Update On Dr. Henderson (Neurosurgeon) Visit In March.

[Maxine]

This is a note I put in the EDS neck surgery facebook page. I went to Bethesda Maryland again on March 30th to see Dr. Henderson, and also saw Dr. Clair Francomano on April 1st. I'm sorry, I don't come here much, and I feel bad for not being here to offer support. I'm mostly in the FB support pages, and rarely come here anymore. If anyone would like to contact me on why....send me and e-mail.

NOTE FORM FACEBOOK......

Well, we made it home OK. Had a really bad POTS spell on the way home----pounding heart while attempting the first rest stop....all the while the sleet was coming down in sheets in Pennsylvania. I'm doubled over in the entrance of the rest stop trying to get a grip, and finally did some breathing exercises, and mind control, and it helped. I felt the adrenaline surge, and I was shakey once I was back in the car. I took some pictures to distract myself. We went to my appointment with the neurosurgeon who said what we already knew.....I need surgery on the back of my skull, and my upper spine to repair the damage from cervical cranial instability.

My clivo axial angle is only 128 degrees, and it should be about 155-165.........this means my head is sitting forward much more then it should, and this is pulling on the brain stem. I also have pressure on the brain stem from a small sub arachnoid space (AKA----lower cranium). The problem is figuring out how far down my cervical spine (neck) to fuse, as I also have herniated discs on c-2-3, 3-4, and 4-5. He would like to fuse only down to c-2, so this is still being decided upon. I may need two separate surgeries. I also have herniated idscs on thoracic spine as well, but Dr. Henderson didn't think it was too bad. However, I feel a great deal of pain in thoracic spine.....It could be from thoracic kyphosis of upper thoracic spine, or lordosis of lower thoracic spine. I also saw Dr. Clair Francomano. She is a geneticist specializing in EDS. I also see Dr. Tinkle who is a specialist on EDS and connective tissue disorders. She was fantastic! What a kind soul this doctor is.........just a great spirit to her.

She gave a very thorough exam, and concurs with Dr. Tinkle and Dr. McDonnell on the Classical EDS with joint hypermobility and poor vascualr tone. She gave me some great recommedations for pain management without drugs.....one of them being myofascialtrigger point release which I can do at home with a workbook from author Claire Davies. Also, massage therapy, ultra sound, and possibly TENS unit. she also said I have translucent skin with easy bruising, and atrophic scaring. There were some other skin findings as well, and skin is mildly stretchey. She will be giving my MRA films that show a very poorly functioning vertebral artery with little or no blood flow to a vascular surgeon. She would like me to get the colonoscopy done, as I should have a while ago. I didn't trust anyone here in town to do this becuase I have been unstable for so long......sedaton would be tricky. She is arranging to have it done there. The process would be done by a GI doc familiar with EDS and my spine instability.

This has been a very difficult time for me, and I try to stay focused on getting well, but it's overwhelming with multiple things going on at once. The recent heart arrhythmias are scary, and although I have gone to the ER twice, and I've been checked out.........basic EKG, limited cardiac echo, and monitoring, they scare me very much, and If we could just erase these out of my life, it would make my life feel less limited. Usually after I have these spells it leaves me in a deep depression, because we can't catch them to find out what they are, or what's causing them. I wore a 30 day event monitor, and of course I didn't have anything significant on it, and the 3 years I wore an insertable loop recorder, I did not have an episode of any significance except one time, and the thing malfunctioned. Dr. Henderson said these recent heart palpitations, and arrhythmias could be caused from the brain stem compression. I feel like I'm smelling smoke or a dirty ash tray off and on every day. This makes it hard to breathe at times, and my weakness has increased significantly------to the point of making it difficult to walk more then 5 minutes, or to navigate any store.

ADDED to this note.....Dr. Henderson said I also have damage to the dorsal motor nucleus of the vagus and nucleus solitaris....this can cause heart arrythmias. This can also cause the gastrointestinal dysfunction. I have a narrowed subarachnoid space, along with damage to the tectorial membrane which is a significant ligament to the stability to the cervical cranial junction.

I appreciate any prayers.....especially for these heart issues to go away.... I'm not looking forward to surgery, as I don't know how stable I really am. I feel very nervous going under anesthesia feeling as poorly I as do.

Thanks for taking the time to read this!

Maxine :0)

[arizona girl]

Hi maxine, I sorry your having to deal with all this, but I'm so happy you are finally with health care providers that get your concerns and know how to address them. You have been waiting a really long time to get these things done. You were wise to wait! It is easy to not think about the realities of surgery, when you know there isn't any one you trust to do it yet, but your there and you do have to think about it, because blessing of all blessings you are finally with the right people. Answer to many prayers perhaps? I know we here who have read your posts and supported you, for sure have been praying you make your way to the right people.

So still be vigilant, but trust that you wouldn't be where you are if you weren't suppose to be there. How ever it turns out you will be okay. Let us know when procedures are going to happen so we can say some extra prayers for you. xo, ag

ps. I can't join face book right now for privacy reasons. So, do check in once in a while. I hope you didn't leave because someone treated you poorly.

[janiedelite]

Thank you so much for the update, Maxine. It would freak me out to be having heart issues like you describe, too! Keep fighting the good fight and being an advocate for yourself. You are an inspiration!

[Maxine]

Thanks so much for your replies and support.

Definately dealing with a lot, and I pray the my quality of life improves when I have surgery. I don't have much of a choice, but his surgery isn't a perfect surgery, and I pray complications do not happen, or they aren't very significant.

I'm trying to work with the Cleveland Clinic on understanding the seriousness on these spine/chiari related conditions related to EDS. They're pretty tough to deal with, but I'm trying to stay positive.

I'm well informed on EDS, and have educated myslef a great deal on cervical cranial instability/cranial settling, and chiari related conditions. I've known for years about all the different forms of dysautonomia, and know that if can be a result of brain stem compression, or upper spine compression.

I started out with a local support group on dysautonomia in 2001, and have learned so much since then. When I'm feeling better, I hope to work on a book for patient advocacy. I still see patient abuse/neglect on dysautonomia, EDS, and chiari patients is rampant, and if more patients go to their appointments informed, and they learn to stand up to their physicians, and NURSES, they will have a better chance of getting the right medical treatment.

Maxine :0)

[sue1234]

I am one with cervical stenosis, and have to always wonder if it is a cofactor in my POTS. You are right on when you say that there is alot of patient neglect!