I was pregnant in 2009 when I started having problems. During my pregnancy I started hearing a noise in my left ear. A month after I had my son, I went to my primary who didn't like the fact that I was hearing noises in my ear. He immediately ordered test and I found out the next day that my caroted artery had collapsed. By February I found a neurosurgeon, March I had little to no blood flow to the left side of my brain, and by April I had my sta-mca bypass surgery. Now I was only diagnosed with unilateral moyamoya. My surgeon told me at my 6wk appointment that he didn't need to see me again unless I had stroke like symptoms. Now confusing as this my be for me, I still have a lot of questions that I need answered.
Since my surgery I continue with headaches, vision problems, and electrical shock feeling that shoot through my head (mostly on the left side where the surgery happened). Now I am wondering if this is all perfectly normal? Also I found out in September that I now have a Thyroid problem and I have also started developing hives. Now has anyone else had a change in Thyroid or started having hives? I have never had either of these problems before my surgery. I don't know what is suppose to be normal and my poor primary has no idea what to do because he knows less than I do. What he knows of Moyamoya is what I have taught him or what he read online. Please help....It's greatly appreciated. 

HI!

I spotted this recent article on PUBMED and thought it may be relevant re: thyroid issues.

Feb 24. [Epub ahead of print]

Increased Thyroid Function and Elevated Thyroid Autoantibodies in Pediatric Patients With Moyamoya Disease: A Case-Control Study.
Li H, Zhang ZS, Dong ZN, Ma MJ, Yang WZ, Han C, Du MM, Liu YX, Yang H, Liu W, Duan L, Cao WC.

From the Beijing Institute of Microbiology and Epidemiology, State Key Laboratory of Pathogen and Biosecurity, Beijing, China; the Department of Neurosurgery, 307 Hospital, PLA, Beijing, China; and The General Hospital, PLA, Beijing, China.

Abstract
BACKGROUND AND PURPOSE: The purpose of this study was to investigate whether thyroid function and thyroid autoantibodies were associated with the risk of moyamoya disease in pediatric subjects.

METHODS: Thyroid function and thyroid autoantibodies were evaluated in patients with moyamoya disease and control subjects, and their associations with moyamoya disease were estimated using multivariate analysis.

RESULTS: We included 114 pediatric patients and 114 healthy control subjects. The patients displayed higher prevalence of increased thyroid function and elevated thyroid autoantibodies in comparison with control subjects. These remained significant after multivariate adjustment; the ORs (95% CI) for increased thyroid function and evaluated thyroid autoantibodies were evaluated as 12.47 (1.55 to 100.51) and 4.33 (1.29 to 14.59), respectively.

CONCLUSIONS: Increased thyroid function and elevated thyroid autoantibodies are associated with moyamoya disease and therefore monitoring of thyroid function and thyroid autoantibodies in patients with moyamoya disease is suggested, which might help to guide subsequent clinical management.

PMID: 21350209 [PubMed - as supplied by publisher]


LinkOut - more resources

Thank you for the replies.
The only problem with getting a second opinion is not knowing where and how. Because of the insurance I have to get referrals. My primary doesn't know who else to refer me to. One neurosurgeon that he talked to doesn't want to take me on because I have prior treatment with another neurosurgeon who is fully capable of understanding my situation. Other neurosurgeons don't know much about Moyamoya or I hear different stories from them. I don't know what to do at this point. The surgeon who performed my STA-MCA did a good job as far as I know but he has left me with so many questions. Before my surgery he said that we would become very acquainted over the next 5yrs because I had to be monitored due to the fact that I only had unilateral Moyamoya. 2wks after surgery I was told that I would be referred to an occupational therapist but at my 6wk he said he didn't have to see me again unless I have stroke like symptoms. I continued to have headaches and TIA's. One morning in September 2010 my mom came over to find me in my room asleep. When she woke me she seen that the left side of my face slumped. It wasn't the first time it had done this. My mom said no more. I finally got my Neurosurgeon to see me again and he performed all the test which resulted in internal bleeding and 3days in the hospital. When we went for my appointment to find out what he found he said to me that it was nothing more than what was expected. Ok what does that mean. I asked if I had any brain damage and he said nothing that wasn't expected. I don't know what that means. I was persistent with my questions and he just left the room. At this time I don't know how much damage was actually done to my brain, if I have any new damage, and I have no idea what to take for my headaches. He said that I needed to go to my primary care for the headaches. He doesn't know what to do. I have talked to people on FB with moyamoya that have told me different medications that helped them after surgery and then I go to my primary with what they suggested. He checks out the medication and sometimes we try it. But He doesn't know much and he doesn't want to do anything that will hurt me.
Does anyone know of a specialist in Oklahoma that knows what he is doing or won't blow me off?

Hi KColeman and welcome,

It has to be overwhelming, frustrating and worrisome for you if you feel you are not getting answers to your questions about your symptoms.

I'm not sure there is a MoyaMoya "normal" however, many who have MM have complained of headaches and vision problems. This is the first I  have heard of the thyroid issue and I found the post from Dawn very informative and interesting.

My thought is if your neurosurgeon is knowledgeable enough to perform brain bypass surgery on a MM patient surely he/she is knowledgeable enough to answer your questions whether MM related or not. I would make an appointment and take all your questions in writing to this neurosurgeon and demand answers. If he can't answer your questions, ask him to refer you to someone who can. He's your doctor and his only job is to take care of you.

I don't know who your neurosurgeon is but a MM patient posted the name of a MM neurosurgeon in Tulsa at St. Johns named Dr. Patrick Han. If this neurosurgeon is not your current neurosurgeon, you may run into the same problem as before meaning since you were previously treated by another neurosurgeon, he may not want to see you. Regardless, it is worth a try and especially if you are not getting answers to your questions.

Please know that you are not alone and that we are here to support you in any way we can so please continue to ask questions and keep us posted.

Take care,

Lore   

Also I should add, my problems starting with pregnancy as well. Before pregnancy I was mostly normal besides high blood pressure.