Hi, i need your help. I. Suffering really bad. I have excruciating pain 24/7. HORRIFFIC tinnitus.
My ears is hurtins so band, and it feels like glass in my throat. Pain in neck and around eye. My symptomes has increased extremely these last weeks and its not liveable.
I had consultation with Dr Heim i. Germany the other day and he was very good, he explained thins very well and he listened to me. He. Went throug my CT scan with me too.
He said he would send me a report/note day after consultation.
The connection connection was 3 days ago and i have not recieved a report yet.
I tried to write to him via E-mail yesterday, asking for the report and some other questions questions but i have not reciecved any answear.
My doctors in Sweden refuse to send me a reffaral to the University hospitals, im pleading and begging for help. Im stuck. I cannot travel, i have no income and im homebound due to extreme hyperacusis and tinnitus and pain. Meds, hot and cold eont help. I tried everything under the sun, and i need to get to meet a surgeon i Sweden. I send Self refarrals but in Sweden only 1 out of 100 reffarals gets through. We need reffarals from our doctors in thr town we live in. And ive been fighting for reffarals for 3 years. Im worsening with time and its no more liveable. I need help. What can i do??!!
I’m so sorry that you’re suffering so badly…hopefully you’ll get the report from Dr Heim soon, and then you’ll be able to take that to your GP/PCP and ask again for a referral. We do suggest also that members print off ES research papers which support your symptoms (there’s some links in the Newbies Guide Section & a whole section of research papers), and take those to your doctor to push for a referral. I don’t know the Swedish medical system, is there any way if you don’t get anywhere with Dr Heim’s report to appeal or complain?
Have you tried all the doctors on the list in the Doctor Info Section? Here’s a link in case you’ve not had a look:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
We do have a section about advocating for yourself on the site too, there might be some useful info in there for you? here’s a link:
Latest Patient Self Advocacy topics - Living with Eagle
I hope that you can get some help soon, sending you a hug
I am very sorry for your pain & suffering & for the medical system you’re stuck with, @Maria87. I would keep contacting Dr. Heim’s ofc until the report is sent to you. Also check your spam folder to make sure it didn’t end up there. I’m glad you had a consult with him but am sorry he’s so far away & can’t do your surgery.
Have you tried resting/sleeping with your head elevated at night? That has helped a number of our members who have symptoms similar to yours. Another thing that might help is to get a prescription for a blood thinner such as Plavix or Brillinta (don’t know what the names for those are in your country). Taking a blood thinner has been very helpful for many of our members w/ your type of symptoms, but it can take 2 weeks before it becomes effective.
If you have pain management doctors in your country, maybe your primary doctor would give you a referral for pain management?
Here is the link for the Research Papers that @Jules mentioned: Research Papers - Living with Eagle