscle disease progresses so far that it puts me at too great of a risk.

The only options the GI people gave me are the choice of two meds (I'm already on one). The other one is Viagra! She says it causes headaches and blurred vision, things I already fight with, no thanks! Option two is Botox to my cardiac sphincter which WILL cause acid reflux, no thanks, again. She said my final option if I wouldn't do that is to eat pureed food. No thanks there either. See why I want to cry? Grrr... I said I would puree it with my teeth! LOL

I never really stopped to think about ALL of the implications of hypokyphosis! Yes, I was alarmed when I found out about my heart. But it is working fine. I never realize how it affects everything else. I always thought one of the "benefits", if you will (no offense meant), to having scoliosis and being fairly balanced was my very straight posture. It hides my curves and I can dress around it and no one can even tell I have scoliosis. I can tell you first hand that there are no benefits to having such a small space to fit so many vital structures in!

Sorry for the very long vent. I'll repost this on my own timeline as I will need it there to reflect upon. I just thought more people would read this if I posted here. I felt it was important to get this information out. Maybe one of the scoli docs will read it and take hypokyphosis more seriously...

I'm tired of all the torment I go through with the tests and treatments... :'-(

Sad and afraid,
Rohrer01

Pooka1
01-16-2016, 09:17 AM
Rohrer! I have been wondering how you are doing. I am so sorry to hear you are having issues and a million tests.

What you are saying makes some sense. I agree you need an appt with a deformity surgeon for the hypokyphosis. It may be you need that fixed just like people with Sheuermann's need help for too much kyphosis. If they do that then they will probably fix the scoliosis to some extent I bet.

If fixing the hypokyphosis solves many of your heart and GI problems, is that a reason to go forward with it? Did the cardiac and GI doctors think that would solve your issues?

Glad you came back to the forum but sad to read the news. Good luck, Rohrer.

Susie*Bee
01-16-2016, 09:28 AM
Rohrer - I responded already in your timeline, before I saw this one... sending my best, Susie
Here-- I decided to cut and paste so things could be together...

Dear Rohrer - I appreciate the update and want you to know you're in my thoughts and prayers. How good of you to warn others about awareness of hypokyphosis and its possible complications, all in the midst of your present worries.

I am so sorry about the GI problem, as my sister has that as well-- has for years and years. We live 2,000 miles apart and I haven't asked about her problem lately, as she has many other medical issues as well (LUPUS, lung, etc). I DO know that she has had to go to the ER and then admitted to the hospital due to total stomach twisting/cutting off that was life-threatening at least once or twice and so for several years has been very strict about what she eats. She appears to eat fairly normally but there are many foods that don't break down at all, (fiber foods, I think), no matter how much you chew... so they can cause blockage at the twist/turn. So she is very selective.

Did your swollen feet/leg problem completely go away when you stopped the gabapentin? I have that problem and I have a swollen throat problem also, Mallampati score of IV. We can talk more about those if you want. I think mine are related to the CMT. Take care-- and thanks again for letting us know how things are going. You can get through this. You are a determined person!

JenniferG
01-17-2016, 03:30 AM
I could cry for you Rohrer. I can't offer you any suggestions but I hope that writing it down was in some way cathartic. Let us know how you go. Good luck.

rohrer01
01-19-2016, 02:19 AM
Thank you everyone for your support! YES, writing things down and SHARING them with others is very therapeutic, and helpful (hopefully) to others as well. I'm actually thinking about going back to school to get my masters in Cellular and Molecular Biology. My study topic would be my own condition using knock-out mice. For those not familiar with this, you breed mice that carry the mutations that I have and basically watch them and see if any muscle or neurological symptoms develop.

For those opposed to animal studies, I apologize in advance if I offend you. With that said, almost ALL of modern medicine comes from animal studies, then HUMAN studies. I would NOT be harming these mice any more than I am being harmed, and I'm HUMAN. With animals you can at least humanely euthanize them if they seem to be suffering. That's not the case with people.

Dr. Jack Kavorkian was able to make people aware of the cause of human suffering and now assisted suicides are legal in at least a few states. I'm not taking sides on this issue because I truly don't know. I don't even know enough about myself or my moral convictions to say one way or another. But, when my doctor asked me how long I wanted to be kept alive, I DID have to start thinking about this. The ONLY reason I bring it up is because I don't want anyone thinking I'm an inhumane person for wanting to use mice. It's already come up with some of my family members. I just told them I'm a person, not a mouse, and I HAVE to live with it.

I would also like to try and enter the work force, disabled or not. I'm pretty sure that the University would offer me some kind of part time position. I also want answers and haven't heard any news back from the NIH and their study on rare and undiagnosed diseases. I'm basically waiting on my sister to get her DNA test done. Unbeknownst to me, she chickened out and decided NOT to be tested and didn't tell me. She said she didn't want a diagnosis for insurance reasons. I explained that my findings did NOT give me a diagnosis, but I NEED those results to see if she has the same markers or not. She IS affected and has a diagnosis of a neurologic disorder of "unknown origin", which is similar to what they are telling me. I explained that NOTHING would change. But if she DOESN'T have the same markers, then they need to look elsewhere in our genomes (or should I say "my" genome) for other mutations that could be causing these symptoms.

There are a couple of problems that I have with going back to school. Number ONE is money. I don't want to get into debt so will need to start looking around for some scholarships and grants. The other problem would simply be, "Will my health allow it?" Could I make all the classes, or think straight enough to pass them. Remember, I've had close head injury at least twice. It has affected my ability to spell (I'm mostly better from that phase), read music, and short term memory issues. I used to memorize numbers like crazy. Someone would tell me their phone number and I had it for life. Now I have to look up every phone number, but slowly improving there. I can no longer speed read and have trouble reading anything more than a paragraph or two. My eyes repeat on the same lines or higher over and over. I use tools like a piece of paper to help there. But my eyes won't stay focused for long. All of these things worry me about going back to school.

So sorry for the long post, again. I hope no one thinks I'm a monster. I raised and killed Brewer's Yeast like crazy for three years (Saccharomyces cerevisiae). If anyone knows of scholarships available for the disabled, please PM me. There could be a LOT more "idiopathic" cases, like mine, that turn out NOT to be idiopathic but part of a bigger disease.

Sincerely,
Rohrer01

susancook
01-19-2016, 03:41 AM
Rohrer, Your interest in going back to school and studying mice injected with neuromuscular diseases reminds me of a movie, "Flowers for Algernon". Have you seen it?
Susan

mabeckoff
01-19-2016, 10:52 PM
I am so sorry for your problems

Melissa

rohrer01
01-25-2016, 12:34 PM
No I haven't seen the movie. If it's good, I'll watch it.

Thank you all again.

Sharon, I have not discussed having corrective surgery at this time. As far as my esophageal issues go, now they want to do an endoscopic ultrasound to make sure that it is what they think it is. They no longer want to do Botox as it can build scar tissue in the esophagus over time and lasts "maybe" six months. If I develop scar tissue, then I wouldn't be a candidate for two other procedures they've come up with. One procedure I will have to look up and the other is balloon dilation. I've seen that done, but not quite sure how it holds since they remove the balloon. It's not like balloon dilation of the arteries where they are pushing plaques aside. The other procedure is a surgical procedure. So I will be asking if having my back "fixed" will help these other problems. My lower back and sciatic pain are excruciating already. I can't imagine putting any more weight on my lower spine and might end up fused down there from L5/with pelvic fixation. The degeneration really isn't that bad according to them, but I'll tell you it's hitting some nerves! The scoli doc doesn't even know about the neuro/muscle problems I have, yet. I'm kinda not liking his back and forth attitude. I don't like inconsistencies. He also has a reputation for tremendous blood loss whereas with Dr. Hey (my feelings aside) has a reputation for no blood loss and seldom even uses the cell saver. I don't want a messy surgeon!