I am still here, still staying busy with my boys, still going to more doctor appointments then any one person should ever have to endure.
I have been seeing doctors here in SC, 4 new doctors. 4 doctors that want to help me, doctors that send me off with script in hand to have more tests or scripts for new medications. I have found out some good news from some and others offer suggestions that just confuse me more.
I have been seen by a pain management doctor that during the first few minutes of meeting me said you do not look like the Ehlers Danlos patients I remember seeing in medical books. I thought to myself this guy might not work out. After listening to me describe my symptoms he also suggested I could benefit from having a spinal cord stimulator placed. As we went over more of my issues he said he would want to talk to my local neurosurgeon about my conditions before considering that option for me more. He said what he felt I needed was a break from the pain I am in. He did not feel the medications I had been prescribed for pain were strong enough to control my pain. We changed some of my medications and he said he wanted to look over the medical records that I had brought in that day of past test results and he was going to consult with the neurosurgeon I had been seen by here in Charleston.
During my next visits with the pain management doctor it was decided that I am not a good candidate for the spinal cord stimulator because of my syrinx and many of the other issues I have along my spine. My back hurts from top to bottom. He said the spinal cord stimulator would not help control the pain in all of these areas. We then talked about me having thoracic epidural injections at the areas I have herniated discs. I scheduled the appointment but it was after Jan. 1st. Since it was after the new year I would need to show up with the deductible and the cost my insurance would not be paying for this procedure. I will have new insurance Feb. 1st, I did not want to pay the deductible to one insurance company and then pay another in February. I have decided to wait, if anyone has any experience good or bad with these injections please let me know.
Even though during the first minutes of meeting my new pain management doctor and being unsure if he was going to be the right doctor for me he has turned out to be a doctor I look forward to helping me with the care of the many pain problems I have.
Out of all of the doctors I have seen here in Charleston my favorite has been an endocrinologist. During my first visit with him while I was describing my diagnosed conditions I said to him, "I am a mess". This is something I have said when I see the person I am telling my conditions to when I notice them to begin going cross-eyed. Believe me it happens quite often, I know it is a lot to take in. He told me he did not want me to think of myself that way. He reminded me that I still have my mind and that I have 3 children. He told me of some of his patients that were never able to have the blessing I have received. He said I know it is bad to have this condition you have been diagnosed with, I know you have a pain I could never imagine but you have been blessed in ways others would give everything they had in their life for.
This doctor during his exam of me felt my skin and said you have the soft, stretchy skin of an EDS patient, he then asked if he could examine my eyes. He then said you have the blue sclera of an EDS'er. Dr. Francomano the EDS specialist is the only other doctor that has commented on my blue sclera. As I talked to him more I knew this guy really knew what to look for in me.
I did have more blood drawn at my appointment with him then any other appointment I have ever had. He checked my adrenal function, checked me for celiac disease, and on and on. In the end the only thing that came back abnormal was my vitamin D levels. Something I have been told before. I am vitamin D deficient. He went on to say vitamin D is not really a vitamin but a hormone. He thought just as important as estrogen and testosterone. He said one of the reasons I feel so crummy. He said we as humans, were made to run around with no clothes on close to the equator but since we have all moved away from it we need to supplement greatly with vitamin D. He even said as an EDS patient you do not absorb vitamin D well so you need even more.
The endocrinologist also sent me for a bone density scan for my osteopenia. He even had my upper back scanned and the tech questioned it saying to me this is a test we do on women 65 and older. She left the room saying I am going to call his office and make sure this is the test he wanted done for you, and of course it was.
I am happy to say my bone density scan came back completely normal! The endocrinologist said he felt more than anything else I have done he felt staying active is what helped increase my bone density. He said the quickest way to loss bone mass is through inactivity. That inactivity I had before my surgery when I spent more time in bed then out of bed. Then after my surgery when my legs were weak for months. I know it is not possible for all of those with EDS/Chiari/POTS, and on and on, to get up and out of bed, but when you feel you can please make that effort. It can/does help.
As for my syrinx growing I have been told to have it re-scanned in 6 months. I was told having it scanned at different times during the day can make it seem larger or the place I had it scanned can make it seem larger, even the way it is cut during scanning can make it look larger.
In my last post I mentioned we had an appointment with Dr. Francomano in Baltimore in November. Her office called us a week before the appointment canceling on us. So we have not been to see her and we do not know if little Connor has EDS. I hope to find the time to get up there to see her with all of my boys during the summer months.
Hunter did have his appointment at The Chiari Institute in December. Again, some good news, some not so good. We found out Hunters syrinx has not gotten any bigger since his first appointment and might even be a bit smaller. I said to Hunter he is lucky to have a mom that takes everything he loves away for his health and that is why it has not grown. I was joking thinking again that I am funny. He did not see the humor in that. We were also told Hunter has what looks like a new issue, a arachnoid cyst in his brain. These arachnoid issues seem to be common in EDS patients. I had to have one removed during my tethered cord surgery. The doctor Hunter was seen by did not seem to think it was much of a concern now. But maybe later if Hunter would need decompression surgery. It is just something else to be dealt with. Hunter had a very long day during his appointments that day. We showed up at MDI at 7 am for imaging, then doctors at TCI. He was then sent back to MDI for more imaging. I am always so proud of him because he is so patient. He even sat through dinner with me with another chiari family that day. I did not hear any complaints at all from Hunter.
I am still as always trying to find ways to control my pain and issues without the use of medications. In November for my b-day my daddy sent me money for my present. I was planning on using the money to buy rocking chairs for our front porch. Here in Charleston you rarely see a porch without these rocking chairs. After further thought I decided to buy an inversion table instead. This is something the docs at TCI recommended in the past that I have inversion therapy as well as Hunter. Of course I love it! When we were away at Christmas I missed my inversion table and was looking forward to getting home to it. I bought the seated inversion table because the full inversion table would put too much stress on my EDS joints.
I have also found a few other things to be helpful, I will add links below:
tennis ball massage
Alexander Technique DVD
And, as always thank you for the emails and messages, I know I do not get back to everyone as I wish I would. I do read the emails and take your suggestions with me to the doctors and I always appreciate the support.