Thanks so much for the information Tracy, This helps puts things in perspective. I pray everyday that the Lord will work his ways through me during these trials. He has been good to me lately and always will. :)
Thanks Tina :)
God is definitely with you and I really feel you will have some deficits, but, you will be healed. I have my own stories I can share. What is the date of your Angio?
Probably not till next week. They are suppose to call me this week to decide a date. From my understanding Dr Snyder is supposed to communicate with a few other drs to be present for the angiogram. So hopefully ill hear something by tomorrow. Its getting frustrating on the waiting.
I also wanted to note to you that I'm deaf and my cochlear implants bar the use of MRI. I hope that doesn't greatly reduce the success rate of detecting the AVM. They found it through a cat scan.
Thought I'd add this finding on mine, something that seem to be assuring. I used to work at NIH in DC and I researched their site about nerve regeneration and found a lab testing of electroaccuuncture with promising results on lab rats and potential testing on humans. There is several sites that discusses nerve regeneration through electroacupuncture.
Here is the link from NIH:
http://www.ncbi.nlm.nih.gov/pubmed/12924841
http://www.ncbi.nlm.nih.gov/pubmed/7923723Well, Dr Snyder saw me last week and wasn't really sure to rule rather its Spinal AVM because of a lack of MRI ( I can't have MRI due to my cochlear implant, the MRI would literally rip it out of my head because of a magnet inside it) She did say there is mass and that it could be a tumor. However, angiogram is scheduled for Sept 21st and surgery on the next day on the 22nd.
Did any of you suffer intense itching in arms and neck or maybe side of head? What did you do to treat it?
Thanks!
I did not have any itching, just intense pain in my hip. Angiogram will allow them to see it and surgery the next day to remove it.
I'm beginning to see that most cases of AVM removal resulted in paralysis. I hope and pray that doesn't happen to me. :/
I would recommend that you get a second medical opinion. Speaking to multiple doctors will open up more facts/info to you. The downside is that it may leave you more confused.
You will experience some at first, that is the way the body works, but, you will be in good hands and you will walk again !
Did any of you get placed on pain blockers for your pain? And what was it?
Percocet and oxcodene
They say the itching is caused by the injury to the cord from the AVM. should go away after surgery.
My biggest concern is finding out that the C2 through C4 controls the breathing diaphragm and I'm scared that I will lose my breathing after the surgery not that the dr said anything. I guess I need to stop over reading the internet. The doc said the risk will just be weakness in both arms so I'll just rest my hope on that. Even thought the stomach muscle feel a bit weird and I'm always short of breath but my blood oxygen is 98 and i can take a deep breath just seems a bit weakened. I haven't told my dr. about this yet because I'm just noticing this now but the tummy muscle its been around since the "rupture" day. Forgive me if I appear over paranoid.
I was warned ahead of the surgery of the risk of paralysis and needing to be on a ventilator but that is if something doesn't go well, just like the other risks like death etc. You have to be warned of these risks to make an informed decision. Like you I do have slightly weaker, more shallow breathing than before.
They are a risk and not a definite outcome though. Your surgeon will do all they can to avoid this for you and won't put you at unnecessary risk during the surgery. My surgeon told me post op that they had had to leave a small part of the AVM as the risk of continuing was too high, fortunately it seemed to shrivel and vanish over the week post surgery.
I appreciate it is easy for us "post ops" to reassure you as we made it through but we were all there, exactly where you are now when we were "pre ops" and we do understand exactly how terrifying this is.
How is your lungs now? What did you do to improve them?
My question for all of you who have had or have AVM, did you have nerve pain pre ops? and what about postops? I have a lot of nerve pain in my left arm and left side of neck and behind my left ear.. not sure where its coming from but found out I don't have shingles. But the pain remains. Im worried about nerve damage nd how it can be with mm for life. I was on lyrica and it wasn't going anything for me and so I stopped and the withdrawals was horrid! Anyways, at the moment I'm just using lidocaine cream and motrin to ease some of the pain.
Share me your experiences please.